Social Care

Norman Lamb Excerpts

Wednesday 25th April 2018 Commons Chamber

[Barbara Keeley]

Indeed they cannot, and given the fragility in some of these private care providers, I wonder what on earth councils are supposed to be able to do.

[Norman Lamb (North Norfolk) (LD)]

Does the shadow Minister agree that Allied Healthcare looks like the tip of the iceberg? So many care providers are contemplating getting out of the publicly provided social care market or have already done so that we run the real risk of drifting towards a situation in which people with money can get good care privately but those who do not have the money could be left without.

[Barbara Keeley]

That is almost the situation we are in at the moment. It is worth thinking about why we seem to have this issue with Allied Healthcare, given that the problem has occurred in the last few days. It was reported that Allied Healthcare’s cash-flow problems had been triggered by increases in the national minimum wage for care staff and by an £11 million bill for back pay owed to sleep-in care staff. However, Allied Healthcare is not the only provider that is facing a large back-pay bill for care workers on shift. Learning disability social care providers have warned that they will have to withdraw services or close altogether to pay the bill for back pay, placing the care of even more people in jeopardy and putting care staff jobs at risk.

This trend of closures and contract cancellations is set to continue. A recent report into residential care by the Competition and Markets Authority painted a bleak picture of the current care home market.

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[Caroline Dinenage]

What I actually said was that the hon. Lady forgot to pay tribute to the social care workforce, who play such a vital part in our health and social care system. At the heart of their endeavours is the commitment to do all they can to support individuals and families throughout the country to live healthier lives with comfort, dignity and respect. However, it is absolutely right to begin by acknowledging that this sector has been through some really difficult times.

[Norman Lamb]

The hon. Lady is right to pay tribute to informal carers, and indeed to paid carers, but does she not feel uncomfortable with the fact that she and all her colleagues on the Conservative side legislated with us to introduce a cap, committed in 2015 to implement the cap, then abandoned it, thus abandoning the very informal carers she says she cares so much about?

[Caroline Dinenage]

We have not abandoned the cap. The Prime Minister said very clearly that we would continue to consult on the cap, and that will come forward as part of our plans for the Green Paper later in the year. We in this Chamber often hear about Labour’s recession and how it led to some hard decisions about public spending to get the country back on track, but we often forget—

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[Caroline Dinenage]

I hope my hon. Friend will not mind, but I want to make a little progress. The fund has helped to join up health and care services so that people can manage their own health and wellbeing, and live independently in their communities for as long as possible.

Another area where we have made significant progress is quality and safeguarding. The Care Act 2014 placed adult safeguarding on a statutory footing for the first time and established a national threshold that defines the care needs that local authorities must meet. This eliminates the postcode lottery of eligibility across England. Last year, local authorities in England advised more than 500,000 people how to access services to meet their care needs—this includes services provided by leisure, housing, transport and care providers, as well as voluntary groups.

Everyone is entitled to, and deserves, quality care, and we are working to improve the terms and conditions for people accessing care, to ensure that their rights are protected.

[Norman Lamb]

On the sleep-in allowance, is it reasonable to expect providers to fund these back-pay claims, given that at the time the liability was incurred commissioners and providers entered contracts on the basis of what the Government said was right in terms of the minimum wage? When the Government change the position, surely it is not fair on organisations, private or third sector, retrospectively to expect them to pay.

[Caroline Dinenage]

I understand and share the right hon. Gentleman’s concerns on sleep-ins, and will be addressing this a little later in my comments.

We have established adult safeguarding boards to help to protect vulnerable adults in our society from abuse or exploitation. They can also act as an important source of advice and assistance for those using the adult safeguarding system. This Government also introduced the toughest system of care home inspection in the world. Eighty-one per cent. of adult social care providers are good or outstanding according to the CQC, which is a testament to the many hard-working and committed professionals working in care, to whom we owe a huge debt of gratitude. The CQC regime is already having a positive impact and 82% of providers who are rated as inadequate go on to improve.

Regardless of that, there is too much variation in the quality of care. Neighbouring local authorities can have radically different success rates on care quality and we are taking steps to address that. We are working with the adult social care sector to implement Quality Matters, a shared commitment to take action to achieve high-quality adult social care for service users, families, carers and everyone working in the sector.

We welcome the Competition and Market Authority’s recent market study on care homes. It makes difficult reading, but we have welcomed it and as part of developing the Green Paper the Government are carefully looking at all the issues identified. What is more, we have published a package of measures to improve consumer protections in the social care sector after the CMA raised concerns about unfair consumer practices in homes, including the charging of unfair fees to residents and the lack of contractual and pricing transparency.

Those measures, which include working alongside industry to develop model contracts and supporting the CQC to better hold providers to account, aim to put the power back into the hands of residents and their families. We are clear, however, that if improvements are not seen we will look to change the law to strengthen protections so that people can be treated with the dignity and respect they deserve.

That leads me to the third aspect on which I want to focus. Ultimately, the social care workforce are the backbone of the care sector. We know that there are challenges and that is why we need to ensure that they are supported to deliver the best-quality care now and in the future. Part of that endeavour involves respecting not only the compassion and dedication of care workers but the vast range of skills they have. Alongside social workers, occupational therapists and nurses, we have many care workers who could benefit from or be inspired by new career progression ladders. We need to ensure that we have enough people within all those skilled roles to support individuals and families in living their best possible lives. That means ensuring that new routes into social care professions have as much variety and value as those developed by the NHS. Apprenticeships are part of that story. I am proud that in 2016-17 more than 90,000 social care apprentices began their training. That is up more than 40,000 compared with in 2010.

Of course, pay remains a constant and often emotive issue. Care workers deserve a wage that reflects the true value of their work. The national living wage is, in part, a reaction to that and the average salary for a care worker in the independent sector has gone up by 4%, with those full-time staff on the minimum wage seeing a pay rise of up to £2,000 since 2015. We are not complacent about the economic pressures faced by many in the system, but that is a good place to start.

A couple of hon. Members have spoken about sleep-ins and they are absolutely right to raise that. The Government are committed to creating an economy that works for everyone, ensuring that workers are paid fairly according to the law, including through the national minimum wage, but we recognise the pressure that has been placed on the sleep-in sector by historic liabilities for back pay. We are carefully exploring options to minimise any impact on the sector caused by this and have been engaging with the European Commission to ensure that any response would be legal. The Government will continue to work with representatives of the social care sector to strengthen the evidence base, building on the work we began over the summer. I will, of course, keep the House informed when we have made progress.

There are thousands of care workers in England, and we need many more, but it is true that we already have hundreds of thousands of carers out there—the unpaid hidden army of family, friends and community volunteers without whom the system would simply grind to a halt. We know that about 60% of us are likely to become carers at some stage in our lives. As it is today, one in eight of the adult population is a carer. That is why carers will be a fundamental part of the Green Paper. A sustainable settlement for social care will simply not be possible without focusing on the support we provide to them. Ahead of the Green Paper’s publication, we will shortly publish an action plan on carers, setting out a cross-Government programme of targeted work to support carers over the next couple of years.

Another principle that the Secretary of State has spoken about in the context of the Green Paper is control. We know that the greater control people have over their care, the better the outcomes. The only people who have a specific right to have a personal health budget are adults in receipt of NHS continuing healthcare or children receiving continuing care, which is why earlier this month we launched a consultation on extending the right to personal health budgets and integrated personal budgets to achieve better outcomes for those with the greatest ongoing social care needs as well as health needs. Those are some of the principles that are guiding the Green Paper. The goal is that, whatever a person’s age, they can be confident in our care and support system, not just for their own health and care needs but for those of the people close to them.

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[Dr Philippa Whitford (Central Ayrshire) (SNP)]

It seems no time since we were discussing this topic in the autumn. There are three groups of people who require social care. The first and the one commonly thought about are the frail elderly. There is expected to be a rise of 25% in those aged 85 and above between 2015 and 2025. By 2030, that proportion will have gone up 63%. Therefore, this requires us to make urgent preparations. Elderly people requiring social care need support and comfort.

The next group comprises those who are facing the end of life. They want dignity and, if possible, to be at home. If their family is looking after them, they want their family to have respite. The third group, as has already been mentioned in the debate, are younger people with disability. For them, it is the quality of their whole life, their mobility and their ability to participate in society. This last group is expected to rise by 9.2% between 2010 and 2020.

The five year forward view for the NHS and the amount of money requested were based on a game-changing approach to public health and a strong increase in social care funding. In actual fact, the opposite has happened and social care has lost almost £5 billion. Age UK says that 1.2 million elderly people have a social care need that is not being met—up 48% since 2010. In England, there has been a 26% drop in local authority-funded patients getting social care—that is 400,000 people —despite an increase in the ageing population.

One third of the elderly population are looked after by their family. Those carers have been paid tributes here, but they need a bit more than tributes; they need support and, in particular, they need respite, because many of them are literally working all the hours of the week. There will be 2 million carers who are themselves over 65. At the moment, carers’ allowance is only £60 a week; it is not even the same as the jobseeker’s allowance. In Scotland, this is one of the benefits that we now have control over, and it is rising to meet the level of the jobseeker’s allowance. That is little enough tribute to these people who, frankly, are saving the state millions.

Some 700,000 people were identified by Age UK as getting no help whatsoever. The Green Paper is looking at options in the long term, but the problem is that social care needs funding now, and it is estimated that the gap will be £2 billion by 2020. The social care precept has been identified, allowing local authorities to raise council tax by 2% to 3% over the next few years. That will bring in £1.8 billion, but it will be the richer areas that will be able to raise more money.

The better care fund has been put forward for the integration of health and social care, which we should all welcome. It is estimated to raise £1.5 billion by 2019-20. The problem is that some of it—£800 million—has been raided from the new homes bonus, and when we are not here talking about social care, people are at the Dispatch Box talking about the lack of housing and the lack of affordable housing. The problem is that if we do not get away from silo thinking, we will never reach a point of health in all policies.

At the same time, the local authority funding grant will be cut by £6.1 billion by 2019-20, so we are talking about giving with one hand and taking away with the other. As has been touched on, the cuts to local authority funding of social care are causing providers to close. In the first half of 2016, one third of local authorities had at least one home care provider—and half had a care home or nursing home—that closed due to becoming bankrupt. Anyone who has had a relative supported by these services will know how traumatic it is, particularly if it is a residential care home, for someone who may have lived somewhere for years suddenly to be moved to a strange place.

Perhaps some consideration should be given in the Green Paper to combining health and social care, and to looking at some of the different approaches in order to consider whether it is actually safer to provide social care publicly. In Scotland, we have been increasing the funding into the community in primary care, which will rise to 11% of the health budget, and in mental health, community care and social care. The aim is to rebalance the budget over the coming years to 2021 until half the health budget is going to the community. We have been funding integration joint boards since 2014, and the care, design and planning is by health and social care partnerships. This is already joining up health and social care, so that we do not have the situation that I experienced when I worked in a hospital, with the social care side and the health side bickering over where Mrs Jones would be best served. With integration, we should just be able to work out what is best for Mrs Jones.

[Norman Lamb]

From what the hon. Lady is saying, I get the impression that she rather agrees with me that the Government will never come up with a solution by focusing in their Green Paper on one part of one part of the problem—in other words, older adult social care. We need to look at the whole system across the NHS and social care.

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[Damian Green (Ashford) (Con)]

It is always a pleasure to follow the hon. Member for Central Ayrshire (Dr Whitford). I think the Opposition are quite right to want to debate this issue, and I also think strongly that the long-term solution to the problem of funding care—particularly for the frail elderly—will require cross-party agreement, so I hope that the debate can take place in a relatively non-partisan way.

I agree with the hon. Member for Worsley and Eccles South (Barbara Keeley) that radical change is needed, but I gently put it to her and her colleagues that in this long-term and complex area, indignation is not enough. Simply saying, “We must spend more money,” at the same time as saying, “But we must restrict the amount of money we take from other people,” which I understood to be the import of part of her speech, does not cut it.

[Norman Lamb]

Will the right hon. Gentleman give way?

[Damian Green]

I will certainly give way to the right hon. Gentleman in a moment, because I am about to mention him, but I am conscious of time.

There needs to be radical change, and the Green Paper needs to be radical and brave, because although in this debate, as in the wider debate on this issue, a lot of people talk about the fact that we live in an ageing society, we have not remotely adjusted as a society to what that means yet. Our population is projected to grow by around 10 million over the next 40 years. Almost all that growth comes from older people, and particularly those in the oldest age group. There are 5.3 million people over 75 in Britain today. That number will double to more than 10 million in 40 years. This is not just a looming problem; it is a problem today. There is a short-term and a long-term problem to solve. Frankly, in the spirit of non-partisanship, no party has a record unblemished by using social care as a political football. Phrases such as “death tax” or “dementia tax” make good copy and can affect the outcome of elections, but they do not help rational debate or, more importantly, help us improve the lot of the increasing millions of older people.

[Damian Green]

I think that the phrase “death tax” dates back to the previous Labour Government’s attempt to solve the problem in 2008, and I am sure that the hon. Lady used the phrase “dementia tax” during the last general election campaign. I hope that she will reciprocate my attempt to be non-partisan—so far it does not feel like it.

In the short term, the challenge for the Government is one of capacity and quality of care. Both problems will become more difficult in the long term. There is a range of things that we must do as a society before people need social care. For example, we need to keep people active for longer, we need to keep them in the workforce for longer, because that is good for their health, and we need to make changes to the planning system so that we can keep them in appropriate housing of their own for longer. In the end, however, the nub of the issue will be funding.

I want to address a point raised by the hon. Member for Central Ayrshire about joining the whole thing up with health funding. I agree with the broad thrust of the 10 principles proposed by the right hon. Member for North Norfolk (Norman Lamb), the hon. Member for Leicester West (Liz Kendall) and my hon. Friend the Member for Grantham and Stamford (Nick Boles) yesterday, particularly the idea of hypothecation, whose time is coming, but I think there is a problem with the idea of simply integrating all health funding and all social care funding.

It is a no-brainer that, organisationally, social care and healthcare need to be much better integrated, so that the individual is not trying to negotiate a very complex system, as the hon. Member for Central Ayrshire said. If we simply roll all the funding together into one pot, however—a sort of national health and social care fund—there are two serious dangers. The first is that social care takes over from mental health as the Cinderella of the health system, never quite at the top of the priority list when money is allocated. The second is that nobody feels that their contribution is related to their personal needs. The effect is that some of the sources of funding that could be made available—I agree with all those who say we need more funding—such as the £1.7 trillion of equity in residential property, of which more than two thirds is held by the over-65s, would be in danger of being permanently excluded, which I think would be a great mistake.

[Norman Lamb]

The right hon. Gentleman is making a thoughtful and reasonable contribution. He suggests that if there was a completely combined united funding stream for health and social care, social care would be relegated and disadvantaged. Of course, social care already loses out here and now—under Labour, the coalition and the Conservatives—compared with NHS funding. He complained about people just using indignation, and he made the case for cross-party working. Does he share my frustration that those of us who have tried to make the case for working together are constantly rebuffed by the Government? Will he join us in pressing the Prime Minister actually to engage in this, so that we can make it a reality?

[Damian Green]

I agree with the right hon. Gentleman that cross-party working is necessary. I gently point out that when I was a member of the Government, I met him and the hon. Member for Leicester West in a cross-party group to discuss precisely this—I was responsible for this policy area at the time—because I wanted to work with them. I thought that was the only way forward when I was in government, and I still do.

There is not time today to go into detailed funding proposals, but I think we have to accept that in the long term the funding of social care will need to be not only more generous than it has been in recent years, but fair, and seen to be fair, to every generation. I make the point, which is not often made in this context, that intergenerational fairness means being fair to older people as well as younger people. The view has taken hold in some circles that being over 60 means being over-privileged. I strongly challenge that view. The current generation of 50 and 60-somethings is the first in which people are often simultaneously trying to help their children with housing and their parents with care needs. This is not special pleading for a particular cohort. It is important to remember the obvious but salient point that young people themselves will grow old. Setting one generation against another is not only a bad basis for policy making but very short-sighted for the individuals most affected. Instead, we need to find a solution that will provide stability for decades to come.

I suspect that Members on both sides of the House would be united by the proposition that, however much better we get at using technology and housing design to keep people in their own homes for longer, the sheer growth in the number of people needing some kind of care will mean that we need to find more money. Precisely because that will be a problem for decades, not just for the rest of this Parliament, it is vital that the solution has cross-party support. Social care is a challenge for all parties.

The fundamental issue of whether social care should be a national or local service is often ignored. I am struck that 44% of Kent County Council’s budget goes on adult social care. That number will only rise. I am also struck that, in contrast with almost every other area of policy that involves local government, when I talk to local councillors about this issue they say, “Maybe this should be dealt with at a national rather than a local level.” They almost do not want it to be their responsibility any more. That is practically unique. I hope that Ministers will address that.

I urge Ministers to include staffing needs, the importance of which has been mentioned by Members on both sides of the House, in the Green Paper. Given what the wider situation will be post Brexit, we need to find ways of using technology, being much better at training care workers from the British population, and raising the status of care work. Labour Members mentioned that, and I agree. Looking at care purely as a business sector, it seems to me a classic case of somewhere that both technology and the human touch are vital. That combination is vital to providing high-quality care. To put it starkly, a robot may be able to do the lifting part of the work, but it cannot provide the equally necessary words of encouragement and comfort. I think social care will be an employment growth sector in the decades ahead.

Getting social care right is clearly one of this Government’s biggest challenges, as it will be for every Government for many decades to come. Over the next couple of years, we will have the chance to reset the debate so that it becomes calmer and more realistic. I know that my right hon. Friend the Secretary of State and the Minister for Care want to provide that calm and realism, and I hope that those of us contributing to this debate from the outside will live up to that, too. I very much look forward to the publication of the Green Paper.

Psychosis: Early Intervention

Norman Lamb Excerpts

Thursday 15th March 2018 Westminster Hall

[Norman Lamb (North Norfolk) (LD)]

I beg to move,

That this House has considered access and waiting time standards for early intervention in psychosis.

It is a great pleasure to serve under your chairmanship, Mrs Moon, for what I think is the first time. I thank the Backbench Business Committee for facilitating this debate on an issue of real importance and something I care about a lot. I will start with the origins of early intervention in psychosis and then raise my specific concerns about the progress made under the Government’s programme.

The approach dates back to the 1990s. In 1999, the Labour Government decided to give a significant national push to the development of early intervention in psychosis services. There was a mental health policy implementation guide of that date, and at that time the service was to focus on those aged 14 to 35, the years when psychosis was most likely to emerge. Once an individual started their treatment, there was to be a three-year programme. Critical to that was small case loads, so that the professionals in multidisciplinary teams could work closely with the individuals involved. It also involved family interventions. In a 10-year period, the national case load grew to 22,500 for what was widely seen as a valuable innovation.

The National Institute for Health and Care Excellence review of psychosis and schizophrenia in 2014 concluded that early intervention services,

“more than any other services developed to date, are associated with improvements in a broad range of critical outcomes, including relapse rates, symptoms, quality of life and a better experience”

for service users. I will return to that later, but an excellent annual report by the Southern Region EIP programme—for the south of England—specifically highlighted the impact on employment rates. When these services have proper investment, people who experience a first episode of psychosis can often be got into employment or education at far higher levels that has traditionally been the case with generic mental health services. That is an enormous prize to be won, when we think about quality of life and sense of self-worth, and indeed the cost of the condition to the state—so, lots of praise for the impact of early intervention services.

The Schizophrenia Commission said that early intervention services were the “great innovation” of the last 10 years, referring to multidisciplinary working, recovery ethos, co-production, working with people with the condition and achieving high standards. Professor Louis Appleby has described the service as the

“jewel in the crown of the NHS mental health reform because…service users like it…people get better”—

that is important—and

“it saves money”,

which is also critical.

On that point, we know from analysis that for every £1 properly invested in early intervention in psychosis, there is a return of £15 over subsequent years. Of course, one of the complications is that the return is not just concentrated in reduced use of the NHS, but comes through getting people off benefits and into work, bringing in tax revenues and reducing the number of people who end up going through the criminal justice system. For all those reasons—the impact on individuals and the extraordinary return on investment—this seems like a very good thing to do. However, as the NHS’s finances started to get tighter, there was clearly disinvestment in many places—it varied around the country, but it was happening.

My insight, as Minister responsible for mental health from September 2012, was that two particular elements of the way that the NHS works end up massively disadvantaging mental health. First, there are a set of politically demanding access standards in physical health, such as the four-hour A&E standard, the cancer waiting time standards and the 18-week referral to treatment standards. I do not know if it still happens, but in my time at the Department of Health, every Monday morning all the great and the good of the NHS sat around the Secretary of State’s table with a spreadsheet for every hospital in the country, looking at performance against those waiting time standards—in physical health. There was nothing for mental health—a complete imbalance of rights of access.

Then there is payment by results, which is actually payment for activity. It means that when patients get referred to an acute hospital, that hospital receives more income. There have been adjustments and reforms over the years, but the basic principle of incentivising activity in acute hospitals, which is not matched in mental health, combined with those exacting access standards, puts enormous pressure on the system to drive people into acute hospitals to meet those standards. That has the effect of sucking money into acute hospitals. Even during the last five to seven years of tight finances in the NHS, income for acute hospitals has continued to increase, but income for mental health and community services, which do not have those financial incentives, has stayed level or, in places, decreased.

I felt we had to start addressing those perverse incentives that were disadvantaging mental health, which amount to discrimination against people who experience mental ill health. Why should the treatment for someone who experiences psychosis be in any way inferior to the treatment of someone suffering from cancer or any other physical condition? In 2014, we decided across government to publish a vision called “Achieving Better Access to Mental Health Services by 2020”, a joint publication by the Department of Health and NHS England. The vision was to achieve comprehensive maximum waiting time standards in mental health by 2020—if only. The plan was to start with two standards: a six-week standard for access to the IAPT—improved access to psychological therapies—service and a two-week standard for early intervention in psychosis.

Critically, this was not just a two-week standard. When the Government report on whether they are meeting the standard, the focus tends to be on whether more than 50% of people start their treatment within two weeks, which was the standard set at the start. However, the standard was in two parts: to start treatment within two weeks and then to have access to the full evidence-based, NICE-approved treatment package. I will focus on that element because, depressingly, evidence shows that the system is falling far short of what it should be doing.

I want to focus on a freedom of information survey conducted over this financial year to try to establish the position across the country, looking not just at how long people wait but, critically, at whether they get access to the full evidence-based treatment package. The evidence that emerges from that survey is deeply disturbing. First, only 29% of trusts across the country stated that they were meeting the full NICE-approved, evidence-based treatment package. That is 29% on a standard that the Government say is being met. It is not being met. Even 29% is generous, because within that I think there were two trusts that were delivering the service only up to the age of 35, whereas the standard says that people up to the age of 65 should be included. Across the country, people are simply not getting access to the evidence-based treatment that we know works and delivers such an extraordinary return on investment.

I suppose I would put it this way. Can we imagine a cancer service saying to patients, “We’ll give you half the chemotherapy or radiotherapy treatment,” or, “I’m sorry, but there are no professionals available to deliver this part of your treatment”? There would be an outcry. It would be impossible for the Government to get away with it. The Daily Mail would be apoplectic. We know that the result would be that the standard would be met, one way or another—but here, day by day across the NHS, this standard for mental health is routinely being missed in a wholly unacceptable way.

[Luciana Berger (Liverpool, Wavertree) (Lab/Co-op)]

I thank the right hon. Gentleman for his important speech and his comments. Does he agree that there is a particular challenge in mental health, in that, in the wake of the Health and Social Care Act 2012, parity of esteem is enshrined in law, and we should be not just aspiring to, but achieving equality for mental health? This is just another indicator of how far we are from achieving that goal.

[Norman Lamb]

I totally agree. The 2012 Act is clear that there should in effect be equal treatment between mental health and physical health, but the evidence shows it is not being delivered. I fully understand that it takes time to get there with a new programme, but it is the way it is being implemented that gives me greatest cause for concern. I will focus on how we are falling short of that standard.

In the south region, there is a brilliant programme; it is always important in these debates to recognise that there are sometimes areas of fantastic practice that should be applauded. In the south of England, an amazing woman called Sarah Amani is the programme manager, and there is a full implementation programme. My argument to the Minister is that what is happening in the south should be happening everywhere. The programme produces annual reports, so it is completely open and transparent about the progress it is making and the obstacles that lie in its way.

I should have mentioned that our survey showed that across the country not much more than 50% of the total amount that NHS England says must be invested per patient is being spent per patient on delivering the service. If we are only spending a bit more than 50% of the amount we need to spend, it will fall short. What NHS England in the south is doing is admirable. It highlights that in many areas things have improved over the last year in its region, because it is driving that, but it also says:

“There is four-fold variation between the most and least funded EIP teams in the South of England.”

A fourfold variation would never happen with the cancer service. Furthermore:

“None of the providers have investment recommended to provide a NICE concordant package of care”.

In the best region of the country, no provider is meeting what it needs to spend to deliver the full package of care.

On workforce, the report says:

“Recruitment has been in part hindered by lack of extra investment and compounded by a national reduction in the number of qualified staff, particularly nurses”.

On intelligence, it says:

“Although all mental health providers use Electronic Health Record (EHR) systems, the majority (13 out of 16) of providers have yet to automate reporting, resulting in clinicians having to manually troll through whole caseloads for multiple data requests.”

In this day and age, that should not be necessary. There should be a system across the country to enable us to monitor performance against that important standard. When we go through the elements of the NICE-approved treatment package, such as cognitive behavioural therapy for psychosis, across the best region in the country there is enormous variation in the amount of therapy available to people. Some trusts provide what is required, but most fall short.

If we then look at comprehensive physical health checks, there is a target of 90%. We know that people with severe and enduring mental ill health die 15 to 20 years younger than other people, and that part of that can be addressed by having physical health checks. There is a Commissioning for Quality and Innovation standard established for 90% of people with severe and enduring mental ill health to have physical health checks. Across the south of England it is 56%, not 90%. Individual placement and support is a critical element of getting into work, with loads of evidence to support its effectiveness; 30% in the south of England have access to individual placement and support. Going back to what I have said, we must look at the results that flow if we make the investment. It is not only morally wrong but economically stupid to avoid making that investment.

I come now to the evidence on outcomes. The programme can show that where it does the work, hospital admissions are substantially reduced. The evidence is clear for anyone looking at the report to see. The report then looks at employment and education, where it is achieving substantially better rates of employment than generic mental health services, at 46%. Fascinatingly, it even analyses the relationship between investment and outcomes, so it can show that the more we invest in these evidence-based interventions, the better the outcomes. What a surprise: more people get into work, more people get into education and lives are transformed.

The report then talks about securing investment. Bear in mind that I am not quoting a politician but an internal document, led by the Oxford Academic Health Science Network:

“If the Five Year Forward View commitment of £40 million for EIP teams in 2015-16 had been honoured, EIP teams in the South of England would have seen a total growth in budgets of around £15 million. Instead, in 2015-16 the South region EIP teams saw a meagre increase of £3 million.”

That is £3 million instead of £15 million. The report continues:

“Between 2016-18, this trend of lack of investment has continued with a £3.5 million increase in EIP team budgets compared to the £15 million that was expected. Of the 16 providers delivering EIP in the South of England, none have the £8,250 investment per patient recommended to deliver a NICE concordant package of care. The South of England has a poor track record of investment in EIP services”.

That is the best region in the country. It leaves me feeling frustrated that such a prize—such an opportunity—is being squandered through lack of investment and lack of effective implementation.

I then look to the midlands. I have received an email from someone who is working on early intervention in psychosis in the west midlands, which reads as follows:

“There is wide variation in service quality, data reporting, outcomes, resourcing and resource allocation. This has not been made public, presumably because it is politically inexpedient to do so…Many trusts have chosen to disband EIP teams as a cost saving exercise (in Nottingham), or to allow caseloads to rise from 1:15 to 1:30”—

the whole essence of this approach is low case loads, so that people can get the personal attention that they need—

“not provide enough of the NICE mandated therapies, to not appoint psychologists or enough support workers, leading to expensive but ineffective teams…There is currently no governance or accountability in place, which enables the triangulation of proper resources, recommended service levels and outcomes.”

No governance or accountability in place across the midlands. That leaves me totally bewildered. Would this ever have happened when they implemented the cancer standards in the last decade? Of course not. Yet that is what has happened.

“There are systems in place in the north…and in the south…to provide the mechanism by which the accuracy of data, resourcing, services and outcomes can be verified and addressed…The Midlands region of England (west, central, east midlands, and East of England) are the only areas without any established regional development programmes and therefore have no reliable mechanism to prevent the inexorable decline of standards in EIP.”

That is from the frontline and, it seems to me, ought to be taken extremely seriously.

In a presentation given recently in February, in the west midlands, a west midlands clinician said:

“We are really struggling to provide an EI service that meets the NICE quality standards. Most of the focus of the Trust has been on meeting the two week access standard, which we have done most of the time. We did get some additional money, but it was non-recurring. Caseloads are way above the national average and we are really struggling”.

It then goes through the various elements of the NICE-approved programme.

“Referral rates are very high and we are discharging people sooner than we should.”

That should not be happening in a programme that the Government ought to be really proud of. It is a gem that ought to be nurtured and developed in order to get the very best from it.

When we published the survey that we did earlier this year, the response from NHS England was deeply disappointing. The official was quoted as saying:

“10,000 people each year are now receiving treatment through the early intervention in psychosis programme, with over three-quarters of patients getting treatment within two weeks…The analysis inevitably gives only a partial and dated picture of progress in these services.”

Well, I do not think that public bodies should be making misleading statements like that, because the analysis was full and complete across the whole country. It was not dated in any way. But this quote from NHS England—an anonymous quote—was designed to discredit the analysis. Rather than discrediting the analysis, it seems to me that a public body should be acknowledging the problem and addressing how it will try to solve it. This sort of denial approach is unhelpful. I wrote to the UK Statistics Authority, because I think it is inappropriate for public bodies to respond to analyses in that way.

Before I finish I want to deal with some asks of the Government. This is part of the five-year forward view. The Government have stated that it is a clear priority, so I want the Government to make it a priority. I want the Government to look at the implementation of this programme and to recognise that in some regions, nothing is happening to drive the implementation of these national standards. Personally, I think that it is intolerable that someone with psychosis in Dudley, in the west midlands, gets a raw deal compared with someone in the south of England, but that is what is happening now, because NHS England has no implementation programme in the west midlands, or across the entire midlands, including my own region—the East of England.

First, it needs sufficient investment. Given that there is a return on investment of £15 for every £1 spent, my plea to the Government is to make the investment because they will see a return on it, and benefit from improved employment rates and everything else. Secondly, address the staff shortages that are clearly—according to our survey—holding back services all over the place. It really means that Health Education England needs to create a credible plan to address the workforce shortages in early intervention in psychosis services, so that no area falls short because it cannot recruit the right people to deliver the service. Again I ask, would it happen in cancer? Of course not.

Thirdly, end the outrageous age discrimination. A quarter of the trusts that responded to our survey still have a limit of 35 on the service that is delivered, which means that anyone over the age of 35 is not getting access to the evidence-based treatment programme. Fourthly, get back on track with the two-week standard. We are also seeing that even though the standard is being met, the performance is deteriorating. The figures for early this year are worse than the whole of last year, suggesting increasing pressure on services around the country. That is important for the Government to address as well.

Fifthly, the standard applies not only to people who experience a first episode of psychosis, but to people who are at risk of psychosis; but many services simply say, “We don’t deliver a service to those people.” Of course, that is the best early intervention. If we can intervene before the psychosis has occurred, everyone benefits massively, particularly the individual concerned. In many areas, though, there is simply no service, despite the standard being very clear about what is required. Sixthly, the Government need, as I have said, to fund implementation programmes for every region, modelled on the plan and programme in the south of England, so that everywhere gets access to the same level of service.

Finally, our vision of comprehensive maximum waiting time standards in mental health by 2020 was published not just by Lib Dems, but by Conservatives. It was the Government’s vision. The point of it was to end such discrimination in a publicly funded service. It is not justifiable to have rights of access to treatment for physical health services, but not for mental health services. Why should people be left waiting, sometimes for months on end, for access to treatment? Treatment should be based on evidence and clinical need. But that vision, it seems to me, although included in the “Five Year Forward View”, is not being funded. There is no resource available to implement it. So my plea to the Government is: return to that vision. It was a good vision in 2014.

I will end by making this point: nothing that the Government could do would have a bigger impact on the wellbeing of our communities than to end the under-investment in mental health services. The best example, where the evidence is at its strongest, where you can reduce the flow of people into long-term support from secondary mental health services, is early intervention in psychosis services. There is an enormous prize to be had, but it needs investment and attention, which is lacking at the moment.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health (Jackie Doyle-Price)]

It is fitting that you are in the Chair for this debate, Mrs Moon, given your interest in these matters. I am grateful to the right hon. Member for North Norfolk (Norman Lamb) for securing this debate. It is always with some mixed feelings that I face him across the Chamber, not least for the reasons that the hon. Member for Liverpool, Wavertree (Luciana Berger) pointed out. However, this has been an extremely well-informed debate on both sides. I have not disagreed with very much of what has been said. It is great to respond to such a passionate debate, among people who genuinely care about the issue.

The right hon. Gentleman is absolutely right that improving access and waiting times for early intervention in psychosis must be a top priority. I will set out some of the things that we are doing, which I hope will reassure him of the direction of travel. He is rightly holding us to account on where we are. I quite agree that it is not good enough, and assure all Members who have participated in today’s debate that I am not complacent in any way about any of this.

First, I want to set the context. The hon. Member for Liverpool, Wavertree often challenges me that we have not achieved parity of esteem. I do not pretend that we yet have, but we have embarked on a genuinely transformational programme to raise the treatment of mental health issues to parity with physical health. However, that is essentially a cultural change, which will take time.

I want to set out that we do have a plan, to reassure the hon. Member for Stockton South (Dr Williams). We have now got to the stage in that plan where we have to be a lot more outcome focused, and really get to the grit of what is happening on the ground. As the right hon. Member for North Norfolk set out, there is widespread regional variation. We have to ensure that we are not only increasing access, but doing so in a consistent way. There are lots of challenges in doing that. People have raised the issue of the workforce. Obviously, we cannot magic up a workforce overnight, but there are plans to address that issue.

The right hon. Gentleman mentioned the Secretary of State’s weekly meetings where we interrogate health officials. I assure him that we are reviewing each individual mental health trust to scrutinise their performance, and the Care Quality Commission advises us on a weekly basis about that performance. I assure him that it is improving—it has massively improved, in fact—but there is still more to be done.

When we bring in standards and targets, the risk is always that we build in perverse incentives, and that institutions can game the system. Until the data we collect is embedded properly, there will be some risk of that, but we have to be on it. I acknowledge the right hon. Gentleman’s pivotal role in introducing those standards, and all his work in Government to drive this agenda. Having inherited his mantle, I look forward to him continuing to challenge me to deliver what he set in train.

Given that time is short, I want to home in on what we are doing to implement the waiting time for early intervention. The latest data that we have shows that we are exceeding the target of 50% for access to early intervention in psychosis services, with more than 70% of patients starting treatment within two weeks in the most recent quarter. I know that the right hon. Gentleman has rightly raised concerns about his freedom of information request on mental health trusts. Only 29% of 49 trusts that returned the request could expressly confirm that they were able to deliver the full NICE-concordant packages of care to their patients. To reassure him, the moment at which he made his request was at the start of the programme.

[Norman Lamb]

It was this year.

[Jackie Doyle-Price]

It was measuring the kick-start of the programme. I would hope that if the right hon. Gentleman repeated that in a year’s time, he would get a very different picture. I assure him that we are making progress, but I invite him to continue his scrutiny, because sunlight is the best disinfectant, as I often say.

The hon. Member for Stockton South asked whether we had a plan. We do. The issue is that our plan is often based on inputs and structures. It is only when we get the kind of analysis that the right hon. Member for North Norfolk applies that we can see whether an input is really delivering the outcome that we want. Using our tools of leadership, we are now ensuring that we are holding everyone’s feet to the fire to deliver those standards, and that we are actually implementing the plan that we have in place.

To give some detail on what that plan is, we are investing an initial recurrent £40 million per annum for EIP in clinical commissioning group baselines. That will rise to £70 million recurrently by 2021. I have heard the message loud and clear from all hon. Members that they want to be reassured that that money is reaching the frontline. We will go away and think about how we can best illuminate that. We are funding clinical networks in all regions to provide clinical leadership for implementation, and to support local efforts across the country. Those networks provide a great deal of support on sharing best practice, training and innovation. Quite often, sharing best practice can be the best way of driving improvement.

We are investing in a national team to co-ordinate regional teams and to support the monitoring of delivery through the regions. We are developing the data set to illustrate how much progress we are making and how the interventions are being delivered to people. That will allow commissioners and providers to prioritise how they develop and improve their services in line with the National Institute for Health and Care Excellence guidance. What is especially welcome is that there is now a recognition of the link between mental and physical health in NHS England’s work, although we have to continue to build on that.

The hon. Member for Liverpool, Wavertree rightly raised the issue of support for new mums. I am glad to hear that she has visited mother and baby units, as I have. Seeing the reality of that treatment shows how important that service is. We continue to prioritise investment in tackling post-partum psychosis. We are investing £365 million into those services, and are currently looking at issuing contracts for four new mother and baby units. She asked me some specific questions about the number of beds. I will write to her on that, because although it might seem like a simple question, it is slightly more complex. As she has rightly highlighted, it is a very vulnerable time for new mothers. We must ensure that we have services available across the country, as we still have some geographical discrepancies in the level of provision. I highlight the fact that we are putting more support for new mums in the community, based around the whole ethos of early intervention. I think that is extremely important.

I could say an awful lot more, but I promise hon. Members that all those who spoke in today’s debate have given me many things to think about, and I will reflect on them. I look forward to debating all these measures regularly. It remains the Government’s priority to deliver a step change in how we provide services for poor mental health. That is a cultural change, and it will take time. That is why we have it as a five-year forward view. We will make the investment in additional staffing resources to deliver that step change, but I have no doubt that all hon. Members in this room will continue to hold my feet to the fire to make sure that we deliver.

[Norman Lamb]

I thank the Minister for that response. I ask her to write to all hon. Members who have taken part in today’s debate, responding to each of the issues that have been raised, so that we get clear answers on them all. I would highlight two points. First, regional implementation plans are critical in making things happen. Secondly, a point was made earlier about the sustainability and transformation partnerships. If a significant proportion of them simply do not include a commitment to meeting the standard by 2020, that is basically a recipe for disaster. That has to be addressed.

I thank the other two Front-Bench spokespeople for their really excellent contributions. The point that was made about suicide was absolutely right: we can reduce the suicide rate through this programme in particular. I also thank the three Back-Bench contributions, which were all really excellent and well informed, and covered such important ground. In the Minister’s response, I would like her to deal particularly with the YoungMinds point about the calculation of how long people are waiting. I would like her to address the issue about only a quarter of STPs making that commitment by 2020, and the issue of post-partum psychosis that was correctly raised by the hon. Member for Liverpool, Wavertree (Luciana Berger).

Finally, I join others in expressing my appreciation for some incredibly inspiring staff who work in these services, and who demonstrate how lives can be transformed through doing the right thing with the necessary investment. The plea to the Minister is to make sure that the investment and implementation are there to take advantage of this opportunity.

Question put and agreed to.

Resolved,

That this House has considered access and waiting time standards for early intervention in psychosis.

Mental Health Services: Children and Young People

Norman Lamb Excerpts

Thursday 8th March 2018 Commons Chamber

[Steve Brine]

I do not know the specific example that my hon. Friend raises, but he may wish to take it up with the Under-Secretary of State for Health, my hon. Friend the Member for Thurrock. I did say that there was a 20% increase in clinical commissioning spend for children and young people’s mental health between 2015-16 and 2016-17. We have all been frustrated about spend reaching the frontline, and we have made it very clear that we expect it to do so. I am pleased to see progress in the right trajectory.

[Norman Lamb (North Norfolk) (LD)]

These damning findings come three years after we secured £1.25 billion extra over a five-year period. We know that that money has fallen well short of what was committed to three years ago. Will the Minister absolutely commit to make good the shortfall of money getting through to children’s mental health services?

[Steve Brine]

I thank our former ministerial colleague for that. We have not exactly been shy in investing in this area, both when he was a Minister in the Department and now. We have made £1.4 billion available over the five years to support the transformation of services—and the extra £300 million. He says this is a damning report, but we must remember that it is a report we commissioned. We do not hide from these things. The last time I responded to an urgent question from the hon. Member for Worsley and Eccles South (Barbara Keeley) it was on a CQC report on social care. We must not hide from these things and we do not want to bury our heads in the sand. We must recognise and build on the examples of good person-centred care that are taking place in our country at the moment, and that is why we are putting the money behind it. The right hon. Gentleman is right to raise this issue.

East of England Ambulance Service NHS Trust

Norman Lamb Excerpts

Friday 2nd February 2018 Commons Chamber

[Norman Lamb (North Norfolk) (LD)]

I want to start by making it clear that I recognise absolutely that there is intolerable pressure generally across the emergency care system, and there are serious issues that have to be addressed particularly around handover delays, and I include within that the sense that there is quite a variation from one hospital to another and we need to understand why it appears as though some hospitals are more successful than others in addressing this.

I also want to make it clear that it is not my intention to focus on the adequacy of funding of the NHS in this debate; that is for another occasion. The question I want to address here is whether the East of England Ambulance Service NHS Trust is doing all it can with the resources it has.

I also want to place on record my understanding that we have incredibly committed clinical staff in this trust, and I want to express my gratitude to them; they are often working under intense strain, frequently dealing with extraordinarily distressing and sensitive personal situations, and they do so admirably. I should also express my gratitude to the Minister for meeting me this morning to hear more about my concerns, and for the seriousness with which he listened to them.

My reason for calling this debate is that I met a senior employee of the trust, who is a whistleblower in effect, and who came to me with deep concerns about what is going on in his service. I found the testimony to be very credible and I took the concerns extremely seriously. I have seen a list of 40 cases of potential patient harm associated with delays in response times, including 19 cases where patients lost their lives.

[Fiona Onasanya (Peterborough) (Lab)]

Simon and Michelle came to see me about this very issue. Their 999 call was downgraded, and as an unintended consequence, they lost their baby girl, Darcey, in what appears to be one of a catalogue of failures in the interaction between the ambulance trust in the hospital.

[Norman Lamb]

I am grateful for that intervention, and the hon. Lady is doing exactly the right thing in pursuing that matter on behalf of her constituents. They deserve answers to the concerns that they have expressed over that tragic case.

Beyond the list of 40 cases, I understand that a further 120 incidents of potential patient harm and a potential 81 patient deaths have been associated with delays over this period of time. One case, which is not on the list of 40 that I have seen, concerns a constituent who does not want her family’s name to be mentioned. She has written to me as follows:

“My Mum had been ill from Boxing Day and finally on New Year’s Day she deteriorated to such a level that I had to call an ambulance. When I first logged the call they advised me that as she was still breathing we would have to wait an hour before a team could get to us. Mum’s health deteriorated further to a point that I had to place another call to the ambulance call centre as she had suffered a stroke and then a heart attack and had stopped breathing. My sister and I had to perform CPR whilst waiting for the crew. When they finally arrived, although they tried, they said that there was nothing they could do and she was pronounced dead.”

I should say that my constituent commends the crews that attended for the work that they did.

[Clive Lewis (Norwich South) (Lab)]

I have great respect for the right hon. Gentleman for bringing this debate to the House today. Does he agree that this is due to a systemic crisis, rather than to individual failings? Since publicising this issue in the Chamber some weeks ago, I have been inundated by cases of people from across the country, not just the east of England, who have experienced similar failings in the ambulance service. We must make it clear that this is not just about blaming managers at the East of England Ambulance Service NHS Trust; it is also about accepting that the Chancellor of the Exchequer and the Secretary of State for Health bear responsibility for what is happening to ambulance services across the country.

[Norman Lamb]

I thank the hon. Gentleman for his intervention. Ultimately, the Government are responsible for keeping the people of this country safe, with emergency services that work effectively. That is ultimately what we are debating.

This is not something that just happened over the Christmas and new year period. Just last Friday, the 91-year-old mother-in-law of some close friends of ours in south Norfolk fell on to a cold stone floor. They called 999 at 8.45 pm, but the ambulance did not arrive until 4 am. It left at 4.45 to go to the hospital, but she had to wait in the ambulance until 6 am. She then had to wait on a trolley for two more hours. That is intolerable; she is 91 years old. This could happen to a family member of any of us; we all have a stake in this. We have to recognise that it is intolerable. Another constituent has told me about his 92-year-old mother who broke her leg. She had a nine-hour wait, during which she developed hypothermia. Then a car arrived, rather than an ambulance, and she had to wait another 40 minutes for the ambulance. That is simply intolerable.

I am told that, according to the assessment of many people internally, the service over that period was unsafe, and that no assurances have been given that the trust would be able to provide a safe service in the future, if there were to be a period of very cold weather or a flu epidemic, for example. That is a matter of serious concern to the people of the east of England. On several occasions during the period, there were more than 200 999 calls that could not be responded to at the moment they came in, because no crews or ambulances were available.

The Care Quality Commission told me this morning:

“This is a service that is in crisis”.

It also said:

“Patients are at risk”.

However, the CQC appears to have confidence in the leadership of the trust. I fear that it is being complacent in its attitude, and that it is not taking seriously enough the number of patient harm incidents that I have referred to. I have deep concerns about whether any family member of mine, any constituent, or anyone else across the east of England who has to rely on the service will get a service that will protect and safeguard them in their hour of need. I am told response times in North Norfolk are dire—not just that the trust is not meeting the target but that the long tail beyond the target is deeply concerning. I do not have the assurance that we need.

The concerns appear to have been recognised because a risk summit was convened. According to the official guidance, a risk summit is normally triggered

“if there are significant and serious concerns that there are, or could be, quality failings in a provider or system.”

The guidance further states that a risk summit should be called

“only as a last resort”.

Well, we clearly have a last resort here.

My central plea to the Minister is that we need an independent governance review, and I would like a specific response to that because I genuinely believe it is needed, but I would like to raise the following specific concerns. I understand there was a £2.8 million underspend in the trust in month nine of the financial year. How can that be justified? Is the Minister satisfied with that?

I am told that more than 100 staff have been recruited but are currently on a waiting list to start. Some have been on the list for more than a year. I am told there has been no recruitment in Norfolk, which is where response times are at their worst. Staff have left without being replaced.

There was an independent assessment in August 2016, never published, by Operational Research in Health, which said that hundreds more staff are needed across the region to run a safe service. Why has that never been implemented? The only area where there has been recruitment of late, according to adverts online, is in Bedfordshire and Hertfordshire, the best-performing areas. The impression I am left with is that it is all about hitting the national target, rather than ensuring that all parts of the region are safe.

Interestingly, the online job advert has just been changed to include other counties, but the public board papers say there are no vacancies in those other counties. At the same time, lots of additional management posts have been created. There is a new deputy director of human resources, an associate director of HR, a deputy director of strategy and sustainability and other deputy director posts.

The trust has also doubled its spend on lease cars, which in November 2017 was up from just under £500,000 to nearly £1 million, with directors and deputy directors making no contribution. I am told that directors and deputy directors drive around in Jaguars, Range Rovers, Mercedes and Audi A5s. Is the Minister comfortable with that? The policy allows discretion by the director but, with a service that is under such strain, for me it is a question of judgment and culture in this organisation.

I am told there was a very late sign-off of the plan for the Christmas and new year period following the letter from Professor Keith Willett, so the trust was not better prepared than ever, which is the Government’s mantra. Did meetings take place between the trust’s chief executive and the chief executives of hospitals where the delays were at their worst in the run-up to the Christmas and new year period? We have a right to know.

The trust issued a statement that it had not been made aware of any patient safety issues internally, but that is not true. I have a copy of an email from a constituent to the chair of the trust on 9 January specifically referring to the fact that someone in the trust had come forward to raise patient safety concerns. Is that acceptable? It is a wholly misleading statement to the public. Does the Minister feel comfortable with that?

Is it acceptable that neither the chief executive nor the chair of the trust has been prepared to be interviewed publicly since the new year? When there have been so many patient safety incidents, surely they should be being held to account for that service on television and radio.

There has been a big issue about director presence over Christmas and new year, with claims and counter-claims having been made, and we need to get to the bottom of it. Will the Minister ensure that we are told who was actually on duty all the way through the Christmas and new year period? By that, I mean on duty and in the region—not at home in some foreign country—leading the service in this region. It was new year’s eve before REAP 4— Resource Escalation Action Plan 4—was declared. That is the highest level. Many people in the organisation felt it should have happened before that, so that mutual assistance could have been secured from surrounding trusts. Why did that not happen?

A report was commissioned last year from SSG Health—a “phase 2 report”—on how the trust can save money. It has never been published. I have tried to get hold of it under freedom of information but my request has been refused. Will the Minister ensure that it is now put into the public domain? Given the scale of the crisis, which the Care Quality Commission has acknowledged, we have a right to know what that report says and what is being done about it. It cost more than £500,000 for this report on how to save money. That shows the scale of the culture problems that we face.

On late finishes, staff regularly work 14-hour to 15-hour shifts, but no data has been available from the trust to the staff side since February last year. In September, the trust removed the staff support desk, which was there to provide support to staff who were working very long shifts. No data has been made available by the trust to the staff side on “tail breaches”—these very long delays in getting to patients. The trust claims an exemption under FOI. That is symptomatic of a trust that fails to be open with staff representatives and with the public it is supposed to be serving. A constituent of mine who has worked for the trust has been declared “vexatious” for making FOI requests about patient safety issues, for goodness’ sake. How about that for the culture of this organisation! The matter is now with the Information Commissioner.

I believe, and I think the Government believe, that trusts should be entirely open; there should be an open culture, encouraging staff to speak out about patient safety issues. Will the Minister send a clear message to end the embargo on FOI requests, so that we can find out what is going on in this trust, rather than have it being kept from the public gaze? This is an issue of the utmost concern to the people of the east of England. People in this region need reassurance that they will be cared for and that the response will be there when they need it. It is frightening for anyone, but particularly for older people, to wait interminably for an ambulance to arrive when a loved one is very ill and potentially dying. This is intolerable in a civilised society and ultimately it is the Government’s responsibility to ensure that there is a service there to serve the people of this country.

[The Minister of State, Department of Health and Social Care (Stephen Barclay)]

First, I wish to thank the right hon. Member for North Norfolk (Norman Lamb) for securing this debate. I recognise the concerns raised about the East of England Ambulance Service, including questions about whether delays to ambulance responses have caused additional harm to patients over the Christmas period, and his concerns about the leadership of the trust and the role of the CQC. I assure him that I am taking these allegations seriously, both as a Minister and, as he knows, as a constituency Member of Parliament in the East of England. I have put in place a number of actions to immediately ensure improvements to services are put in place by the trust.

As the right hon. Gentleman will be aware, a risk summit was held this week, on Tuesday 30 January, which examined whether the service is operating effectively now and sought to put in place any required actions to improve it going forward. I have spoken personally to the chief executives of NHS England and NHS Improvement, and to the chair of the risk summit. I will expand on the findings further, but I wish to emphasise that a wide-ranging plan of immediate actions has been put in place to address the issues that were identified. Details of the action plan have been published today and a progress meeting in two weeks will be led by NHS Improvement and NHS England. I agree with the right hon. Gentleman about the accessibility of the trust leadership in respect of the chief executive and the chair making themselves available for media bids. I have communicated that to the trust.

I recognise that the right hon. Gentleman is concerned about the overall approach of the trust’s senior management and about the level of external assurance from the CQC. In addition to the action plan identified at the risk summit, which was attended by other external parties including NHS England and NHS Improvement, I have gone further by asking NHS Improvement’s executive medical director, Kathy McLean, to provide her own assurance to Ministers in the coming week. That will assess the immediate steps taken to address the concerns expressed in the House and whether actions suggested in the earlier external reports have been implemented. Alongside that, I am happy to have further discussions with the right hon. Gentleman about his specific point about the Association of Ambulance Chief Executives.

I am assured that, where there were serious delays in response times, the trust has identified all potential causes. Following an initial investigation, it is examining 22 such cases through the serious incident procedure. That will ensure that individual cases are properly investigated. The hon. Member for Peterborough (Fiona Onasanya) mentioned a specific case and we are determined to ensure that that is addressed. I am happy to discuss that with her further.

In terms of the report mentioned by the right hon. Member for North Norfolk, which was previously commissioned for the trust, I am happy to update the House and say that the report should be published as soon as possible. Again, that is an issue I will follow up.

Let me turn to the specific actions arising from the risk summit. I am advised that actions to deliver immediate service improvements are being taken forward under the following themes: ensuring that the trust has sufficient capacity for the rest of winter; the effective implementation of handover delay policy with hospitals; the proper execution of REAP level measures; staff access to executive leadership; sound escalation procedures; bringing in independent assurance around the serious incident investigation procedures; working with CCGs and other stakeholders to manage demand for ambulance services; and the full exploitation of emergency service collaboration with police and fire. As a result of those actions, to help to manage winter demand the trust will put eight additional vehicles on the road each day until Easter, with immediate effect.

Improvements will also be made to the trust’s adherence to the national REAP guidelines, and actions will be taken to moderate service pressures, which will allow the trust to de-escalate to REAP level 2. The trust is also working with hospitals to ensure adherence to the national guidance on handover delays, particularly where ambulances waiting to hand patients over receive a new 999 call, which was a specific point that the right hon. Gentleman raised. I also assure him that we will work closely to monitor the outcomes of the work to ensure that safe, high-quality ambulance services continue to be provided to his constituents.

The right hon. Gentleman has also raised concerns that the trust has underspent on its funding while putting in place a hiring freeze. The trust has worked to grow its frontline workforce, fielding 700 more staff since 2014-15, and has achieved a low rate of staff turnover. However, like the right hon. Gentleman, I want further assurance that the trust’s staff plans are sufficient to meet the demands facing the city. I will raise that in my discussions with NHS Improvement.

Substantial local initiatives are under way to improve the trust’s performance. Importantly, more money is being invested in the service: its funding was increased by £90 million this year—an increase of 10%—and it will further increase by £27 million over the next two years. Other significant actions include the deployment of hospital ambulance liaison officers in emergency departments to help reduce the incidence of handover delays, and an independent review of the trust to ensure that it has the appropriate resources and processes to deliver against its performance standards. I will expand on these measures further, but it is worth considering them in the context of wider national initiatives to improve ambulance performance more generally.

As I stated in the House on 22 January, the NHS is busier than ever and the ambulance service is experiencing unprecedented demand, dealing with more than 11 million calls every year. There were almost 7 million face-to-face responses from the ambulance service in 2016-17, which is a 14% increase over the past five years. Under Sir Bruce Keogh’s review of the NHS urgent and emergency care system, ambulance services are being transferred into mobile treatment centres, making much greater use of “hear and treat”, which is treating patients over the phone, and “see and treat”, which is treating and discharging patients on the scene. In December, the East of England Ambulance Service NHS Trust resolved three out of 10 incidents on the scene without transporting a patient to A&E, freeing up resources to respond quickly to the patients with the most urgent needs.

Additionally, in July last year the Secretary of State approved a revision of operational and performance standards for ambulances following the ambulance response programme. These improvements have now been rolled out to all mainland ambulance trusts in England. The evidence behind this new framework is extensive, covering data collected from more than 14 million emergency 999 calls. The evaluation considered a number of key issues for the east of England, including prioritising responses to the sickest patients while helping to reduce long waits for ambulance responses, and ensuring that patients receive the most appropriate response for their condition. That being said, I do recognise that the trust’s performance against these standards needs to improve.

As I mentioned earlier, NHS England and NHS Improvement are working with the trust to help it to adapt to the new performance framework, and have also undertaken an independent service review of its operations. This review covers the trust’s demand and capacity modelling, staff recruitment and training, and its approach to pricing and contracting in order to enable it to meet the new ambulance response standards. The detail of this work is being finalised and will be presented to the trust board meeting in March.

With respect to the ambulance workforce, we are taking significant steps across the country to support staff. Compared to 2010, there are over 3,000 more paramedics in England. We agreed in December 2016 that NHS paramedics will be re-banded from band 5 to band 6 on the NHS pay scale. This moves paramedics significantly up the NHS salary structure, and helps to ensure that we are better able to recruit and retain staff in the future.

We are also working to support the trust in addressing issues with patient handovers to hospital trusts, which have been an issue in parts of the east of England. We are clear that handovers must take place within agreed timeframes, and we are supporting hospitals to ensure that improvements are made. As I noted earlier, the trust is working with hospitals to ensure adherence to the national guidance on handover delays. It has also deployed patient safety intervention teams to hospitals to undertake patient cohorting where significant hospital delays arise, as well as placing hospital ambulance liaison officers in emergency departments to help ambulance crews to respond more quickly to incoming calls.

[Norman Lamb]

I am conscious that the Minister is coming to the end of his contribution and that he is not able to respond, here and now, to all the issues I mentioned. Will he undertake to write to me on each and every one of the specific concerns that I raised, including the call for an independent governance review, so that we can get to the bottom of exactly what is happening?

[Stephen Barclay]

I am very happy to give the right hon. Gentleman that commitment. Like me, the right hon. Gentleman wants to get a grip of this issue to ensure that it is addressed. I very much hear the concerns that he and other Members have raised. I hope that he can take some comfort from the series of actions that have already been put in place, including the risk assurance and the commission to Ministers, that signal the seriousness with which this issue is being addressed.

I would like to restate that we are taking the right hon. Gentleman’s concerns seriously. I have outlined the measures already taken as a result of the risk summit, and I will closely monitor the situation to ensure that these actions are delivered on. We have also discussed the wider initiatives that we are undertaking to improve ambulance services nationally, as well as specific local actions to ensure that patients receive the highest quality of care.

Again, I thank the right hon. Gentleman for introducing this debate. I hope that he, and indeed other Members who have serious concerns about this issue, will continue to work with me on a cross-party basis to ensure that all our constituents get the service that they rightly expect.

Question put and agreed to.

North West Ambulance Service

Norman Lamb Excerpts

Monday 22nd January 2018 Commons Chamber

[Tony Lloyd (Rochdale) (Lab)]

As you will be aware, Madam Deputy Speaker, I applied for this Adjournment debate on North West Ambulance Service some time ago. By coincidence, I had a phone call today from my constituent, Ron Gerner. Ron and his elderly wife, Pat, had to ring for an ambulance on Boxing day at 9 o’clock in the evening. It was 5 o’clock the following morning before the ambulance arrived to take a very sick lady to Fairfield General Hospital. She arrived at Fairfield not very long after 5 o’clock in the morning. It was about 2 o’clock in the afternoon before she was finally admitted to a ward. Since that time, sad to relate, Pat’s health has deteriorated and she is now due to move to Springhill hospice. She was due to be picked up by an ambulance at 11 o’clock this morning. The ambulance did not arrive. We are now told that it will arrive at 8 o’clock tomorrow morning.

I say to the Minister and to the House that an elderly couple like Ron and Pat who are going through a very difficult time in their lives should be treated massively better. They should be cosseted, not face the kind of outrage that has now affected their lives. They are happy for me to talk about this because, not unnaturally, Ron is livid on his wife’s behalf. I am livid on Ron and Pat’s behalf, and indeed on behalf of the whole of their family.

It is something of an irony that when I wanted to illustrate the failings of North West Ambulance Service, that phone call, totally unsolicited, came into my office this evening. The sad reality is that North West Ambulance Service is a shambles. That, of itself, underlies something much more serious—as a shambles, it is of course putting people’s lives at risk. This is simply unacceptable in modern Britain.

It is worth recording that for the highest category of calls, of which 75% should be answered within eight minutes, the mean time in the north-west is 11 minutes. For the second category, for which central Government and the NHS nationally decided to lower the limit so that there is now an 18-minute tolerance for 75% of calls, the mean time in the north-west is 44 minutes. Those are calls that are serious and certainly cannot be dismissed as trivial. If the mean time is 11 minutes for the most serious cases and 44 minutes for the still very serious cases, what happens with the cases that are massively worse than that? Something is going very wrong.

It would be tempting to say that this is something to do with the winter crisis, but it is not. North West Ambulance Service, apart from a brief flurry of activity, has not hit its targets since 2014. Just very briefly in the summer of 2015, things seemed to have got back up to the norm, but at the moment, in about three out of four of the most serious cases, it is missing the target that has been established at national level. That is putting people at risk.

What is going wrong? We can say some fairly straightforward things. I am bound to point out that the national health service has made decisions that themselves make it more likely that the ambulance service will come under pressure. The decision to close the Rochdale accident and emergency facility some years back inevitably means that instead of being taken to the local hospital, people in my constituency have to travel that little bit further afield. That of course puts pressure on an ambulance service that is already under pressure elsewhere.

It is a matter of practical fact—the Minister may want to confirm this, or he may have different figures, but everything I have seen indicates it—that the North West Ambulance Service is the worst performing ambulance service in England in terms of its ability to hit its targets.

[Norman Lamb (North Norfolk) (LD)]

A lot of things the hon. Gentleman is talking about in the north-west appear to be reflected also in the east of England. Does he share my view that it is really important for Ministers to send out the clear message to staff in these organisations, first, that they are valued and, secondly, that they must feel able to speak out—in other words, to whistleblow—if they are worried about patient safety? The last thing we want is for pressure to be put on staff to make them feel that they are unable to speak out about such concerns.

[Tony Lloyd]

The right hon. Gentleman is of course absolutely right on both counts. First and foremost, we must value the paramedics and the technicians who make our ambulance service work, and nothing whatever of what I am saying is critical of them. They joined the service to help save lives and to get people into our national health service, but this is of course the reality, and I am grateful to people who have spoken privately about what is going on. Whistleblowers are really important.

To make another point briefly, I wrote to the North West Ambulance Service about its failings—I will come on to the particular failing later—in the middle of August, but I had to raise the issue on the Floor of the House to get an answer two and a half months later. Quite frankly, the answer is almost not worth the paper on which it is written because the climate of secrecy—the climate of “Mind your own business,” which is said even to Members of Parliament—is very unhealthy. I hope that the Minister will take that on board.

[Tony Lloyd]

Absolutely. My hon. Friend’s point speaks for itself. We need a climate of openness and one in which people who work in the service and care about it can feel emboldened to speak out. The law actually protects them, so it is outrageous that a public service should put people under such pressure, and it is outrageous that a Member of Parliament should struggle to get transcripts relating to her own constituents. There is a lot going wrong.

The reality—the Minister may want to reflect on this—is that over the past six years, the demands in the highest category in the north-west have gone up by some 50%. We can discuss what that means, but at the same time the number of paramedics has increased by only 16% and the number of those in technician grades by some 28%, so the staffing simply is not keeping pace with the change in demand.

There is something worse. I have already mentioned the fact that we have seen the closure of A&Es and the increased pressure that those closures inevitably bring, but on top of that we face the daily reality—again, this is not part of the winter crisis—that our ambulances and our skilled paramedics are having to wait outside our hospitals in some cases for hours on end. Let me give the House a few illustrations. At one of our local hospitals, Royal Oldham—an important hospital for my hon. Friend the Member for Heywood and Middleton (Liz McInnes) and me—an ambulance had to wait for three hours and 46 minutes before it could discharge one of its patients on 7 January. At North Manchester—again, one of the hospitals that Rochdale borough depends on—an ambulance took eight hours and 50 minutes to do so on 3 January: somebody waited in the back of an ambulance for eight, or nearly nine, hours. At Fairfield, which is also one of our local hospitals, a figure of over 10 hours was recorded in December.

Something is going fundamentally wrong when people are waiting in the back of an ambulance for the care that they ought to be getting inside our hospitals. However, something else is going wrong, because such cases mean that the skilled staff in those ambulances cannot be out on the road going to the next job where they are needed and to the one after that. One of the paramedics—a whistleblower, as it were—with over two decades of service in our ambulance service told me that when he started, he typically went to nine different jobs during a working shift. It is now sometimes as few as three or four jobs a night, because he and his colleagues spend their time waiting outside hospitals, for reasons that have already been identified.

I know from the different roles I have had that things have been going wrong for years with the quality of our ambulance services. When I was a police and crime commissioner, the police would complain to me that, when attending a situation, they would often be forced to wait because there was a clear need for an ambulance, and sometimes they would have to deliver people to hospital because the ambulance could not arrive in time. The police certainly do not say that critically of their colleagues in the ambulance service, but they know that they are not the right people to be charged with carrying sick people to hospital.

The Minister has probably been told that one of the palliatives in the system is the series of green cars staffed by paramedics who are first on the scene. If we had a properly funded, properly staffed system of ambulance provision across the north-west, that might be a very intelligent design, but it is a very stupid design when paramedics are in short supply, because if the job the paramedic attends turns out to be really serious, they cannot operate as a paramedic, because the green cars are not ambulances; they are simply a means of transit. The paramedic then has to ring for an emergency ambulance. A paramedic told me that he attended a cardiac arrest where the patient was in a serious condition, but he had to wait with them for 45 minutes, without being able to give more than basic attention, before the ambulance arrived. Such situations should not be routine, but paramedics tell me that they happen regularly, so we know that things are going wrong.

I want the Minister to consider one issue particularly seriously. When Rochdale A&E was closed, a commitment was made to the people of my constituency that there would be a paramedic on every ambulance coming from Rochdale. We have found out that that is simply an illusion. My constituents were lied to—I think I can use that term, Madam Deputy Speaker—because there was no circumstance under which that promise could ever have been delivered. We were told at the time, “Don’t worry. You’ll have to travel a little bit further, but you’ll be travelling with highly skilled paramedics.” One in four of the most serious category calls across the north-west do not have a paramedic in attendance, because we do not have enough paramedics in the service.

The story I am telling is a seriously unhappy one. It would be unhappy if this were some kind of intellectual game, but as the experience of Ron and Pat Gerner shows, this is about people’s lives. It is about people, sometimes at the most difficult point in their lives, who are anxious and concerned about what will happen next at a time of individual and family crisis. This does matter and it matters enormously that something is done about it.

I say to the Minister that certain things that need to be done almost leap off the page. First and most obvious, we need a better handover system from ambulances to A&E units. It is not beyond the wit of health professionals to come up with something better. If we are saying that one of the skills shortages in the health services is that of paramedics, we must use them intensively. That is what the paramedics want. They do not want to be sat in stressful conditions outside a hospital. We need to better deliver the service. Ministers have to drive that through. They have to seize this important opportunity.

[Norman Lamb]

I think what the hon. Gentleman is saying is that the way in which the system works at the moment is a grossly inefficient use of highly skilled people. They are left waiting with and caring for patients outside a hospital before they can hand them over, and sometimes they have to wait with a patient for an ambulance to arrive. If we look at the total time during the day that paramedics are left waiting with patients, rather than doing what they are skilled to do, we will see that it is an extraordinarily inefficient use of that skilled resource.

[Tony Lloyd]

Absolutely. If this is one of the skill shortages at the crisis end of our health service, let us begin to use the paramedics much more intelligently than we do now. The Minister will be delighted to know that I will come on to money, but this is not about money; it is about intelligence. I am bemused by the incompetence of the management of the North West Ambulance Service, who do not seem able to give me even semi-credible answers to this crisis. Ministers now need to seize the opportunity—and possibly even seize the throats of those who manage the process—to make them begin to deliver.

Nothing I have said tonight is meant in anything other than absolute admiration for the people who are in our ambulances, trying to make the service work. They live very stressful lives. The Minister will know that across the country—the north-west is as bad as many places—the amount of down time because of paramedics and ambulance technicians being off work from stress-related sickness is high and growing. That is symptomatic of a system going terribly wrong. Let us reform it. Let us make sure that we put the quality of life back into their jobs, so that they can put the quality of life back into those they care for.

--- Later in debate ---

[The Minister of State, Department of Health and Social Care (Stephen Barclay)]

I congratulate the hon. Member for Rochdale (Tony Lloyd) on securing this debate. I know that he visited the North West Ambulance Service Trust in 2017 and has a long-standing interest in this area. He comes to the House as one of its most senior and experienced Members and a former chair of the parliamentary Labour party. I am happy to meet him to discuss his remarks in more detail in order to work collaboratively to take this forward, given the concerns he has set out, particularly concerning the delays that Ron and Pat experienced, and how we can address them.

I absolutely agree with the sentiment expressed by the hon. Member for West Lancashire (Rosie Cooper) about the need for an open culture, and I am happy to work with her, as I have done in the past, in fostering such a culture.

[Norman Lamb]

The Secretary of State has been very good, post Francis, at being very clear that there has to be an open culture and that staff must feel free to speak out when there are patient safety risks that concern them. Will the Minister use this opportunity to re-enforce the message to the management of trusts, including ambulance trusts, across the country that they must allow their staff to speak out when they have genuine and legitimate concerns of this sort?

[Stephen Barclay]

I certainly will take this opportunity to do exactly that. As the right hon. Gentleman will be aware, like him, I myself, during my time in the House, have frequently spoken out on behalf of whistleblowers, particularly in my former role as a member of the Public Accounts Committee. I know he has other concerns that, with the leave of the House, I might touch on at the end of my remarks, but, as I am sure he will appreciate, I want to address the issues of the North West Ambulance Service in particular.

As Members on both sides of the House will know, the NHS is busier than ever. The ambulance service is dealing with unprecedented demand, with 11 million calls each year and almost 7 million face-to-face responses in 2016-17, which was a 14% increase on the previous five years. Overall, it is worth noting, on the concerns about workforce that the hon. Member for Rochdale set out, that the North West Ambulance Service has a strong record on recruitment, having recruited an extra 167 paramedics in 2017. As a result, its vacancy rate, at just 2.4%, is now one of the lowest in the country.

The hon. Gentleman is right, however, that on performance there is an issue and that the service does need to improve. As I will set out in my remarks, that is why work is under way with NHS England and NHS Improvement, working with the commissioners and the trust, to address that, as part of the wider national initiatives. It also needs to be set in the context of the pressures within the health service. About 3,000 patients are currently in hospital beds with flu and about 700 with the norovirus, so there are clearly winter pressures affecting handovers, but he is absolutely right that how we address the delays in handovers is a key area, and certainly a key ministerial focus of mine, as I will come on to in due course.

The hon. Gentleman set out several concerns about the trust’s performance. It is worth drawing the House’s attention to the fact that six ambulance liaison officers are now in place at A&Es across Greater Manchester to support handovers and address delays. The Treasury is investing £100,000 in the trust in February and March to boost operational capacity, and procedural solutions are being introduced to improve the efficiency of call handling. Under Sir Bruce Keogh’s review of the NHS urgent and emergency care system, ambulance services are being transformed to increase the use of “hear and treat” and “see and treat” and ensure the better prioritisation of patients so that those with the highest need are seen most urgently. The aim is to avoid what we all recognise was an issue in the past—where, in order to meet targets, often two, three or four ambulances were being sent in response to the same call. People had concerns about that across the House, but that is one of the improvements that has been brought in.

In 2016-17, the North West Ambulance Service treated and discharged over one quarter more patients at the scene and 92% more patients over the telephone compared with 2011-12, so although I recognise that there are challenges and areas that require improvement, it is important, in the interests of balance, also to recognise the progress the trust has made in recruiting more paramedics—as part of the 3,000 more paramedics nationally—its low vacancy rate and the steps it has taken to treat more patients at the scene.

Additionally, in July last year, the Secretary of State approved a revision of the operational performance standards for ambulances. Those improvements have been rolled out to all mainland ambulance trusts, which will mean better prioritisation of calls. The framework brings all patients under a national response standard for the first time and improves the efficiency and resilience of the ambulance service in the face of rising demand.

We recognise that the performance of the North West Ambulance Service against those standards is not good enough, and that is why NHS Improvement, NHS England and commissioners are closely engaged with the trust to ensure that it adapts successfully to the new performance framework. If the hon. Gentleman has specific concerns about the openness of the trust, I will be very happy to discuss those points and take them forward with him in a collaborative spirit.

I understand that the hon. Gentleman has raised concerns about workforce directly with the trust. As I said earlier, 3,000 more paramedics have been recruited nationally compared with 2010—an increase of more than 30%—so there are more paramedics than there were.

[Stephen Barclay]

I take that concern seriously, and I discussed it with officials earlier today. Compared with 2010-11, when the local “Healthy Futures” reconfiguration took place, there has been a 33% increase in vehicle hours assigned to the Rochdale and Bury area, with an associated staff resource increase of 43 full-time equivalent. So there has been improvement.

The North West Ambulance Service also aims to include a paramedic on board every ambulance. Although there are seven paramedic vacancies in the Rochdale area, nine paramedics are due to be assigned over the next 10 weeks and the trust is confident that the area will have a full complement of paramedic staff by April this year. I hope that that brings some comfort to the hon. Gentleman’s constituents about the direction of travel.

It is worth bearing in mind that, alongside those paramedics, the North West Ambulance Trust has recruited 24 graduates to operate as emergency medical technicians, and they are awaiting registration as paramedics. That will further improve the position. The trust has made it easier for emergency medical technicians to embark on paramedic training courses and worked with local universities to increase the rate of paramedic qualification. Where emergency medical technicians crew ambulances and respond to calls, they are heavily supported to do so safely, with direct access to advice from advanced paramedics and the trust’s clinical hub.

Handover delays were mentioned in several interventions. We recognise the challenge of delayed patient handovers to emergency departments. Delayed handovers tie up ambulance resources and adversely affect the trust’s capability to respond quickly to new calls. We are clear that handovers must take place within the agreed timeframes, and NHS England and NHS Improvement are supporting hospitals to ensure that improvements are made. Such work includes improved monitoring and daily review by national and regional winter operations teams, targeted assistance to challenged hospital trusts to improve their performance and the issuing of revised handover guidelines that focus responsibility on the wider system to address handover delays, including a clear escalation process. Locally, there are initiatives in place such as the placement of hospital ambulance liaison officers within emergency departments.

The trust is implementing a number of procedural solutions to improve the efficiency of the call-taking staff, including the use of post-dispatch scripts, which inform callers of the expected arrival time of a resource. In other trusts, that has minimised duplicate calls and reduced ambulance attendances by 4.6%.

To conclude on the comments of the hon. Member for Rochdale—with the leave of the House, I will then address the concerns of the right hon. Member for North Norfolk (Norman Lamb)—his concerns about performance are pertinent, and there is work ongoing to address that issue as part of the wider initiative. However, it is also important to recognise the progress that has been made, which has seen the recruitment of additional paramedics and the training of staff, with the progression of which the hon. Gentleman spoke, which allows people to progress their career into the role of paramedics. There are also further measures in terms of prioritisation, which will address a number of the concerns he set out.

On whistleblowers, that is an issue on which I, as a constituency Member of Parliament, have long campaigned. I hope my record on that speaks for itself, and the issue is something the right hon. Gentleman and I have previously discussed.

The right hon. Gentleman has also raised concerns, as has the hon. Member for Norwich South (Clive Lewis), regarding the East of England Ambulance Service. On receipt of the right hon. Gentleman’s letter, I instructed officials in my Department to share copies with the Care Quality Commission—the independent regulator of all health and social care services in England—to ensure that it is fully aware of the issues being raised. I discussed these concerning allegations directly with the chief executive of NHS England and the chief executive of NHS Improvement this morning, and asked them to confirm to me the actions they will be taking. They have subsequently confirmed that they will be holding a joint risk summit regarding the trust in the next week. The CQC will be in attendance.

[Norman Lamb]

First, I am really grateful to the Minister for addressing these issues this evening, given that this is a debate about the North West Ambulance Service. Would he be willing to meet me, given the level of concerns in the east of England?

[Stephen Barclay]

I would be very happy to meet the right hon. Gentleman. As a fellow east of England Member of Parliament, but also as a former Health Minister, he brings great experience to these issues, so of course I will.

In conclusion, I pay tribute to the hon. Member for Rochdale for raising this issue this evening. I am happy to work with him in our common interest to address the areas of performance that need to improve. However, at the same time, it is important that we recognise the progress that has been made on recruitment and reducing the vacancy level by the North West Ambulance Service, which gives a positive sign of the progress that is being made as we address the challenges being faced across the NHS.

Question put and agreed to.

NHS Winter Crisis

Norman Lamb Excerpts

Wednesday 10th January 2018 Commons Chamber

[Jonathan Ashworth]

Let me make a little progress, if I may, because I have been generous in giving way.

What is the response of the Prime Minister and the Secretary of State? A perfunctory apology, and the unprecedented blanket cancellation of elective operations.

[Norman Lamb (North Norfolk) (LD)]

The hon. Gentleman mentioned the East of England Ambulance Service. He will be aware of the case of the elderly lady who lost her life while waiting four hours for an ambulance to arrive. That is often a result of having ambulances stacked up outside hospital, as he has described. Does he agree that it is now time to end these intolerable incidents—such failures of care are apparently widespread across the country—and to have a mature national conversation about how to increase the funding for our NHS and our care system to ensure that people get care when they need it?

[Jonathan Ashworth]

I agree entirely. I am entirely happy to have a conversation about how to increase funding in the national health service, but I have huge scepticism about whether this Government—having overseen eight years of desperately tight funding allocations for the NHS, with cuts to community health services—are prepared to engage constructively in such a conversation.

On the specific case that the right hon. Gentleman mentioned, the hon. Member for Clacton (Giles Watling), whom I cannot see in his place—I apologise if he is in the Chamber and I have not spotted him—has called for an inquiry. He has actually warned that if that incident was a result of underfunding, we need to put more funding into ambulance services, and I share his concerns.

--- Later in debate ---

[Mr Hunt]

I say, very directly, that the instructions from NHS England could not have been clearer that cancer operations should not be cancelled, because they are deemed to be urgent. From the perspective of the Government and NHS senior leadership, such cancellations are not acceptable. If the hon. Lady knows of individual cases, she should raise them with me and we will look into the matter. It is precisely because we want to preserve capacity for people who need it the most that we have taken these difficult decisions.

[Norman Lamb (North Norfolk) (LD)]

The Secretary of State complains about politicisation of the NHS, but 90 colleagues from all parts of the House, including many Conservatives, are offering a different approach—a cross-party mature conversation to find a solution. Lord Saatchi, Baroness Cavendish and Nick Timothy are now arguing for the same thing. Will he now embrace that approach—a civilised approach to come up with a consensus for this country on how we secure our health and care system?

[Mr Hunt]

I have said publicly that, as we come to the end of the five year forward view, we need to seek a consensus on the next stage for the NHS. We will need significantly more funding in the years ahead, and we need to build a national consensus on how to find that funding. My own view is that we should try to do that for a 10-year period, not a five-year period. I am open to all discussions with colleagues about the best ways to do that, but, as we heard earlier from the shadow Health Secretary, the Labour party is not interested in being part of those discussions, which illustrates how difficult it is to reach consensus.

NHS Winter Crisis

Norman Lamb Excerpts

Monday 8th January 2018 Commons Chamber

[Mr Dunne]

I am very pleased to respond to my hon. Friend on a subject that is not always at the forefront of his mind. He is absolutely right to highlight the abuse of the health service by certain people—revellers—who turn up at hospitals in an unfit state to be treated. In some places, we have introduced holding areas to ensure that they do not disrupt the work of the hospital.

[Norman Lamb (North Norfolk) (LD)]

The Minister will be aware that the tragic case of the elderly lady who lost her life while waiting four hours for an ambulance is not an isolated one: there are constant failures of care across the country every day of the week. If he recognises that this is completely intolerable, will he not respond to the 90 MPs from across this House who have demanded that the Government get a grip and work, on a cross-party basis, to come up with a long-term solution?

[Mr Dunne]

I am always interested in what the former Health Minister has to say on these subjects, because he speaks with considerable authority. On ambulances, it is obviously unacceptable for there to be delays of that nature and leading to that kind of outcome, and we absolutely need to ensure that all trusts, when these incidents occur, look very carefully at trying to prevent them from occurring again. We have now—in part, in response to the pressures that the ambulance service has been under—set up a national ambulance control centre to try to help co-ordinate ambulance responses where services are not meeting the targets in certain parts of the country or our requirements in individual hospitals.

NHS Continuing Care

Norman Lamb Excerpts

Monday 27th November 2017 Commons Chamber

[Norman Lamb (North Norfolk) (LD)]

I suspect that I will not be alone in the House in having concerns about how NHS continuing care is operating these days. Concerns about the process will have been raised by the constituents of many hon. Members on both sides of the House. It is worth recognising that the process of NHS continuing care has always been fraught because a lot of money often turns on the outcome, and the families affected are often going through a very difficult time as they cope with a loved one with serious care needs. However, particular things are happening in the system now that seem to justify our spending some time on considering whether the current situation is acceptable.

As the NHS and the care system struggle with what I think are impossible finances, some wholly unacceptable practices are emerging around the country, some of which I want to deal with this evening. First, it is clear that a postcode lottery is emerging, with no democratic legitimacy at all. The massive variation in the acceptance rate for applications for NHS continuing care has no apparent justifiable explanation. The BBC’s “Inside Out East” programme made a freedom of information request about the period between July 2016 and July 2017. It found that Birmingham South Central clinical commissioning group rejected 75% of those assessed for NHS continuing care, whereas the figure for Tameside and Glossop CCG was just 5%. Given that this is public money, how can we possibly justify such an extraordinary variation without any democratic legitimacy? The BBC’s figures also showed that 73% of people in my constituency were turned down, but that the figure for Manchester was just 17%. These are not odd examples—there are enormous variations across the country. I would be grateful if the Minister could explain how these extraordinary variations are happening and what she and the Government intend to do about them.

[Maggie Throup (Erewash) (Con)]

In my experience, this depends not just on the postcode, but on how the referral is made. If a referral is made through a hospice, the process is clear and transparent, but with other mechanisms, it is more smoke and mirrors.

[Norman Lamb]

The hon. Lady might well be right. That does not justify the variations, but it is a possible explanation for part of the problem.

Secondly, the number of people nationally who are found to be eligible is falling. The National Audit Office found that the proportion of people assessed as eligible for standard continuing healthcare by CCGs reduced from 34% in 2011-12 to 29% in 2015-16.

[Jim Shannon (Strangford) (DUP)]

Does the right hon. Gentleman agree that home care packages must be better funded so that people can live independently at home, while still being cleaned and cared for, but that that is extremely difficult due to the finance available?

--- Later in debate ---

[Norman Lamb]

I will come on to that point in a moment. We are seeing more and more cases of couples being forcibly separated, which is really shocking and a denial of their human rights, so I agree with the hon. Gentleman.

At the end of March 2017, 57,000 patients were eligible for continuing healthcare in England, which was down 1.6% on the previous quarter and 2.7% on the previous year. What possible explanation for that can there be? Demand is rising significantly every year across the country, yet the number of people entitled is going down. That must be due to decision makers imposing tougher eligibility criteria.

[Rosie Cooper (West Lancashire) (Lab)]

Is the right hon. Gentleman aware of the trend in my constituency of people who are already in receipt of continuing care being reviewed and deemed no longer eligible? As a result, the cost of their care is pushed on to local government, instead of continuing to be met from within the health service?

[Norman Lamb]

I am aware of that. Often there is no change in such people’s condition, but sometimes their condition deteriorates. Sometimes the cost is pushed on to the local authority, but sometimes it is pushed on to the family, which is another very serious concern.

There are also a great many complaints about the process that is used. There are complaints about evidence being ignored, which can result in a judgment that someone is ineligible for NHS continuing care, and about professionals lacking an understanding of the condition that they are supposed to be considering. A survey conducted by the Continuing Healthcare Alliance found that 66% of people felt that professionals knew little about the condition that was under consideration. More seriously, there were allegations that medical opinions were being ignored. The BBC heard from three health workers who revealed, effectively as whistleblowers, that medical opinions were actively ignored as part of the process.

[Wera Hobhouse (Bath) (LD)]

It took one of my constituents several months and many phone calls even to receive an assessment for her relative. When she finally managed to receive it, the nurse on the day said that it was unlikely that continuing healthcare would be provided. Does my right hon. Friend agree that treating relatives in such a way when they are already going through a very difficult emotional time is unacceptable, and that staff should be given training before undertaking such assessments?

[Norman Lamb]

I do agree. The problem is compounded by the long delays that people have to face, often at very stressful times when they are wondering whether they will have to sell a home to pay for care and have no idea what the outcome of the process will be.

There are a number of cases around the country in which the costs of packages have been capped, with top-ups required from relatives. A growing number of clinical commissioning groups are applying a cap to what they will pay for home support packages above the cheapest care home alternative. That is really insidious. At the extremes, it is reasonable to recognise the pressures on public finances but, as the BBC reported on “You and Yours”, 19 CCGs refused to pay for home care packages if the costs were 10% higher than the costs of a care home. There are many cases in which couples who may have been married for decades are suddenly forcibly separated. What are we doing? That is inhuman, and, as I have said, it breaches a human right—the right to a family life.

[Gareth Snell (Stoke-on-Trent Central) (Lab/Co-op)]

I congratulate the right hon. Gentleman on securing this debate on a very important subject. I have encountered cases in my constituency in which people have been delayed from leaving hospital because an argument is raging between the local authority and the CCG about who is ultimately responsible for payment, partly because the CCG is encouraging people to opt for cheaper care home provision even if that is not what they want. Has the right hon. Gentleman come across similar cases in the course of his research?

[Norman Lamb]

Depressingly, I have. Earlier this evening, when I was giving the Speaker’s lecture, I made the case that we need, ultimately, a pooled budget for both health and care to stop these awful arguments between the health and social care silos.

[Dr Caroline Johnson (Sleaford and North Hykeham) (Con)]

In my experience, trying to define which is the social care part of an individual’s need and which is the medical part can be very challenging, as many people will have a combination of both. Does the right hon. Gentleman agree that the Government’s proposal for accountable care systems in which one group is responsible for meeting both needs is a great step forward?

[Norman Lamb]

If it were happening, I would. I totally agree that we need to bring health and social care together in localities, with a single budget and single commissioning. I think that we need to work across parties to come up with an ultimate long-term settlement for the NHS and the care system.

Families are also in the invidious position of being asked to provide, in effect, a top-up for care if they want their loved one to remain at home, rather than being forced into a care home. That is fine for those who can do it, but not good for those who cannot afford it. It is also completely contrary to any notion of personalisation —the concept of the person, what is important to them and their priorities being at the heart of decision making—which the Government accept. When I was working with the Conservative party in coalition, we passed the Care Act 2014. Its fundamental principle was the individual’s wellbeing, yet now are saying to people, “No, you’re going to go into a care home because it’s cheaper.” That is not acceptable, but it is happening around the country.

[Maggie Throup]

rose—

[Norman Lamb]

I will give way for the last time.

[Maggie Throup]

The right hon. Gentleman is very generous. He makes a strong case, but sometimes people’s healthcare needs are so great that it is impractical for them to be looked after in their own homes, so things are not quite as cut and dry as he is indicating.

--- Later in debate ---

[Norman Lamb]

If there are good medical reasons, people can of course have the discussion and it might be decided that a care home is the right place, but I am talking about cases in which the only issue is the finances. People are told, “It costs 10% more to provide care at home. You’re going into a care home.” That is not acceptable, but it is happening.

The BBC reported on a family who were paying a top-up of £250 a week. Top-ups are not permissible under the legislation, but that is happening around the country. The BBC gave a case study of a man in Salford, paralysed from the neck down, who was entitled to NHS continuing care. His entitlement was assessed as 168 hours a week, but the CCG was willing to pay for only 105 hours. What was the result? He has been stuck in hospital since Easter in the way that the hon. Member for Stoke-on-Trent Central (Gareth Snell) described. It is outrageous. Another case highlighted by the BBC was that of Mark in Norwich, who has type 2 spinal muscular atrophy, a progressive muscle-wasting condition, and very limited mobility. He has had a personal health budget worth £73,000 for the last six years, but it has now been cut by a third. How does he cope with a reduced care package when he has such a condition, which is deteriorating as he lives longer?

The Equality and Human Rights Commission has written to the 44 CCGs with the most disturbing policies of hard caps to make it clear that it is a breach of human rights law if people are deprived of the option of living at home and therefore the right to a family life. There are also concerns that there is an expectation in the costing of the care package that people will work for the minimum wage. Of course some people work for the minimum wage, and they should be accorded the utmost respect, but much of the work involved is complex and challenging, so it is very disturbing if there is an assumption that only minimum wage work is undertaken.

NHS England expects efficiency savings from the continuing healthcare system. That cost £3.1 billion in 2015-16, which was 4% of the total CCG spend. The figure is expected to rise to £5.2 billion by 2020-21 because of increased demand. In its efficiency plan, NHS England requires CCGs to achieve efficiency savings of £855 million by 2020-21, but how? The National Audit Office found that only £149 million is spent on administration, which is where efficiency savings can be made, so I will be grateful if the Minister explains how that efficiency saving can be achieved except by cutting people’s care plans, which is in my view intolerable.

Then there are the delays, as my hon. Friend the Member for Bath (Wera Hobhouse) mentioned. The national framework says that people should know the outcome within 28 days, but long delays are common across the country. The National Audit Office said that a third of claims took longer to process than that, with 10% of the total taking more than 100 days. Even more disturbing are delays in the fast-track process for end-of-life care. It is really important to make a speedy decision in such cases, perhaps to get someone out of hospital to the place where they want to be. There is a 48-hour standard, but Marie Curie found in its “Making every moment count” report that there was enormous variation, with less than a third of cases meeting the 48-hour timeframe. Many CCGs did not know how long they were taking, and 57,000 people waited longer in 2015-16. Delays can mean that people with a terminal illness are stuck in hospital, unable to die in the place of their choice. When I was a Minister, I introduced a legal right to a personal health budget, but we find again and again that arbitrary caps are being placed on personal health budgets, and that people are expected to accept a care plan that involves a percentage reduction compared with what the cost of provision would be for authorities.

There is an enormous case for reform. I have argued for an NHS and care convention that brings the parties together to come up with a rational solution that meets people’s needs and does not treat them in this rather disgusting way, especially when so much stress and anxiety is involved in coping with someone with very considerable care needs, especially at the end of their life. The system is arbitrary, costly, bureaucratic and enormously variable around the country. It involves no democratic accountability or justification, and it undermines the principle of putting the patient first. What are the Government going to do about it?

Drug Addiction

Norman Lamb Excerpts

Wednesday 22nd November 2017 Westminster Hall

[Norman Lamb (North Norfolk) (LD)]

It is a pleasure to serve under your chairmanship, Mr Gapes. I congratulate the hon. Member for South Thanet (Craig Mackinlay) on securing a debate on this really important issue.

I will start with where I agree with the hon. Gentleman. As a father myself, I share the horror at the impact of dangerous drug use; in a sense, my starting point is to be hostile to dangerous drug use, whether legal or illegal. That is a really important point, because according to the evidence the most dangerous drug of all is alcohol, which is used very heavily within these buildings. We must remember that, because there is enormous hypocrisy in the debate on this issue.

For me, the most depressing thing said in the Chamber today was the Prime Minister’s reaffirmation of the commitment to the war on drugs—the catastrophically disastrous war on drugs—in response to a question from the hon. Member for Reigate (Crispin Blunt). He raised a totally rational case, which was rejected with what I would say was a rejection of the evidence and an approach based on stigma and an ignorance of the facts of the disastrous impact of the war on drugs.

It was an enormous pleasure just the other day to meet some parents, together with the hon. Member for Inverclyde (Ronnie Cowan), from the Anyone’s Child organisation. Far from what the Prime Minister said about the families of those who have lost their lives through drug use all rallying around to demand ever-tougher sentences, these brave people are powerfully making the case that the criminalisation of drug use has had disastrous consequences for their families and will leave them distraught for the rest of their lives.

In a way, the great irony I found in the contribution from the hon. Member for South Thanet is that he pointed to a whole series of disastrous consequences of drug use—but drug use under a criminal market. That is the extraordinary thing. I am completely with him about identifying and recognising these disasters, but they are happening here and now. There is a false thinking that suggests that, because there are dangers of drug use, the automatically sensible thing to do is to ban drugs, but we should know by now that that does not work. The Home Office’s own study in 2014 confirmed that banning has no impact on the level of drug use in society, so let us start thinking afresh about this issue.

[Craig Mackinlay]

Will the right hon. Gentleman give way?

[Norman Lamb]

No; I am conscious that time is really tight.

Far from protecting people, the current framework of our drug laws resulted in 3,744 drug-related deaths in 2016—the highest ever level, and a 44% increase over five years. We are not talking only about the United States; it has arrived in this country with a vengeance. Heroin and morphine deaths rose by 109% under a criminal market. It is not working.

On criminalisation, the hon. Member for South Thanet said he does not see many people ending up in prison, but just last year 45,000 people ended up with criminal convictions for possessing drugs, which has a dreadful blighting effect on their careers; we waste human capital in our country. One of the families that talked to us on Monday talked about their son, who is a really clever scientist but who now cannot work as a scientist because of the effect of his conviction several years ago. That is ludicrous, but it is the effect of criminalisation. The Australian study from a few years ago confirms the negative impact of criminalisation on all those people who end up with a criminal record.

Criminalisation also hits many people who self-medicate because they are experiencing mental ill health. It has a massive impact on people who are already vulnerable, and because they choose to use a substance to perhaps take away the pain of what they are going through, we then give them a criminal conviction. It is the most ludicrous response imaginable. There are also those people who suffer from conditions such as multiple sclerosis, and who use cannabis to ease their pain, who we then give a criminal conviction for their trouble. Again, it is a ludicrous way of responding to a real problem.

We hand vast sums of money—billions of pounds in profits—to organised crime, not only in this country but globally. It is the most extraordinary waste of resources and it promotes extreme violence in our communities. Of course, it is always the poorest communities that suffer the most. In the United States, there is very clear evidence that it is poor black communities that suffer the most. In our country, black people are targeted for stop and search, being nine times more likely to be stopped and searched for drugs than white people.

Instead of those awful consequences of criminalising drug use, let us think about an alternative approach that may be more rational and may be based on evidence, not ignorance and stigma. Let us instead regulate the market for cannabis. The data that the hon. Member for South Thanet raised from the states in the US that have legalised cannabis are highly contested data. Very respected organisations such as the Drug Policy Alliance address some of the misclaims about the impacts of cannabis use in Colorado and Washington. One of its conclusions is that teen marijuana use is unchanged, while its overall conclusion on the impact of legalisation is “So Far, So Good”.

A lot of misclaims are being made about the impact of legalisation in the United States, but a legalised, regulated market has the potential to take the trade away from criminals and instead raise pounds in taxes, which can then be used on health and education and supporting people out of addiction, rather than simply criminalising them. Let us treat it as a health issue, not a criminal justice issue. Let us accept across our country the principle of safer drug consumption rooms. They are already saving lives in eight European countries and in Canada and Australia. The principle is endorsed by the BMA. No one dies of an overdose in a drug consumption room. Let us accept that evidence and apply it in this country before we continue the carnage of loss of life that we are experiencing now. Let us accept heroin-assisted treatment where other treatments have failed. I recognise that the hon. Member for South Thanet acknowledged that that may be appropriate in some cases, but it is a policy based on evidence of what works.

Finally, the attitude of this Government. I have mentioned the 2014 Home Office study that was done while the Prime Minister was Home Secretary. Her own Department concluded that there was no international evidence at all to show that tougher drug laws reduce the use of drugs in society, so why do the Government not follow the evidence? Secondly, the evaluation of the Government’s drugs strategy last year raised some extremely serious concerns. It concluded that enforcement expenditure has

“little impact on availability.”

It states:

“Illicit drug markets are resilient and can...adapt to even significant drug and asset seizures.”

Criminalisation does not work. Contact with the criminal justice system for drug offences can

“bring with it potential unintended consequences including unemployment...and harm to families”.

Also:

“Incarceration may also negatively impact on the indirect and unemployment harms that...drug-related enforcement activities”

seek to improve. The conclusion of the Government’s own analysis is that it is not working.

Then there is the real hypocrisy. There will be loads of Ministers in this Government who have used cannabis, and probably other drugs as well, in their younger years, and yet they are prepared to see fellow citizens convicted of offences for something that they themselves did in their younger years, and they have gone on to enjoy good careers. Let us stop the hypocrisy. Let us recognise that we should apply the approach of reduction in harm, not criminalisation, because it has not worked and it has led to awful consequences internationally.

--- Later in debate ---

[Mr Dunne]

As I said, the Government published what we regard as an ambitious new drug strategy in July. As my right hon. Friend the Home Secretary compellingly set out in her foreword, the harms caused by drug misuse are far-reaching and affect lives at every level. I welcome the support of my hon. Friend the Member for South Thanet for the strategy. My hon. Friend the Member for Henley (John Howell) also made a powerful contribution to the debate, focusing on differentiating enforcement action between the different categories of drug users. Although, of course, some of that is already in force in the sanctions available to our criminal justice system, the point that he makes in relation to identifying those who use criminality to fund their addiction is important.

Crime committed to fuel drug dependence is one of the biggest challenges that society has to contend with as a result of drug abuse. That extends into organised criminality in this country and internationally. From the perspective of the individual, the physical and mental health harms suffered by those who misuse drugs and the irreparable damage and loss to the families and individuals whose lives they destroy were eloquently expressed by the hon. Member for Glasgow East (David Linden), who speaks for the Scottish National party. The constituent’s story that he told was harrowing. I think that we all share those concerns.

The drug strategy highlights the huge financial cost to society from illicit drugs. Each year, drugs cost the UK £10.7 billion in policing, healthcare and crime, with drug-fuelled theft alone costing £6 billion a year.

[Norman Lamb]

Will the Minister give way?

[Mr Dunne]

I am afraid not, because I have limited time.

As my hon. Friend the Member for South Thanet pointed out, research shows that for every £1 spent on treatment, an estimated £2.50 is saved. It remains essential for us to offer those with a drug dependency the optimal chance of recovery. Since the 2010 strategy was published, we have made significant progress, despite the comments from the hon. Member for Washington and Sunderland West. She did acknowledge that drug use in England and Wales is lower now than it was a decade ago. In 2016-17, 8.5% of adults had used a drug in the previous year, compared with 10.1% of adults back in 2006-07. More adults are leaving treatment successfully now than in 2009-10, and the average waiting time to access treatment is now two days.

The new strategy aims to reduce illicit drug use and to increase the rate at which people recover from their dependence. Action is being taken in four areas: reducing demand to prevent drug use and its escalation; restricting the supply of illegal drugs; building recovery; and a new strand focused on global action. At the centre of the strategy is a core message: no one organisation or group can tackle drug misuse alone. As my hon. Friend pointed out, a partnership approach is required across Government and involving the treatment system, education, employment, housing, mental and physical health and the criminal justice system.

To drive forward the partnership approach, we are setting up a new board, chaired by the Home Secretary, which is due to meet for the first time next month. My right hon. Friend the Secretary of State for Health will attend, along with Ministers from across Government and wider partners, including Public Health England. The aim is to hold all parts of the system to account on specific commitments in the strategy. We are also appointing a new “recovery champion”, who will have a national leadership role with a remit to advise the Home Secretary and the board. That individual will drive collaboration across sectors and give people with drug dependency a voice to address the stigma that can prevent them from accessing the support that they need.

We will also take forward the drug strategy’s approach to prevention, because we know that we stand the best chance of preventing young people from misusing drugs by building their resilience and helping them to make good choices about their lives and their health. To achieve that, we will take forward evidence-based prevention measures, including developing the “Frank” drugs information service, to which my hon. Friend referred, so that it remains a credible and trusted source of information for young people. I note that the young people in the straw poll he did in his constituency had not heard of that service. I will ask officials to look at how we can raise awareness of that tool, but I point out gently to him that it is designed to be an information tool rather than a prevention tool in and of itself.

Other measures are promoting the online resilience-building resource, Rise Above, which helps teenagers to make positive choices for their health, and expanding the alcohol and drug education and prevention information service to give schools the tools and resources that they need to help to prevent drug misuse among teenagers.

The hon. Member for Washington and Sunderland West mentioned funding. Funding decisions on drug and alcohol treatment budgets have been devolved to local authorities, which are best placed to understand the support and treatment needs of their populations because they differ across the country, as we have heard today. We know that there are concerns about funding, and that local authorities are making difficult choices about their spending; we are not shying away from that. That is why we are extending the ring-fenced public health grant until April 2019 and retaining the specific criteria to improve drug and alcohol treatment uptake and outcomes. Although the intention remains to give local authorities more control over the money that they raise—like with business rates—we are actively considering the options for 2019 onwards. We remain committed to protecting and improving the outcomes from core services, including in respect of substance misuse, and will involve stakeholders in discussions about how we achieve that.

We know that drug misuse is both a cause and a result of wider social issues. That is why we are testing ways to improve employment support for people in recovery. We have accepted Dame Carol Black’s recommendation that we trial an “individual placement and support” approach to help people in drug and alcohol treatment to prepare for, find and maintain employment. In that context, I would like to give a quick plug to an outstanding charity in my constituency called Willowdene Farm, which provides very successful residential rehabilitation and training centres, historically for adult men with a history of substance addiction; it has just opened a residential facility for adult women as well. It is leading the way in encouraging those who have been through its programme into employment. Public Health England announced yesterday that the trial will go live in April 2018 in seven areas: Birmingham, Blackpool, Brighton and Hove, Derbyshire, Haringey, Sheffield and Staffordshire.

I shall briefly go through some of the emerging challenges. Since 2012, we have seen sharp increases in drug misuse deaths linked to an ageing group of older heroin users with multiple and complex needs. In response to drug-related deaths, Public Health England is looking at how we protect people from dying of overdoses. It has published updated guidance for mental health and substance misuse treatment services, to help them to work better with people who have co-existing mental health, alcohol and drug problems.

In addition, local authorities must ensure that treatment services respond to the changing patterns of drug use. Treatment has been demonstrated to have a significant protective effect, without which the recent rise in drug-related deaths is likely to have been higher. Drug treatment can also cut crime. Recent analysis by the Ministry of Justice and Public Health England showed that 44% of people in treatment had not offended again two years after starting treatment. In recent months, as we heard from my hon. Friend the Member for South Thanet, there have been deaths linked to fentanyl-contaminated heroin in parts of the UK. He gave us a graphic illustration of the impact in certain parts of the United States. I agree that that is extremely worrying. It underlines the importance of vigilance and strong enforcement action by the police and the National Crime Agency, as well as accessible treatment and the availability of life-saving interventions such as naloxone.

The use of synthetic cannabinoids, often called Spice, among the homeless and prison populations is a real concern for the Government. That was raised by a number of hon. Members. The Government have already taken action to classify third-generation synthetic cannabinoids, such as Spice, as class B drugs under the Misuse of Drugs Act 1971, giving the police the powers that they need to take action, making possession illegal and delivering longer sentences for dealers.

Valproate and Foetal Anticonvulsant Syndrome

Norman Lamb Excerpts

Thursday 19th October 2017 Commons Chamber

[Norman Lamb (North Norfolk) (LD)]

I beg to move,

That this House notes with concern that there has been a systematic failure to inform women of the dangers of taking the epilepsy drug sodium valproate during pregnancy, resulting in thousands of children being born with congenital malformations, disabilities and developmental disorders since the 1970s as a result of fetal exposure to the drug; welcomes the launch of the Valproate Toolkit by the Medicines and Healthcare Products Regulatory Agency in February 2016 to ensure that women are informed of the potential risks of the drug, but further notes with concern a recent survey which found that 68 per cent of women have still not received these safety warnings; calls on the Government to take immediate steps to ensure that the materials in the Valproate Toolkit are distributed to all prescribing clinicians, pharmacists, and women who are being prescribed the drug; calls on the Government to require all clinicians prescribing sodium valproate to women and girls of childbearing age to discuss annually with the patient, the risks during pregnancy before a prescription is renewed; and further calls on the Government to bring forward proposals for a care plan and financial assistance to the victims of sodium valproate in pregnancy and their families.

I congratulate you, Madam Deputy Speaker, on getting through this debate’s catchy title.

I start by thanking the Backbench Business Committee, on behalf of the all-party parliamentary group on valproate and other anti-epileptic drugs in pregnancy, for facilitating this debate. I also pay tribute to Janet Williams and Emma Murphy, who are present today. They have fought tirelessly on this cause over many years, and we owe them an enormous debt of gratitude.

It is fair to say that “scandal” is an overused word in political discourse, but it is appropriate in this case: a family who have suffered as a result of a mother taking valproate in pregnancy would regard it as an absolute scandal, and we need to treat it in that way. There are many similarities to the thalidomide scandal. A group of women, over many years, took a drug during pregnancy without knowing the risks, with awful consequences, and we owe them a duty—that is the important point.

[Kate Green (Stretford and Urmston) (Lab)]

I apologise to the right hon. Gentleman for not being able to stay for the whole debate.

I, too, pay tribute to Janet and Emma for the campaign they have run. This debate is a great tribute to their efforts. Does the right hon. Gentleman agree that the real scandal is that we have known about the problems with this drug since the 1960s, but, as he says, expectant women were not told? The Government and the pharmaceutical industry knew there were dangers.

[Norman Lamb]

I thank the hon. Lady for her intervention, and I completely agree with her. Interestingly, the original product licence in March 1974 stated this, way back then:

“In women of child bearing age, it should only be used in severe cases or those resistant to other treatments.”

They knew in the ’70s, yet the appalling scandal is that so many women since then have had their life turned completely upside down, with enormous consequences for their children, because they were not told.

[Tim Farron (Westmorland and Lonsdale) (LD)]

My constituent Nicola took sodium valproate through her pregnancy, and her son has chronic fatigue. The impact on her family is immense and expensive. We have fought for, and managed to secure, medical support for her through hospitals in Manchester, but does my right hon. Friend agree that there needs to be a Government fund to ensure that victims have such support, rather than having to rely on their own means?

[Norman Lamb]

I completely agree. I will make the case a little later, but it seems unanswerable and the Government need to reflect on that.

What happened was worse than just the neglect of not telling women. The minutes from the 18 July 1973 meeting of the sub-committee on adverse reactions, a sub-committee of the Committee on Safety of Medicines, have been uncovered. That document reveals a real outrage, because it talks about keeping the information from women—deliberately withholding it

“especially as it could give rise to fruitless anxiety.”

It continued:

“Nevertheless, they thought it would be best if prescribers were all made aware of the nature of the evidence and recommended that a statement similar to that proposed by ICI”—

in respect of another product—

“could be included in all relevant data sheets but not on package inserts so that there would be no danger of patients themselves seeing it.”

That is extraordinary.

[Martin Whitfield (East Lothian) (Lab)]

Would the right hon. Gentleman share my great disappointment if the original documents were to go missing from the archive while these debates and this campaign are ongoing?

[Norman Lamb]

I thank the hon. Gentleman for that intervention. Issues such as this are of enormous concern and this raises the question whether there needs to be some sort of inquiry or Hillsborough-style panel to look at exactly how it has happened. However, it is important that we focus on the top priority, which is ensuring that women get told, that this drug is not used inappropriately and that a compensation package of some sort is put in place.

[Mr Ben Bradshaw (Exeter) (Lab)]

Given what the right hon. Gentleman has said, is it not even more extraordinary that, even now, this information and these warnings are not getting through effectively to pregnant women and their families? My constituent David Tout’s son has been affected by this, as have 20,000 children across the country in every one of our constituencies. There is no sense of urgency from the MHRA—Medicines and Healthcare Products Regulatory Agency—or from the Government.

[Norman Lamb]

I thank the right hon. Gentleman for that, and he is right in what he says; I, too, feel that there is a sense of inertia. For goodness’ sake, for as long as women are not getting told about this, more such babies are being born. That is the awful horror of this.

[Dr Philippa Whitford (Central Ayrshire) (SNP)]

Many of us in the House have been approached by constituents or groups about several of these drug scandals, which represent a paternalistic time, when the patient was not part of a team in an open discussion with the doctor. I am sure there are many of these, so should they be looked at together, as the principles of them all are the same?

--- Later in debate ---

[Norman Lamb]

That is a profound comment to make and it reflects a changing attitude and culture; it is thankfully now less paternalistic than it was. However, elements of it remain and we need to keep fighting against that. The hon. Lady makes a good point: this relates to other products, too.

[Cat Smith (Lancaster and Fleetwood) (Lab)]

rose—

[Norman Lamb]

I will take this intervention and then I ought to make progress.

[Cat Smith]

Is the right hon. Gentleman aware of research done by the Independent Fetal Anti Convulsant Trust—In-FACT—which found that up to 400 babies affected by valproate have been born since the toolkit was launched in February 2016?

[Norman Lamb]

I thank the hon. Lady for the intervention. I am aware of that figure and again it is shocking. It makes the point that this is a continuing scandal, not something from the dim and distant past.

Since the 1970s, more information has emerged bit by bit. In 2000, the information given to patients was changed to refer to the warning, but it took until then for anything to emerge. In 2005, Sanofi made an addition to this, and an interesting question is whether it downplayed the risk. That is one point that raises the question whether some sort of panel investigation needs to take place. In 2005, Sanofi said on its warnings to patients:

“Some babies born to mothers who took Epilim during pregnancy may develop less quickly than normal and may require additional educational support”.

That is putting it at its mildest, because the implications were far more serious. The question is, did it know then? These things need to be investigated further.

It is important to state what the risks are. Among the general population there is a 2% to 3% risk of foetal abnormality. If valproate is taken during pregnancy, that risk rises to 11%, and possible defects include spina bifida; malformations of the face, including cleft palate; malformations of the skull, limbs and organs, including the heart; and respiratory issues. It is incredibly important not to disregard the fact that when people take valproate during pregnancy there is also a 30% to 40% risk of developmental problems, including life-changing issues such as poor speech and language skills, delayed walking and talking, behavioural problems, interaction and communication issues, low intellectual abilities, memory problems, noise sensitivity, sensory issues, attention deficit hyperactivity disorder and autism spectrum disorders. The consequences are incalculable. It is estimated that 20,000 babies have been affected since the 1970s. It is also important to remember the profound impact on the mothers themselves, who too often have been treated as if they are to blame for the problems their children face and who then face years of guilt. That is a really shameful aspect of all this.

I have some case studies. Becky Parish, a mother from my own county, Norfolk, says:

“Logan is 7 and was born with a 7 mm unilateral cleft lip and palate…which the geneticist confirmed was due to Fetal Valproate Syndrome…He also has grommets and struggled with glue ear and bronchitis as a baby”.

He has needed “constant speech therapy” and suffers ear infections.

Becky describes how Logan

“has all facial features of FVS”

and is short in height and low in weight for his age. He has

“severe aggressional and destructive behaviours, including violence against others and self-injurious behaviours”

and so it goes on. This is really significant. There is sometimes a danger when we talk in general or abstract terms, but when we hear the stories of the affected families, we realise just how awful it is.

Becky says “social”—social services—“blamed me for it”. Her assertion is that in her case social services thought that the problems related to a detachment disorder, with the implication being that the mother was in some way to blame. She says:

“Social blamed me for it and so did the school—and now I feel more guilt due to it being FVS. Because no matter how much someone says I didn’t know and it wasn’t my fault, the guilt never goes away. And sadly it never will.”

That is really shocking.

Becky decided not to continue with valproate when she became pregnant with her youngest child, who is now five. She says that it was not a difficult decision, because in her view her child’s health was “far more important” than her own seizures, but that must have been a terribly difficult judgment for her to make. Nevertheless, she stopped straight away and was not put on any alternative treatment, despite conflicting messages from health professionals. Her specialist nurse told her that—wait for it—she was being selfish, and made her upset at her 12-week scan. However, her neurologist said that coming off the drug was the best thing she ever did. So she got two completely conflicting messages.

Carolyn Allen in Southampton talks about how her son requires support for a number of the effects of the condition, including deafness in his left ear, noise sensitivity, and speech and language delay. She says:

“He has been referred to portage, speech therapy, occupational therapy, ophthalmic, hearing clinic, physiotherapy, community paediatricians and has already had one operation to release his tongue tie.”

Just imagine the massive impact of this condition on that family.

Paula Hartshorn, a mother from Leeds, says:

“The powers-that-be need to think about the devastating impact this has on families, and how these families have to just cope and instantly know how to deal with all these complex medical issue. We have been left to give up on our jobs, careers, social interactions, and everything that goes with a well-rounded life. There are no breaks for us.”

The stories are heartbreaking.

Kazzy Southam from Blackpool tells a story of not finding out about the condition until her daughter was nearly 20. Her voyage of discovery began when she met Janet and Emma in 2014. This was after her daughter had been diagnosed with learning disabilities, dyspraxia, and social anxiety disorder. She had to fight to get a geneticist to investigate and give advice. Eventually, it was confirmed that her daughter had foetal valproate syndrome. It was a shocking fight for her to get justice, and she should not have had to go through that. She says:

“To me, she is an angel and I wouldn’t change her for the world. She said to me not long ago: I wouldn’t want to be ‘normal’—I like my mad head. But it hurts me to say, she doesn’t and won’t know any different—all down to the pills I took for my seizures.”

I ask Members to imagine living with that throughout their life. The Minister really needs to reflect on this. It seems to me that the Government have an obligation to do good by these people and not just to say that they must resort to the local authority or the clinical commissioning group for whatever might be available in their locality. There is a moral duty here and we must accept it just as we did with thalidomide.

I became aware of this scandal when I was a Minister and met the campaigners in September 2013. I was horrified by what I heard, having known nothing about the condition until then. I asked the Medicines and Healthcare Products Regulatory Agency, which attended the meeting, for an urgent review of what was being done to stop more and more mothers giving birth without knowing of the risks. In October that year, the MHRA asked the European Medicines Agency to undertake a full review. That review reached the conclusion—it was very little different from what the product licence said back in 1974—that the product should be used only if all other drugs are ineffective or are not tolerated. It also advocated a strengthened warning to ensure that all mothers were aware of the issue.

In January 2015, the MHRA issued new information with stronger warnings, education materials, patient information leaflets and so on. Eventually, in February 2016, the toolkit was issued: I have it here. It may not look like a toolkit, but it is. It is of value, because it gives information to clinicians and patients about the risks involved. Again, the scandal is that the information has not been communicated to very many of the affected women.

In September this year, a survey carried out by the UK’s three leading epilepsy charities—Epilepsy Society, Epilepsy Action and Young Epilepsy—found that the warnings were not getting through. Some 68% of women of childbearing age had not had any of the materials released as part of the valproate toolkit. That is not acceptable.

[Kate Green]

I thank the right hon. Gentleman for accepting a further intervention. He is making a very powerful case. The hon. Member for Central Ayrshire (Dr Whitford) mentioned the paternalistic approach that the medical profession has perhaps taken in the past. Is he as shocked as I was to learn that that paternalistic approach was still in evidence some two years ago when I met the pharmaceutical company Sanofi to discuss getting information out to mothers? The company told me that it would be inappropriate to make the information available, as it was unsupported by detailed advice from doctors. Of course it is important that women should be able to discuss the matter with their clinician, but they are able to understand and interpret intelligence, too.

[Norman Lamb]

I thank the hon. Lady for her intervention and pay tribute to her for her work on the all-party group for valproate and other anti-epileptic drugs in pregnancy, and for her campaigning. Yes, the response she got from Sanofi two years ago was unacceptable. It had the effect of hiding from women the full extent of the risk. Women should be presented with the evidence so that they can have a full discussion with the clinician about what steps to take. The September 2017 survey also found that 18% of women did not know of the harm—it was not that they had not received the toolkit, but that they still did not know. The system is failing those women.

[Huw Merriman (Bexhill and Battle) (Con)]

I stand here as an advocate for my constituent, Ms Carol Short, who describes her son as a 26-year-old locked in a man’s body, but unable to do much more than a 10-year-old. Does the right hon. Gentleman agree that it is shocking, with the clinical commissioning groups and all the funding that comes from the public sector, that we still cannot get this message through? Might one solution be shorter length prescriptions, to increase the likelihood that women receive more regular advice?

[Norman Lamb]

That suggestion is worth exploring. There certainly should be regular reviews—discussions on the woman’s intentions about childbirth, and on the appropriateness of the treatment for that woman at that place and time.

I acknowledge an important danger. If all the focus is on the risk of valproate, there is a risk that women will simply give up and take no medication during pregnancy, and that there will be a rise in unexpected deaths through epilepsy. SUDEP Action raised that really important issue. Already, every year, 1,200 people die sudden unexpected deaths in epilepsy, and of that total SUDEP Action estimates that about 42% are avoidable. We definitely do not want any increase in that number. For me, that points to the need for all women—indeed, all people—with epilepsy to have access to specialist teams, wherever in the country they live. My worry is that access is haphazard and variable.

Last Friday I met a specialist team in Norwich. It is a very good team, and they explained to me how they have managed to reduce the use of valproate by women in the childbearing years to a very small number. They say it is only a very small subset, for whom there is no alternative. Thus they can focus all their attention on those women. They said that there is considerable variability around the country—that many women do not get access to a specialist team. I would like the Minister to commit to the publication by the Government of data for every CCG showing the level of prescribing of this medication, to enable us to pinpoint where over-prescribing is taking place.

The interesting and rather concerning point is, if those specialists that I spoke to are right that only a very small subset of women of childbearing age need to take valproate, why is it that still, of the 173,787 people with epilepsy taking valproate, 17,848 are women of childbearing age? That looks like substantial over-prescribing, which is completely contrary to the current guidance. If the guidance is clear that it should not be prescribed to women of childbearing age unless there is no alternative that is safe for the individual woman, why on earth are so many women still being prescribed this medication? It is a scandal, and the Government need to get to grips with it.

We need a holistic approach, so that women have access to specialist care and so that full consideration can be given to the right arrangements to ensure that no woman is on valproate who need not be during those years of childbearing age. Then we might start to see an end to this awful continuing scandal.

Finally, I shall outline the steps that the Government and others should take. First, the toolkit must reach everyone. It must surely be mandatory, not voluntary. Given the clear evidence from the survey of the number of women who are not getting the message, we cannot rely on the current system to work, because it is not working. As the hon. Member for Lancaster and Fleetwood (Cat Smith) said, 400 affected babies have been born since it was introduced. That cannot continue; the warnings must be mandatory, along with raising awareness among GPs, pharmacists, specialists, midwives and health visitors.

Secondly, people should have an annual discussion with their GP or another health professional. The Epilepsy Society has argued that that should happen, and it is very much consistent with the valproate toolkit, which highlights the need for regular review. There should be face-to-face discussion with a health professional before the prescription is renewed.

Thirdly, all women should have access to specialist units, wherever they live. We must end this haphazard, variable position around the country, and we must address fully the concerns raised by SUDEP Action. Professor Ridsdale, a consultant who has specialised in this area of policy, says:

“A useful outcome of this exercise would be that whoever prescribes Valproate agrees to identify and provide regular advice to women and girls at risk. Better still, that policy-makers and providers start exploring how ongoing structured self-management advice might be offered to everyone with epilepsy.”

That is surely the ambition we should set.

Fourthly, we should publish the prescribing rates for valproate for every CCG. The Government say they have a commitment to openness, and this would be a good demonstration of it, because we would be able to identify where the real problems exist and where women are not getting access to good enough advice.

Fifthly, we should ensure that only those women who absolutely have to take valproate do so during their child-bearing years, in accordance with the advice, and that we end what appears to be the significant over-prescribing of this medication for such women.

Sixthly—this comes back to some of the interventions that have been made, including by my hon. Friend the Member for Westmorland and Lonsdale (Tim Farron)—there must be a financial support package. In a way, that comes down to the Government’s duty to these people. This has gone on for many decades, so my point is not directed just at this Government, but they have the responsibility here and now to do right by these people. There is an overwhelming moral case for them to do that, and it is not good enough for Ministers to simply say that support is available locally through local authorities or CCGs. These families have suffered an injustice, and the Government have a moral obligation to address it. If it is right for thalidomide victims, it is right for those who have lost out severely as a result of valproate. In France, a €10 million initial fund has been established, and it could be increased. The Government need to take the same step in this country.

Seventhly, there must be a statement of regret or apology for the people who have been let down by the system so very badly.

Finally, there is a case for an inquiry or a Hillsborough-style panel so that we can understand how on earth this outrageous scandal could ever have happened, how it has gone on for so many decades, letting down so many families, and what lessons can be learned to ensure that this never, ever happens again.

[Several hon. Members rose—]

--- Later in debate ---

[Mims Davies]

I thank my hon. Friend for her intervention. Many of us have constituents, friends or family who are affected by epilepsy, which, in itself, is very serious, or by bipolar disorder. Appropriate use remains very important. For the vast majority of patients, treatment can be effective and useful if it is done right—if managed, if educated and if understood. The argument, therefore, should not be about ceasing use, but about telling the truth and looking at appropriate use during pregnancy. Men use the drug too, so we need to take a balanced approach and reflect all situations.

[Norman Lamb]

The hon. Lady is making really good points. I totally agree with her that the drug is appropriate for most people. I just want the guidance to be followed. The guidance is clear that for women of childbearing age it should not be used unless there is no alternative. We just need to stick to that guidance and make sure it is implemented everywhere.

[Mims Davies]

Absolutely. Speaking about this issue in this Chamber will empower our women constituents, before and during pregnancy, so they can be informed and make the right choices. That is the outcome we should all be hoping for.

Similar issues were raised yesterday during a debate in Westminster Hall on mesh implants. New mothers in particular had taken the advice they were given without hesitation. A woman’s first pregnancy can be an unsettling time with all the changes their body goes through. I would imagine that for people suffering from epilepsy or bipolar disorder that time is even more nerve wracking. It is absolutely right that we are measured when we talk about these issues.

It is important that our specialists ensure that women are given the correct and proper guidance. Patients need knowledge and they need it more than anyone. They live with the consequences if things go wrong and they will always look back on their decisions. If they have not been given the right information, how can they truly know they have made the right decision for themselves and their family? Siblings are often impacted as well.

The Government and MPs have a really important role to play in raising awareness of medical issues during pregnancy, including those concerning sodium valproate. I recognise the efforts that have been made, with labelling on packages. I am sure the Minister will agree, however, that more needs to be done. This drug, introduced in 1974, has been crucial, but support for families affected is also crucial. I welcome the fact that young people who have been affected are to be included in the new framework for health and social care for children and young people. It has been a real battle, but clinical commissioning groups and local authorities are getting to grips with it. It is really important that they receive support on a local level. I welcome the Minister’s forthcoming meeting with the all-party group, and I know that Ministers are taking this matter seriously, but I ask the Department for assurances on similar health issues affecting women, such as those relating to Primodos and mesh implants. We have moved to an incredible place on blood contamination—some of my constituents were affected by that—and constituents have written asking me to raise this issue too. We want more action, and there is a common denominator.

--- Later in debate ---

[Liz McInnes]

That was probably the first research paper to suggest that it was not just coincidence and that there was a causal relationship, which is why it is seen as definitive.

The pharmaceutical company Sanofi, which many Members have mentioned, has stated that it has kept in line with scientific knowledge when reporting side-effects in a foetus. However, from as early as 1983 the CSM and the MHRA reported the problems caused by taking sodium valproate in pregnancy, but did not insist that Sanofi issue warnings in the form of a patient information leaflet.

Even now, to this day, epilepsy charities report that women are not aware of the potential risks when taking the drug in pregnancy. A survey has shown—I know it has already been mentioned, but it does no harm to reinforce these findings—that 18% of women taking sodium valproate were not aware of the risks during pregnancy, and 28% said that they had not been informed of any risks. That is despite the production by the MHRA of a valproate toolkit designed to help healthcare professionals to talk to women with epilepsy about the risks of taking valproate during pregnancy.

[Norman Lamb]

The hon. Lady is making an incredibly valuable contribution to the debate. Does she agree that if it is clear during a period of time that the amount of a drug that is being prescribed is significantly more than the guidance suggests is appropriate, it is not acceptable for the drug company, the regulator and the Government simply to be passive and to allow that to continue? If we knew that this drug was being over-prescribed, which appears to be the case, why on earth was action not taken?

[Liz McInnes]

That is a very good point, and if we manage to establish an inquiry, it should look into the issue of over-prescribing.

I want to mention other agencies. The European Medicines Agency has also recommended a strengthening of measures to reduce the risk of harm to babies born to mothers taking valproate. Information from the House of Commons Library outlines a situation in France, which has already been referred to, with an estimate that between 425 and 450 children were affected by birth defects attributable to valproate from 2006 to 2014. The French Parliament this year voted to set aside €10 million for claims related to valproate. The Health Minister, Marisol Touraine, described this as a “starting point” and stated that compensation would ultimately be paid by those deemed responsible:

“I regret that Sanofi didn’t seek an amicable settlement as a matter of principle. I hope Sanofi will change its position.”

Sanofi had no comment to make on the Minister’s remark. A class action has also been brought by the French association for people affected by sodium valproate against Sanofi.

In the UK, in 2004 a class action was brought by a group of families under the Consumer Protection Act 1987, which was expected to go to trial in 2011, but the litigation was discontinued prior to this after the Legal Services Commission withdrew funding. It is disappointing that this Government have said that there are no current plans to introduce a compensation fund similar to that in France, and I urge them to reconsider.

I fully support the remedial steps outlined in the motion, including the call for an inquiry, and this Government must bring forward a care plan and financial assistance for the victims of this national scandal.

--- Later in debate ---

[Dr Philippa Whitford (Central Ayrshire) (SNP)]

I, too, pay tribute to the right hon. Member for North Norfolk (Norman Lamb) for securing this debate and trying to air this issue again. Epilepsy affects 1% of the population—600,000 people—and it is not a trivial condition. It is dangerous. As we have heard, 1,200 people a year die due to epilepsy, and we must not diminish that fact. At the lowest level, someone who has a fit after being well controlled suddenly cannot drive again, which can have quite a big impact, but at the other end of it there is death. We therefore must be careful not to send out a message that anti-epileptic drugs are bad, or even that Epilim is. It works really well, and it is one of the drugs that often can control the most dangerous seizure—the tonic-clonic or grand mal, as it used to be called—without the use of other drugs.

Almost all anti-epileptic drugs carry risk. Sodium valproate is the worst by far, but all the ones we have heard of in the past—phenytoin, phenobarbital, primidone and carbamazepine—carry some risk. We therefore have to recognise that it is not just as though the doctors prescribed the wrong drug. This condition is really hard to deal with, and we need people to have specialist input. We are really asking that from when girls reach puberty until they reach menopause or get into their 50s—when there is no risk of them having children—decisions are made with them by specialists.

As we have heard, there was obviously a recognition right back in the ’70s that sodium valproate could bring about congenital abnormalities, but what appears to have changed is the scale. If we look back, we see that people used to discuss a 2% risk of malformation and “some possibility” of developmental delay. We are now talking about 10% of children having a birth defect, which might be something like a minor cleft palate that can be dealt with, right through to spina bifida, meaning the child faces major physical disability. On a much worse scale, some 40%—almost half—of children face some form of developmental delay, which might mean an autistic spectrum disorder, learning difficulty or ADHD. That is a big change.

We heard earlier about the 1995 paper that started to bring these cases together. Before that, there were predominantly case reports—someone saying, “Oh, this is odd; I’ll write it up”—but we needed someone to bring things together. When we hear that 400 affected babies have been born in the year since the recent attempt to deal with this issue, we realise that had the yellow-card reporting system been working when we had perhaps 500, 600 or 700 cases a year, the situation would have been spotted much more quickly.

The system utterly failed to recognise a pattern and has to be reformed. If a woman gives birth to a child with a birth defect, or there is in the very early years recognition of some kind of major developmental delay, and she is on a drug, that should be reported, and I do not care what the drug is. Her GP may never have seen such a thing before and might not recognise that there could be an association, but someone sitting in the MHRA who is receiving 400 or 500 reports certainly ought to.

The obvious question is how to tackle this issue. The toolkit was put out in February 2016, because we have recently recognised the huge scale of the problem—the change is the recognition of the scale. It is therefore shocking and incredibly disappointing to hear that more than two thirds of women have not received any part of it. It is great that there is now some marking on packaging, but perhaps more of that needs to be combined, because we then do not have to depend on people remembering to hand something out or to pick something up. We would be empowering women to say, “Oh, what’s that? You’ve never talked to me about that,” and both sides would have the chance to have a discussion.

We have predominantly focused on the results of using sodium valproate during pregnancy but, as the hon. Member for—

[Norman Lamb]

Strangford.

[Dr Whitford]

Sorry. I am not doing very well today. Six hundred and fifty names is hard enough; adding another 650 constituencies just does my head in!

As the hon. Member for Strangford (Jim Shannon) mentioned, by the time a women is pregnant—crucially, by the time she knows she is pregnant—it is too late, because these abnormalities happen in the first trimester: those first two months when the brain and spinal cord are forming and the arches of the face are combining. That is why we particularly see neural tube defects, brain function abnormalities and cleft palate. Many women who lead hectic lives may already be two months pregnant by the time they finally know, and that means it is too late. That is why the annual review is important.

Epilim is perfectly fine for a girl to use if it gives good control for grand mal seizures, but we need to flag up the fact that when she is expected to be approaching puberty, discussions need to start with her and her family. Family planning is important for all women, but for women on these kinds of drugs, which must be stopped in pregnancy, it is crucial. We need to have that discussion so that the alternatives can be considered. I echo the comment that if a woman is pregnant and did not plan for that, she should not stop the drug on her own. She should have emergency access to a specialist who is able to look at her type of epilepsy and discuss the options with her, such as whether it would be safe to take nothing or if it would be better to change to something else. It should be recognised that uncontrolled seizures in pregnancy can cause the loss of the mother and the baby. We must not have any kind of irresponsibility by not flagging that up.

We had a debate in this Chamber last week on baby loss. It was a very powerful cross-party debate on the anguish that people face, whether it is due to early miscarriage, stillbirth or neonatal loss. We talked about that loss and bereavement, but any of us—male and female—who have had children know of the expectation and joy that comes from waiting for a child. There is still exactly that bereavement when we know that our child will face a life of physical and mental difficulties, and of learning disabilities. We know that a child with a marked learning disability has only a 7% chance of working. For the parents, there is the stress of knowing that there will come a point when they are not there, and of wondering how their child—perhaps now a young adult—will actually survive facing a harsh world.

Financial support is absolutely crucial to give families peace of mind. We need an inquiry, but rather than holding multiple inquiries, we should recognise that bringing some of these common themes together into one would be a much more powerful way to get people to understand that we are talking about relentlessly repeating patterns. Let us try to reform the things that allowed this to happen and to ensure that we support the families and the children to whom, sadly, it has happened.

--- Later in debate ---

[The Minister of State, Department of Health (Mr Philip Dunne)]

I congratulate the right hon. Member for North Norfolk (Norman Lamb) on securing this debate through the good offices of the Backbench Business Committee. He has, as he indicated, taken a particular interest in this issue since it was brought to his attention during his time as a Minister in the Department of Health, and all tribute to him for being so persistent in that endeavour.

This is a very important issue. Members on both sides of the House have come together once again—for two weeks in a row, as the hon. Member for Central Ayrshire (Dr Whitford) pointed out—to demonstrate their concerns. Those are not party political; these issues affect all our constituents, irrespective of any party political alliance.

We have had some very constructive suggestions on both sides of the House, and we have heard a number of the personal cases that constituents have brought to the attention of Members, which has been very moving. Rather than rehearse them, I will just point to my hon. Friend the Member for Congleton (Fiona Bruce), who went into some detail, as the hon. Member for Washington and Sunderland West (Mrs Hodgson) said, about the particular circumstances of the two outstanding campaigners—I am pleased they are here to witness this debate—who have spoken so powerfully about the effects that valproate has had on their lives and those of their children. Like other hon. Members, I have very great sympathy for those families who have been affected by valproate use in pregnancy.

The Association of British Neurologists advises that valproate remains the most effective treatment for generalised epilepsy, and this is reflected in NICE guidelines. For some women with epilepsy, it may be the only effective treatment—the only thing that prevents a potentially life-threatening seizure. However, because of its risks, valproate should be used to treat women of child-bearing age only if other drugs are ineffective or not tolerated. This is not a clear case of use or no use, as was clearly pointed out by the hon. Member for Central Ayrshire, who speaks with authority on these matters.

The key challenge for clinicians is to ensure that the drug is used only by those who really need it, that they are fully informed about the risks and that their treatment is closely monitored.

[Norman Lamb]

Does the Minister share my aspiration that we should be aiming to ensure that every woman, wherever they live, has access to a specialist unit?

[Mr Dunne]

I will come on to how access—and monitoring—needs to be improved.

As my hon. Friend the Member for Eastleigh (Mims Davies) acknowledged, it is vital that no woman stops taking valproate, or any other anti-epileptic, without first discussing it with their doctor and, if necessary, with the relevant specialist. The Medicines and Healthcare Products Regulatory Agency is currently working with European regulators, and with experts and healthcare bodies, to decide what further action should be taken. Like many anti-epileptics, valproate has always been known to carry a risk if taken during pregnancy. However, as hon. Members have pointed out, important questions have been raised, here in the Chamber and elsewhere, about the extent to which women have been informed over the decades about the risks.

At the time that valproate was first marketed in 1974 for the treatment of epilepsy, animal studies had shown that there might be a risk of birth defects. Health professionals were made aware of this and were expected to weigh the benefits against the risks. Difficult prescribing decisions had to be made. Campaigners have highlighted, as did the right hon. Member for North Norfolk in his opening remarks, the minutes of a meeting of the Committee on Safety of Medicines in 1973 where the Committee concluded that it would be best not to mention the risk of birth defects in package inserts. As has been said today, this paternalistic attitude has no place in the NHS of today. Now, patients and doctors are expected to make decisions based on open communication on the risks and benefits of a treatment, which is underpinned by legislation. However, that was not always the case, and the views expressed by the CSM in 1973 were not unusual at that time, particularly in relation to life-saving medicines such as anti-epileptics.

I am pleased to say that medical practice has changed considerably since then. Comprehensive patient information leaflets have been a legal requirement since 1999, and warnings have been issued when new evidence on risks has become available. The MHRA issued bulletins in 1983 and 1993 to update prescribers on the risk of birth defects, and in 2003 warned about a possible risk of developmental delay in children exposed to valproate during pregnancy. Warnings were extended to include a risk of autism in 2010, and a reminder bulletin was issued in 2013. Information on the full magnitude and nature of the risks with valproate first became available in 2013, following a long term follow-up of children whose mothers had taken valproate and other anti-epileptics.

Given those concerns, the MHRA initiated and led a Europe-wide review which completed in November 2014. The review found that there was still a clinical need for valproate despite the significant risks to the child if taken in pregnancy, and that it should remain an option for women of childbearing potential only where other treatments had failed or were not tolerated. To mitigate the risks, the recommendation was that women should use effective contraception and treatment should be supervised by a specialist. In January 2015, the MHRA sent a letter to doctors and pharmacists about the strengthened restrictions. As well as updating statutory information, the MHRA has developed the valproate toolkit referred to by hon. Members.

Although I am not allowed, quite properly, to use props while I am at the Dispatch Box, I cannot resist pointing out to hon. Members that the warnings now on valproate packaging include the following very specific warning:

“Warning for women and girls: This medicine can seriously harm an unborn baby. Always use effective contraception during treatment. If you are thinking of becoming pregnant or you become pregnant, talk to your doctor straight away.”

In addition to that warning on the packaging, there are other elements in the toolkit. I will not trouble the House to read them out, but they include patient cards, information for patients, and information for prescribers and clinicians. The toolkit was distributed to doctors and pharmacists in February 2016. Messages sent through different channels then and subsequently have reinforced the recommendation of its use to support discussions with patients.

In view of the importance of the issue, in the autumn of 2015 the former Minister for Life Sciences brought together healthcare bodies to support the promotion of the toolkit and ensure that there was co-ordinated messaging to health professionals and patients. The MHRA further developed that group into a 39-strong stakeholder network of health system organisations, health professional bodies, charities and campaign groups, which include In-FACT, FACS-Aware, the Organisation for Anti-Convulsant Syndrome, Epilepsy Action, the Epilepsy Society, the Royal College of General Practitioners and the Royal Pharmaceutical Society.

Our communications strategy has been informed at every step by the valproate stakeholder network, including NHS England. In response to concerns about gaps in awareness that have been identified by several Members in today’s debate, in July of this year the toolkit was redistributed to GPs and specialist prescribers, and additional materials were distributed to pharmacies. More than 100,000 healthcare professionals received the toolkit this year.

What are we doing beyond that? We are tracking changes in prescribing. Data show that between 2012 and 2017, there has been a decline of approximately 26% in the number of women of childbearing age treated with valproate. The decline is sharper among 10 to 17-year-olds. Although usage is declining, there has not been the step change that we would want, and, as has been mentioned today, the results of surveys of patient awareness of the risk clearly indicate that more needs to be done.

I am aware that campaigners have called for the use of the toolkit to be made mandatory. The MHRA and NHS Improvement sent out a patient safety alert in April 2017, which directs organisations systematically to identify women and girls taking valproate and to support them to make informed choices. MHRA and NHS Improvement are monitoring the implementation of the alert and are following up directly with relevant organisations. That action has been taken consistently across the UK and through the devolved Administrations.

The MHRA is fully involved in the new Europe-wide review to look into whether further restrictions are needed. An expert working group of the Commission on Human Medicines, a committee of the MHRA, has been convened to inform the UK’s position during the EU review, which is expected to conclude early in the new year. This review is also looking carefully at whether there is any evidence of adverse effects in babies whose father took valproate. I am sure the whole House was moved by the personal testimony of the hon. Member for Bury North (James Frith) about the consequences of childhood meningitis and his six years on valproate to control epilepsy.

I hope I have made it clear that we are taking the matter seriously. I have enormous sympathy for those families who have been affected by valproate use in pregnancy. In the short time that I have available, I want to touch on a couple of the issues raised by the right hon. Member for North Norfolk. He talked about support, and we have an established system, reinforced by the Children and Families Act 2014, to establish a new framework for local authorities and CCGs to secure services for children and young people who have special educational needs or disabilities.

I will not get into the question of compensation or an inquiry here. What I will say to the right hon. Gentleman is that a meeting has been arranged for the chair of the all-party group with my Lords colleague the Under-Secretary of State for Health, and the issues that the right hon. Gentleman has raised should be brought up at that meeting. I encourage other members of the all-party group to join him in that meeting at the Department.

I will look at the feasibility of extending the yellow card system, as hon. Members have described. I think it is right that we shine the spotlight of transparency to improve patient safety. No Government have done more than we have to make that happen in other areas, and the victims of valproate deserve nothing less.

[Norman Lamb]

I sincerely thank all right hon. and right hon. Members for participating in today’s incredibly well-informed, responsible and powerful debate. This is a fight for justice. The Minister is right that we have a meeting planned for 7 December with his colleague the noble Lord O’Shaughnessy, and I hope very much that by then, the Government will have reached a view on the case for compensation. The Government have a choice: they can either deny the unanswerable moral case for treating these people properly, or they can take the moral lead and accept that the state has a responsibility to these families. I hope very much that they do the latter.

Question put and agreed to.

Resolved,

That this House notes with concern that there has been a systematic failure to inform women of the dangers of taking the epilepsy drug sodium valproate during pregnancy, resulting in thousands of children being born with congenital malformations, disabilities and developmental disorders since the 1970s as a result of fetal exposure to the drug; welcomes the launch of the Valproate Toolkit by the Medicines and Healthcare Products Regulatory Agency in February 2016 to ensure that women are informed of the potential risks of the drug, but further notes with concern a recent survey which found that 68 per cent of women have still not received these safety warnings; calls on the Government to take immediate steps to ensure that the materials in the Valproate Toolkit are distributed to all prescribing clinicians, pharmacists, and women who are being prescribed the drug; calls on the Government to require all clinicians prescribing sodium valproate to women and girls of childbearing age to discuss annually with the patient, the risks during pregnancy before a prescription is renewed; and further calls on the Government to bring forward proposals for a care plan and financial assistance to the victims of sodium valproate in pregnancy and their families.