Oral Answers to Questions

Liz Twist Excerpts

Tuesday 26th March 2019 Commons Chamber

[Stephen Hammond]

The hon. Gentleman can believe everything my right hon. Friend the Secretary of State says. He has delivered on his promise to work with the NHS to deliver a long-term plan, to deliver the funding that will make it possible, and to deliver the workforce that will ensure the plan is not undermined.

[Liz Twist (Blaydon) (Lab)]

3. What assessment he has made of the effect on life expectancy projections of health inequalities; and if he will make a statement.

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

The latest work from the Office for National Statistics shows that life expectancy is projected to increase, but none the less there are inequalities within those figures. That is why we are taking action to reduce smoking, prevent cardiovascular disease and diabetes, improve cancer outcomes and, of course, tackle childhood obesity. I can also add that reducing health inequalities is an important component of our NHS long-term plan. All local health systems will be expected to set out how they will specifically reduce health inequalities by 2023-24.

[Liz Twist]

Sir Michael Marmot, the world-recognised authority on public health, has warned that the country has, since 2010, stalled in the task of improving the life expectancy of our population. There are already wide inequalities. For example, a Gateshead man can expect to have 57 years of life in good health, compared to the England average of 63.4 years; and a Gateshead woman can expect to have an average of 59.1 years in good health, compared to the England average of 64.1 years. What is the Minister doing to redress those real inequalities?

[Jackie Doyle-Price]

As I mentioned, the NHS long-term plan will be asking local health systems to specifically address this issue. Certainly, there are particular trends that I personally want to address. They are the real inequalities that affect people with learning disabilities, which are worse than the figures the hon. Lady mentions. We also see that the outcomes she refers to can be laid at the door of a slowdown of heart disease and stroke mortality improvements, so we really need to focus our interventions there. We are also seeing an increase in the fall in life expectancy due to alcohol misuse.

NICE Appraisals: Rare Diseases Treatments

Liz Twist Excerpts

Thursday 21st March 2019 Commons Chamber

[Liz Twist (Blaydon) (Lab)]

I beg to move,

That this House believes that NICE appraisal processes do not properly address the medical treatment needs of people with rare diseases such as muscular dystrophy, phenylketonuria and cystic fibrosis; and calls on NICE to urgently review the appraisal process.

I thank my hon. Friend the Member for North Tyneside (Mary Glindon), who is chair of the all-party group on muscular dystrophy, and the hon. Member for Strangford (Jim Shannon), who is chair of the all-party group on cystic fibrosis, for their help in securing this debate.

My constituent Archie McGovern is 12 years old. He is bright and lively, and full of beans now, but it has not always been like that way because Archie has PKU— phenylketonuria. Putting it simply, PKU is a genetic condition that means Archie and others are unable to handle phenylalanine, which is found in protein—so no meat, no fish and no dairy products. There is a whole range of other things that we would not think had protein in them: the list is endless. On top of that, he has to take a protein substitute drink—if we can call it that, as it is very unpleasant—to keep the balance right.

At present PKU is not curable, and a hugely restrictive diet is the only way of controlling the condition throughout childhood and adult life. The condition is picked up by the pinprick test at birth, and for those identified as having PKU that is the start of a difficult lifetime of dietary control. For children that is especially difficult, but it is also very important because failure to control the condition can lead to serious neurological problems.

That is how it was for Archie until quite recently, but there is a treatment that can help to control PKU. It is called Kuvan, and although it was licensed 10 years ago and is widely available in many countries in Europe, and further afield, it is not available to patients in the UK. Not everyone with PKU responds to Kuvan, but it is believed that more than 20% of people will respond well and see a significant improvement in their life.

[James Morris (Halesowen and Rowley Regis) (Con)]

The hon. Lady makes an important point about Kuvan and PKU. As she will know, last year I and other Members—including the hon. Member for Dudley North (Ian Austin)—took part in the MPs’ PKU diet challenge, so I am well aware of the restricted diet that is required for those who suffer from that condition. The way that NICE evaluates Kuvan does not take into account the social costs associated with the alternative treatment for PKU. That highly restrictive diet impacts on families and wider society, and NICE should consider that point.

[Liz Twist]

Like the hon. Gentleman, I took part in the PKU diet for a day challenge. It was indeed very restrictive, even though I knew it was only for one day.

Archie is one of those who responds well to Kuvan, and last year, his parents took the difficult decision to pay to buy him the drug. That took a great deal of soul searching on their behalf, and it cost them dear—£25,000 a year, even though Archie is currently on just half a dose. They know that for many people with PKU, or for parents with more than one child who has PKU, it is simply not possible to self-fund, and they are acutely conscious of the unfairness of that. The difference that Kuvan has made to Archie is real and significant: increased concentration and energy, so that he can make the best of his education; no recurring mouth ulcers, which were a real problem; and a chance substantially to increase the number of exchanges he can have, and eat a more normal diet. For Archie, Kuvan has made a real difference.

Archie’s case, and those of many others in other constituencies, prompted us to form the all-party group on phenylketonuria, and to consider how Kuvan could be made available to those who would benefit from it. Nearly 10 years after Kuvan was approved, that treatment does not seem to have been an appraised, and in England it is still not available on the NHS. Since we set up the group, there has been a move for Kuvan to be appraised by NICE, and discussions have been held with NHS England about a managed access agreement. We were disappointed to learn just before Christmas that no agreement had been reached on that managed access agreement, and that the NICE appraisal was to be via the single technology appraisal route, and not the highly specialised technologies programme. I understand that following a legal challenge, the Department of Health and Social Care is again considering the appropriate appraisal route, and the all-party group has made representations on that point.

When talking about the NICE appraisal system it is easy to get lost in technical details—QALYs, and everything else, that means nothing to people on the street—but what really concerns people is whether or not there is a fair chance that the drugs they need will be fairly assessed and made available on the NHS.

[Thelma Walker (Colne Valley) (Lab)]

I thank my hon. Friend for securing this debate. One of my constituents suffers from Batten disease and is receiving cerliponase alfa on compassionate grounds. However, NICE will not now recommend that treatment, which in part is due to cost. Does my hon. Friend share my view that allowing patients on to clinical trials when there is no funding to deliver the treatment, places them and their families in an incredibly difficult and uncertain position regarding their future?

[Liz Twist]

I certainly agree, and such things happen too often. We need a system that properly evaluates those drugs.

[Mark Tami (Alyn and Deeside) (Lab)]

I have certainly found that NICE sometimes says that the pool of people is not big enough to evaluate, but the clue is in the title: these are rare diseases. NICE cannot carry on doing that, particularly in cases where it is clear that the drug has a really positive effect.

[Liz Twist]

I agree with my right hon. Friend. Indeed, that is the burden of my speech.

As I was saying, I am not going to get into the fine detail of the process. It seemed to us in the all-party group that many conditions, as my hon. Friends have said, face the same problems. The all-party groups for muscular dystrophy and for cystic fibrosis are two that come to mind, but there are many other rare diseases, as we have heard, that do not have all-party groups but face exactly the same difficulties. Since this debate was announced, some other organisations have contacted me to ask me to make sure that we do not forget their concerns.

We found that there are a number of aspects of the NICE appraisal system that are problematic in assessing Kuvan and many other rare drugs. The existence of just two appraisal routes for treatments to be assessed by NICE results in the likelihood of two or more treatments being stuck in the middle by not meeting the restrictive criteria of the highly specialised technology route and therefore being assessed under a single technology appraisal route. Some of them are rare but not rare enough. As we have heard, the majority of treatments for rare diseases are likely to be assessed within the single technology appraisal, which is designed for non-rare treatments. This impacts on both the cost threshold and the approach to evidence, which are all designed for more common diseases.

On lifelong chronic conditions, NICE’s approach values the lifelong cost of treatments. It looks for near future benefits as well. That means it is difficult for chronic diseases such as PKU and treatments that produce lifetime and life-enhancing effects to get access to new treatments. NICE cost appraisals assume that patents do not expire. NICE will assume the existing price of the drug will stay the same. That is illogical as, particularly with older drugs such as Kuvan, the drug will soon go off-patent. This affects the benefits assessment. On non-health costs, NICE performs its calculations based on costs paid and saved by the NHS. That ignores the wider cost to society and individuals caused by diseases like PKU.

I do not seek to criticise NICE staff. They work within a system that we have given them, but it is clear from the many questions to Ministers, debates in this Chamber and in Westminster Hall, the creation of all-party groups, and correspondence with Ministers about individual cases that there is a very real issue here which must be addressed. That is why we are asking, in this motion, for NICE to review its processes to reflect the current issues we face.

Many drug companies have been in touch since this debate was granted to send me briefings. They have been keen to explain their side of the argument and to point out what they see as the problems in the NICE appraisal process for their drugs. There is some overlap with patient concerns, but I am here today to speak on behalf of the community of people with rare diseases, not on behalf of the drug companies. Let me be clear, the fact that this debate is about NICE appraisal processes does not excuse the pharmaceutical companies from their responsibilities. There is a balance to be struck between their need to recover the cost of the development of drugs and make a reasonable profit, and a huge responsibility on them to make their drugs affordable for our NHS.

In this debate, I have focused on PKU and Kuvan. With another drug treatment for PKU on the horizon, Pegvaliase, there is a real worry that even with a drug that may produce really life-changing results for a wider group of patients, those with PKU will again be left without the treatment they need, even when it exists. There are treatments for other rare diseases, too: Spinraza for spinal muscular atrophy and Orkambi for cystic fibrosis, which are not only life-improving but life-extending.

This is quite simple. There are drugs available that can drastically improve the lives of those affected by rare diseases. When I hear that NICE’s appraisal process is an obstacle to improving lives, I feel really angry. We are reducing the lives of children and adults to a cost-effectiveness analysis. We need to find a way forward to amend the appraisal system so that we do not let people fall through the cracks or fall behind. The drug companies must also do their bit to ensure that their drugs are affordable for the NHS, especially when early access via a managed access agreement is being discussed.

That is why today we are calling on NICE to review its appraisal processes and make the necessary changes to stop people falling through the cracks and make available these drugs, which can make such a difference to patients—to people such as my constituent Archie McGovern, whose mum Barbara set me on this path as a new MP.

[Several hon. Members rose—]

--- Later in debate ---

[Liz Twist]

I hope that hon. Members will forgive me if I do not list them all, but I want to respond to the Minister. First of all, Minister, it is not easy for us on the Back Benches to criticise and lobby. It is really difficult for us, because these are our constituents. They are real people who have real conditions. We have tried to be constructive in the debate and said that we have identified issues around the NICE appraisal system that we think need to be addressed urgently. I notice that he mentioned the review and said that our concerns would be drawn to its attention, but will he ensure that there is dialogue and input before the review takes place to ensure that it is not just technical, but addresses the concerns that we have raised?

[Steve Brine]

indicated assent.

[Liz Twist]

I see the Minister nodding, so perhaps that can be recorded in Hansard. He also said that he has heard from us about these issues before, but I can tell him that he will hear from us again—

Integrated Care Regulations

Liz Twist Excerpts

Monday 18th March 2019 Commons Chamber

[Jonathan Ashworth]

My hon. Friend makes his point typically eloquently and with force. May I say to him that we miss him on the Labour Front Bench? He was a real rock in the shadow Health and Social Care team. It is typical of him that when he decided last week that he could not support the Labour Front Bench position on a referendum, he took the honourable course of action and chose to leave the Front-Bench team. I think that he has the respect of many in the House for that position.

This is the nub of our opposition tonight. Contracts are still being put out to competitive tender, even when some commissioners claim that they do not wish to do this. Here lies the danger: nothing prevents, and some things might encourage, these integrated care partnership contracts being put out to tender and perhaps being won by a private sector provider. Ministers repeatedly tell us that ICPs, and before them accountable care organisations, are not about ushering in a further role for the private sector. If that is the case, and if patients and staff are to have confidence that the ICP contracts will not end up in private hands, the Government’s overarching competition legislation must be changed first. As that legislation has not been changed, and as we will still have commercial contracting for the delivery of medical services, there is a risk that a multi-billion pound contract covering hundreds of thousands of people and packaged up for 10 to 15 years could be handed over to a big provider. That is why the Health Committee, which is broadly supportive of these integrated care models, issued this warning in its report:

“The ACO model”—

it was using the terminology of the time—

“will entail a single organisation holding a 10–15 year contract for the health and care of a large population. Given the risks that would follow any collapse of a private organisation holding such a contract and the public’s preference for the principle of a public ownership model of the NHS, we recommend that ACOs, if introduced, should be NHS bodies and established in primary legislation.”

We agree.

The impetus for this contract comes from the example of Dudley, which I am sure the Minister will want to talk about. When the chief executive of Dudley CCG attended the Select Committee, even he conceded—although he said that it was unlikely—that because of the procurement rules, it would not have been possible to have kept out private providers applying for the contract. When asked whether the contract could go to a private provider, he said:

“In theory, it is technically possible for that to happen”.

Although Mr Nigel Edwards of the Nuffield Trust shared the Minister’s scepticism that the contract could go to a private provider, he did concede before the Select Committee that:

“To privatise in the sense of handing over all the assets and staff to a private contractor is a theoretical possibility.”

NHS England’s own analysis of the contract published at the end of last week concedes:

“However, it should be understood that current NHS law and EU and domestic procurement law prohibits CCGs or NHS England from taking steps, whether through evaluation criteria used in a procurement or otherwise, to disqualify certain categories of provider (e.g. independent sector providers) from bidding or being awarded commissioning contracts.”

This is our first objection, because Labour is not prepared to nod something through when there is a theoretical possibility hanging over us that, in the words of NHS England, an independent sector provider could not be disqualified from being awarded commissioning contracts.

[Liz Twist (Blaydon) (Lab)]

Does my hon. Friend agree that to cure these problems, we need not secondary legislation, but a thoroughgoing review of NHS legislation?

[Jonathan Ashworth]

My hon. Friend is right; we need to sweep away the Lansley legislation and put the NHS on a sustainable public footing. NHS England attempts to reassure those who are concerned about this contract by putting in place some further conditions. It talks about transparency and insisting on a “minimum level of assets”. Note the qualifier “minimum”—not all assets. It also talks of a

“restriction on carrying out any business other than that required by the ICP Contract”.

Again, note the words used—not a prohibition on other business activities, just a restriction. This is in the circumstance when the contract is awarded to a non-statutory provider.

NHS commissioners are obliged by law to advertise many larger NHS contracts, giving firms such as Virgin Care the chance to bid. Since the Lansley Act came in, £10 billion of contracts have gone to private providers, and there is a further £128 million of NHS tenders in the pipeline. It is all very well for the Secretary of State to go to the Health and Social Care Committee as he did a few weeks ago and say:

“There is no privatisation of the NHS on my watch, and the integrated care contracts will go to public sector bodies to deliver the NHS in public hands.”

The Secretary of State is not in a position to make that promise to the Committee, because of the legislation that is in place.

Health and Care Professions Council: Registration Fees

Liz Twist Excerpts

Thursday 14th March 2019 Westminster Hall

[Liz Twist (Blaydon) (Lab)]

It is a pleasure to serve under your chairmanship, Mr McCabe. I thank my hon. Friend the Member for Coventry South (Mr Cunningham) for securing this important debate, which I am glad to have the opportunity to speak in. For many years, it was my privilege to work with many healthcare professionals, so I take a keen interest in this subject. I was happy to add my signature to the letter to the HCPC to oppose the, at the time, 18% proposed increase in fees.

It is right that healthcare professions should be regulated and that those bodies should be independent of the Government, which means that fees must be attached to the registration. Having set fees, however, those bodies must have a view to the people and the professions that they regulate. Many people covered by the Health and Care Professions Council are not big earners, despite playing an incredibly important part in our healthcare system, and they are often missed out when we talk about healthcare workers.

We talk about doctors and nurses, but we rarely talk about all the other NHS staff who are integral to our healthcare system. I have worked with paramedics, occupational therapists, dieticians and many others, who are an important part of that healthcare team. In the last 18 months, I have had personal experience in my family of the great work they do—on stroke rehabilitation, for example. It is important work, but the pay is not great. Typically, people are paid at band 5, which starts at £23,000 a year, so we are not talking big bucks.

[Mary Glindon (North Tyneside) (Lab)]

My hon. Friend is making a good argument about the different levels of pay. Does she agree that one of the most unfair arguments for raising the fees is that they are lower than for other professional bodies? Dentists and doctors get paid much more money, so there is no fairness in that comparison.

[Liz Twist]

I agree with my hon. Friend and I will come on to that point later.

Although we in this House talk about how valuable healthcare workers are in all kinds of debates, the fact is that their pay has not kept in line with the real cost of living, so an 18% increase in registration fees is huge and out of all proportion with the pay increases that they have had in recent years. Most of them do not have a choice about whether to register; they must be registered to be able to work. The increase will bring the total increase in registration fees to 40% since 2014, which is incredible.

As hon. Members know, one issue that the NHS is facing is staff shortages in certain areas. It cannot be ignored that something such as this increase can only be a disincentive to staff looking to do those important jobs. As other hon. Members have said, another key issue is the impact of social workers. They are currently covered by the HCPC, but they are about to go off to their own regulatory body. The significance of that should not be lost. While it will mean a reduction in income, of course, it will also mean a significant decrease in the number of fitness-to-practise cases, which are inevitably expensive to prepare. Currently, 25% of HCPC registrants are social workers, but more than 50% of fitness-to-practise cases are in the social work field. That significant factor should be taken into account when the HCPC considers its fees.

On fitness-to-practise cases, I well remember from representing people how devastating it is for any health professional to face a complaint or a fitness-to-practise case, but many people are being held in limbo waiting for their case to be heard, or even awaiting a decision that the case should not be pursued. A 2018 report by the Professional Standards Authority for Health and Social Care was critical of the HCPC and suggested that cases were being referred to the fitness-to-practise panel by its investigation committee too readily. The report stated:

“In our review of its performance this year, we set out our concerns about how the HCPC approaches the discontinuance of cases. Our view was that the approval of discontinuance decisions by the HCPC (with no additional information or evidence being presented since the decision of the Investigation Committee to refer the case) may indicate that the Investigation Committee is failing to identify when there is no case to answer.”

Clearly, that has a significant impact on the professional under investigation and on the operation of the HCPC, and is a factor in costs.

As other hon. Members have mentioned, the proposed 18% increase will have a disproportionate impact on part-time workers, who are predominantly women and mostly in the NHS, because it is a flat-rate fee. That does not seem reasonable.

We hope that the Health and Care Professions Council will listen to the comments made in the debate. Unison has also made some suggestions that the HCPC should consider. First, there should be a pause in implementing the decision to increase fees until the impact of social workers moving away can be assessed. It will clearly be a significant factor in the future, so it seems appropriate that the full impact should be known before an important decision to increase by 18% is made. Secondly, I am told that the Health and Care Professions Council has £18 million of cash reserves, which should be used to allow the impact of the move of social workers to be considered before fees are raised. Thirdly, there should be a more stringent look at other means of raising revenue, rather than just increasing fees.

The Health and Care Professions Council carried out a consultation on the fee increase. By its own admission there were 2,398 responses, many of which opposed the proposed increase. The HCPC has written to explain its position to those of us who signed the letter that we wrote before it made the decision. In that letter, it compared its fees with those of other healthcare regulators. Frankly, that comparison is not valid, as my hon. Friend the Member for North Tyneside (Mary Glindon) has already said. A comparison with the fees paid by dentists, which are £890 a year, or doctors, which are £390 a year, is completely misleading. Typically, HCPC registrants will be paid vastly smaller salaries, so it is not just apples and pears, but apples and strawberries. There is a real mismatch and disparity in the comparisons being made, so they are not valid.

As other hon. Members have, I call on the Health and Care Professions Council to reconsider its position and to agree to Unison’s suggestions as a way to avoid the 18% increase in fees.

Mental Capacity (Amendment) Bill [Lords]

Liz Twist Excerpts

3rd reading: House of Commons & Report stage: House of Commons
Tuesday 12th February 2019 Commons Chamber

[Chris Bryant]

Yes. People will also attribute bad intention to the person when what is happening is that the short-term memory is simply not functioning properly. For instance, someone with very little short-term memory may find it difficult to turn up on time, as I mentioned earlier. That may be not because they are being lazy, truculent or difficult but simply because their brain does not work in that way. It may mean that their capacity is so diminished that, according to the Bill, they cannot make decisions. Alternatively, it might just be one of the elements that needs to be dealt with—they need to find tricks to circumvent the problem, and medical and clinical professionals can help.

This is why I tabled my amendments. Neurorehabilitation, when done well and on a sustained basis, can take an individual from being low functioning and high dependency, perhaps needing three or four people just to be able to wash themselves, clothe themselves and provide for themselves physically, to a much higher level of personal functionality and much greater independence. I have made that argument from a different place, in the sense that taking someone from needing four people to look after them to just one person coming in once a day for an hour or so could be an enormous financial saving to the taxpayer. That is why neurorehabilitation and the work that has been done in many cases can be so important.

Neurorehabilitation is really important in relation to the Bill. We might be able to take somebody from a place where they are not truly able to make a decision about what treatment they should be undergoing and, according the Bill, deprive them of their liberty, to a place where that would no longer be appropriate. My anxiety is that if there is no incentive in the system to ensure that neurorehabilitation is provided to people, there is a danger that we just discard them and leave them by the side, particularly as we are now talking about a three-year term rather than a one-year term. I think the clauses at the end of the Bill militate in favour of renewal, rather than providing a clear option not to renew at that point.

I have an anxiety that perhaps in some care homes and other places there just might be an incentive to think, “Well, this person isn’t going to get better so we’re not going to do anything to try to help them to get better.” I do not want to give up on so many people. Thanks to what the Government have done with the major trauma centres, we now save about 800 or 1,000 more lives every year following road traffic accidents and the like, but we need to give people quality of life. We do not have enough people working in this field. We need to recruit many more people. If 20 people were inspired by what we are talking about today to go and work in that field—there are so many high rewards for people working to take people from high dependency to low dependency—that would be a success in itself.

[Liz Twist (Blaydon) (Lab)]

Does my hon. Friend agree that the all-party group inquiry heard some remarkable examples of people who have gone through the pathway with neurorehabilitation prescriptions and are increasingly able, with great work and support on everyone’s part, to carry out many functions?

[Chris Bryant]

Absolutely. One key thing that we saw repeatedly—this is an issue for the Bill, I think—was the fluctuating nature of some brain injuries. For instance, fatigue is a very common feature of many brain injuries. I do not mean just feeling tired because you are sitting at the back of a debate in the House of Commons and somebody is wittering on for far too long and you fall asleep, but real, genuine fatigue. I mean the kind of lassitude that leaves you unable to move from one side of the bed to the other. It is often misunderstood, because it might look like laziness to somebody with a judgmental eye. That lassitude can pass or go through phases and can sometimes be a bit difficult to explain or predict. I am therefore really keen that we ensure, in all the processes in the Bill, that anyone with an acquired brain injury is regularly and repeatedly reassessed so that they have an opportunity to escape. That is important.

--- Later in debate ---

[Caroline Dinenage]

I am actually coming to that very section of the Bill now.

We are proposing that a review of an authorisation will be completed by an approved mental capacity professional when an objection is raised by someone with an interest in the cared-for person’s welfare. It is vital that objections can be raised not just by the person themselves but by others who have an interest in their welfare. This could be a member of the care staff, a close friend or a family member. The Government amended the Bill to clarify that objections can be raised at a pre-authorisation stage, and these new amendments clarify that objections can be raised at any time throughout the authorisation and can lead to a review of the ongoing need for deprivation of liberty.

Amendments 39, 40 and 42 relate to authorisations that need to vary in order to prevent them from ceasing because small variations need to be made. Under the current deprivation of liberty safeguards system, an authorisation is tied to one specific location. This creates a situation in which a person has multiple authorisations if they need to move between settings. If a person is in a care home and has a planned stay in hospital, for example, a new application has to start from scratch. The Law Commission recommended that authorisations should be able to cover more than one setting to remove that duplication. There is an exception if someone needs to go into hospital in an emergency, when variations can be made without a review taking place first, but one should be held as soon as possible afterwards. In some cases, the responsible body will change even though the person still resides in the same location. For example, a care home resident may become eligible for NHS continuing healthcare, but their location and care will not change.

Opposition amendment 49 seeks to require the responsible body to carry out the consultation required by the Bill in every case, removing the ability of the care home manager to complete the consultation. We are clear that it is not appropriate for certain functions to be conducted by the care home manager, which relates to what the hon. Member for Hornsey and Wood Green (Catherine West) was saying. The Bill explicitly prevents anyone with a prescribed connection to a care home, which will be set out in regulations and will include care home managers and staff, from completing the assessments required for an authorisation and the pre-authorisation review. We are clear that decision making lies with the responsible body, not the care home manager.

Consultation is another matter. We expect, as part of good care, that care providers are consulting with the people in their care, and with those with an interest in that person’s welfare, to establish their needs, wishes and feelings. That applies regardless of whether someone is subject to a liberty protection safeguard and should happen on an ongoing basis. Having care home managers complete the consultation required by the Bill is simply building upon current good practice. The Bill has clear safeguards for that purpose. Objections do not need to be raised through the care home manager. They can be raised directly to the responsible body by the person or by someone interested in their welfare. If there are concerns about the care home manager’s ability to complete the consultation required under the Bill, the responsible body can decide to take on the care home function and complete the consultation itself.

[Liz Twist]

Many hon. Members will have had a large amount of correspondence from constituents on this matter. Does the Minister accept that there is huge concern about the operation of the provisions and about the role of care home managers more generally? The amendments seek to address that concern, but that feeling remains.

Children with Life-limiting Conditions

Liz Twist Excerpts

Tuesday 29th January 2019 Westminster Hall

[Liz Twist (Blaydon) (Lab)]

My hon. Friend mentions the fundraising that is done by some excellent organisations and lots of individuals, some of whom we have heard about. Does she agree that the Government should undertake to fund increased pension contributions for staff working in hospitals, instead of giving with one hand and taking with the other?

[Julie Cooper]

I totally agree, and I will come to that point in a moment.

The average NHS contribution to children’s hospices is only 9%. Recent additional costs relating to the implementation of the NHS staff pay award and extra pension costs have pushed many hospices into a dire financial position, with closure a real possibility. Where hospices are forced to close, the NHS is left to fund the entire cost of health and social care for those children and young people.

In that context, the announcement by NHS England in December of £25 million of extra funding for children’s hospices was extremely welcome. However, children’s hospices do not know how to access that extra funding. Derian House Children’s Hospice in Chorley, which currently supports 12 families from my constituency, told me this week that there is no clarity about how that newly committed funding can be accessed. As many Members mentioned, since the publication of the NHS 10-year plan there has been confusion about what exactly has been promised.

The Minister will be aware that the 10-year plan promises that, over the next five years,

“NHS England will increase its contribution by match-funding clinical commissioning groups (CCGs) who commit to increase their investment in local children’s palliative and end of life care services including children’s hospices.”

Does she agree that that is confusing, and will she clarify the following points? Will the £25 million promised in December be only for children’s hospices or for a wider group of children’s palliative care services? Can she guarantee that, as a result of the long-term plan, the £11 million children’s hospice grant will be protected and increased to reflect the growing demand and complexity of care provided by those lifeline services? The total spend on children’s palliative care in hospices, hospitals and the community currently exceeds £25 million, so the promised funding could be viewed—I am sure this is unintentional—as a cap on NHS spending on children’s palliative care. In the light of that, can she reassure me that the NHS will indeed provide additional funding for children’s hospices?

I turn briefly to the financial pressures that parents of children with seriously ill children often experience. The 2018 “Counting the cost” survey of families who provide long-term care for a disabled child found that many experienced huge financial difficulties. A third of all families surveyed said they had additional costs of more than £300 each month. Some 46% of families had been threatened with court action for non-payment of bills. That is hardly surprising given that 87% of the families surveyed were unable to work because of their caring commitments.

CLIC Sargent has highlighted that children suffering with cancer often have to travel longer distances than adult patients for regular treatments, placing a significant additional financial burden on parents already coping with so much. Will the Minister commit to introducing a package of financial support that includes a children and young people’s cancer travel fund for parents who care for children with life-threatening diseases? Will she also spare a thought for bereaved parents and accelerate the introduction of the children’s funeral fund that so many Members have requested?

In conclusion, I ask that the Minister answers the specific points that I and other hon. Members have raised, and commits to implementing a comprehensive strategy that provides a consistent standard of joined-up, adequately funded children’s palliative care that has full parity with adult care.

Appropriate ME Treatment

Liz Twist Excerpts

Thursday 24th January 2019 Commons Chamber

[Liz Twist (Blaydon) (Lab)]

I thank the many constituents who have contacted me about their experiences, asking me to take part in this debate. In particular, I thank Pauline Donaldson of the Tyne and Wear ME/CFS support group, who plays a really important part in making sure that I and other Members from Tyne and Wear are aware of the very real problems faced by people who have this debilitating condition.

It is six months since we last debated this issue in Westminster Hall. That is six months more that people with ME have been waiting to see real progress on finding effective biomedical research into ME to work towards finding effective treatments for their condition, and six months more to suffer from the effects of ME. They are weary and impatient, and angry that treatments like CBT and graded exercise—psychological treatments—are still being put forward as the most common treatment for what is a physical condition. I am glad to take this opportunity to speak on their behalf.

Those people are looking for four things, the first of which is funding for biomedical research. I was shocked to hear that patients and families are helping to fund research themselves. It is really important that we find a way of having that biomedical research done through public funds.

Secondly, many people with ME and their supporters have demanded that the use of CBT and graded exercise therapy be stopped. I will come on to talk about my constituent’s experience of that. Thirdly, they want to see more training for GPs in recognising the signs and symptoms of ME. Invest in ME Research is doing much and has information packs, but it does not have the funds to extend that medical training everywhere. Fourthly, they would like to see an end to families with children with ME being subject to child protection procedures.

To finish, I want to talk about my constituent Angus, who was a senior lecturer in business at a north-east university. He says:

“In 2012, every aspect of my life changed when I was struck down with ME aged 47”.

He lost his job. He says that he was never a “couch potato”—in fact, just the opposite—and still loves active pursuits, but can no longer do any of them. He says:

“Climbing the stairs in the house seems more exhausting than any mountain I’ve climbed in the past.”

He underwent CBT and GET and found that it made him not better but so much worse that it was a relapse. I wish I had the time to read his evidence. It is crucial that we address this problem and give our constituents with ME the treatment they deserve.

[Several hon. Members rose—]

Mental Health First Aid in the Workplace

Liz Twist Excerpts

Thursday 17th January 2019 Commons Chamber

[Liz Twist (Blaydon) (Lab)]

I thank the hon. Gentleman for giving way and congratulate my hon. Friend the Member for Liverpool, Wavertree on securing the debate. Does he agree that we need not only to encourage people to talk through industry schemes such as Mates in Mind; we also need to listen? That is why the move towards mental health first aid workers is so important.

[Johnny Mercer]

The hon. Lady is right. There is no point in getting people to come forward and talk about mental health, which can be very difficult, if we do not have the services or access to them to help them, after they have made themselves vulnerable in that way. That is why I am so keen to keep our foot to the gas and ensure that we start delivering on this. We have made progress—that is undeniable—but clearly there is a long way to go, and I will come on to that.

I want to address the point about legislation. As someone who does a lot of work in the armed forces community and on the armed forces covenant, I know that people will say, “Why legislate?” I have learnt in this place that we can have a number of good ideas and initiatives that we can encourage people to do but, ultimately, this is too big a challenge to be left to personalities involved in companies at different times. Sometimes we have to legislate for it. This is not a problem for the companies that already do this, but sometimes the most vulnerable people in our communities deserve the Government legislating and letting them know that we are on side.

Ovarian Cancer: Diagnosis and Treatment

Liz Twist Excerpts

Tuesday 30th October 2018 Westminster Hall

[Liz Twist (Blaydon) (Lab)]

Will the hon. Gentleman join me in congratulating Target Ovarian Cancer and other cancer charities on highlighting this issue and putting forward some very sensible recommendations for improving treatment? Does he agree that it is shocking that our survival rates in the UK are among the lowest in Europe?

[Lee Rowley]

I absolutely do. All these things are a work in progress, but I hope that through debates such as this, through talking about it and through all the fantastic work the charities and the APPG do we can move things forward, make progress and, in time, have fewer women suffering from this and more women getting treatment more quickly than today.

The question of ovarian cancer is, however, more than a technical discussion about diagnosis, awareness, data and treatment, as important as those are. Behind each statistic is a real person who has been unexpectedly struck down by the disease and, in far too many cases, might not be around today to tell the story of their fight. As part of the preparation for this debate, the parliamentary digital team and Target Ovarian Cancer asked people to share stories of their fight and those of their family members.

I am hugely grateful to both organisations for helping with that, and to everyone who got in touch. The stories we received were heartbreaking and heartwarming in equal measure, tragic and terrific, and whatever the outcome, they were inspiring to us all. I cannot possibly do justice to everybody who got in touch or to all the stories and experiences out there, but I will share a few today to remind us of the importance of making progress on this disease.

Danielle got in touch to tell us about her mum, who was diagnosed with stage 3 ovarian cancer in September of last year. Like many other people’s, her symptoms were fuzzy: irritable bowel syndrome, feeling full, swelling and weight loss, which could have been a hundred other things. By chance, the doctor who saw Danielle’s mum also sent her for a blood test, which quickly confirmed that there was an issue. A month or so later, Danielle’s mum started chemotherapy, and in January this year she had a full hysterectomy. After a 10-hour operation, it was hoped that everything had been caught and the focus was on recovery. By June, however, the cancer had returned; sadly, a few months later, in August, Danielle’s mum lost her battle, just 10 months after diagnosis.

Forty-year-old Sarah also had symptoms such as weight loss, feeling full and ovary pain. Before the cancer was diagnosed, she tried many times to find out what the issue was, including once being told, “Well done,” for having lost weight. In Sarah’s case the blood test that often highlights an issue came back normal, which emphasises the imperfect nature of the diagnosis. A nine-hour operation and six rounds of chemotherapy later, Sarah continues to battle her cancer while looking after her two young children.

We also heard the story of the daughter of Jean, who was diagnosed in 2011 with stage 4 ovarian cancer as a result of severe bloating and loss of appetite. After major surgery and four rounds of chemotherapy, the news came through that the cancer had spread. Her battle ended early in 2013.

Emma told us about her mum, who was told she was suffering from irritable bowel syndrome; the actual issue was found too late and she lost her battle, aged 64, just six weeks after diagnosis.

Seren started feeling unwell while at university, aged just 19. Unable to get a doctor’s appointment, she came back home and was diagnosed with cancer. Her tumour was the size of a rugby ball and her operation was pushed forward as it was stopping her eating and affecting her breathing. Chemotherapy followed and today Seren is recovered and working for a cancer charity.

Christine is also one of the good news stories. She was diagnosed with stage 2 ovarian cancer aged 35, having had to visit three different GPs to resolve the problems she was suffering from, which had initially been put down to colitis and anxiety. After her diagnosis, an emergency operation and 10 chemotherapy sessions followed. That was in 1985 and Christine is still here; she has been able to share her story in the last few days.

Finally, Linda was diagnosed with ovarian cancer in September 2017, having initially felt unwell at the beginning of summer while she was on holiday. The classic symptoms were there: bloating, feeling full and knowing that something “wasn’t right”. Multiple trips to the GP followed until, finally, a blood test was taken, confirming the cancer. Linda had a full hysterectomy that same month and spent much of the next few months recovering.

I know that many hon. Members may be wondering the obvious: why am I standing here making the case about a disease that cannot and will not ever affect my body? As with so many others, although it may not have touched me personally, it has touched my family. Linda is my mum. Up until last year, she had had relatively good health and there is no history of ovarian cancer in my family. I generally try to keep my family out of politics—I was the fool who ran for Parliament, not them—but last year was a nightmare that none of us wants to experience again, and we have no wish to see anyone else experience the same. My dad, my brother and I watched my mum live through an extremely scary diagnosis, hugely invasive treatment and one of the hidden aspects of all cancers, the brush with mortality that takes time for sufferers to get to grips with.

Happily for me and my family, my mum is one of the lucky ones. She is sitting at home in north Derbyshire right now, possibly watching this debate on the internet. She has had a hard year and we are extremely proud of her. Yet I know that for every family like mine who have had good news, there are more people who face a tragic outcome. My mum and Danielle’s mum were diagnosed about the same time and I know that my mum’s journey, like that of Danielle’s mum, could have been so different. I do not want anyone else to face what those of us who know and understand what this disease forces on sufferers have faced. Better treatment, diagnosis and a cure cannot wait. I am grateful for the opportunity to discuss these hugely important issues; I look forward to the debate and the Government’s response. Together, I hope we can beat ovarian cancer.

Social Care Funding

Liz Twist Excerpts

Wednesday 17th October 2018 Commons Chamber

[Liz Twist (Blaydon) (Lab)]

Nothing brings home the reality of the problems we face in social care like the experience of our constituents. A month ago, I was contacted by the son of a constituent. His mother, who has Alzheimer’s, had a care package in place that was working well and she was being kept at home. However, she also has heart problems and, sadly, she was admitted to hospital, via A&E, some weeks ago in July. He told me that she is now well enough to leave hospital, but her care package cannot be reinstated. She certainly could not go home without support, and he was becoming increasingly frustrated at the lack of a care plan. He feared that the longer she stayed in hospital, the worse her overall health would become. He found that totally unacceptable, and I have to say I did too, and I immediately took up her case with the local authority. Officers looked into this case and found that, yes, despite the best efforts of the social work team, it had not been possible to find a provider to fulfil my constituent’s needs. Other people are also waiting for a care package, as providers cannot be found quickly. Like her son, I find this an appalling situation.

I tell this real-life story not to tug at the heartstrings, but because it reveals a few of the problems we have with the current social care system. My constituent has high needs due to her physical and psychological conditions. She was fortunate—pre-hospital admission—to have an established care package that worked for her and helped her to live independently. We know that there are many people across England who have unmet needs. They are unmet because the funding is not there to give them the help they need and that local authorities would wish to give them. This cannot be right.

The case reveals very clearly another problem in our social care system—the fragility of the home care market in many parts of the country. What a state we are in when we cannot find people willing to provide help to those who need it; when providers are unable to run a business employing people who will do that job; and when the price local authorities are able to pay is set at too low a level to provide any service at all. I want to make it clear that I want to see our social care services directly provided by local authorities to restore such control.

The case also reveals another problem with our social care system: that of not treating our social care workforce with dignity, respect and, yes, providing them with decent pay and conditions. These staff look after the most intimate needs of our most vulnerable people, and the least we can do is give them a level of pay that recognises the skills they need. To do that, we need a plan for social care. We need more money to provide the care that people need to remain independent and to help people at an earlier stage. We know that earlier intervention works and reduces pressure on the NHS.

As we approach the Budget, I call on the Minister to ensure that local authorities have the funds they need to provide that care. An extra £240 million will not put things right—and yes, I know how much it is in Gateshead; I have looked it up. It is just another piece of string trying to hold together our pressurised social care system. I also call on the Minister to talk to local authorities and our trade unions about establishing a pay system that recognises the importance of working in social care and the skills involved. In short, we need a thoroughly thought-out and resourced national workforce strategy for social care.

Owing to time constraints, I cannot talk about residential care, but we need to resolve the sleeping situation. I am aware that there is an appeal, but those staff deserve to be considered and paid properly.