Children with Life-limiting Conditions

Liz Twist Excerpts

Tuesday 29th January 2019 Westminster Hall

[Liz Twist (Blaydon) (Lab)]

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

[Julie Cooper]

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

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

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

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

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

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

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

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

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

Appropriate ME Treatment

Liz Twist Excerpts

Thursday 24th January 2019 Commons Chamber

[Liz Twist (Blaydon) (Lab)]

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

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

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

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

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

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

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

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

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

[Several hon. Members rose—]

Mental Health First Aid in the Workplace

Liz Twist Excerpts

Thursday 17th January 2019 Commons Chamber

[Liz Twist (Blaydon) (Lab)]

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

[Johnny Mercer]

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

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

Ovarian Cancer: Diagnosis and Treatment

Liz Twist Excerpts

Tuesday 30th October 2018 Westminster Hall

[Liz Twist (Blaydon) (Lab)]

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

[Lee Rowley]

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

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

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

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

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

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

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

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

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

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

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

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

Social Care Funding

Liz Twist Excerpts

Wednesday 17th October 2018 Commons Chamber

[Liz Twist (Blaydon) (Lab)]

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

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

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

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

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

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

Oral Answers to Questions

Liz Twist Excerpts

Tuesday 24th July 2018 Commons Chamber

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

I wish my hon. Friend’s constituent well and pay tribute to the money that the local community has raised. I will connect my hon. Friend to the office of Cally Palmer, the national cancer director. As we write the new long-term plan for the NHS—to which the cancer stream is so central—we will ensure that innovative new technologies and treatments that were not thought of even a few years ago are also at its centre.

[Liz Twist (Blaydon) (Lab)]

T6. Three times more people die by suicide each year than in road accidents. Today, Samaritans volunteers across the UK are taking part in its awareness campaign, “The Big Listen”. What action is the Secretary of State taking to ensure that local agencies are encouraged and resourced to carry out awareness-raising work to get out the message that suicide is preventable, not inevitable, in line with NICE’s draft guidelines?

[Jackie Doyle-Price]

I thank the hon. Lady for her dedicated work on this issue. She is right to pay tribute to the work of the Samaritans, and the Department is pleased to do everything that we can to support the Samaritans in this area. Our real tool for tackling suicide is to ensure that the local suicide prevention plans are up to spec to deliver a reduction in suicides. We will be taking steps properly to interrogate the quality of the plans so that we can deliver against the guidelines.

Department of Health and Social Care and Ministry of Housing, Communities and Local Government

Liz Twist Excerpts

Monday 2nd July 2018 Commons Chamber

[Craig Mackinlay (South Thanet) (Con)]

We have heard some fantastic speeches from Members on both sides of the House about adult social care. I am not sure that we have been given the solution, but I think we have realised that there is a problem that needs to be solved.

Housing represents, potentially, a great asset for people in later life, which can help to pay for adult social care and other services that people need as they age. My worries are about house-price-to-earnings ratios and house price inflation. In 1996 the Nationwide house-price-to-earnings ratio was just 2.8, which means that 2.8 times someone’s earnings could buy that person the average house in the United Kingdom. Over the past 40 years, house price inflation has averaged 5% a year. That affordability gap is now extremely wide throughout the country. It is bizarre. One would have thought that the areas with the highest house prices would have the lowest ownership, but the reverse is the case. In the north-east, 60% of people are owner-occupiers, and the house-price-to-earnings ratio is just over 5. In the south-east, where house prices are obviously higher, 70% of people own their homes, but the ratio is now close to 10. That does not quite follow the pattern that we might expect.

Back in 1995, it would have cost first-time house buyers 17.5% of their incomes to service their mortgages. According to the figures that are available, in late 2016 the proportion was 33%. At the peak in 1989, base rates were approaching 14%, and it was costing 56% of income to maintain a mortgage, so we are not living in unusual times.

Thankfully, we are narrowing some of the gap between housing requirement and provision. It has been running at an estimated rate of 230,000 a year for some years, and will continue into the future. We built 217,000 houses last year, which is all to the good, but we have a fundamental problem: we do not seem to want to live together as generations any more. We seem to want independent living, and that can often lead to lonely living. There is a potential solution there, which might also solve some of the adult social care problems.

Is it time that we had a debate about a further loosening of planning law? Let me put some questions—not solutions—on the table. Are we allowing a degree of timidity in relation to development? Are we just trying to add little bits to existing conurbations, thus increasing pressure? Are we not thinking clearly enough about the building of completely new towns, with proper infrastructure—road, rail, health provision and schools—as part of the plan, rather than simply adding to the edges of existing communities?

Should we be trying to unlock brownfield sites? I can think of a perfect 5-acre derelict site that used to be the gasworks in the middle of Ramsgate. No one wants to develop it because of the remediation costs. Should legislation be introduced to force what are often utility companies to regenerate on pain of, perhaps, an additional business rate charge, or should the Government provide loans with a clawback provision to inject the seed capital to get developments moving?

We do have an existing stock, and I think that two measures would be helpful. Capital gains tax and inheritance tax are a problem, particularly for older people with holiday homes. Let us suppose that an elderly couple have had a holiday home for many years. One of them might become a widow or widower. They have fond memories, and do not want to rent out the property because of the aggravation that it would involve. Most people will not face an inheritance tax charge. Why on earth would they want to sell an asset that is hugely pregnant with gain, paying capital gains tax at 18% or 28%? They would rather leave it in their estate until they die, and perhaps pay nothing at all. As for those with a chargeable estate, why should they pay a 28% capital gains tax charge, and then a 40% inheritance tax charge on the £72 that is left in cash after that tax has been paid, which would represent a total tax charge of 57%?

The second measure I present is downsizing relief for stamp duty. Often, again, this would affect the elderly person, perhaps on becoming widowed. There is a north-south divide in this of course: in parts of the country it will be perfectly possible to buy that downsized smaller property for within the £125,000 stamp duty threshold for paying zero, but for many in the south, particularly in London, there will be a huge stamp duty to pay. My proposal is that we should have a downsizing relief for people moving to a smaller floor-area property—the threshold could perhaps be 75%. The Treasury might say it would lose money, but it forgets that for every seller there would be a new purchaser, so we would be creating stamp duty on purchases that might not otherwise have happened at all.

[Liz Twist (Blaydon) (Lab)]

Does the hon. Gentleman agree that housing is also a key determinant of health and that is an additional aspect that we must think about, especially in housing for older people? We must see housing as part of that bigger picture in creating a healthy nation.

[Craig Mackinlay]

Older people often stay stuck in a house that is not right for their future needs and is further from help they would so desperately require in their later years.

To conclude, housing is a scarce resource, particularly in some parts of the country, and we must maximise its use and maximise mobility.

Phenylketonuria: Treatment and Support

Liz Twist Excerpts

Tuesday 26th June 2018 Westminster Hall

[Mr Laurence Robertson (in the Chair)]

Given the number of Members who will seek to catch my eye, I am imposing a four-minute time limit on Back-Bench speeches.

[Liz Twist (Blaydon) (Lab)]

I beg to move,

That this House has considered access to treatment, support and innovative new medicines for phenylketonuria patients.

It is a pleasure to serve under your chairmanship in this important debate, Mr Robertson. It is just over 12 months since I was elected Member of Parliament for Blaydon, and only a few days less than that since I first heard of phenylketonuria—commonly known as PKU, which is easier to pronounce. One of my constituents, Barbara McGovern, had called at my office and spoken to a member of my staff about whether I would attend an event in Westminster on 28 June. Barbara’s son Archie has PKU, and she described his condition and some of the restrictions that he has to cope with every day. Her explanation of what PKU means, and her determination to get the best for her son, impressed my staff, who made sure that I attended the reception to learn more about the condition. Barbara and her husband David, and Archie, have travelled from the north-east to listen to the debate, and I welcome them.

Since that first encounter, I have been lucky enough to be introduced to the officers of the National Society for Phenylketonuria, and have had the chance to work with them and its other members to raise the profile of PKU, get people to understand it and its effects, and press for access to treatment and support. I will give a few of the many names that I could mention. Kate Learoyd and Caroline Graham both have children with PKU, and they have dedicated much of their time to talking to Members about the condition and the need for action for people who live with PKU. Professor Anita MacDonald OBE, of Birmingham Children’s Hospital, also does much to raise awareness of the condition and goes above and beyond in advising families affected by PKU on diet.

[Ian Austin (Dudley North) (Lab)]

I commend my hon. Friend on securing the debate and on her leadership of the all-party parliamentary group on phenylketonuria. There are lots of health-related campaigns for more resources, new treatments and drugs. Many have plenty of resources and are funded by major pharmaceutical companies, which hire expensive lobbyists and all the rest of it. The remarkable thing about Kate Learoyd and Caroline Graham is that they are parents of children with the condition, and their campaign is entirely voluntary. They have to fit it around their family and other commitments, which makes their work all the more remarkable.

--- Later in debate ---

[Liz Twist]

My hon. Friend is absolutely right, and of course there are many others working hard in the NSPKU.

PKU is a rare inherited disorder, affecting about one in 10,000 babies. Most people are familiar with the pinprick test that newborn babies are given; that is how the condition is picked up. It is one of a series of tests given. People with PKU are unable to break down the amino acid phenylalanine, which is found in proteins. They must have a diet very restricted in protein to prevent problems. If the condition is not properly controlled, it can lead to severe neurological and brain damage, as well as to behavioural problems. Untreated PKU causes profound, irreversible intellectual disability, seizures and behavioural problems. As the damage is not reversible, early diagnosis and early consistent treatment are vital.

I say that the condition can be treated by diet; that sounds easy, but it is not. Imagine, as a child or young person, trying to cope without all the foods that most children and adults take for granted. When we think of food that is high in protein, we probably think of meat, but that is the straightforward bit. All meats are on the red list, and so is fish. Everyday bread is too high in protein, so people with PKU must have special bread without protein, much of which must be baked at home using a specially prescribed flour.

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

Having learned about the disease and issues connected with it, I think that the hon. Lady is right to argue for better treatment, but I am struck by the peculiar and intense pressures that PKU puts on parents and carers. Does she agree that we should explore ways to support them in coping with those pressures?

[Liz Twist]

I agree. There is incredible strain on parents—and of course on people with the disease, but we must not forget about the parents.

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

I commend both my hon. Friend for securing the debate, and the many parents and families who work to raise the issue. She is right to highlight how challenging the condition can be for children, particularly in adolescence. A constituent told me that her daughter asked whether, for her 18th birthday, she could eat a pizza in a restaurant—seemingly a normal activity for a teenager, but a clear challenge for such children, who want to fit in with their peers.

[Liz Twist]

My hon. Friend is right, and I want to touch on that issue.

As well as having to have bread specially baked with prescribed flour, people with PKU can have no cheese, eggs or dairy products. Even some vegetables, such as cauliflower, are problematic, and so are potatoes, so there can be no chips or crisps. The daily intake of food needs to be monitored constantly. Imagine how that must be for a child at school who just wants to join in with classmates, or for young people who want to go out and socialise with friends—perhaps to go for a pizza, as my hon. Friend mentioned—and get on with their life. Everything must be measured and calculated to make sure that the appropriate level of protein for the child or adult with PKU is not exceeded.

Let us not forget that the condition is lifelong, and adults, too, must restrict their intake of protein. On top of all that I have described, both children and adults must take a protein supplement. I and other MPs have had the chance to try it, courtesy of our friends at the NSPKU, and it is not a pleasant experience. That puts additional pressure on parents, who often struggle to get their children to take the supplements, which they really need, three times a day. Making sure a child has the right diet, including when parents are not around to control it, and trying to make food interesting, often by starting from scratch with basic low-protein foods, is a minefield.

[Neil Gray (Airdrie and Shotts) (SNP)]

I congratulate the hon. Lady on securing the debate and on her work for the all-party group. A constituent shared with me some experiences similar to the ones that she has outlined. They are heartbreaking, and other Members who have constituents with PKU will share that feeling. Does the hon. Lady agree that alongside the medicinal treatments that might be available, it is important to raise awareness, through debates such as this one, and through Thursday’s “diet for a day”, in order to help provide and incentivise more support for parents who are supporting their children with PKU?

[Liz Twist]

I agree; it is important to look at the question in the round.

Many parents find that they need to give up work or reduce their hours to maintain their child’s diet and keep them healthy. At the end of last year, the NSPKU produced a booklet and video, “Patient Voices: Listening to the experience of people living with PKU”, which clearly and movingly sets out the practical and psychological impact of the condition on individuals.

[Mr Jim Cunningham (Coventry South) (Lab)]

I congratulate my hon. Friend on getting the time for a debate on the issue; not enough is known about it. It strikes me, as I listen to her, that a child with PKU is a prisoner of their body, in a way, and so are their parents, because of the regimented way they must deal with the child’s needs. Does she agree?

[Liz Twist]

I most certainly agree that it places an incredible strain on parents, who must live with that all the time. I recommend the “Patient Voices” booklet and video to anyone who has not already seen them.

In this debate, I will highlight very specific concerns about treatment and support for PKU. The first is the issue of access to a drug treatment, sapropterin, which is thankfully more commonly known as Kuvan. Although it is available in 25 countries across Europe, and was licensed for marketing over 10 years ago in the European Union, Kuvan is not available to people with PKU in the UK.

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

I congratulate the hon. Lady on this important debate. She makes a hugely important point about the licensing of Kuvan. The European Medicines Agency licensed the drug in 2008, and 10 years on we have buck-passing between the National Institute for Health and Care Excellence, the Department of Health and Social Care and NHS England. It is deeply concerning. I am representing two children with PKU—I am sure there are many more—in my constituency. I got a letter back from NICE just a few weeks ago that said that the condition and the treatments for PKU are

“the subject of a NHS England commissioning policy…not covered by any existing NICE guidance.”

It went on to pass the buck back to NHS England. Does the hon. Lady agree that it is time for the buck-passing to stop, and for the treatment to be licensed?

[Liz Twist]

I absolutely agree. I hope that one of the good things that will come out of this debate is that the buck stops being passed, and the assessment gets done as quickly as possible. It is so important for people to have access to this drug; we need that to be sorted.

There is evidence that for a significant proportion of people with PKU—about 25% —this drug can significantly improve their condition. It does not cure it, but it does make it much easier to deal with the dietary issues, which have such an impact on the way people live their lives. Despite the drug having been around for so long, NHS England has only recently considered it for the management of PKU. The drug has now been referred to NICE for assessment and technology appraisal. The APPG on PKU recently heard from NICE about the process, but there is concern about the timescales and how the benefits of the treatment will be assessed. Understandably, there is huge frustration on the part of the PKU community that there are children and adults who could be benefiting from Kuvan now, and there is substantial evidence to support its benefits.

There is a particular issue about prescribing Kuvan for pregnant women with PKU, who can understandably find it hugely difficult to control their diet, and who fear the effect of any problems on their unborn child. While there is a 2013 commissioning policy in place that allows Kuvan to be prescribed to some pregnant women, it can be difficult for women to be prescribed it in a timely way.

Some people, some of whom are in this room, have had access to Kuvan through individual funding requests, or on a trial basis. Those people have found real benefits from the drug. My constituent Archie, who is here, started on the treatment earlier this year. Archie tells me he has benefited from having Kuvan, not just because his diet is now much less restricted and he is able to do what many of his school mates do, but because it has improved his energy and his life. As his mum Barbara said to me, “If we had been coming here before the treatment, we would have been bringing our own special breakfast for Archie to eat in the hotel, and would have had to watch everything he ate very carefully. It has made a real difference.” I hope that the Minister will be able to assure us that the assessment of Kuvan will be done very quickly, and that it will be available to the people it can help.

[Vicky Ford (Chelmsford) (Con)]

I congratulate the hon. Lady on securing this important debate. Kuvan, the brand name for sapropterin, is clearly deeply beneficial for about 20% to 30% of sufferers. I met the manufacturers last week, and they told me they had written to NHS England twice to ask for meetings to discuss price, but they are still waiting for a response. Will she join me in urging the Minister to use all his best offices to ensure that that meeting and the price negotiation can go ahead?

[Liz Twist]

I certainly do join the hon. Lady in that wish. I too have met BioMarin, which says it is prepared to negotiate significantly on the price, but we need to get in there and ensure that it happens quickly.

[Mr George Howarth (Knowsley) (Lab)]

I congratulate my hon. Friend not only on securing this debate, but on the knowledgeable and passionate way in which she is putting the case. Does she agree that this is an example of the way that we in this country are very bad at dealing with rare conditions and potential therapies or treatments for them? Does she believe that, while this needs to be hurried up, the whole process needs to be streamlined and sped up?

[Liz Twist]

I certainly agree with my right hon. Friend. It has become clear, as we have looked into the issue, that there is a very complex way of assessing drugs. Clearly, we want to get the process right, but there needs to be a rigorous look at that process, not just for Kuvan, but for other treatments for rare diseases. PKU perhaps falls between the cracks, because it is not quite rare enough to be in that group, but it is still very rare, and will be pushed to the back of the queue if it goes into a more general group.

For those whom Kuvan will not help, and who still need to manage their diet carefully, there is another issue that must be addressed: access to low-protein foods, which help to maintain the diet. Individuals may be advised through their dietician and their specialist centre that they need a particular level of foodstuff supplies, such as the low-protein flour I mentioned, which I am told can be used in many ways to try to make the diet more palatable. General practitioners, however, may not have a complete understanding of the condition or the dietary needs, and may feel that patients are just trying to get food on the cheap, and they may limit or deny prescriptions for those foodstuffs. They may feel that they are like gluten-free foods, which can be bought at supermarkets.

The fact is that those foods and supplements cannot be bought; they are available only on prescription, and the absence of them creates a real injury to those affected. It is not just that they are not there; it is actually damaging if they are not available. It would be good if the Minister could address how we can ensure that GPs prescribe the specialist foodstuffs that form part of the treatment that those with PKU need, and how we can close the gap between the specialist services, clinical commissioning groups and GPs.

[Nigel Mills (Amber Valley) (Con)]

I add my congratulations to the hon. Lady. Does she agree that there should be clear guidance, so that GPs or CCGs that are thinking about stopping prescribing that stuff can be told quickly and clearly that that is the wrong thing to do, and that there is no other way of getting this bread, and so that if one of them is foolish enough to go down that line, there can be a quick resolution?

[Liz Twist]

I thank the hon. Gentleman for that comment, and I agree. Last week at the APPG meeting, we heard some terrible stories; over the years, people have felt as if they were asking for a favour in asking for those goods. They are not; the goods are absolutely essential, and they cannot be bought over the counter. We must do something about that. We need to square that circle.

Finally, for the 75% who will not benefit from Kuvan, it is important that new, innovative treatments are developed and assessed quickly, so that more people can benefit from treatments that enable them to live well and safely with the condition.

To conclude, it is important that we listen to individuals and families who are living with PKU day in and day out. It is time that this condition was acknowledged, and that we addressed the need for effective treatment. I hope that the Minister can give us positive news that will move us forward in helping those with PKU.

This Thursday, on National PKU Awareness Day, I and many other hon. Members in this room and across the House will undertake the PKU “diet for a day” challenge. We will restrict our protein intake to 10 grams a day, avoid all those things we normally eat without thinking, such as that piece of toast in the morning or Rice Krispies with real milk rather than coconut milk, and drink tea or coffee without milk. We know that we will not really face those restrictions day in, day out, or the relentless grind of getting the diet right to stay well, but we hope that it will help raise public awareness of PKU, and help to bring about change.

--- Later in debate ---

[Liz Twist]

What can I say in less than one and a half minutes? I thank all hon. Members who have taken part today. I thank the hon. Members for East Renfrewshire (Paul Masterton), my hon. Friend the Member for Portsmouth South (Stephen Morgan), the hon. Member for Waveney (Peter Aldous), my hon. Friend the Member for Dudley North (Ian Austin), the hon. Members for Chelmsford (Vicky Ford), for Dwyfor Meirionnydd (Liz Saville Roberts) and for Strangford (Jim Shannon), my hon. Friends the Members for Warrington South (Faisal Rashid), for Hornsey and Wood Green (Catherine West) and for Derby North (Chris Williamson), the hon. Member for Linlithgow and East Falkirk (Martyn Day), my hon. Friend the Member for Washington and Sunderland West (Mrs Hodgson) and the Minister for his reply.

I am rather disappointed that we did not have a bit more promising news on the future of Kuvan, but we will be back; we will ensure that the Minister hears from us again, and we will continue our campaign. Finally, I thank all the families who are here today to show how strongly people feel about the issue. I thank everyone for attending. The issue will not go away. We will be back and will keep pushing this agenda.

Question put and agreed to.

Resolved,

That this House has considered access to treatment, support and innovative new medicines for phenylketonuria patients.

[Mr Laurence Robertson (in the Chair)]

Would hon. Members leaving please do so quietly? Thank you. We have another debate.

ME: Treatment and Research

Liz Twist Excerpts

Thursday 21st June 2018 Westminster Hall

[Liz Twist (Blaydon) (Lab)]

Like my hon. Friend, I have heard from many constituents affected by ME who asked me to come today to make their voices heard. He made the point about invisibility earlier, but some of the people who are not able to get out do things from their beds. For example, one of my constituents organised the lighting up of the Tyne Bridge in blue last year, so there are things that people do to make sure we get the message across.

[Luke Pollard]

Absolutely. I thank my hon. Friend for making that point. I am a big believer in digital. As colleagues in the House know, I often talk about it. The ability of digital communities to connect the ME community to help them share experiences and realise they are not on their own is especially important, and I pay tribute to all the people like my hon. Friend’s constituent who do so much.

I want to talk about the effect of ME on young people. The condition affects people of all ages, but sometimes the most acute effects are felt by those whose lives have effectively been taken away at such a young age. Dawn reached out to tell me about her son who is 16 years old and suffers from ME. It was initially brushed off as a migraine and a growing pain and she was told children sometimes get stomach aches. She wrote:

“My intelligent, sporty, active son has now spent over two years virtually housebound. This horrible illness has robbed my son of his teenage years. He only has one friend, has huge gaps in his education, won’t be at the School Leavers’ Assembly, nor the prom. He had to give up football and badminton, his real loves. And all we can do is wait until he gets better.”

The stories of young people with ME are especially powerful, because we all recognise the potential in young people and what amazing things, given the right opportunities and support, they can and will do. For many young people with ME that potential is taken away, and it is especially acute because losing time during their school years affects not only their education but their societal development and the friendship networks they build around them.

Oral Answers to Questions

Liz Twist Excerpts

Tuesday 19th June 2018 Commons Chamber

[Steve Brine]

Yes, indeed. As the cancer Minister, I consider CAR-T to be one of the most innovative and exciting treatments ever offered on the NHS. NICE is considering the first of the therapies this year and preparations are well under way. We are working closely with NHS England to make these transformative medicines available to cancer patients.

[Liz Twist (Blaydon) (Lab)]

Patients with PKU—phenylketonuria—are awaiting progress on the approval of a drug called Kuvan. In the meantime, their illness is controlled by diet. Will the Secretary of State and other Members join me in Committee Room 21 after this meeting to hear about the “Diet for a day” challenge, which many Members across the House are taking up next Thursday?

[Steve Brine]

Having just dialled into the Secretary of State’s diary, I know that he is going right after these questions.