Health and Care Bill

John Hayes Excerpts

Report stage
Monday 22nd November 2021 Commons Chamber

I appreciate the concerns that Members have raised, and would like to reassure them, the House and, indeed, industry. These technical amendments will not change the policy intent of the original provisions. I hope that they will address the valid concerns that my hon. Friend the Member for North East Bedfordshire has understandably raised today, and I hope that he and colleagues across the House will be able to support them in place of his amendments.

[Sir John Hayes (South Holland and The Deepings) (Con)]

It was my hon. Friend the Member for North East Bedfordshire who inspired my intervention. I just want the Government to make it clear that they are not contributing to a strange paradox which seems to prevail in modern society, that of being simultaneously more puritanical and more prurient. We are prurient in that we let the tech giants corrupt our children in all kinds of ways, and puritanical in that we are censorious about the jokes people tell, the language they use, and how much ice cream—or indeed Christmas cake—they eat.

[Edward Argar]

I am grateful to my right hon. Friend. It has been a while since he intervened while I was at the Dispatch Box, so this has been a pleasure. I have never seen him as in any way a puritan; I suspect that he is rather more a cavalier in his approach to life.

My hon. Friend the Member for North East Bedfordshire has also tabled amendments to schedule 16 which would insert in the Bill an exemption from the advertising restrictions for brand advertising. I am grateful to him, but I can reassure him that the Bill already delivers that exemption, and I therefore believe that his amendments are not necessary to achieve the effect that he seeks. We made that clear in the consultation response published in June this year, and in speeches made in Committee.

My hon. Friend has also tabled new clause 14. As I am sure he and other Members are aware, the Government consulted on different approaches for restricting online advertising in 2019, and considered alternatives submitted through the consultation process. However, it was felt that the alternatives, including the proposal from the Committee of Advertising Practice to use a self-regulatory mechanism based on targeting, were sufficiently similar to the policy options previously consulted on. These were not sufficient to meet the objective of the policy, namely to protect children from advertisements for less-healthy food and drink.

NHS Dentistry: Lincolnshire

John Hayes Excerpts

Wednesday 20th October 2021 Commons Chamber

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

Smiles are very important. When we smile, it makes us happier and it makes those around us happier, but unfortunately many of my constituents are struggling to smile because they have problems with their teeth and just cannot get an NHS dental appointment. That has left some of them in very significant pain and discomfort.

Many constituents have contacted me to share their experiences: people waiting years to access NHS dental care; children unable to access NHS orthodontic care, with a choice between hugely expensive private treatment and doing without; service families posted to Lincolnshire struggling to get an appointment. Figures show that just 41% of adults in Lincolnshire have accessed NHS dental care in the past two years, and less than a third of children have accessed it in the last year.

Access to specialist treatment is even more limited. Lincolnshire has gone from having three full-time consultants in orthodontics, based in Boston, Grantham and Lincoln, to just one permanent consultant two days a week, based in Lincoln. Unlike neighbouring counties in the east midlands, Lincolnshire has no specialist dental services either in paediatrics or in restorative dentistry, which means significant travel out of county for patients who require more specialist help.

It is therefore perhaps not surprising that 80% of Healthwatch complaints in Lincolnshire relate to problems with access to NHS dental services. I would like to speak about how we could improve the situation for my constituents.

[Sir John Hayes (South Holland and The Deepings) (Con)]

The circumstances are just as bad as my hon. Friend suggests. Indeed, Lincolnshire is the worst served of any midlands county, with the lowest proportion of dentists in the population. There are detrimental effects on children, as she said, and it is the poor who tend to suffer most. Finally, given her professional expertise, I wonder whether she could comment on those who have undiagnosed conditions that a visit to the dentist might reveal, notably oral cancer.

[Dr Johnson]

My right hon. Friend is a big champion for his constituents and for ensuring that they have good dental care. My hon. Friend the Member for Louth and Horncastle (Victoria Atkins), who cannot be here this evening, is also vigorously campaigning to improve access to dental care in rural areas such as her constituency, particularly in Mablethorpe, where urgent care has now been restored and where she is committed to seeing non-urgent care renewed.

The journey to being a dentist begins at university dental schools, which are heavily over-subscribed. The Government trained 21% more dentists in 2018-19 than in 2008-09. It was forward-thinking of them to increase the number of dentists; given the increase of only 7% in population, one would have expected it to result in more dental care. However, that has not happened in practice, for two reasons: partly the increase in part-time working and flexible working, but particularly the dramatic increase in the number of dentists working in the private sector as opposed to the NHS. What is the Minister doing to increase the number of dental students still further? What is she doing to ensure that they are trained particularly in areas of low provision?

I note that there is currently no university dental school in the east midlands—or in East Anglia either, in fact. It is well known that people often stay where they train; it is therefore perhaps not surprising that there are fewer dentists in Lincolnshire. Does the Minister agree that, building on the success of the Government’s investment in opening a new medical school in Lincoln to train more doctors, we should build an east midlands dental school in Lincoln, creating a centre of excellence locally for specialist services and thereby increasing the number of local dentists being trained?

There is already a precedent for opening dental schools in under-served areas: the last school was opened in Plymouth to serve a deficit in the south-west. Following the establishment of Lincoln Medical School, the addition of an adjunct dental school would be a welcome addition to Lincolnshire and the surrounding area. It would boost training and skills opportunities for young people in Lincolnshire and the wider east midlands and increase the retention of new local dentists, while helping to address access to routine NHS dental care and specialist care for patients. I also ask the Minister what efforts are being made to increase local specialist provision for paediatrics and restorative dentistry.

Following their university careers, graduates become foundation trainees, and we need to look at where we place our foundation trainers and trainees. Newly qualified dentists need to work in a foundation job to get an NHS provider number, but they can work in a private practice without one. That is something of a disincentive for people to work as NHS dentists. We also need to consider where the postgraduate training takes place. For example, there are currently six full-time training places at Grantham Hospital, just outside my constituency, but this year it has been given only two new graduates to fill those places. That is creating a reliance on temporary and overseas staff to deliver services, but it also means that there will be fewer dentists trained locally and therefore fewer dentists for the population.

Does the Minister agree that all new dentists should work their foundation year in the NHS, as doctors do, and does she agree that, given that trainees often stay where they train, the foundation places in areas of low provision should be filled first? Would she consider “golden hellos”, such as those provided in some medical specialties in areas with low provision, to attract more dentists to under-served areas?

At the heart of the issue of NHS dentists moving into the private sector is the current target-based dental contract that was introduced by the Labour Government in 2006. It was widely considered unfit for purpose even before the pandemic, which has only served to highlight its flaws, and I am aware that the Government are rightly looking to replace it. The present system effectively sets quotas on the number of patients whom a dentist can see. NHS dentists are commissioned to deliver a set number of units of dental activity—UDAs—which caps the number of dental procedures that they can perform in a given year. If they deliver over 4% more than they have been commissioned to deliver, they are not paid for the extra work; moreover, they have to bear the cost themselves of any materials used, any laboratory work, and all other overheads. That penalises dentists who treat patients in the greatest need.

The contract also penalises dentists who under-deliver on the activity that they were commissioned to deliver, perhaps owing to difficulties in filling a practice vacancy. In addition, it pays a set amount for particular types of treatment, regardless of the number of teeth that need to be treated. For example, a dentist would be paid three units of dental activity—worth an average of £75 —for one simple extraction, but would also be paid £75 for an entire course of treatment including six fillings, three extractions and a root canal treatment, which would not be enough to cover their overheads. That means that the system effectively punishes dentists for taking on new patients with high levels of dental need.

There is also—believe it or not—a huge variation in the value of UDAs. I said that the average was £75, but in fact, across England, dental practices are paid anything between £15 and £45 per unit of dental activity delivered, with an average value of £27.50. In Lincolnshire and Leicestershire, the value is between £18 and £38, with an average value of £25. For example, in Spalding, Lincolnshire—in the constituency of my right hon. Friend the Member for South Holland and The Deepings (Sir John Hayes)—two NHS practices just over a mile apart are being paid £23 and £28 per UDA respectively, a difference of more than 20% for the same work in the same town. That illustrates how dysfunctional Labour’s dental contract has become, making it more difficult for practices with lower UDA rates to recruit because they cannot pay the dentists whom they hire as much for the same work. When we compare this with private practice, where remuneration is based on actual work done, it is clear why this flawed contract has had a devastating impact on recruitment and retention among NHS dentists.

Research by the British Dental Association shows that nearly half all dentists plan to stop providing NHS services or to reduce their NHS commitment, and more than a quarter plan to move to fully private provision in the next 12 months. That has been seen in Lincolnshire, where there has been a net drop of 30 dentists providing NHS services in the year to the end of April 2021.

I am pleased that the Government have recognised the problems that this contract is creating, and are piloting alternatives. It is crucial that they deliver on their commitment to roll out new contractual arrangements by April 2022. Within the new contract, remuneration needs not only to reflect the number of dentists working in high-need areas, but to address the problems of attracting dentists to work in rural areas.

Dentists trained overseas can play an important role in filling vacancies in under-served areas. They already contribute to our NHS, and many more wish to come here, but despite the lack of NHS provision, dentists are not currently on the shortage occupation list. Moreover, it is possible for dentists from countries such as those in the EU where we recognise the equivalence of university dental qualifications to come and work here in the private sector immediately, but additional paperwork and training, with additional costs, are required for them to work in the national health service. That is a clear disincentive to working in our health service, and I would like the Minister to elaborate on what she is doing to remove bureaucratic burdens such as those that limit NHS capacity.

The covid pandemic has further exacerbated problems with access to NHS dentistry. In the spring of 2020, all routine dental care in England was necessarily paused for two months. With social distancing, gaps between treatments and decontamination between patients having been essential since then, dentists have been able to see only a fraction of their usual patient numbers. In North Kesteven alone, 22,733 NHS dental appointments were lost between April 2020 and March 2021, further adding to the unprecedented backlog.

In the short term, to address the impact of covid-19 infection prevention and control protocols limiting the number of patients who can be seen, funding for ventilation equipment could drastically reduce the time lost between seeing patients by reducing the number of times the air is changed over an hour. Currently, after each aerosol-generating procedure—which includes most courses of dental treatment including drilling—dentists are required to leave the treatment room empty for up to an hour, which dramatically lowers the number of patients they are able to treat. The experience of my constituent Emma highlights this. Her seven-year-old daughter is still waiting for a routine check-up from November 2019, and Emma is being told that the surgery is running at 50% capacity due to coronavirus prevention controls.

This fallow time can be reduced, and patient throughput increased, by installing high-capacity ventilation. However, this can cost a practice up to £10,000. England does not currently invest in ventilation for dental practices, although the devolved nations of Wales, Scotland and Northern Ireland do. Capital funding for ventilation equipment would have a transformative effect on the throughput of patients, and would in effect pay for itself through increased patient charge revenues from paying NHS patients. Could the Minister please outline what review mechanisms are in place to reduce dentists’ covid measures—particularly now that the fantastic vaccine programme this Government have put in place means that more than 90% of people have antibodies—so that dentists can increase capacity from 65% to 100%?

Lincolnshire is proud to be the home of the Royal Air Force, including RAF Cranwell, RAF Digby and RAF Barkston Heath, which are in my constituency of Sleaford and North Hykeham. Repeatedly moving location can pose particular difficulties for service families as they find themselves on lengthy dentists’ waiting lists. My constituent Karen waited five years for her and her three children to access an NHS dentist after her husband was posted to my constituency, and she is still having difficulties in securing adjustments for her disabled son. Our veterans, cared for by the Ministry of Defence during their service, often find it difficult to get an NHS dentist at the point of retirement. The Armed Forces Bill will enshrine in law the military covenant, our commitment to our brave service personnel and their families. Will the Minister outline what work she is doing to ensure that military families and veterans can access high quality NHS dental care wherever they move to, in order to meet their particular challenges of moving around frequently?

Without significant changes soon, the problems facing NHS dentistry in access and in the recruitment and retention of dentists will continue to grow. My constituents in Lincolnshire deserve to be able to see an NHS dentist, and dentists working in Lincolnshire deserve a contract that correctly rewards them for the work they do and addresses the perverse incentives that currently exist. After a decade of work on the new system, there can be no more delays. I hope the Minister can give me assurances that the Government will stick to their commitment to roll out new contractual arrangements by April 2022, so that my constituents can smile once more.

[The Parliamentary Under-Secretary of State for Health and Social Care (Maria Caulfield)]

I congratulate my hon. Friend the Member for Sleaford and North Hykeham (Dr Johnson) on securing this important debate. I am really pleased to hear dentistry getting some more parliamentary time and being put on the radar, because it is such an important issue. I am aware that there are long-standing concerns around dental access in parts of the east midlands. In my response I will consider the impact of covid on access to dentistry. We are aware of this, and I will focus on it initially. However, we have to acknowledge that there were problems in accessing NHS provision before covid. Even once we are through the recovery from the pandemic, we will need to address those issues once again. They will not disappear once the pandemic has passed.

As my hon. Friend highlighted, dentistry posed a significant risk during the pandemic because of the aerosol-generating procedures. I thank all the dental teams across the country who showed such resilience and dedication during this period, because they kept going and provided urgent care while facing considerable risk and anxiety. The steps we took during the pandemic ensured the safety of both dental patients and staff, but they have led to a reduction in the number of patients who can be seen.

We have worked closely with NHS England to consider the level of NHS dentistry that can be safely delivered in the environment of a pandemic. The thresholds that have been set for dental practices since the start of the year are based on what is achievable while maintaining infection control measures.

My hon. Friend will be pleased to know the UK Health Security Agency published new guidelines on 27 September that include three pragmatic changes to infection prevention and control measures, with a focus on elective care that allows providers to start making further safe changes to open up their services. I take her point, and I will consider what more support can be given for ventilation to help dentistry premises open up further still.

In the light of the reduction in activity, dental practices have now been asked to deliver as much care as possible, prioritising urgent care, care for vulnerable groups and children, and delayed planned care. Practices are now being asked to deliver 65% of their units of dental activity and 85% of contracted units of orthodontic activity from 1 October. Our figures suggest that we are starting to see a natural return to pre-covid levels of activity in dentistry, and I am pleased to see that in England urgent care has been back to pre-pandemic levels since December. We have made real progress there.

[Sir John Hayes]

It is widely acknowledged that the Minister brings both understanding and diligence to her role. Does she recognise that there are particular problems in rural areas such as Lincolnshire? We hear a lot in the place about urban deprivation and metropolitan needs, but we hear rather less about rural deprivation. In healthcare, public services and dentistry in particular, our county is peculiarly deprived. Will she take particular measures to help rural places such as Lincolnshire?

[Maria Caulfield]

My right hon. Friend makes an excellent point, which I was going to address. Officials tell me that the areas where we are seeing significant gaps are referred to as “sheep” and “seagulls,” with the sheep being rural areas and the seagulls being coastal stretches. They are the two areas of the country with a significant shortfall in NHS dentistry provision, and they are the two areas on which we will particularly focus.

National Security and Investment Bill

John Hayes Excerpts

Report stage & 3rd reading & 3rd reading: House of Commons & Report stage: House of Commons
Wednesday 20th January 2021 Commons Chamber

It is quite clear that national security is not just in our defence interests; national security is the defence of our prosperity, and indeed our way of life. With this Bill, we are at last considering our commercial interests, including the interests of our research institutions, and the areas where the two meet. National security is a primary responsibility of Government, and hopefully the Bill will see the Government start to think about our economic strategy and resilience, but they must also think about our social resilience, as so many have said. That has to be a good thing.

[Sir John Hayes (South Holland and The Deepings) (Con) [V]]

This Bill is apposite. It is an appropriate response to an ever-pressing but rapidly changing problem: our national wellbeing. I want to speak briefly about its scope, its dynamism, and the oversight that is necessary to make it as effective as it can be.

That national security is inextricably linked to our national interest is axiomatic. It is obvious that our trade and investment also serve our interest. The potentially paradoxical objects of economic interest and keeping our nation safe are brought into sharp focus by the Bill, which I welcome, and I congratulate the Government and the Minister on bringing it forward. The Government response to the changing circumstances that we face could not be more significant. Malevolent forces of ill intent—both hostile state actors and non-state organisations, including global commercial interests—must be countered, curtailed and, where necessary, controlled. As the hon. Member for Aberavon (Stephen Kinnock) said, greater assiduity in this respect is to be commended. No longer can we be naive about the ethics of the free market or free trade; nor should we appease foreign powers that, frankly, embody tyrannical tendencies, in a chilling echo of the worst of the 20th century.

As the scope of the Bill’s provision must be used appropriately, so it should also be used as necessary, and as circumstances dictate. I am afraid it is not enough to count risk and resilience in the way we have, historically; we need to measure risk and prepare the necessary resilience in a new way. So I am sympathetic to new clauses 4 and 5, which look to establish factors to which the Secretary of State must have regard when assessing risk, but I hear what my hon. Friend the Member for Beckenham (Bob Stewart) said: given that that risk is as I have described it—dynamic—it is important that there should be a framework, rather than specifying precisely what the risks are or may be. It does seem to me, however, that the Government can do more work, as the Bill continues its passage through both Houses, to be clearer about the circumstances in which the Government might assess risk and define its character and the response to it.

That BEIS is to take the lead in this policy area is new, and it empowers Ministers in a very particular way, but in my estimation, security is likely to be the business of all aspects of Government. As has been said by previous speakers, in respect of health, is it really in the national interest for vital health supplies to be dependent on provision from unstable and unhelpful places? Should the supply of technology, which is so critical to so much of what we do in business, in the public sector and as individuals, be in the hands of those who are either capriciously cavalier or maliciously malign? Should our universities become so dependent on funds from overseas that they are obliged to transfer knowledge to individuals or states that may use it against us?

From now on, the whole of Government have to be associated with the effort to measure risk, develop resilience and understand the threats to our security. In those terms, the Bill must allow sufficient responsiveness to metamorphosising threats, to allow us to alter our response to counter those threats. That implies acting quickly and Ministers using their executive power without the scope, space or time always to seek parliamentary approval. If they did seek such approval, they would be doing so almost every week, certainly every month, and possibly by the day or hour. That is why oversight matters so much, yet the Bill is not yet quite right in that respect, as several contributors to the debate have said.

The existing accountability to Select Committees is valuable, but not enough. As the Chairman of the ISC, my right hon. Friend the Member for New Forest East (Dr Lewis), explained, that Committee is designated. Indeed, it was set up for precisely this purpose, dealing with highly sensitive information, including secret documents that would normally not pass through the House as a whole because of the public implications of that. Adequate oversight is therefore essential.

Public Health

John Hayes Excerpts

Wednesday 6th January 2021 Commons Chamber

[Sir John Hayes (South Holland and The Deepings) (Con) [V]]

Supporting businesses as they endeavour to cope with covid and its multiple challenges has rightly been among the Government’s primary priorities. A comprehensive package of support, including the job retention scheme, loans, rate holidays, cash grants and a temporary cut in VAT for the hospitality and tourism sectors, has provided a means of survival, but no more than that. This lifeline for livelihoods must not be cut now. Firms that depend on advertising revenue are particularly vulnerable.

Some 99% of firms in our nation are SMEs. They have a central role, whether it is pubs, family-run hotels, cafés or restaurants, manufacturers or independent local shops. They are at the heart of our economy, and they provide the lifeblood that flows through our communities. We must ensure that covid does not further widen existing disparities, advantaging the big at the expense of the small, advancing the national at the expense of the local and the urban to the detriment of the rural. In that respect, I repeat what I said earlier to the Prime Minister. We need the vaccine in rural communities. It needs to be delivered locally and accessibly for those who live a long way from large towns and cities.

SMEs, particularly those in remote areas, face a daily struggle and need continuing support. Contrast for a moment independent, family-run shops, passed down through generations and struggling to cope, with a Tesco executive rejoicing as profits continue to soar. Contrast an Amazon director celebrating a 37% increase in their earnings with the owner of a much loved bookshop dutifully distilling and distributing the wisdom of ages and struggling with the strain of debt.

Schumacher argued that small is beautiful, and small is indeed beautiful, because people are the things that matter most. The Government must try out a new orientation, in which the needs of small, independent family businesses come above the interests of faceless corporations. A new challenge brings new chances for cathartic change. At present, the Government are preoccupied with responding to covid and are defined by that to some degree, but we can chart a new normal that is fairer, freer and fraternal—a different kind of social order where social capital matters as much as economic prosperity and where the wellbeing of communities is at the heart of all that Government do. As our Prime Minister rightly reiterated, only through determination, perseverance and togetherness will the clouds of this storm clear. We must build a new nation—one nation—based on fraternity at Westminster.

Historical Stillbirth Burials and Cremations

John Hayes Excerpts

Thursday 6th February 2020 Commons Chamber

[Sir John Hayes (South Holland and The Deepings) (Con)]

Proust said:

“The real voyage of discovery consists not in seeking new landscapes, but in having new eyes.”

My eyes were opened to the subject by the hon. Member for Swansea East (Carolyn Harris), since when we have worked together to bring about the children’s funeral fund—under her leadership, by the way; I was merely her acolyte. In doing that work, I became interested not just in that subject but in the whole matter of how people are dealt with when they die and how their loved ones are treated. There is much to be said on that, but time does not permit us to say it all today, for this particular debate is of course about stillbirth and lost children.

The Minister rightly said that things have improved. Some of this issue relates to the past—what happened to those who were loved and lost in years gone by—but I implore the Minister to reflect on whether it is possible for us to do more with local authorities, which are responsible for these matters, because, as she said, cemeteries maintain records, and cemeteries lie within the purview of local government. Perhaps further work can be done to impress on local authorities the need to make information available. Furthermore, in respect of people who are stillborn now, perhaps we could be certain that all health authorities are doing their best. I agree that things have improved, but we need to make sure that that improvement is consistent throughout the country.

In respect of the support given to those who have lost, as a number of Members have said, we need to ensure that the counselling, which makes so much difference, is readily available, quickly, and to whole families. Much is made of maternal love, and rightly so, but too little is made of paternal love. It is sometimes underestimated and often under-celebrated. The love of fathers and grandparents needs to be taken into account, too. Support for whole families when these events occur is critical.

[Tim Loughton]

My right hon. Friend makes a good point about fathers. We talk a lot about the perinatal mental illness suffered by at least one in six women—and much more is being done about that—but it is less known that many fathers, particularly new fathers, suffer from perinatal mental illness as well. The impact of losing a newborn is of importance not just for the mother but equally for the father. We forget that at our peril.

[Sir John Hayes]

My hon. Friend, who served with me in the Department for Education, where he was responsible for matters concerning children, has a long track record of defending the interests of families and fathers. I pay tribute to that and entirely endorse what he has just said. Grandparents also feel these things very deeply. My children are only 19 and 15, so I am not enjoying grandparenthood yet, but those Members who are will know quite how profound their involvement is and their distress at loss can be. I entirely agree with what has been said about counselling, support and mental health.

I hope you will forgive me, Madam Deputy Speaker, for saying a word about public health funerals, a parallel but closely related matter on which the hon. Member for Swansea East and I have also co-operated. Councils in the UK spend about £4 million a year on nearly 15,000 burials or cremations for those with no next of kin or whose families are unable or unwilling to pay. They are known as public health funerals, although rather chillingly they are sometimes described as paupers’ funerals, which sounds so Dickensian, does it not? None the less, public health funerals are held for about 3% of all deaths, and there are real concerns about poor practice. The number of public health funerals has increased dramatically since 1997.

Tragically—in some cases councils are providing the bare minimum provision. Some of these funerals are held behind closed doors and families are prohibited from attending. There are instances of councils refusing to return ashes to families, even when requested. Sometimes, loved ones are not told when the funeral is going to take place, so they do not even know whether their loved one has been buried or, in most cases, cremated. I take this opportunity, with your permission, Madam Deputy Speaker, to call again on the Government to communicate with local authorities about the strict need to ensure that these funerals are dealt with in a decent, civilised and humane way. I am not confident that that is happening across the whole country, and it needs to do so without further delay.

I know that other Members want to contribute, so I shall draw my remarks to a conclusion simply by saying this. I spoke earlier of the Dickensian character of paupers’ funerals. Dickens said:

“A loving heart is the truest wisdom.”

Love is greater than life because love lasts longer and, because it does it should be at the heart of policy makers’ considerations when they deal with the highly important, very sensitive and profound issues that we debate today.

--- Later in debate ---

[Tim Loughton (East Worthing and Shoreham) (Con)]

I had not intended to speak in this debate, but, as is usual with subjects brought here by the hon. Member for Swansea East (Carolyn Harris), it is difficult to resist; they are always such important and emotive issues, and the contributions we have heard have only heightened that fact. I also pay tribute to the sensitivity and real-world personal knowledge that the Minister has brought to this debate, and indeed to everything to do with children and babies generally. It greatly heightens the worth of what we do here.

Stillbirth, a hugely underappreciated subject, has been disproportionately debated in the Chamber in recent years, thanks to the brave personal testimonies of many right hon. and hon. Members whose families have been affected by baby loss in such tragic ways. Their contributions have been hugely valuable and moving, but, more importantly, have led to changes in legislation and greatly raised the profile of this important issue. It is an example of some of the great but underappreciated things we do in the House, and this is another great opportunity for us to do good on a really important issue.

My right hon. Friend the Member for South Holland and The Deepings (Sir John Hayes) was right to mention the connection with mental illness, particularly around extended family members. Too often we look at mothers in isolation, with all the problems of pregnancy and childbirth, whether it is a healthy child or a stillborn child. We need to do more, as a society and as a Government, to think of the family in the round and the implications and impact that the tragedy of stillbirth can have on others, besides the mother.

We have made great progress in legislation in recent years, but, more importantly, we have made much progress in the sensitivity with which hospitals treat bereaved parents. We have legislated for bereavement leave, for example, but we should now consider extending that to this area as well. We have maternity and paternity leave, but losing a baby is hugely traumatic and impacts on the ability of parents to work normally afterwards.

I recently visited again the new bereavement suite in Worthing Hospital, which is officially the best hospital in the country with what is officially the best maternity department in the country. The bereavement suite is a fantastic facility. It is hard to imagine that until a few years ago mothers who had sadly just given birth to a stillborn child, or a child who died soon after, would be left within hearing range of children who had fortunately been born healthy to a mother in the same ward. Greater sensitivity is now shown throughout the whole NHS. It was great to visit that example of how well we now look after parents who tragically cannot take their child home with them.

It was through Worthing Hospital’s maternity department and the experience of my constituent Hayley from Worthing that I became much more familiar with the issue of stillbirth. She came to me to say that she had given birth to a stillborn child at about 19 and a half weeks at Worthing Hospital. She had been there in labour throughout the weekend and had gone through all the pains and anguish of giving birth to a stillborn child. That led to my Civil Partnerships, Marriages and Deaths (Registration etc) Act 2019 and a debate about the whole issue of how we look at and recognise the existence of children stillborn before the 24-week threshold.

Hayley’s experience goes back to the extraordinary revelations we have heard already about how we used to deal with stillborn babies and how the parents had no involvement. Once a woman was delivered of a stillborn baby, any authority or interest the parents had in that child apparently came to an end. It was an extraordinarily brutal and inhumane approach. In the case of Hayley, she and her partner held the child, named the child, had a formal funeral for the child and now know where the child is buried and can mourn. That has been part of the grieving process for them. It is right that the parents be able to do that, if it is their wish; they got the footprint and the photographs, and that was right for them.

The tragedy still is, however, that that child never existed in the eyes of the state, because he happened to have been born before the 24-week threshold, and that is what the 2019 Act aims to address. I wish to make a plea to the Minister. Section 3 obliges the Department of Health and Social Care to conduct a review into how we can do something about pre-24-week stillbirths—they are not technically called “stillbirths”. To give him his due, the former Secretary of State, my right hon. Friend the Member for South West Surrey (Jeremy Hunt), set up the review before the Act became law—I sat on and contributed to it, along with the hon. Member for Washington and Sunderland West (Mrs Hodgson)—but it has not met since 2018 and no subsequent review has been forthcoming. We still need to sort this out, because too many babies are being born just before 24 weeks. In previous debates, I have given examples of children born at 23 weeks, six days and a few hours. In one case, twins were born either side of the 24-week threshold. One was recognised and registered and one was not. This is an anomaly and an inhumanity and it is so important that we deal with it. I urge the Minister to inquire into where we are with the review.

We talk a lot in the House about historical injustices—this debate is technically about historical injustices, although we have spoken more about the present. I think of the historical child sex abuse scandal, the inquiry into which will go on for many years, but there are also parallels with the forced adoptions that occurred many years ago, when women, in an era of different morals, were forced to give up babies born out of wedlock. Many of those children ended up in Australia. There have been many reviews into how that was allowed to happen and into helping those children to re-establish connection with their birth parents.

What downside can there be to giving every assistance, difficult though it may be, to parents who, after having a stillborn child, were given no role in what happened to the body and have no knowledge of where the child’s remains are? I acknowledge that, as the Minister said, it would be difficult, particularly going back several decades, but we must make sure that hospitals, crematoriums and other public agencies do everything they can to respond sympathetically and extensively to queries from those people, just as we have done with child sex abuse and historical forced adoption.

The point I raised with the Minister might meet with some reluctance in some hospitals where practices were not of a quality we might have expected. Another section in my Act empowers coroners for the first time to investigate stillbirths. At the moment, they cannot do that, because a child who is stillborn is deemed never to have lived, and coroners can only investigate the deaths of humans who have lived. In a minority of cases—this practice was not extensive—children born alive have been designated as stillborn to avoid investigation through the coronial system. There is no reason why, once the further regulations are passed—I hope they will be soon; the Minister is right that the consultation ended last June—that we should not get on with giving coroners the power to investigate where they have reason to suspect that a stillbirth is not as simple or straightforward as it appears and that there might have been some medical negligence, oversight or whatever. If there were clusters of unexplained stillbirths, people might be reluctant to be co-operative in tracking down the details of what happened to that child and afterwards. I would hope, in the interests of providing parents who have already suffered a loss with some degree of closure, at least on what happened to the body of that child, that everyone involved in the national health service and other public agencies would want to be as co-operative as possible.

[Sir John Hayes]

I asked the Minister to consider new guidance for local authorities about both past and present practice, and perhaps my hon. Friend might echo that call by suggesting that the Government should make direct and urgent contact with health authorities, for exactly the reasons he has described, with the same kind of vehemence.

[Tim Loughton]

That is really the point that I was looking to make, but my right hon. Friend has done it much more clearly.

If it had not been her intention already, perhaps a takeaway from this debate for the Minister might be to send a communication around maternity departments, and indeed local authorities responsible for crematoriums and others, to express the hope that they would co-operate and to set out the exact extent of the potential issue that we are dealing with.

Acquired Brain Injury

John Hayes Excerpts

Thursday 6th February 2020 Westminster Hall

[Sir John Hayes (South Holland and The Deepings) (Con)]

Today, like every other day, some 954 people will be admitted to hospital with an acquired brain injury. That is one person every 90 seconds. As the hon. Member for Rhondda (Chris Bryant), who has done such great work to highlight the issue, has already said, all kinds of events can be involved. It could be a brain tumour; I am president of the Lincolnshire brain tumour support group. Alternatively, it could be a traumatic event, such as a car accident or a blow to the head, or something else, such as a stroke. The effects are so varied that they are hard initially to diagnose, and then hard to rehabilitate—but that does not mean that we should not do so.

The initial NHS response to strokes, tumours and dramatic, traumatic events is invariably good, but the multitude and diversity of the effects of these events, as well as the difficulties faced by those with acquired brain injury, will often not be obvious until long after the patient has left hospital. Indeed, the unpredictability of the consequences, as described in the previous speech, is immensely distressing for both the person concerned and those around them. There can be inappropriate behaviour and changes of personality, as well as the obvious matter of decreased capacity.

Proust said:

“Happiness is beneficial for the body, but it is grief that develops the powers of the mind.”

Grief is, of course, for the departed, but it is also for any kind of loss. People grieve the loss of capability and capacity—the inability to do the things they once did or the lost chance to do the things they had hoped to.

I had a serious head injury in my youth, but I was able to do all that I had hoped to. As I have said before, I wanted to be a Conservative MP from the age of seven; when I say that, the hon. Member for Rhondda usually raises his eyebrows in disbelief—right on cue, Mr Robinson, he is doing it again. My head injury did not stop me from achieving that ambition, but it might have done if I had had other ambitions, if the treatment and care I received had been different, or if, to be frank, I had not enjoyed the same good luck.

We cannot be clear either about the pace of recovery, which is also immensely variable—not only is the severity of the effect unpredictable, but so is the speed at which people’s lives can change. Although there can sometimes be a deterioration, more often there is a gradual—sometimes very gradual—improvement. That means that although the adjustment they will have to make, at work and home, to go about their normal affairs will sometimes initially be very great, gradually they will be able to do more and more.

As an all-party group we produced an extremely good report, which was, though I say it myself, very well received. It was the result of a great deal of work, done not just by us—in fact, done rather less by us than by the many people to whom the hon. Gentleman has already paid tribute. The Government gave it a good hearing and we have had a good response from Ministers, but as has already been said repeatedly, the issue requires a cross-departmental approach; I have a long speech here that I am not going to make, but I will highlight some points before allowing others to contribute.

The impact on individuals, in respect of benefits, the education system and possible changes in personality and capability, may mean that they engage in activities, including malevolent activities, in which they would not otherwise have engaged. The criminal justice system has a part to play, as does, accordingly, the Ministry of Justice. There are other things too, beyond health: almost every Government Department has a part in addressing the issue of acquired brain injury.

However, Governments are extraordinarily bad at cross-departmental co-operation and collaboration, as I know having been a Minister in many Departments myself. Unless there is a real determination on the part of Ministers, and probably the Cabinet Office, to pull together the activities of Government Departments—for the most part, by the way, officials resist that; they do not like that kind of thing—things will not improve in the consistent way we want. Some Departments have already done good work, while others have been rather slower to respond to the recommendations in the report—it is available to colleagues and others, so I will not go through those recommendations in detail.

I want to amplify the call made by the hon. Member for Rhondda for a new emphasis on collaboration and for a mechanism to bring that about—probably through a Cabinet Office working party pulling together Ministers from different Government Departments. That can work, as I know from my own time in Government. I implore the Minister to set about the business of putting that in place, following this debate.

I have two other things to say, Mr Robertson. The hon. Gentleman drew attention to neurorehabilitation. A rehabilitation prescription should be made available to all individuals with acquired brain injury on discharge from acute care. It should be held by the individual, with copies made available to the general practitioner. A national review of neurorehabilitation is required to ensure that service provision is adequate. The Government should collate reliable statistics for the number of individuals presenting at A&E with acquired brain injury, and record the numbers that require and receive neuro-rehabilitation. There should be a significant increase in the number of beds, too. I am sure the Minister will want to comment on the whole subject of rehabilitation when she winds up the debate. Those are just a few of the things that we have argued for and to which I wanted to draw the House’s attention, on the back of the remarks made by the hon. Member for Rhondda.

I said I had two further points, and that will not have been lost on you, Mr Robertson. So, finally, I draw attention to the important work that has been done at universities. My own university, Nottingham, is doing important work on both the primary science of the subject and the psychological effects of injury. I hope that the all-party group will go to Nottingham to take a closer look—indeed, we were discussing that yesterday. When the Government work with the higher education sector, they can drive forward public policy changes resulting from important work on assessing the effectiveness of different approaches by public sector, private sector and charitable organisations, such as Headway, of which I am a patron.

Proust also said:

“A change in the weather is sufficient to recreate the world and ourselves.”

When the storm of head injury happens, the skies darken for individuals. Our job as parliamentarians is to bring change to those individuals, through brightening their prospects in all that we do.

--- Later in debate ---

[Caroline Dinenage]

The hon. Gentleman is absolutely right to raise that issue. NHS England has a veterans trauma network, which delivers comprehensive medical care to veterans, including those suffering from brain trauma. It does excellent work, but there are also many individual charities up and down the country that work to support veterans who may not have been diagnosed; they may have been diagnosed with post-traumatic stress disorder or something else, but never actually had the original head injury diagnosed.

Almost as if to highlight the fact that this is a hugely cross-Government issue and the inadequacy of Ministers working in their individual silos, I will today be able to focus massively only on the issues relevant to our health service, but I will try to come on to a lot of the questions that right hon. and hon. Members asked.

[Sir John Hayes]

I am extremely grateful to the Minister for giving way. We had meetings as an all-party group with the former Chancellor of the Duchy of Lancaster, the former right hon. Member for Aylesbury. I believe that at that point there were suggestions, at least, that a Cabinet Office piece of work would be initiated. Can we take it from the Minister’s assurances that she will write to the Cabinet Office colleagues who are now responsible for these matters and copy that letter to participants in this debate?

[Caroline Dinenage]

Yes, I am very happy to commit to doing that.

Before I go on to talk about the health implications of ABI, I want to deal with a couple of other things. They are not within my realm of expertise, but I want to touch on them.

The hon. Member for Mitcham and Morden spoke about the Headway brain injury identity cards—how important they are and how important it is that they are recognised across the criminal justice system. I wanted to mention how Headway has been integral in partnering NHS England’s health and justice liaison and diversion services programme team, to provide workshops in London and Leeds to raise the awareness of the prevalence of ABI within criminal justice populations. The objectives were designed in a “train the trainer” format, so that the attendees could return to their services and cascade the learning on how to identify people with brain injury, how to identify the brain injury cards that Headway has brought forward and how to understand the implications. I thought that was quite positive.

My right hon. Friend the Member for Hemel Hempstead was right to mention the positive progress that has been made in some sports. The Rugby Football Union’s Headcase campaign and the British Horseracing Authority have also made great strides in this area. However, he was also right to say that other sports have a long way to go.

The hon. Member for Rhondda spoke about trauma centres. As he knows, in 2012 22 regional trauma networks were developed across England to ensure that those with the most serious brain injuries received the best care. Two years after their introduction, an independent audit showed that patients had a 30% improved chance of surviving severe injuries. Since then, as he says, the network has saved literally hundreds of lives.

For people who have ABI, neurorehabilitation that is timely and appropriate to their circumstances is a massively important part of their care. Access to high-quality rehabilitation saves money and, more importantly, significantly improves outcomes for patients. NHS England commissions specialised rehabilitation services nationally for those patients with the most complex level of need. As we have already heard, trauma unit teams work to assess and develop a rehabilitation prescription for brain-injured patients. At the unit, patients can access care from specialists in rehabilitation medicine, whose expert assessment helps to inform the prescription.

These rehabilitation prescriptions are an important component of rehabilitation care, because they reflect the assessment of the physical, functional, vocational, educational, cognitive, psychological and social rehabilitation needs of a patient. The APPG argued that all patients should benefit from an RP; as I understand it, at discharge, all patients should have a patient-held record of their clinical information and treatment plan from admission as they move to specialist or local rehabilitation, supported by the RP. However, I take on board what the hon. Gentleman says about ensuring that the letter and the prescription itself are written in language that people can understand, are easily accessible and are available to them and their family members.

The “National Clinical Audit of Specialist Rehabilitation for Patients with Complex Needs Following Major Injury”, published in 2016, found that, on average, 81% of patients had a record of a rehabilitation prescription. That audit appears to have had a significant impact, because the latest data shows a rise to an average 95% completion rate. In April 2019, the third and final report of the Audit Commission to NHS England’s audit programme was published, and it is encouraging to see that 94% of patients accessing specialist rehabilitation have evidence of functional improvement.

However, the audit report also suggests that much more work needs to be done to ensure that all patients who could benefit from specialist rehabilitation can access it. Using data provided from participating centres, the audit’s authors estimate that the current provision caters for about 40% of those who need the services. To address the capacity issues highlighted, the audit makes a range of recommendations.

It is important to recognise that these audits play a massively valuable role in helping services to improve. They shine a light on variation and help to support services to best meet the needs of patients. However, there will always be different models of improving access to specialist rehabilitation, depending on the set-up of the services around the country. Therefore, local service providers and commissioners should review capacity in the pathways for specialist rehabilitation in the light of this audit, taking action where they can.

The majority of rehabilitation care is commissioned and managed locally, and NHS England has produced some documentation and services plans to help with that. “The Principles and Expectations for Good Adult Rehabilitation” describes what good rehabilitation care looks like and offers a national consensus on the services that people should expect. The NHS long-term plan has also set out some key actions on this, designed to improve care, treatment and support for people with long-term conditions such as ABI.

Community services, which play a crucial role in helping people remain as independent and well supported as possible, are going to receive significant investment, with £4.5 billion of new investment in primary and community care. Furthermore, NHS England has set out plans to roll out the NHS comprehensive model of personalised care, which includes self-care care planning, personal health budgets and social prescribing. It will reach 2.5 million people by 2023-24 and is particularly relevant to people with acquired brain injury. The model is currently implemented across one third of England, but by September 2018, more than 200,000 people had already joined the personalised care programme.

The hon. Member for Mitcham and Morden asked about free car parking. From April, all hospital trusts will be expected to provide parking to groups who may be frequent visitors. I interpret that to mean families visiting people who are in hospital for a long period of time, which I think is what she was asking me.

Health and Social Care

John Hayes Excerpts

Thursday 16th January 2020 Commons Chamber

[Matt Hancock]

Yes, we are doing that work to make sure that, as we pump hundreds of millions of pounds into Hertfordshire to improve its healthcare, we get the exact locations right. I look forward to working with my right hon. Friend on that.

[Sir John Hayes (South Holland and The Deepings) (Con)]

I am extremely grateful to the Secretary of State for giving way, and I know he will move seamlessly from new hospitals to new treatments. I have rushed here from a reception being held today in the House on the subject of tinnitus. Tinnitus affects numerous constituents of his and mine and people across this country, and it is urgent that we do more research and put more funding into the subject.

Will the Secretary of State give me news that I can rush back to the reception with—I am hosting it, while simultaneously being here—thereby giving good news to hundreds of thousands of our constituents?

[Matt Hancock]

I think that is an early warning that my right hon. Friend is going to leave immediately after his intervention. He is quite right to raise the subject. We are increasing the research budget, and I very much look forward to working with him on making sure that that research goes where it is needed. I am very happy to look specifically at the case for increased research funding for tinnitus and to work with him on it. If he were to meet the Lords Minister, who is responsible for the research budget, that would be the most productive way to take this forward.

Oral Answers to Questions

John Hayes Excerpts

Tuesday 29th October 2019 Commons Chamber

[Caroline Dinenage]

The hon. Lady is absolutely to raise that. CCGs are responsible for the commissioning of NHS audiology services, including the provision of hearing aids. We expect all CCGs to have regard to the NICE clinical guidance when commissioning services for their local population.

[Sir John Hayes (South Holland and The Deepings) (Con)]

With the Sheffield Children’s Hospital last night, I was reminded again that in childhood, dreams are made and die are cast, and through our senses, we come to terms with the world around us. As Dickens said, the best of all stories is a child’s story. Sometimes those stories are not happy ones initially, and deaf children in particular struggle and suffer as they come to terms with the world about them. Will the Minister ensure that every deaf child in Lincolnshire has not only an education, health and care plan, but all the innovations and technology that allow them to live their life to the full and cast a future as glorious as any of ours?

[Caroline Dinenage]

I certainly could not have put that more articulately than my right hon. Friend did, and he is absolutely right. In 2018, the Government provided contracts worth more than £25 million to help children with special educational needs and disability to access the right support. The Department for Education is reviewing the SEND commitment within that Department, but we are supporting it to do that in the Department of Health and Social Care to ensure that children get the care and support and educational support plans that they need.

Spinal Muscular Atrophy

John Hayes Excerpts

Thursday 25th July 2019 Commons Chamber

[Sir John Hayes (South Holland and The Deepings) (Con)]

There is no fairness to fate, no right to good fortune: new life is a miracle, and great health is a blessing.

I do not normally speak from a text, as you know, Madam Deputy Speaker, having known me since we both entered the House in 1997, but the subject which I wish to address today is technical and medical, and is highly significant, and given that the Health Department is one of the few Departments in which I have not served as a Minister, I thought I had better stick to a script.

Spinal muscular atrophy is a genetically inherited neuromuscular condition which results in the irreversible damage of motor neurons and progressive muscle wasting. It is a complicated and often debilitating disease linked primarily to genetic mutilation in the SMN1—survival motor neuron—gene.

There are three types of SMA. The age of onset and severity of symptoms can vary considerably. Many sufferers will experience extensive disability, and without early intervention numerous lives are damaged and, indeed, cut tragically short.

I know all of this because of my young constituent, 12-year-old Rae White. But there is hope on the horizon for Rae and other sufferers, as the first dedicated treatment, Spinraza, offers hundreds the possibility of an improved quality of life. Clinical trials have already demonstrated the enormously exciting potential benefits of the drug, delivering meaningful improvements to the motor neuron function of patients.

While individuals with SMA have the SMN2 gene, they lack the SMN1 gene, leaving them unable to produce the full-length proteins that work effectively within the body. Spinraza has been developed to address the absence of this survival motor neuron protein. Its synthetic antisense oligonucleotide acts as an enabler, allowing the SMN2 gene to produce full-length protein, thereby alleviating the symptoms of SMA.

Thankfully, the administration of Spinraza is via an already established procedure known as intrathecal injection, an injection into the spinal canal. This procedure is always performed under the direction of a healthcare provider experienced in administering lumbar punctures, with patients sedated or under a general anaesthetic.

The promise of this drug and its potential benefits to those who suffer should not be underestimated. Families of children who have received the drug often report noticeable profound improvements from the very beginning of treatment. During the clinical trials, monitoring committees on rare occasions say it is no longer ethical to treat people with a placebo, and such was the case with this particular drug. It proved so effective in clinical trials on children with SMA type 1 that the trials were stopped early to enable all the children to access the drug as quickly as possible.

Positive signs have also been observed during trials for treatment of other types of SMA, resulting in significant improvements in motor function in children with SMA type 2 and type 3. In April 2019, a three-year study of 28 children aged between two and 15 showed remarkably improved outcomes compared with the natural progression of the condition if left untreated. In particular, a two-year-old child with SMA type 2 gained the ability to walk independently after receiving Spinraza, and two children with SMA type 3 who had lost the ability to walk before taking the drug regained it during the study. One can only imagine the value of the restoration of ability for those children and the joy for those who love them.

Moreover, a clinical trial is ongoing in pre-symptomatic infants with genetically diagnosed SMA who are considered likely to develop SMA type 1 or 2. As of July 2019, children treated with Spinraza continue to achieve motor milestones that are unprecedented in the history of the condition, including 100% of children sitting without support and 88% walking independently. Crucially, trials have shown that the earlier the patients start the treatment, the greater the benefit.

All this considered, it is with much sadness that we must reflect on the less than desirable state of play now. Not all those who suffer from SMA have been able to access this pioneering treatment. Indeed, there has been a great deal of confusion surrounding eligibility. My colleagues, my hon. Friend the Member for North East Somerset (Mr Rees-Mogg) and the hon. Members for Wolverhampton South West (Eleanor Smith) and for Bristol East (Kerry McCarthy), have raised touching testimonies from their own constituents who are facing similar challenges to those of Rae White. I was touched when young Rae’s mother Tanya came to meet me and offered the moving description of her elation at the original announcement by the National Institute for Health and Care Excellence—NICE—and NHS England, promising that Spinraza would be made available to all.

Perhaps it would be helpful at this juncture if I said a word about how new medicines are approved. There are two stages to the approval process. First, the Medicines and Healthcare Products Regulatory Agency—MHRA—tests their quality, safety and efficacy. The quality is tested in respect of a medicine’s purity; the safety in respect of possible side effects; and the efficacy determines whether it does what it is supposed to do. This is a well-established 50-year process that is recognised as robust and reliable. Subsequently, in a much newer process, NICE examines in tightly populated clinical conditions the cost-effectiveness of making the drug available to a wider population of relevant sufferers. This is, in essence, a matter of health economics, with NICE measuring the capacity of the drug in question to add what are called “quality-adjusted life years”.

The problem with that process is that the formula is too crude to effectively distinguish, in what I might call human or social terms, between treating a 12-year-old girl like Rae or a 60-year-old man like me. In practice, efforts end with a balance being struck between efficacy and cost-effectiveness in the form of a managed access agreement. Indeed, in the case of Spinraza, such a managed access agreement was released, revealing that potential patients would have to fulfil a set of access criteria in order to get this life-changing treatment. As we can imagine, that caused panic and pain for those families who, having had their hopes raised, then had them dashed as they realised that many would not in fact be given access to the treatment.

[Kerry McCarthy (Bristol East) (Lab)]

It is just so cruel. There was a party to celebrate the fact that my 18-year-old constituent Jake Ogborne would have access to Spinraza. There was no mention of eligibility criteria, but suddenly he was told that he would not be eligible because he had not been able to walk in the past 12 months. He lost his ability to walk about 18 months or two years ago. I raised this in Prime Minister’s questions. I got a response that basically told me what we already knew and just set out the rules on this. It is immensely cruel for an 18-year-old to be faced with a decision like that.

[Sir John Hayes]

Yes. The condition, as the hon. Lady suggests, is often degenerative. In cases such as the one she describes, which, as I mentioned, is not the first time she has raised it, a young person who would normally develop as we all did could be left with arrested development or, even worse, declining capabilities. Indeed, that has happened to my constituent too.

The hon. Lady will know that, following strong advocacy by families of SMA patients, Muscular Dystrophy UK, TreatSMA, Spinal Muscular Atrophy UK and many clinicians, NICE and NHS England made amendments to the managed access agreement. While amendments are far from unwelcome, the disappointing truth is that the new criteria will still exclude some SMA patients desperate for treatment in the way she and others have articulated.

The intensely difficult battle fought by SMA patients has highlighted deeper flaws in the system. Families report feeling that they have been pitted one against another as advocacy groups are forced to decide whether to push for wider accessibility, and as a consequence risk delaying treatment for those eligible, or, alternatively, to take what is on offer and exclude a minority of the SMA family.

Life can be intensely difficult. All our bodies are complicated and vulnerable, intricate and fragile. We are regularly reminded, are we not, that they can go wrong in a multitude of hard-to-understand ways. I have argued many times in this House that a society should be gauged by how it cares for, protects and promotes the interests of its most vulnerable members.

[Mary Glindon (North Tyneside) (Lab)]

I congratulate the right hon. Gentleman on securing this important debate. I, too, have a young constituent, Sam McKie, who has SMA type 2. I hope the right hon. Gentleman agrees that the issue is that, whatever has happened so far, we need to know that NICE will look at the fact that the drug can halt further deterioration. As he says, we are all weak mortals, but if that deterioration is halted, people can have some quality of life, whatever type of SMA they have.

[Sir John Hayes]

Exactly. That is why, in the exciting conclusion to this speech, I shall make demanding suggestions. I think they are demanding because of the demands of those who need this drug, not because of any particular interest I might have in this matter beyond a passion to ensure that my constituent and others like her get what they need so desperately.

[Rachael Maskell (York Central) (Lab/Co-op)]

I am grateful to the right hon. Gentleman for introducing today’s debate. We have had many debates in the House on the procurement of drugs. I have been working with health economists at the University of York who are leading in this field. They very much recommend the model now being adopted by Canada around a national rebate scheme, which takes away some of the tension over cost that we seem to return to time and again. Is not that a way forward that the Government should at least explore?

[Sir John Hayes]

The hon. Lady had the great pleasure of shadowing me when I was at the Department for Transport, and I have had the greater pleasure of listening to her on so many subjects. She speaks with such knowledge, understanding and wisdom. Once again, she has shown all those things today.

The Government and the new Prime Minister must do as much as they can to ensure that those with rare diseases have every chance possible to live the very best lives they can. So, here is exactly what to do: first, as Spinraza has been shown to be both safe and effective, the NHS should provide the treatment for all those who would benefit from it; secondly, in addition to making Spinraza available for all, the Minister should set up a rare drugs fund, similar to the successful cancer fund, to ensure that those battling debilitating degenerative diseases are supported at every stage of their journey; and thirdly, I ask the Minister to implement an immediate review of the criteria used by NICE to determine access to new medicines.

We all want to do the right thing. I described earlier what I said was a crude approach. These things develop; they metamorphose. This is a chance to look again at how we can administer treatment to have the best effect on those in the greatest need. Hegel said:

“Life has a value only when it has something valuable as its object.”

Chamberlain said:

“In great deeds something abides.”

There is no better great deed, no more noble object, no more abiding purpose than the care for those in the greatest need. I ask this Minister to make her abiding object a war on want, a campaign against suffering, a crusade for those in pain—Madam Deputy Speaker, nothing less will do.

[The Parliamentary Under-Secretary of State for Health and Social Care (Seema Kennedy)]

What a pleasure it is to speak in the final parliamentary debate of what has been an historic and tumultuous term for all of us.

I congratulate my right hon. Friend the Member for South Holland and The Deepings (Sir John Hayes) on securing the debate on such a timely day, because we have had news on Spinraza in the last 24 hours. He outlined very movingly the symptoms of spinal muscular atrophy, which has been raised before in this House. The hon. Members for Bristol East (Kerry McCarthy), for York Central (Rachael Maskell) and for North Tyneside (Mary Glindon) are particular champions for sufferers.

SMA is a terrible disease that can have a terrible impact on the children who suffer from it, their families and the wider community. We in the Department know how important it is for them to be able to access effective treatment. It is a rare disease. It affects about 100 babies born each year. It is estimated that it affects between 1,200 and 2,500 children and adults in the UK. Until recently, there were no licensed treatments for it, so the condition has been managed using nutritional support, physiotherapy and social care.

Spinraza, as my right hon. Friend outlined, has been licensed across Europe for the treatment of SMA since 2017 and is very effective. However, it is extremely expensive and has been undergoing assessment by NICE to determine whether it would be an effective use of NHS resources. I say to him that QALYs do take account of wider costs—not just physical costs but social care costs. As far as I am aware, there is currently no difference in the quantitative evidence. He gave the examples of a man in his mid years—at 60—and a child.

I will go on to talk more broadly about the NICE process, but I am really pleased that only yesterday, NICE published its final guidance, meaning that this debate is very timely. The guidance recommends the use of Spinraza for many patients with SMA through a managed access agreement, which has been negotiated between NICE, NHS England and the manufacturer, Biogen. This makes Spinraza available to the NHS at a discounted price. Importantly, it also sets out arrangements for collecting evidence on the long-term impact of Spinraza, because at the moment the evidence is quite immature. The managed access agreement is one of the most comprehensive deals in the entire world and it brings Spinraza to one of the widest cohorts of eligible patients in any country. It was signed and supported by Spinal Muscular Atrophy UK, Muscular Dystrophy UK and TreatSMA. I put on the record my thanks and my tribute to all those organisations for the support they have given patients and families with the illness. That very welcome development has involved hard work and flexibility from all parties to reach this point; if only all parties in all the debates I have to speak in on this matter were as flexible.

[Sir John Hayes]

The Minister makes a good point about the managed access agreement and the amendments to it that she described. But the real issue here is whether Spinraza would benefit every single sufferer. If it would, it should be universally available.

[Seema Kennedy]

I know that there is an issue with some people suffering from SMA type 3, but I am not the person who would make the decision on whether Spinraza was effective or not; that is why NICE is there.

Children with the most severe form of SMA type 1 are already benefiting from treatment with Spinraza. Following yesterday’s announcement, eligible patients with types 2 and 3 will begin treatment as soon as possible within the next three months.

NICE has concluded that there is not sufficient evidence at this stage for the managed access agreement to cover some patients with SMA type 3 or any patients with type 4; that is why we are still carrying on collecting evidence. I realise how dreadfully painful that is for those not able to access Spinraza. The majority of patients will be eligible under the managed access agreement.

The parties to the agreement have agreed to keep the eligibility criteria for treatment under review during the five-year term of the agreement, so those criteria may be further extended in future if more evidence of benefit emerges over time. NHS England and I have acknowledged that the inclusion criteria associated with the managed access agreement could have been more clearly communicated when it was announced.

I turn to the NICE process altogether. This is an important system. It makes independent, authoritative, evidence-based decisions, which is essential so that taxpayers can be assured that the price we pay for new medicines reflects the value that they bring. It also helps ensure rapid access to effective new treatments for NHS patients. It has been going for 20 years and is internationally respected. There are both established and new pharmaceutical companies developing medicines for rare diseases, which takes an awfully long time, based here in the UK, and medicines can be brought to the market through the NHS very quickly. The Department is keen to press on with that.

We have a UK rare diseases strategy, which was set out in the NHS long-term plan. Genomics is a particularly important area, in which we want to innovate so that we have more comprehensive and precise diagnoses and allow patients to access the right drugs. We are committed to that. The NICE process has recommended more than 80% of the medicines appraised and 75% of medicines for rare diseases for some or all of the eligible patient population, but of course the processes must evolve. They have to keep going, taking into consideration developments in science, healthcare and the life sciences sector. That is why NICE keeps its methods and processes updated through periodic review, which includes extensive engagement with stakeholders, including patient representatives, drug manufacturers and clinicians.

Acquired Brain Injury

John Hayes Excerpts

Tuesday 2nd July 2019 Westminster Hall

[Sir John Hayes (South Holland and The Deepings) (Con)]

It is always a pleasure to follow the hon. Member for Rhondda (Chris Bryant), but particularly so on this subject, on which he has done such great work. The report produced by the all-party parliamentary group on acquired brain injury, which he leads, is a fine example of what can be done when politicians from across the spectrum come together, look at a specific subject about which more needs to be done, and produce a report that is thorough, well researched and not antagonistic towards the Government—indeed, it shows a desire to work with the Government to bring about the right kind of solutions.

I therefore thank the hon. Gentleman for the work he has done; he deserves an immense amount of credit. I myself deserve a bit of credit, but much more is owed to those who helped us produce the report, by adding to our investigations, informing our findings and supporting us throughout. Across the scale, the brain injury community, if I may so describe it, deserves great credit for the work we have done so far. As he said, the Minister and the Government, who have given the matter a fair wind and a good hearing, have shown a willingness to listen and a preparedness to change, both of which are absolutely essential.

The last time we spoke about acquired brain injury, I recounted the pattern that most people follow when they have a traumatic event that leads to a brain injury. Of course, not all head injuries lead to brain injuries—it is important to draw that distinction at the outset. Nevertheless, the pattern is straightforward: shock, disbelief, fear and then, with the right support, care and encouragement, realisation and recovery. It might be argued that that is a familiar pattern for most kinds of traumatic injuries that have profound consequences, but there is a difference with acquired brain injury: namely, the effects are immensely variable and sometimes, as the hon. Gentleman said, hard to recognise or discern. Actually, they can be quite hard to discern medically, as well as socially and culturally, as recovery from a brain injury can go on for a very long time indeed, even for many years.

The hon. Gentleman spoke of changed personalities. When I had my own brain injury in my early 20s, the medical experts who were treating to me said that my personality might change. My parents said, “Oh, you don’t know him,” but the doctors said, “No, clinically we have to tell you that his personality might change.” I do not know if it has changed; I might have been less talented, less charming, less accomplished and less clever. [Laughter.] I do not know, do I? How could I know that? For the hon. Gentleman is absolutely right; one does not know what one might have been.

The reason I have taken a great interest in this subject since being elected to this place 22 years ago is that I am very conscious that my recovery was sufficient to allow me to fulfil my ambitions, and to allow me to do much of what I would have done anyway. That would not have been easy had I wanted to be a great musician, for example, as I am now extremely deaf and have suffered from tinnitus since my accident. But I did not want to be a musician. It would not have been easy had I wanted to pursue a number of other careers, but the one I wanted to pursue was that of a Conservative Member of Parliament—there is nothing more noble.

My injury did not prevent me from achieving that aim, but I am profoundly and constantly aware that others cannot say the same. As I was in hospital being treated for the immediate effects of my injury and then recovering over a considerable time, I was conscious that others were not as fortunate, that I could have been in a very different place and that, if my life had changed beyond measure, I would have been unable to do what I have done. That subtlety in the changes that take place following an acquired brain injury is the second thing, along with the variability, that I wanted to highlight.

But there is also unpredictability. One cannot be clear at what pace and to what degree recovery will take place. The combination of variability, subtlety and unpredictability makes the aftercare—the neuro-rehabilitation that the hon. Member for Rhondda rightly highlighted—a complex and challenging matter for all concerned; clearly for families and friends and those close to those affected, but also for the medical professionals and all the services that people in these circumstances engage and interact with. The Government must therefore employ the same subtlety and flexibility in dealing with the effects of brain injury.

I know that other Members wish to speak, so I will not go on forever—there will be a sigh of relief in some parts of the Chamber, and probably some disappointment in others. None the less, I want to highlight some things that the Government will need to do. As I said, last time I spoke on the matter it was about the pattern that follows an injury, but I now want to talk, from my experience in government, about what the Government need to do. First, they need to be highly responsive to the changes in the condition of sufferers, and I do not think that Governments are all that good at that; they do many things well, but I am not sure that responsiveness is one of them.

Secondly, the Government need to marry, in their work, the changing diagnostic environment and neuro-rehabilitation. I was recently at my old university, Nottingham, looking at the latest technological changes that will enable people to diagnose the effects of injury through improved scanning, and that is the sort of advance that needs to be married with neuro-rehabilitation. The University of Nottingham is also studying how different modes of rehabilitation can have different effects—which strategies work best for different kinds of individuals in recovery.

Thirdly, the Government need to adopt a cross-departmental approach—that is heavily emphasised in the APPG report. We highlight that although some Departments take the matter extremely seriously and are doing an excellent job, others need to raise their game. That is no surprise, I suppose, but none the less it needs to be emphasised. Various people here will know that we recently had a meeting with a Cabinet Office Minister to discuss how that Department can play a part in co-ordinating that cross-departmental approach. A glance at the report illustrates just how wide that approach needs to be; everything from the Department for Digital, Culture, Media and Sport, through to the Ministry of Justice, the Department for Work and Pensions, obviously the Department of Health and Social Care, and so on. Almost no Department is unaffected. The Home Office is clearly affected and, with housing, we have responsibilities for ensuring that people are properly accommodated. As almost no aspect of Government is untouched, the cross-departmental approach needs to be re-evaluated, with new thinking about how we can ensure consistency and collaboration in dealing with brain injury.

[Mr Gregory Campbell (East Londonderry) (DUP)]

Will the right hon. Gentleman give way?

[Sir John Hayes]

I will happily give way. I am most impressed that no less than a third of the Democratic Unionist party’s Members of Parliament are in attendance.

[Mr Campbell]

I suppose a cynic might say that it is a good job that a third of Labour and Conservative MPs are not here, because otherwise we would not get into the room. The issue that the right hon. Gentleman touches upon is very important. Does he agree that although those directly affected, and their family and friends, want to hear this debate and see that there is support, there needs to be a tangible expression from Departments, both centrally and in the regions, to show that it is more than just words? Action needs to follow, which is exactly the point I believe he is highlighting.

[Sir John Hayes]

The hon. Gentleman always makes valuable contributions to our considerations, across a range of subjects, but rarely does he make a contribution that tees me up for the next part of my speech more than that one did.

I was about to move on to the specific measures that the Government can take, which are all drawn from the APPG report but also—I say this less critically than I might—from the Health Committee’s 2001 report on these matters. For example, that report suggests:

“We recommend that the Government requires the statutory services to improve their supply of information on head injury to head-injured people and their families; such information should be given to these people in written and verbal form during their stay in hospital, should be available to GPs and should include the literature produced by Headway—the Brain Injury Association.”

It goes on to say:

“We recommend that those assessing brain-injured people for disability living allowance have specialist skills which enable them to understand the complex combination of physical, cognitive and behavioural impairments characteristic of this type of neurological disability; and that the assessment process is adjusted to allow the input of a patient’s advocate”.

It continues:

“We recommend that the Government makes explicit the level at which responsibility for planning different levels of rehabilitation for head injury should be located”.

Almost every recommendation made in 2001 is pertinent to the circumstances today. That is not to say that Governments since then have done nothing; I emphasise again that the new Minister and her predecessor have given us a very positive response since the publication of our APPG report. We have high hopes of the Minister, who I know wants to end her time in the job by saying just how much she did. [Interruption.] Well, that may be in a number of years, but whenever her time in the job does end, she needs to say, “I did so much for those with acquired brain injury.” That needs to be on her record, and we want to ensure that it is—thus our continued advocacy.

I have just a few points from our report for the Minister to consider. I will rattle through them—there are only six. First, there should be a national review of neuro-rehabilitation, to ensure that service provision is adequate and consistent. Secondly, acquired brain injury should be included in the special educational needs and disability code of practice. Thirdly, all education professionals should be trained, or at least have a minimum level of awareness. Fourthly, all agencies working with young people in the criminal justice system, including schools, psychologists, psychiatrists, general practitioners and youth offending teams, should work together to ensure that the needs of individuals are assessed. Fifthly, in the welfare system, all benefits assessors should be trained to understand the problems that affect individuals with acquired brain injury. Sixthly, a brain injury expert should be on the consultation panel when changes in the welfare system are proposed. I do not say that those are the only important things; we could talk about sports injuries and all kinds of other things that are in our report and have been debated before. But doing those six things alone, or six others taken from the report, would make an immense difference to so many people.

Finally, I want to quote C. S. Lewis—not Jesus but certainly a man who knew Jesus. C. S. Lewis said that

“courage is not simply one of the virtues, but the form of every virtue at the testing point”.

Courage is required by those who suffer from acquired brain injury, but it is also required by Ministers to make a difference, and I know that this Minister, inspired I hope by the efforts of Members across the House and also by the needs, plight and interests of all those affected by acquired brain injury, will employ the necessary courage to make a difference.

[Several hon. Members rose—]