Batten Disease

Marie Rimmer Excerpts

Monday 22nd July 2019 Commons Chamber

[Seema Kennedy]

We are putting record amounts of funding into the NHS, but I would rest again on the independence of the NICE process and the fact that it is experts and clinicians who are making these decisions. I agree that these are dreadful decisions and it is very hard for us to make them, which is why we rely on that expert advice. I would say to the hon. Gentleman that other jurisdictions are not always a good comparison.

[Ms Marie Rimmer (St Helens South and Whiston) (Lab)]

I thank the hon. Member for North East Somerset (Mr Rees-Mogg) for securing this urgent question.

Will the Minister, while working to secure the funding of the drug Brineura to help sufferers of Batten disease such as my young constituent Kaycee Bradshaw, look at how we can help to prevent companies such as BioMarin from charging extortionate fees for life-changing drugs? Sadly, this company also charges beyond the NICE framework for Kuvan, a vital drug needed by my young constituent Liam, who suffers from PKU. BioMarin made a net-product revenue increase for 2018 of $31.3 million from Brineura and $26.1 million from Kuvan, and $1.5 billion from across its range of drugs. This, by my standards, is a clear example of playing profits with people’s lives. It hurts even more that it is children who are suffering. It is not on. It is time that Governments got together and took heed. We do not know what other countries are paying. It might be less than our £300,000 or it might not, but something must happen. Get together and put the pressure on, but please, please secure these drugs for our children.

[Seema Kennedy]

I pay tribute to Kaycee and Liam. The hon. Lady makes a very important point. We want pharmaceutical companies to develop their medicines here, so that they are brought to the market here first and our constituents have access to them. However, we also have an obligation to spend taxpayers’ money in a very fair way, so that every penny we spend is spent correctly and appropriately. When it comes to PKU, Orkambi or Brineura, what we are all—NHS England and all of us here—saying to the drug companies is that we will pay a price, but we want it to be a fair price.

Children and Mental Health Services

Marie Rimmer Excerpts

Tuesday 16th July 2019 Westminster Hall

[Ms Marie Rimmer (St Helens South and Whiston) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Pritchard. I applaud the hon. Member for Burton (Andrew Griffiths) for securing this debate. Children and young people’s mental health is incredibly important. I appreciate the contributions of other Members. I have similar situations of children suffering in my constituency, but I will not repeat them.

I want to focus on three issues that are important to the mental health of our young people. First, I want to raise the issue of young people’s mental health within our judicial system, which I spoke about in this Chamber only a few months ago when I highlighted how young people with mental health issues had been forgotten in the Government’s response to the Justice Committee’s report on the disclosure of youth criminal records. I emphasise that when we look at the Government’s funding plans for young people’s mental health—they are welcome, but could stand to go further—we should not forget the vulnerable young people who have been taken out of mainstream schools and placed under the care of the UK’s judicial system. Many of those young people may not understand why they are there, and they are placed under stress and pressure that even we as adults would struggle to cope with. We must ensure that does not lead to the degradation or further degradation of their mental health, which may damage their chances of rehabilitation.

Secondly, I want to raise the issue of personal, social, health and economic education—also known as PSHE, and formally known as citizenship—for those young people still within our education system. Frankly, the provision is woefully inadequate for the issues it is trying to tackle. There is little to no guidance from central Government, and how the provision is conceived and delivered is almost completely up to the school. That has produced an almost laughable system where each school can have a completely different interpretation of the curriculum and its requirements. One school might require just 15 minutes a week during form time, yet 30 minutes down the road, another school might give an hour’s lesson once a week.

Within that time, teachers are expected to cover everything from mental health to how mortgages work, to sexuality, to how Government and this place works, all with little to no guidance. Many schools simply do not provide the time required to tackle the subjects properly. The lesson material is often put together by a teacher who happens to have the time or by a third-party company that knows little to nothing about it. Neither of them may have the necessary subject matter expertise. I call on the Government to get to grips with the issue and make PSHE a statutory subject with guidelines on the content of the subject area, so that the situation does not essentially amount to, “It’s up to you.” There should be a key focus on mental health, which is too important to have such vague guidelines.

Finally, I want to touch upon the subject of loot boxes in video games. For those who do not know, loot boxes are a mechanic in video games that require someone to pay money to get a box or a pack. Within the box, they might get a piece of very good equipment, a rare boost or a character that will give them an edge when playing online against other people, or they might get something that is rubbish. If they already have it, it is virtually useless to them. To put it in plain English, loot boxes or “surprise mechanics” are essentially gambling. The mechanics also have no impact on the age rating for a game, meaning that young people of all age ranges can be exposed to what are basically gambling mechanics.

I am not someone who believes that video games are bad for young people and rot their brains, as some would put it, but such gambling can have a negative effect on young people’s mental health and cause addiction. There is a reason why we have age restrictions for fruit machines and gambling websites. Even then, we can see the negative effect on adults. I therefore call on the Government to follow the lead of countries such as Belgium and step in to deal with gambling mechanics and their impact on the mental health of our children.

Oral Answers to Questions

Marie Rimmer Excerpts

Tuesday 19th February 2019 Commons Chamber

[Caroline Dinenage]

There are several points here. On local community services, as the hon. Lady heard, we are putting an extra £4.5 billion into community and local health services. Through the National Institute for Health Research, we fund brain injury research into how technology and other innovations can be used to better support people.

[Ms Marie Rimmer (St Helens South and Whiston) (Lab)]

9. What plans he has to ensure that improvements to dementia care are included in the forthcoming Green Paper on social care.

[The Minister for Care (Caroline Dinenage)]

The social care Green Paper will bring forward proposals to ensure that all adults, including those living with dementia, receive high-quality care whenever they need it. The Government also remain committed to delivering Challenge on Dementia 2020, making dementia care in England the best in the world.

[Ms Rimmer]

Sadly, there are an estimated 3,000 people over 65 living with dementia in my constituency. It is clear that the social care crisis is a dementia crisis. Alzheimer’s Society research shows that dementia care providers often charge a premium rate of over 40% more than the standard rate. Will the Minister consider introducing a new dementia fund, as part of the Green Paper process, to end the unfairness facing dementia patients and their families?

[Caroline Dinenage]

The hon. Lady is absolutely right to raise dementia. It is a massive issue in everybody’s constituency and there is hardly a family that is not affected by it in some way. We are on track to meet our pledge to invest £300 million in dementia between 2015 and 2020. We continue to fund research for dementia treatments and cures. The Care Act 2014 introduced a national threshold that defines the care needs local authorities must meet, eliminating the postcode lottery of eligibility across the UK.

Oral Answers to Questions

Marie Rimmer Excerpts

Tuesday 15th January 2019 Commons Chamber

[Matt Hancock]

Absolutely. I look forward to working on that with my hon. Friend and local commissioners, and also to working with my hon. Friend before the spending review, when the next round of the capital allocations will be set.

[Ms Marie Rimmer (St Helens South and Whiston) (Lab)]

T7. In line with the long-term plan, leaders in St Helens have integrated health and social care teams and budgets, and there is a joint role for an accountable officer and director of social services. Can the Secretary of State assure me that that successful place working will not be put at risk by restructuring in NHS England and NHS Improvement, and indications in the long-term plan that integrated care systems need to be formed on sustainability and transformation plan footprints?

[Matt Hancock]

Yes, 100%. That is exactly what is in the plan, and I am delighted to have such support. This is precisely the direction in which we need to go in integrating care to ensure that patients are served better, whoever is the ultimate funder of the service.

 Orkambi and Cystic Fibrosis

Marie Rimmer Excerpts

Monday 19th March 2018 Westminster Hall

[Ms Marie Rimmer (St Helens South and Whiston) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Evans. I congratulate the hon. Member for Sutton and Cheam (Paul Scully) on securing the debate. For good reason, the issue has galvanised popular opinion.

As we all know, cystic fibrosis is an extremely serious, debilitating and life-limiting—yet thankfully rare—diagnosis. As we have heard, in February, Vertex proposed a portfolio approach whereby all current and future cystic fibrosis medicines, including Orkambi, would be made available to eligible patients through a fixed budget cap to the NHS.

I was extremely disappointed to hear NHS England’s response on Friday that there will not be further funding for Orkambi. As it is a treatment that is proven to improve and prolong the lives of 50% of sufferers, that decision is a cruelty to cystic fibrosis sufferers across the country. The portfolio approach has been accepted and agreed in the Republic of Ireland, Austria, Denmark, France, Germany, Luxembourg, the Netherlands, Italy, Greece and the US, but sadly, discussions here—with the world’s best health service—have broken down.

CF causes a build-up of mucus in the lungs that means that patients require physiotherapy, almost from birth, to keep them breathing properly. CF patients are more susceptible to lung infections and can suffer from malnutrition owing to the effect of the condition on the pancreas. When NICE made its initial evaluation of Orkambi as a treatment for the devastating condition, the evidence that it slows lung deterioration by 52% and reduces hospital admissions was not available, and therefore not costed. NICE is simply not fit for purpose any longer; it cannot evaluate a portfolio approach and precision drugs. For NHS England to turn its back on the small group of patients that suffers with this rare, debilitating illness and to ask Vertex to reapply to NICE is shocking. If it did reapply, it would get exactly the same answer—so why do it? Does NHS England understand that? Does NICE understand that? Are we going to send these seriously affected families around and around?

Vertex now has a broader pipeline of 18 drugs that will follow Orkambi in the next seven years. If the portfolio is agreed, it will advance on to those medicines. Will the Minister work towards a more flexible approach? Simply, he must get involved to benefit the small group of patients for whom a much better quality of life is in sight, but just out of reach, otherwise they will never get the treatment that they deserve and that they should be getting.

The parents of two constituents, Christian Jones and George Barton, contacted me. Christian’s mother, Hayley, wrote to me and said that Orkambi

“is not a cure but it is life altering, as it lowers admissions and reduces lung deterioration by 42%.”

She believes that Christian’s other medications will only increase unless he can access the drug. She also wrote:

“This genetic condition is awful to live with as a parent, wondering whether you will bury your child before they reach 20. I can’t begin to know how it must be for my son and other patients when they can’t breathe properly or speak without coughing or how his lungs must burn.”

She has nothing but praise for the NHS, in particular Whiston Hospital in my constituency where Christian has been treated since he was just weeks old. He is now two. In trials, Orkambi has been shown to help children aged between six and 11 to improve their oxygen uptake by up to 10%.

Orkambi would also be of immeasurable benefit to my constituent George Barton. George’s mother, Louise, wrote to me when she heard that the NHS’s provision of Orkambi was going to be debated in this place. George is eight years old and, like Christian and most other CF sufferers, was diagnosed as a young baby. CF is progressive, so George’s lungs are beginning to degenerate. Every day, he takes 30 to 40 tablets, has an hour of physio and takes two nebulised antibiotics. Louise told me that when he catches an infection, he can quickly become so seriously ill that he needs extra physiotherapy and intravenous antibiotics three times a day for a full two weeks. At times, George has to stay in Whiston Hospital, or, because he and Louise live nearby, the nurses come out and take care of him at home. In fact, when Louise first wrote to me, she was in hospital with George on a two-week stay. She wrote that although

“the damage to his lungs is becoming more serious, Orkambi can slow this down”.

George, Christian and thousands of other CF patients need that niche treatment, and there is the political will in this place to fight for them. Only about 3,000 people would benefit from the drugs. I urge the Minister to get involved, to facilitate further discussions between NHS England and Vertex, and to push for a flexible solution. Orkambi is a different type of drug that we cannot evaluate at this time. This is not only about licensing Orkambi, but the promise of those 18 drugs still to come, which Vertex will advance on to. NICE simply cannot evaluate and I urge the Minister to intervene.

Organ Donation (Deemed Consent) Bill

Marie Rimmer Excerpts

2nd reading: House of Commons
Friday 23rd February 2018 Commons Chamber

[Ms Marie Rimmer (St Helens South and Whiston) (Lab)]

I pay tribute to my hon. Friend the Member for Coventry North West (Mr Robinson) for introducing this Bill, which speaks to our common humanity. To be in the Chamber today to support it is a great honour for me. Three people die daily in the UK because of the lack of available organs for transplant, and this Bill would increase the chance of an unwell person and a life-saving organ being united.

I pay tribute to my hon. Friend the Member for Sunderland Central (Julie Elliott), who described very similar situations to those of a member of my family who was successful, in the end, in getting their transplant. She was a mother with a newly born third child. We did not know what was wrong with her. She had no energy, could not pick the other children up from school, was not eating, and was often going to the hospital. Eventually, after her husband took her to hospital, she was whisked off to Birmingham. Fortunately she got a kidney transplant while she was there, but unfortunately it was not successful, and we were told that it was highly unlikely that another suitable kidney would be found within the time when it was needed. Thankfully, we got that kidney, she lived, and three children still had their mum. The trauma that the family went through during that time was just unbelievable. We saw the care that the immediate family had to give those three children when she and her husband—my cousin—were in Birmingham. They took care of the children and did what they could. We have been the recipients of the saving of a family—a dear family.

This Bill will change individuals’ autonomy to choose what happens to their own body. Opt-out organ donation carries with it the weight of 80% public support, the support of the British Medical Association, and cross-party political support—all seven parties are represented among the Members who have sponsored the Bill. It also carries the support of past and present Prime Ministers.

I would like to talk about another case in the town that I represent. Last year, tragically, we lost a little girl aged four, Violet Grace, who was killed in an accident on her way home, with grandma, from the nursery. It was a criminal act, with a car going at 80 mph in a 30 mph zone. The parents of little Violet Grace took the brave decision to donate their four-year-old daughter’s organs. Today, we know that two lives were saved. The family tell me, and all the town, that they get great comfort from that. When her little brother asks about her, they try to explain that to him so that he can grow up with that knowledge.

The parents of Violet Grace have been joined by the widow of another person in my town, Steve Prescott, a former champion rugby league player. He had a multiple organ transplant that was successful, but unfortunately there were some other complications.

[Paula Sherriff]

Does my hon. Friend agree that although it can sometimes be a difficult conversation, these situations also bring about the opportunity for families, friends and loved ones to talk about what they want to happen after their death, including things like funeral arrangements? I knew from a very early age that when I went, I wanted to donate my organs. I still have my original organ donation card, which is over 30 years old now. Hopefully this debate will get the media attention that will encourage people to have that conversation with those they love.

[Ms Rimmer]

Yes, I do agree.

Steve Prescott’s widow, along with colleagues, friends and members of the community of St Helens, set up the Steve Prescott Foundation. She also approached the parents of Violet Grace to give comfort and support. They have set up a huge and very successful campaign in our town, urging us all to donate our organs. Steve died, unfortunately. The actual transplant—a multiple organ transplant—was a success, but it was other things that killed him. I pay tribute to the families involved, and to the parents of little Violet Grace for their bravery. This Bill would have saved them the trauma of making that decision at such an emotional time when their little girl was dying. It could save people a lot of trauma.

This is the moment to act. A move to opting out would save a predicted 500 lives a year. Done properly, with the right publicity, the right engagement and the right involvement of all communities, changing the law on organ donation should have the support of all of us. The support shown here today is really gratifying, and I pay tribute to the Daily Mirror, which has run a fantastic campaign. It has urged people sign up for donation even now, without waiting for the change.

I understand—perhaps the Minister could enlighten us on this—that the Government intend to go out to public consultation on how opt-out donation would be implemented sensitively. The proposal in the Bill to involve a person’s family in decisions, as a safeguard against any unregistered objection to donating, is an important protective measure that will reassure families who have concerns.

Only 5,000 people a year in the UK die in circumstances where they can successfully donate, while 6,500 people are currently waiting for life-saving donations. None of us ever expects, or perhaps even thinks about the possibility, that we or someone we love may need an organ from someone else to survive, but many Members have pointed out how it can suddenly happen in our own families. However, there is a gulf between the supply of organs and the urgent need for them, and it is time that we made a conscious decision to take affirmative action. The time is right—80% of the public support organ donation, but only 36% are on the register. That needs to be addressed.

In the first six months since Wales adopted the opt-out, 60 organs donated by 31 people have been transplanted. Consent had been received from 50% of those people. Those are the latest facts from Wales. An opt-out system has therefore been proven to work, even in its infancy. I urge the House to back deemed consent as a proven, popular policy.

The British Medical Association makes a point that goes to the heart of this debate. As a result of this Bill, the choice for the individual about what should happen with their own body will remain the same—to donate, or not to donate—but a change in the law means a switch of the default position, towards donation and towards saving more lives. I urge the House to support the Bill.

Oral Answers to Questions

Marie Rimmer Excerpts

Tuesday 19th December 2017 Commons Chamber

[Mr Hunt]

I would always listen to the hon. Lady on those matters, because she has huge professional experience. I do not think we do well enough for families with autism, and we are looking at what we can do better, but I have a lot of sympathy for the case the hon. Lady is making.

[Ms Marie Rimmer (St Helens South and Whiston) (Lab)]

9. What steps his Department is taking to reduce the number of hospital admissions for malnutrition.

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

Ensuring all our constituents—particularly the vulnerable and the elderly—are getting an adequate diet is critically important. That is why, for instance, we have given half a million pounds in funding to a special Age UK taskforce to reduce malnutrition among older people, and we will continue to train NHS staff so that early action can be taken.

[Ms Rimmer]

A merry Christmas to you, Mr Speaker, and to the Ministers on the Front Bench—maybe they will answer my letter soon.

In the world’s sixth largest economy, it is damning that, under this Government, we have seen a 122% increase in the overall numbers admitted to hospital with malnutrition. It is clear that more action is needed to ensure that we eradicate malnutrition in our society. The Department for Work and Pensions and the Health Department must work together so that, rather than introducing measures such as universal credit eligibility criteria, which will see at least 1 million children lose free school meals, we commit as a country to tackling this issue head on. Will the Minister use his power and influence to ensure that this issue is addressed immediately and that we see an end to this failure to axe malnutrition in the 21st century?

[Steve Brine]

Happy Christmas to St Helens as well. I agree that we need to work together. The Healthy Start programme, for which I am responsible, provides a nutritional safety net to hundreds of thousands of pregnant women and families with children under four. There is a slight increase in cases being reported in recent years. In part, that is due to much better diagnosis and detection. Some 1.1 million children get free school meals in England, and the Government are investing £26 million in breakfast clubs. Only last week, Kellogg’s was here with its breakfast club awards—an excellent innovation.

King’s College Hospital Foundation Trust

Marie Rimmer Excerpts

Tuesday 12th December 2017 Commons Chamber

[Mr Dunne]

My hon. Friend is quite right. There are financial pressures across the NHS in England. We have been very clear and very open about that. Some trusts are managing within those financial challenges and other trusts are not. That is in large part down to the rigour and leadership given to those trusts. Unfortunately, in this trust there has not been sufficient of either.

[Ms Marie Rimmer (St Helens South and Whiston) (Lab)]

Given the financial incapacity problems currently affecting the NHS, is it right or fair that individual acute trust leaders should be removed from their post when surely their perceived failures are part of wider systems issues and funding pressures?

[Mr Dunne]

The hon. Lady is right to identify pressures across the system, but it is also the case that when leaders change their position in a very short period of time and oversee a period of significant deterioration, the regulator has to take a view on whether those individuals are the right people to continue to lead that organisation. I think that that is what has happened in this case.

Oral Answers to Questions

Marie Rimmer Excerpts

Tuesday 14th November 2017 Commons Chamber

[Mr Hunt]

We are absolutely committed to that. We are spending around £1.4 billion more than we were three years ago, and there is more that we need to invest. I am pleased that my hon. Friend mentioned crisis care, because for people who believe in parity of esteem, ensuring that people can get help in a mental health crisis as quickly as they could go to A&E for a physical health crisis is one of the big gaps that we have to fill.

[Ms Marie Rimmer (St Helens South and Whiston) (Lab)]

I know that the Secretary of State will have been impressed by and enjoyed his visit to Whiston and St Helens hospitals. I am very proud of the collaboration between St Helens Council, the CCG and the hospitals, but additional resources are needed. The Secretary of State will see the good use that is made of those resources, but we cannot deliver everything that is required without that additional push of resources. Will he help us, please?

[Mr Hunt]

I recognise the picture that the hon. Lady paints. I did have an excellent visit to the hospitals, and they are doing some fantastic work on patient safety. Collaboration between the partners in the local health economy is much better than it has been, but there are financial pressures. We are going to have a million more over-75s in this country in 10 years’ time, and that is why we have committed to increasing the resources going into both the NHS and the social care system.

Mental Health Units (Use of Force) Bill

Marie Rimmer Excerpts

2nd reading: House of Commons
Friday 3rd November 2017 Commons Chamber

[Oliver Dowden]

I am not sure that I entirely agree with the hon. Gentleman. Of course there have been historical problems with the funding of mental health. I hope that Opposition Members will recognise, as we do on the Government Benches, that over the decades there has not been enough funding going into that area. On the question of the NHS, however, despite this Government inheriting the largest budget deficit in our peacetime history and an appalling fiscal situation in which we were spending £4 for every £3 we earned, we made a decision to prioritise health. Health spending has risen every year under this Government and we are committed to implementing Simon Stevens’ recommendations. He, after all, was a Labour special adviser who advised this Government, and he recommended £8 billion of additional funding. I am very pleased that we have been able to do that.

[Ms Marie Rimmer (St Helens South and Whiston) (Lab)]

rose—

[Oliver Dowden]

I would be delighted to give way to my hon. Friend on the other side of the House, if I may call her that.

[Ms Rimmer]

When public services are stretched and under-resourced, and with rising demands, it is more important than ever that we have the correct processes in place. Our public services do an exemplary job, and the Bill is not about criticising them. It is about having a regulated, transparent process so that we can minimise harm to staff and the people they care for. I have been contacted by many of my constituents on this matter. Indeed, there is widespread public concern about it. Does the hon. Gentleman agree that we should not turn this into a debate on another issue? Please let us stick to what we are here to talk about today.

[Oliver Dowden]

I was responding—