Oral Answers to Questions
Liz Twist Excerpts(4 years, 3 months ago)
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Matt Hancock
The hon. Gentleman makes an incredibly important point. General practice, where 90% of all NHS appointments take place, needs to reach every part of this country, including his beautiful constituency, which is, as he says, very sparse. Of course we need to ensure that the practices there are sustainable, and again this is an area in which technology can be of particular help. There is great enthusiasm for using technology so that the travelling times of patients and sometimes of GPs can be reduced.
Liz Twist (Blaydon) (Lab)
Marsha De Cordova (Battersea) (Lab)
The Minister for Care (Caroline Dinenage)
The Government have enshrined in legislation through the Care Act 2014 a council’s statutory duty to meet eligible needs for adult social care. We have given councils access to up to £1.5 billion more dedicated funding for social care in 2020-21 to help them to meet this requirement.
Liz Twist
Figures from Age UK show that 1.5 million people aged 65 and over have an unmet social care need, and Age UK estimates that this figure will rise to 2.1 million by 2030 if we carry on as we are. In my constituency, that equates to 3,012 older people with unmet needs and 2,517 older people providing unpaid care. Those are real people who are not getting the help they need. The Prime Minister said last summer that he had a plan to “fix” social care. Where is it?
Caroline Dinenage
As I have explained, the Care Act sets out the requirement that entitles individuals to a care needs assessment and sets a minimum national threshold at which care should be delivered. We have backed councils up by giving them access to £1.5 billion in additional funding in the next financial year. In the hon. Member’s constituency, that will equate to an additional £5.1 million from the new social care grant. This is something that the Government take very seriously.
Health and Social Care
Liz Twist Excerpts(4 years, 3 months ago)
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Matt Hancock
I will rattle through as fast as I can, Mr Deputy Speaker, but I also want to take as many interventions as I can, if that is okay. [Interruption.] No, okay, no interventions. That is an unusual request from the House, if I may say so. [Laughter.]
Putting social care on a sustainable footing, where everybody is treated with dignity and respect, is one of the biggest challenges we face as a society. The Prime Minister has said that we will bring forward a plan for social care this year. These are complex questions and the point my hon. Friend raises is very important.
The draft legislation on the long-term plan Bill aims to help us to: speed up the delivery of the long-term plan; reduce bureaucracy; and help to harness the potential of genomics and other new technologies. I hope the House will support it.
The third piece of proposed legislation is the medicines and medical devices Bill. We are at an important moment in the life sciences. This country can and will be at the forefront as the NHS gets access to new medicines and new treatments earlier, so patients can benefit from scientific breakthroughs sooner.
Liz Twist (Blaydon) (Lab)
During the election campaign the Prime Minister promised a member of the public that the Government would look into the availability of Kuvan. Kuvan has been available for the treatment of PKU for 11 years. Will the Secretary of State commit to ensuring that that drug becomes available?
Matt Hancock
I can tell the hon. Lady that since the election I have been working on precisely that. I am very happy to meet her to see whether we can make a breakthrough.
Liz Twist (Blaydon) (Lab)
May I start by congratulating the hon. Member for Sevenoaks (Laura Trott) on an accomplished and thought-provoking speech? I am sure that she will represent her constituents well.
I am very pleased to be able to take part in this important debate on health and social care. Earlier this week, I chaired a breakfast roundtable organised by the Industry and Parliament Trust, bringing together industry representatives, third-sector organisations and parliamentarians to discuss the issue of suicide in the construction industry. As chair of the all-party group on suicide and self-harm prevention in the last Parliament, I am familiar with the statistics on the number of lives lost to suicide and the statistics that show that middle-aged men are particularly at risk. However, even I was shocked to hear that two construction workers each day die by suicide and that twice as many die by suicide as die falling from heights.
A huge amount of work has rightly been done on reducing the physical risks in the construction industry. I am glad that there are now moves by some employers and charities such as Mates in Mind to put the same focus on tackling mental health issues and preventing suicide in the construction workforce. There are issues and problems caused by job and financial insecurity, physical stress, working away from home and loneliness.
I want to speak about the wider issue of suicide prevention. I am glad that the Minister is in her place to hear this. Last year, the number of deaths by suicide in the UK rose significantly—an increase of more than 600 on the previous year. There were 6,507 deaths by suicide in 2018. The statistics show that middle-aged men remain the highest risk group, though rates among young people, too, are rising. This is at a time when there is increased talk of improving mental health services in the NHS plan and a focus on suicide prevention. Clearly, the Government need to be doing more for individual people and at policy and practice level to reduce those figures.
Suicide is a public health issue. It is startling to know, from work done by the University of Manchester in 2018, that two thirds of people who take their own lives are not in touch with mental health services in the year before they die. A way needs to be found of reaching out to these people. We know from work by the Samaritans and others that socioeconomic factors are often at the root of the desperation which many people feel. Low incomes, job insecurity, unemployment, housing problems and benefits issues all play their part. Although there is a cross-Government suicide prevention work plan, what needs to happen is for each Department to take clear actions to make a real difference. I understand that the Department for Work and Pensions, for example, has no concrete actions from the plan, but those of us dealing with constituents on a day-to-day basis will know that that Department has a real impact on people, especially when they are struggling.
Most local authorities do now have suicide prevention plans, but the Government must do more to make sure that those that do not develop them as a matter of urgency, and that those that do, follow up the written plans with action and share experience and best practice. I have to say that reducing public health funding is tying the hands of those local authorities that are translating those plans into actions and real interventions.
Some £57 million has been made available for suicide prevention, but those of us who have tried to track it with our local health services have found it difficult to identify what specific actions that translates into when it is spread so thinly that it is almost invisible in the budget. Local NHS services need to make sure that the gaps in services, which too many people can fall through, are filled in. For example, there must be a way for people who are considered “too suicidal” for talking therapies to be able to access secondary mental healthcare more quickly, and non-clinical services need to be available, too.
I have already mentioned the fact that middle-aged men on low incomes have been the highest risk group for many years. Much more needs to be done to understand what really works to support this group when they are struggling. Research, again by the Samaritans, shows that the poorest men living in the most deprived areas are 10 times more likely to take their own lives than the wealthiest living in more affluent areas. We really need some concrete action to address that.
I wish to speak briefly about self-harm. Levels of self-harm among young people are rising. There is a real stigma around self-harm that stops people seeking help. Most people who self-harm do not go on to take their own life, but there is evidence that many people who do have self-harmed in the past. It is a sign of deep emotional distress and people who self-harm must have access to support to identify why they are feeling so distressed. Plans are needed in that area, too.
In summary, suicide prevention is a public health issue and should be tackled as such. Low-income middle-aged men are at the highest risk of suicide and we need to tackle and identify the causes of that and develop accessible services. Levels of self-harm are increasing and need to be tackled now. The Government need to do much more to address this issue and they need to put more resources into both the NHS and the local authorities to reduce the number of people dying by suicide.
Hospital Improvement Plans: VAT Rules
Liz Twist Excerpts(4 years, 3 months ago)
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The Minister for Health (Edward Argar)
Madam Deputy Speaker, it is a pleasure to see you back in the Chair in your new role as Deputy Speaker and Chairman of Ways and Means.
I congratulate the hon. Member for Bristol South (Karin Smyth) on securing this debate. I know this is an important subject for her, as she has raised it on many occasions, but she is right that capital—the buildings our NHS operates out of—is actually an important subject for all of us. While it is a shame that there are not many Members in the Chamber, I hope that quality makes up for a lack of quantity. That is certainly the case with her speech, but it is a pleasure to see the hon. Member for Blaydon (Liz Twist)—who, if I recall correctly, held a debate on this subject almost a year ago—here as well.
The hon. Member for Bristol South was perhaps being unduly modest in her opening remarks about her knowledge of this subject and expertise in this area. While it is always a pleasure to see her speak about it, I always watch with a certain degree of trepidation, because she does know her subject extremely well. My knowledge of VAT and tax rules is rather more limited. Although I spent a period of time as a member of a primary care trust board many years ago, I suspect that my knowledge base will not be as deep as hers. However, I will endeavour to respond to all the points she has made. I recognise that the article she wrote that was published this morning on PoliticsHome highlights a number of these issues as well.
I will start by addressing the capital investment programme that the Government have set out and the impact of VAT on that, and then move on to the hon. Lady’s points about wholly owned subsidiaries and some of her subsequent points. In respect of the VAT position with the new health infrastructure plan hospitals—the new 40 hospitals we will be building—under the tax code VAT will be payable by hospital trusts involved in construction, reflecting that these are new builds and we would expect the appropriate HMRC regulations to be adhered to. However, as the hon. Lady touched on in setting out the background to the VAT rules, VAT chargeable on supplies of goods and services in the UK is collected by HMRC on behalf of the Government, so all moneys received in that way are reinvested in public services.
In addition, the funding provided for the 40 new hospital build projects and other capital schemes includes provision for the VAT charged by the suppliers involved in the developments. There may also be scope for an element of VAT reclaim on aspects of those projects, which will be determined and calculated on a case-by-case basis and in line with VAT regulations and rules. The overall funding allocation for the HIP has been built up by overall cost estimates of the schemes, inclusive of VAT. However, the final amount of VAT payable will be determined once the individual schemes have been fully scoped and costed. Current VAT rules will apply, and VAT recovery will be assessed for each scheme in line with the rules set out in section 41 of the Value Added Tax Act 1994 and the Treasury’s “Contracting Out Direction”. In broad terms, we have made allowance for VAT within the estimated costs of those schemes.
As the hon. Lady noted, it was outlined in the spring statement of 2019 that longer-term plans are currently being considered by Her Majesty’s Treasury to review the section 41 VAT rules, to potentially either allow for full VAT reclaim for NHS bodies on all their purchases of goods and services or remove VAT reclaims entirely from them. The VAT review or policy paper will publish a call for evidence in due course. While I know she would like me to give an exact date, I hope she will forgive me for not making announcements that are possibly more appropriate for Treasury Ministers to make. I will ensure that her request to know that date is conveyed to the Financial Secretary to the Treasury, and I hope that he will be able to respond to her swiftly with further information. In the context of the forthcoming call for evidence, I encourage her and others to contribute. She has a lot of knowledge and expertise in this area, and I suspect that in encouraging her to contribute I am pushing at an open door, because she will certainly do that. I know that the Financial Secretary will be pleased to hear from her.
The hon. Lady focused in both her article and speech on wholly owned subsidiaries, as did the hon. Member for Blaydon in her debate a year ago. While there can be VAT advantages of forming wholly owned subsidiary companies, we are clear that they cannot and should not be set up for the purposes of VAT avoidance, and we wrote to all provider trusts in September 2017 to remind them of their clear tax responsibilities. I may provoke the hon. Member for Bristol South, given her plea earlier, by saying that the origins of this position date back to 2004, subsequently consolidated in the National Health Service Act 2006, but she is right to highlight the changes in the 2012 Act. The position has evolved under Governments of both parties, but she is right to look at the future rather than where we have come from.
We expect all NHS providers to follow the guidance when considering any new arrangements or different ways of going down the wholly owned subsidiary route. There can be advantages in that route, as my predecessor, who is now the Brexit Secretary, set out, for employees in terms of flexibility and choice. There can also be commercial advantages for the NHS bodies setting them up, including things such as enabling providers to employ staff on more flexible and, in some cases, more generous terms and conditions—I emphasise the words “in some”; I see the hon. Member for Blaydon watching me carefully—as well as providing more efficient services in some cases to other trusts, being able to attract staff from the local employment market and giving greater flexibility to the operation of that organisation.
Liz Twist (Blaydon) (Lab)
The Minister said carefully that “some” staff may be advantaged. Does he accept that the vast majority of staff in low-paid jobs—often women—are not benefiting from this and are in fact losing out in pension contributions? When we met Treasury Ministers last year, we were told that it was for the Department of Health and Social Care to decide what its policy is. Will he now commit to redressing that?
Edward Argar
I thought I was going to provoke the hon. Lady to intervene, but it is none the less a pleasure that she has done so. She does highlight disparities, but I would say that it is wrong to suggest—even taking out wholly owned subsidiary companies within the NHS more broadly—that there is an exact commonality of terms and conditions, pension arrangements and so on; there are differences already.
What I will commit to do—I was going to mention this at the end, but I will say it now—is that I am very happy to meet both the hon. Lady and the hon. Member for Bristol South to discuss this more broadly in the context of Department of Health and Social Care responsibilities in the NHS, as well as the point the hon. Lady made about self-employed GPs and independent GPs. I am very happy to have that meeting with them. We may have to revert to the Treasury at some time on technical points, but I am very happy to have that meeting. I am very conscious that, in the two minutes or so I have left, there is a limit to how much I will be able to say, but I am happy to pick up other points in that subsequent meeting.
The hon. Lady is right about buildings. It is right that we are building 40 new hospitals and that we are investing capital in our NHS infrastructure, but she is also right to say that, yes, we shape those buildings, but in talking about place-based approaches, they shape us too and they shape our communities, so it is absolutely right that we get this right. On place-based commissioning, I was a cabinet member on Westminster City Council for many years—in the dim and distant past, when I had more hair and it was not grey—and I sat on the PCT at the same time, and where it works for local circumstances, there are clearly opportunities there as well. However, I do think that autonomy remains important, because while consistency and clarity are vital, so too is enabling local autonomy to address local needs and specific local circumstances, and I think we need to be a little bit careful about that.
I will conclude—with about a minute to go before you stop me, Madam Deputy Speaker—by saying I am sorry that we do not have more time for this debate, because it is an important debate. I am sorry there are not more Members here because it is something that would benefit all Members to be involved in. I look forward to any future such debates. I congratulate the hon. Lady on bringing this forward. She is right to highlight this issue, and I hope she will take an active part in putting forward her views to the Treasury review and call for evidence when that comes forward. As I say, I very much look forward to continuing this discussion—if not on the Floor of the House, in a meeting subsequently—and I hope and believe that we will be debating this at some point across the Floor of the House in the near future.
Question put and agreed to.
Suicide Risk Assessment Tools in the NHS
Liz Twist Excerpts(4 years, 8 months ago)
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Kevin Hollinrake
The hon. Gentleman is absolutely right. That is one key component of three: training nurses; using a proper, validated tool; and taking into account the past behaviour of the individual and the context of the situation. None of those three things was in place for Andrew. As a consequence, 48 hours after being admitted to hospital in an ambulance, Andrew took his own life.
Kevin Hollinrake
I am happy to give way to the chair of the all-party parliamentary group on suicide and self-harm prevention.
Liz Twist
The hon. Gentleman is raising a very serious issue. I am grateful to Samaritans for a briefing on it ahead of this debate. It is absolutely clear that these risk assessment tools are not in themselves complete. They must be supported by consideration of the context, including previous history, and by a professional assessment of what is happening. Does he agree that it is absolutely essential that all trusts ensure that that happens?
Kevin Hollinrake
I entirely agree with the hon. Lady. I know that the Bellerby family would very much like to meet the Minister here today—the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Mid Bedfordshire (Ms Dorries)—to see what can be done to make sure these situations do not happen again, and I think they would be very pleased to meet the hon. Lady, too, because I know that she does tremendous work in the all-party parliamentary group.
The Parliamentary Under-Secretary of State for Health and Social Care (Ms Nadine Dorries)
It is a pleasure to serve under your chairmanship, Sir Christopher. After 10 years of being a Chair myself, I hope I do not incur your wrath today.
I thank my hon. Friend the Member for Thirsk and Malton (Kevin Hollinrake) for securing this important debate. It is an honour for me to take up the position as Minister with responsibility for suicide prevention. My predecessor, my hon. Friend the Member for Thurrock (Jackie Doyle-Price), did a commendable job when she held this position and I am determined that we continue to do whatever we can to reduce the devastating impact of suicide.
I offer my sincere and heartfelt condolences to the family of my hon. Friend’s constituent. I welcome Robert Bellerby to Westminster Hall and thank him for coming today. These will continue to be difficult times for the Bellerby family. I know from personal experience how devastating it is to lose someone you love and someone who is close to you through suicide. It is inspirational for me to see the courage and determination of those, such as Mr Bellerby, who manage to bring about positive action from such tragic circumstances. By their actions, Mr Bellerby and others like him will help to prevent others from going through the same deep and lasting loss.
I will now turn to the specifics raised by my hon. Friend about the use of risk assessment tools for patients at risk of suicide. He raised the specific case of Andrew Bellerby, who sadly died in 2015. I understand that at the time of Andrew’s attendance at hospital, it was practice at the Sheffield Health and Social Care NHS Foundation Trust to use a crisis triage rating scale tool. It was used to assess Andrew before he was discharged. Sadly, he took his own life shortly after. The trust conducted a serious incident review to learn the lessons from this tragic case.
It is clear that the care Andrew received leading up to his death was not satisfactory, and I understand that a comprehensive action plan was developed and fully implemented by the trust following the serious incident review. I have also been reassured that the trust has stopped using the crisis triage rating scale tool, following a report published by the national confidential inquiry into suicide and safety in mental health in 2018, which recommended that the risk assessment tools should not be used as a way of predicting future suicidal behaviour.
I recognise and share my hon. Friend’s concerns about the use of risk assessment tools across the wider NHS. He is right that guidelines published by the National Institute for Health and Care Excellence make clear recommendations that NHS professionals should not use risk assessment tools and scales to predict future suicide or repetition of self-harm, or to determine who should be offered treatment and who should be discharged. Each NHS trust is responsible for the care it delivers and the safety of its patients. but NICE guidelines are clear on the use of risk assessment tools, and we expect the NHS to implement the guidelines. Clinical guidelines represent best practice and should be taken fully into account by clinicians.
The national confidential inquiry into suicide and safety in mental health has published “Safer services: a toolkit for specialist mental health services and primary care”, which presents 10 ways to improve safety. NHS England has supported all mental health trusts to access the toolkit, which includes guidance for trusts on the use of risk assessment tools and highlights NICE guidance. The toolkit specifically states:
“All patients’ management plans should be based on the assessment of individual risk and not on the completion of a checklist.”
The hon. Member for Blaydon (Liz Twist) was absolutely right that the situation should be put in its context as it presents at that moment. Everything, including the history of physical and mental health, should be considered when assessing and evaluating a patient when they present with a potential suicide.
Ms Dorries
I am delighted to inform the hon. Lady that just this week, NHS England has written to all mental health trusts to make clear that they should be adhering to NICE guidelines on the use of risk assessment tools. My hon. Friend the Member for Thirsk and Malton mentioned a trust that is still using the old method. As a result of this debate, we have ensured that the letter is going out to tell NHS trusts that they should not be using the tools any longer and should be implementing the NHS guidelines.
Genetic Haemochromatosis
Liz Twist Excerpts(4 years, 10 months ago)
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Mark Pawsey
My hon. Friend is exactly right. That charity, which serves to raise awareness, has done a fantastic job, and that includes her constituent. I should point out that this is a condition rather than a disease, because a disease may be considered to be contagious.
I mentioned that the prevalence is higher in Ireland. According to the Irish Haemochromatosis Association, in Northern Ireland one in five people are carriers. The incidence among people of Celtic origin leads to some people referring to genetic haemochromatosis as the Celtic curse, a term that is not looked on favourably, but does underline the prevalence among Irish, Scottish and Welsh people, and the need for them and their doctors to be aware of the condition. I am delighted to see hon. Members representing Welsh and Scottish constituencies here, some of whom I know will contribute to the debate.
I have already mentioned that the condition is poorly diagnosed. Recent research shows that at least 45,000 people affected in the UK are loading iron as their bodies fail to control the absorption. Only 10% to 13% of these cases are diagnosed. For every patient diagnosed, between eight and 10 have the symptoms but have not been diagnosed. They are suffering unaware of what is happening to them.
Dr Ted Fitzsimons of the University of Glasgow has done a great deal of work in this area. He highlights that 80% to 90% of individuals who have this condition are unaware that they have it. They do not know what it is. They know the symptoms, which affect them, but they do not have an explanation for them.
Professor David Melzer, from Exeter University, and the Haemochromatosis Research Group have conducted a UK Biobank study of half a million patients, which was published in January 2019. They found that people with the double haemochromatosis mutation had four times the risk of liver disease, twice the risk of arthritis and frailty among older age groups, and a 50% higher risk of pneumonia and diabetes compared with those who do not suffer from the condition. In the UK, there are currently 136,000 people with the condition aged 40-plus. The study found that of that generation of 136,000, approximately 12,200 will have had a hip replacement, which they would not have needed if they had been diagnosed earlier and treated for iron overload. However, the study has a caveat, as there is uncertainty about whether all those operations would have been avoided by early diagnosis. But as with any condition, we know that early diagnosis is crucial.
Liz Twist (Blaydon) (Lab)
Two of my constituents, Jane and Andrew, have haemochromatosis and have contacted me about this debate, stressing the importance of early diagnosis. Does the hon. Gentleman agree that it can be difficult sometimes for people to be clear about the symptoms, therefore making it can be difficult to get a diagnosis, and that we must work on that?
Mark Pawsey
The hon. Lady is exactly right. Very often, people suffer from the symptoms and persevere. They feel tired and just generally unwell, but they do not know why they are affected, so awareness of the condition among the medical profession when people present with those symptoms is vital in identifying those affected.
In terms of the additional demands placed on the NHS, we can estimate an extra 564 patients diagnosed with liver disease and 125 new liver cancer patients every year from among those with the condition. If we can diagnose it, enable patients to be aware of it and deal with it earlier, we can prevent it from making such a substantial demand on the NHS.
Acquired Brain Injury
Liz Twist Excerpts(4 years, 10 months ago)
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Liz Twist (Blaydon) (Lab)
It is an honour to serve under your chairmanship, Mr Rosindell. I congratulate my hon. Friend the Member for Rhondda (Chris Bryant) on securing this debate. Here we are again, talking about acquired brain injury, which is a sign of the determination on the part of those of us on the all-party parliamentary group and our partners, the UK Acquired Brain Injury Forum, the Child Brain Injury Trust, Headway and so many other organisations, to see real change and improvement in this area. We are going to be using the broken record technique to ensure that our messages get across and real change happens. As my hon. Friend said, many brain injuries are invisible, with no outward sign of the lasting injury that has occurred. There are real difficulties for people because of that, including stigma, lack of understanding and practical everyday problems.
I want to talk briefly about children with brain injuries. The invisibility we have talked about is a real problem for them, and the question of whether a brain injury has been recognised or diagnosed is a key factor. It is important that we correct that to improve things for children. A Health Minister is responding to the debate, but the issue is not only about health; it is also about education. Schools have a great impact on the future development of the child. It is not just about what happens on their immediate return to school; it is also about how they continue to be supported and developed at school. Neuro-rehabilitation and adjustments at school are great. Some adjustments are minor, but there are other issues such as noise, light and the shade of paper that is used. All those things can be difficult and need continuous attention. We need to do more to ensure that children get appropriate support.
Charities working in this area are doing a huge amount of work to improve things. I mention in particular the Child Brain Injury Trust, which does great work and has developed some proposals. Sadly there is not enough time today to tell you what they all are, but I refer to my previous speech in Hansard, where people can find all those recommendations listed.
I was disappointed by the Department for Education’s response to our recommendations in the “Time for Change” report. That response sounded like, “Everything is okay here. We have education, health and care plans and governors and schools know their responsibilities.” Things are not okay, however. There needs to be real understanding of the specific needs of children. After all, what happens in childhood seriously affects the life outcomes of young people. As we have heard, that can bring into play things around justice, employment, health and many other areas of life. As we are speaking, the APPG for the prevention of adverse childhood experiences is meeting, and brain injury is one of the key things that can affect the development of a child.
I am glad to hear from colleagues at the UK Acquired Brain Injury Forum that a group called the National ABI Education and Learning Syndicate, or N-ABLES, has been put together to look at practical steps to raise awareness and to take work forward. I would tell Members so much more if I had the time, but I do not, so I will just say that those people are doing some good work. I encourage the Minister to speak to her colleagues in the Department for Education to ensure that that link is made and that practical steps are taken.
Finally, I want to mention one of our local organisations, a great north-east charity called One Punch North East. It is working hard to say that something as simple as a minute or one incident can cause life-changing damage. I commend it on the work it does.
Health
Liz Twist Excerpts(4 years, 11 months ago)
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Liz Twist (Blaydon) (Lab)
Does the right hon. Lady agree that we also need to tackle the preventive measures covered by public health programmes? It is really important that we maintain public health spending and run smoking cessation programmes and others that prevent ill health from developing in future.
Theresa Villiers
I think there is cross-party support in the Chamber for effectively funding our NHS and public health. Both those spending areas will continue to be a priority for the Government.
I particularly welcome the Government’s commitment that primary care and GP services are at the heart of the NHS long-term plan. GPs are very much in the frontline of increasing healthcare needs, and they are feeling the pressure. I want to see the Government’s £4.5 billion commitment to primary care deliver expanded GP capacity in my Chipping Barnet constituency. The proposals for GPs to be able to call on support from teams of other professionals, such as district nurses and pharmacists, may play a helpful role in relieving the pressure on GP services.
If we are to ensure that patients can get appointments when they need them, we need to train and recruit more GPs. This need is even more intense in areas such as Whetstone in my constituency, where new homes are being built and patient rolls are getting longer. I would like to have the Minister’s assurance that the Government’s target to increase medical school places from 6,000 to 7,500 per year will be met. It is also vital to ensure that whatever reforms are introduced to our immigration system when we leave the EU, we ensure that the new system meets the needs of the NHS and ensures it can continue to bring in skilled professionals from the EU and beyond. It is also important to enable doctors to expand their buildings to improve facilities for patients, and I commend the plans to do so that GPs in High Barnet, Whetstone and elsewhere in my constituency are taking forward.
A third aspect of the NHS plan that I would warmly welcome is the improvement of digital capability, in which respect I wish to highlight an important success in my local area. In autumn last year, Chase Farm Hospital reopened in a brand new £200 million state-of-the-art building. It uses the most up-to-date digital facilities, and the new building is significantly improving patient care. It is situated just outside my constituency but used by many of my constituents and is part of the same trust as Barnet Hospital. I campaigned for many years to secure Chase Farm Hospital’s future, and I welcome the great new facilities for my constituents.
I will always be the strongest supporter of the NHS and its values. This debate is an opportunity to celebrate the incredible achievements of our national health service and its staff, but also to recognise that there is a huge amount of work to be done to ensure that the NHS can continue to meet the needs of future populations. We should never ever forget that delivering a strong economy and strong public finances is imperative if we are to continue to have a strong NHS. It is the only way to deliver the funding that the NHS needs to provide the care on which we all depend. A strong economy is vital to ensure that our constituents get the best possible healthcare in the years ahead, and I urge the Government to ensure that they continue to deliver the economic stability and prosperity on which we all depend and on which the NHS depends for a successful future.
Dr Paul Williams (Stockton South) (Lab)
It is a pleasure to follow my colleague the hon. Member for St Ives (Derek Thomas), who serves with me on the Health and Social Care Committee. I warmly welcome the new Minister to her place, but if she thought she would learn about public health in the debate, she will be sadly disappointed. I and Opposition colleagues have sat and listened to Government Members talk about anything other than public health. It is so disappointing that Government Members do not seem to know what public health is.
I really care about public health. I care about it so much that, after spending five years training to be a doctor and another four years training to be a GP, I did a master’s degree in public health. It is so important because it is about health inequalities and the massive gap in life expectancy, which we are seeing increasing. I represent the town of Stockton-on-Tees, where the life expectancy gap between men living in the most deprived areas of town and those in the wealthiest is more than 11 years; for women, it is more than 16 years. Much of that is because of the inverse care law that tells us that the people with the highest need are those least likely to access healthcare. Those with the highest need for cervical screening are least likely to access it. Those with the highest mental health problems are less likely to access those services. Those with the highest needs for smoking cessation services are least likely to access them. Investment in public health makes economic sense, because prevention is better than cure, and it makes really good social justice sense.
Tempting as it may be to invest in another building or buy another machine that goes ping, the real difference that can be made to health inequalities and public health comes right at the beginning of life. The first 1,000 days are where most health inequalities are sown. It was a privilege recently to chair the Health and Social Care Committee’s inquiry on the first 1,000 days of life: a time when developing brains make a million new connections every single second. If we get it right then, we can build healthy minds and healthy bodies, but if we get it wrong, that can cause all kinds of problems.
The fact is that more than 8,000 children in this country live in homes with the triad of a parent with a mental health problem, a parent with substance misuse problems and domestic violence. What intervention will make the real difference? How can we help those children? That is done largely through the work of health visitors, and I am afraid that since public health funding and the responsibility for public health was transferred to local authorities, we have seen a cut of 2,000 health visitors employed by the NHS and 1,000 Sure Start centres have closed.
These are the things that make the real difference. They make a difference to breastfeeding, of which our rate is one of the lowest in Europe; to child mortality, our levels of which are much higher than those in comparably rich countries; and to detecting the hidden half of women with perinatal mental health problems who say they were not detected by health services.
I hope that it has not been a deliberate strategy to disinvest from these important services. I think that it has happened by accident. Either way, we have to make a difference; the situation must be rectified. I welcome the work of the cross-departmental ministerial working group that the Leader of the House is leading, and I hope that the new Minister is lobbying the Treasury and making a passionate case for investment at the start of life.
Liz Twist (Blaydon) (Lab)
My hon. Friend is making a powerful speech about the importance of public health, especially in the early years. In Blaydon, which is part of Gateshead Council, the public health budget has reduced by 15% since the transfer of health visitor services, which has led to the loss of services that make a big difference to people on the ground. Is it not a shame that we are losing vital public health services?
Dr Williams
It is painful that that is happening in places such as Blaydon, where life expectancy is declining. Life expectancy in the north is declining, and there are huge life expectancy gaps between north and south. It is the very part of the country where we should be investing in public health, not making cuts. In Stockton-on-Tees, public health has been cut by £1 million in the past two years.
What do we want? It is 10 years since the Marmot review set out the evidence base for how to reduce health inequalities. We should be doubling down on investment in health inequalities. We should be investing in sexual health services. We should be investing in drug treatment services, which nationally have been cut by 16.5%. Instead, we see year-on-year funding reductions, public health is being cut to the bone, life expectancy is falling and health inequalities are rising. The Government need to show an absolute commitment not just to treatment services but to grassroots prevention services in communities up and down the country, and they must invest properly in public health services. Local authorities are the right place for them to be, but they have to be properly funded and supported.
Acquired Brain Injury
Liz Twist Excerpts(4 years, 12 months ago)
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Liz Twist (Blaydon) (Lab)
I thank my hon. Friend the Member for Rhondda (Chris Bryant) for opening the debate in such an excellent manner and the right hon. Member for South Holland and The Deepings (Sir John Hayes) for helping to secure it.
Acquired brain injury is often a hidden disability. It is so hidden that, before this all-party parliamentary group inquiry, I had failed to recognise that people I know—family members, friends and colleagues—have an acquired brain injury. Some people may have outward, visible signs of the trauma that they have been through, but for many there are no outward clues. That can mean that, instead of people recognising the disability and responding in a helpful or understanding way, they may be impatient or downright rude, or try to rush those with acquired brain injury. This may not just be the case for people we bump into; it could be the officials of one Department or another who really do not get it. For example, assessors for personal independence payment or employment and support allowance may not have sufficient understanding of the effects of acquired brain injury and fail to recognise that what may appear as a reasonable response can actually hide the reality of the disability.
It has been a real privilege to be involved in the inquiry and the report, “Time for Change”, to reach so many people affected by acquired brain injury, to hear their personal stories, to hear about the positive impact of effective neuro-rehabilitation and, sadly, sometimes to learn where such rehabilitation has not gone so well and people are struggling to cope. At the presentation of our report last year, we watched a very moving film showing people suffering from acquired brain injury describing their experiences. I found it a very moving experience that really brought home the difficulties that people can face.
The practical effects of acquired brain injury affect many areas of life, and our evidence sessions covered neuro-rehabilitation, education, criminal justice and sport-related concussion and touched on the welfare benefits system. The launch of “Time for Change” was well received, and was attended by Ministers, the shadow Secretary of State for Health and many other Members of Parliament. Most importantly, some of those who have acquired brain injury told us their personal stories. Our report made a number of recommendations in each area that we studied and, most importantly, called for Departments to work together to improve services and join things up. It was clear to us, as I am sure it will be to the House, that this is not just a health issue to be left to the Department of Health—although neuro-rehabilitation and physiotherapy, along with many other health services, are of huge importance in recovery and development—but one that needs to be joined up across other Departments.
If we are to make the real change that we have called for, we have to link up what happens in health with what happens at school, in the Department for Work and Pensions and in so many more Departments. Since the report was launched, there have been meetings with a number of Ministers, including the Chancellor of the Duchy of Lancaster and Minister for the Cabinet Office and the Economic Secretary to the Treasury, to name but two. The Government have now responded to our report, with the Department of Health pulling together responses to our recommendations from other Departments. I will refer to one of those Departments in particular—the Department for Education—and introduce a new area that was not covered in our report but that has been mentioned today.
It becomes clearer and clearer the more we look at it that acquired brain injury and its impact spread into so many different areas of everyday life, but I will focus on education and children. “Time for Change” called for some very specific measures. As we have heard from my hon. Friend the Member for Rhondda, this condition affects many more people in disadvantaged areas than elsewhere, so it is really important that we get to grips with it. Our recommendations were fairly straightforward. Acquired brain injury should be included in the special educational needs and disability code of practice. All education professionals should have a minimum level of awareness and understanding about acquired brain injury and about the educational requirements of children and young people with this condition—for example, with the completion of a short online course for all school-based staff.
Additional training should be provided for the named lead professional who supports the individual with acquired brain injury and for special educational needs co-ordinators. We recommended that the acquired brain injury card for under-18s produced by the Child Brain Injury Trust should be promoted in all schools, hospitals and local education authorities. Many children and young people with acquired brain injury require individually tailored, collaborative and integrated support for their return to school and throughout their education. As agreed return-to-school pathway is required—led and monitored by a named lead professional—to provide a consistent approach and support for the individual, their family and their teachers. An enhanced education campaign should be implemented in schools to improve awareness and understanding of sport-related concussion, with the support of Departments.
During filming for the launch of the report, I had the chance to talk to a young man from Scotland who had returned to school following an acquired brain injury and who told me about his experience of doing so. Simple things were not happening, like making sure that he had off-white paper because the white paper was far too bright for him to be able to take in. There was also the impact of noise affecting his concentration. They were all quite small things, in themselves, that were supposed to be planned for but actually did not happen. That brings it home to us that it is those small things that can make a big difference to children.
Chris Bryant
My hon. Friend is making a really important point. There are two other areas where we could do more in exactly the same way. One of those is in prisons, where toning down some of the sounds and noises makes it much easier for those with brain injury, and the other is in our supermarkets. It is great that Morrisons, certainly in my patch, has an hour at the beginning of the day when the lights are a bit dimmer. It would good if all supermarkets had a similar sort of event.
Liz Twist
I thank my hon. Friend for those remarks; I most certainly agree. As I say, we just do not think about these things sometimes, and they can have such a huge impact in improving things for people with acquired brain injury.
I am afraid that the Government’s response in this area was rather disappointing. As in earlier answers to parliamentary questions, the Department for Education seemed just to restate the current responsibilities of schools and governors for SEND—special educational needs and disability. Our inquiry showed that there needs to be a greater understanding, very specifically, of both the presence of an acquired brain injury in young children and the practical steps needed to help staff to support these children with what is often a hidden disability. We also need greater co-ordination between health and education professionals to support children returning to school after a brain injury.
We have recently had much discussion in this Chamber and in Westminster Hall about the funding pressures on schools and the impact that that is having, particularly on special educational needs. We really have to bear that in mind. It is not enough to restate the law and the theory—the thinking—behind special educational needs and education, health and care plans, and then leave it to staff and governors who are increasingly under pressure just to hold things together at school. I would have hoped for a more positive response in this area. I hope that Education Ministers will look at it again and address the need for more practical steps to ensure that pupils have what they need to develop and be supported at school.
Sir John Hayes
The hon. Lady is making powerful points. The key is that these plans have greater specificity and quantification so that the development of the response to someone’s needs could be as particular as it needs to be. That means quantifying exactly what happens once the needs and the response to them are drawn up.
Liz Twist
I thank the right hon. Gentleman for those comments. I most certainly agree that we need to have very specific proposals on how we can support people and to make sure that the support is actually put into place as well. As we know, there can sometimes be delays in achieving the ECHP, so I hope that more work can be put into that as well.
The Child Brain Injury Trust, which does excellent work in this area, has issued a call for action that includes some quite practical steps. It tells me that professionals across the field of acquired brain injury educational psychology are working hard to achieve the changes needed to support children in education following an acquired brain injury, but this requires all parties to listen and to implement the recommendations of the “Time for Change” report.
An acknowledgement of the support and interventions needed for paediatric acquired brain injury is required to limit the long-term societal costs and impact that this disability can have. Of course, it affects society as a whole, not just the individual. We want to give people the best chance in life, and that is why it is particularly appropriate to look at how we can support children who have an acquired brain injury. There needs to be improved training for newly qualified teachers—currently, acquired brain injury is not covered in that training—and a national campaign of recognition that acquired brain injury affects an additional 40,000 children and young people every year and has a significant impact on society.
The Child Brain Injury Trust says that acquired brain injury continues to be misdiagnosed and misunderstood, and our current system, and lack of knowledge and support, is letting down thousands of families. Funding is required for whole-family support. We need improved training for educators and youth justice teams, because over 60% of young people in custody report prior head injury. As other Members have mentioned, many young people affected by acquired brain injury are excluded from school due to their “inappropriate behaviour” and then go on to commit crime. Therefore, better knowledge of the condition and improved support has the potential to save society huge sums of money otherwise needed for youth justice.
The Child Brain Injury Trust calls for involvement and commitment from the Department for Education to support and fund some of these recommended initiatives. As I said, I hope that the Department for Education will take a more active part in looking after these young people and look again at its response to see how it can be improved.
The other area I want to touch on, which has already been mentioned by a number of Members, is acquired brain injury and carbon monoxide poisoning. This is not something that I had thought of myself. It shows, again, how many areas of our lives and our environment affect people and can cause acquired brain injury. I am a member not only of the APPG on acquired brain injury but the APPG on carbon monoxide, and earlier this year we had a special roundtable meeting chaired by my hon. Friend the Member for Rhondda. One of the difficulties is recognising when people are suffering from carbon monoxide poisoning, especially the impact that that can have on the brain. The shortage of support is particularly difficult for people with an acquired brain injury caused by carbon monoxide poisoning, as they are less likely to receive specialist treatment if they experience low-level carbon monoxide exposure that results in more subtle neurological effects. To address this, the APPG on carbon monoxide recommends that NHS England develop a specialist clinic for people with long-term neurological effects caused by carbon monoxide exposure. This will help to plug the gap in care provision and enable future studies that will innovate treatment methods.
We must also remember that, as the Government said in their November 2018 health and social care policy paper, prevention is better than cure, and preventing carbon monoxide poisoning will also prevent some of these acquired brain injuries. The APPG recommends that the Government introduce preventive measures, including mandating carbon monoxide alarms in all tenures. I know that the Government are already looking at this in certain tenures, but it should be across all tenures. Carbon monoxide monitors should be provided for those in first-time pregnancy. We must tackle substandard housing that increases the risk of carbon monoxide exposure. We also recommend that Public Health England and the Foreign and Commonwealth Office do more to raise public awareness of carbon monoxide, to encourage risk-lowering behaviours at home and abroad. The special roundtable meeting that we had was very productive. We had a high number of medical people there who were recognising this problem that perhaps the rest of us had not recognised until now. We need some practical steps to improve that.
I have mentioned the Child Brain Injury Trust’s recommended actions, particularly on education. There is so much more that I could say, but much of it has already been said, so I will only mention a few things. We are seeing more people survive severe trauma, and we must give more effective support after they recover from their immediate injury, to help them develop their life.
Jim Shannon (Strangford) (DUP)
I thank the hon. Lady for giving way. I have personal experience of this through my brother, who unfortunately had a very severe accident, which left him brain-damaged. Owing to the determination of my parents and family, who took the time to care for and look after him, we were able to give him some sort of an independent life, which is very important. He is happy and safe with his carers, friends and family. Does the hon. Lady agree that more needs to be done to support the families of those with ABI, to give them hope that there can be more than Sunday visits to a designated place—there can be a home life as well—and there is a chance of a semblance of normal life for people with ABI? Intensive care packages are essential to rehabilitation, and funding must be available for them. It is so important to give people who have acquired brain injury a normal life, if at all possible.
Liz Twist
I thank the hon. Gentleman for his comments. I certainly agree that we must give more support to the carers and families of young people or adults with acquired brain injury, while allowing the person who is directly affected to have as full and good a life as they can.
I want to mention the “One Punch” campaign. We are becoming increasingly aware of the impact that one punch on a night out, perhaps after a lively evening, can have. It can be devastating, and I am glad to see campaigns around the country aiming to ensure people are aware of that. We have talked about how sports must keep up the level of support and awareness and, if in doubt, sit people out. That is really important. We have also heard about the huge impact on our prison community. We must develop a response to that, so that we can take account of acquired brain injury and how it affects people’s behaviour and development.
Headway has made some recommendations. It says:
“Brain injury can happen to anyone, at any time. Living with the effects of a brain injury creates challenges in almost every area of life.”
That is so true. Headway is calling on Members of Parliament to recognise and support the needs of service users, families and carers, including greater understanding of the complexity and hidden effects of brain injury; wider recognition of the symptoms of brain injury, to ensure rapid and accurate diagnosis; access to timely, specialist rehabilitation and support services; an end to lengthy waits for social service assessments for support funding; changes to disability benefit assessments, which currently fail a large number of brain injury survivors and their families—Headway has a campaign called “Right First Time”—and more effective data gathering across the NHS, to provide clearer evidence of the needs of survivors, around diagnosis, acute care, longer-term rehabilitation and support to regain independence. Acquired brain injury is life changing, and we must do everything we can to support people across all spheres of life.
Oral Answers to Questions
Liz Twist Excerpts(5 years, 1 month ago)
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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)
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(5 years, 1 month ago)
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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?
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—
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?
