Motor Neurone Disease Research: Government Funding

Chris Evans Excerpts

Tuesday 13th December 2022 Westminster Hall

[The Minister of State, Department of Health and Social Care (Helen Whately)]

It is a pleasure to serve under your chairmanship, Mr Mundell. I begin by thanking the hon. Member for Kingston upon Hull East (Karl Turner) for securing this debate. I too pay tribute to Doddie Weir, an incredible man who sadly passed away at the end of November. My thoughts are with his wife Kathy, and their sons, Hamish, Angus and Ben.

I had the good fortune to meet Doddie during an online roundtable—online because it was during the pandemic—and I was inspired by his campaign for a brighter future for people living with MND. His charity, the My Name’5 Doddie Foundation, works tirelessly to raise funds for research and provide grants to people living with this cruel condition.

During the pandemic, and again since, I also met with my Mid-Kent MNDA branch as a constituency MP. Those meetings are vivid in my mind. The first call I had with them had literally everybody on the call in tears, as we talked about the experiences of those suffering with MND and their carers—usually family members—and how they were seeing their loved ones losing a bit of themselves day by day to MND. It is such a cruel disease, as the hon. Gentleman said. I am thankful to him and to several other Members of Parliament who have campaigned for research funding and actively lobbied me and other Ministers on that point.

[Chris Evans (Islwyn) (Lab/Co-op)]

I refer Members to my entry in the Register of Members’ Financial Interests, and I am a biographer of Don Revie. This is an important debate, because Don, who played for Hull City during his playing career, passed away from motor neurone disease in 1989. Like Doddie Weir and Rob Burrow, he played sport at a high level. If the Government are going to invest in research, will they look at the fact that sportsmen seem to be more likely than the rest of the population to develop motor neurone disease?

Secondly, I urge the Minister to tell GPs to ensure that people are tested for motor neurone disease early in their journey, because the problem is that it is one of the last things people test for. In the case of Don, he believed that the pain in his back was caused by slipped discs—tragically, it was motor neurone disease. I ask the Minister to look into those two asks.

[Helen Whately]

The hon. Member makes two really important points. As he says, several prominent sportsmen who have been effective campaigners have sadly been affected by the disease, and there is a potential relationship with head injuries. He also made a point about the challenge of diagnosis, which I will take away.

The hon. Member for Kingston upon Hull East rightly talked about the tenacity of campaigners such as Rob Burrow and how effective their visible campaigning has been at raising awareness of MND. The disease affects a significant number of people, with around 5,000 suffering from it right now. Sadly, we know that people do not live very long with MND, so a really significant number of people across the country are being affected over time. It is incredibly cruel for the individuals who suffer.

I heard the request of the hon. Member for Kingston upon Hull East for a meeting, and I will come to some of the plans to address his calls in a moment. As I said, MND has a huge impact on those who have been diagnosed, and it is devastating for them and their families. We have made real progress in research, but we are yet to learn why motor neurones die off. There is still no cure for the disease and only one drug is licensed in the UK to treat MND, which is why the Government committed back in November 2021 to make at least £50 million available for MND research over the next five years.

Before I go into more about research, I want to say something about how we are supporting people living with MND, which is a degenerative condition—often rapidly so—that requires complex and anticipatory care. For that reason, the majority of services for people with MND are specialised and commissioned nationally in the 25 neurological treatment centres across England. In the absence of a cure, we want to make sure that people with MND have access to the best health and care support available to meet their complex needs. It is really important for people suffering from MND and their carers to have specialised and targeted support, including devices to help people with MND to be able to continue to communicate effectively for as long as possible, as well as other types of care.

Since November 2021, we have invested £790 million in the National Institute for Health and Care Research biomedical research centres, which bring together experts to translate scientific breakthroughs into treatments for patients. At the Sheffield centre, researchers have already pioneered evidence-based interventions to manage the symptoms of MND. In September, the Sheffield researchers published promising clinical trial results for the drug tofersen. Professor Dame Pamela Shaw, the director of the NIHR Sheffield BRC, said:

“I have conducted more than 25 MND clinical trials and the tofersen trial is the first trial in which patients have reported an improvement in their motor function.”

I want to emphasise that because, until now, it has been very hard to be optimistic about developing a cure for MND or even effective treatment. The trial is, in fact, grounds for optimism against this cruel disease.

In June, the Government and charity partners invested in a £4.25 million collaborative partnership on MND, which includes LifeArc, the MND Association, the My Name’5 Doddie Foundation and MND Scotland. The Government are supporting groundbreaking research undertaken by the UK Dementia Research Institute. Seven of its 50 research programmes are dedicated specifically to MND, with world experts undertaking discovery science, translational and clinical research to drive medical progress.

There has already been work going on to invest in MND research, but I heard the impatience of the hon. Member for Kingston upon Hull East and have heard from other hon. Members. Indeed, my hon. Friend the Member for Northampton South (Andrew Lewer), who is here today, has also lobbied me and other Ministers on the desire for greater pace and so that money goes towards research quicker and then translates more quickly into treatments.

To that point, yesterday, we announced at the Department of Health and Social Care, together with the Secretary of State for BEIS, how we will deliver the full £50 million research commitment, which will build on our existing investments and successes to more rapidly fund MND research. In that regard, £30 million of Government funding will be invested immediately through specialist research centres and partnerships with leading researchers. That will include £12.5 million to the UK Dementia Research Institute to support groundbreaking research specifically into MND, a further £8 million investment into early-phase clinical research for MND via the NIHR biomedical research centres and £6 million for a translational accelerator that connects the DRI capabilities with those of the Francis Crick Institute, the Laboratory of Molecular Biology and the new MND collaborative partnership. We are investing a further £2 million in the MND collaborative partnership, which will specifically focus on data for MND research.

Childhood Cancers: Research

Chris Evans Excerpts

Monday 7th December 2020 Westminster Hall

[Chris Evans (Islwyn) (Lab/Co-op)]

I thank my hon. Friend the Member for Gower (Tonia Antoniazzi), a fellow member of the Petitions Committee, for introducing the debate. There is no greater champion of families affected by cancer, and I thank her for all the hard work that she does for them, week in, week out. In the short time available, I will tell the story of Izzy Withers, a constituent of mine who tragically passed away last year due to childhood cancer. Her mother Tracey shared their experience in the hope that it would highlight the desperate need in this country for more funding for childhood cancer treatment.

In August 2018, 16-year-old Izzy fell ill, and in September that year she received the devastating news that she had DIPG and a stage 4 brain tumour. DIPG is a highly malignant childhood brain cancer that disables the nervous system, and the prognosis is grim—fewer than 10% of children diagnosed survive longer than 18 months. That meant that Izzy was effectively handed a death sentence. DIPG is very resistant to chemotherapy; it is extremely difficult to treat. Tracey Withers described the tumour as like sand in grass. The treatment of Izzy, like that of Karen Armstrong, Neil Armstrong’s daughter, therefore consisted of radiotherapy, which in turn destroyed their healthy brain tissue. The radiotherapy affected Izzy’s ability to walk and use the left side of her body. She eventually lost all capacity to walk. After seven weeks at the Royal Gwent Hospital and two weeks at the Teenage Cancer Trust in Cardiff, Izzy and her mother spent 13 weeks living at Tŷ Hafan hospice. Tracey described Izzy’s illness and the effects of the treatment as a bit like locked-in syndrome. Her body shut down and she lost the ability to walk and move, and eventually she struggled to swallow. Children with DIPG die a protracted, painful and horrendous death. That is why more funding is needed for research to ensure that, in the future, children diagnosed with childhood cancers with a low survival rate and their families have more options.

For children such as Izzy, care is inadequate, and other, more practical factors increased the problems that Izzy and Tracey came up against in trying to get access to treatment. As Izzy was 16, she was not classed as a paediatric patient or an adult. That put her in administrative limbo. Hospitals were unaware of where she should be treated, who should treat her and who would foot the bill. That left Tracey with the extra burden of chasing hospitals for treatment and looking for counselling and other support. Tracey was often the one who had to find out where Izzy could receive care and what sort of care she could receive. That was yet another stress that she should not have had to deal with.

It goes without saying that caring for a child with cancer is phenomenally tough. Those parents care for their children emotionally and practically while trying to come to terms with the intricacies of their illnesses, all the while having to process that themselves and realising that they face what every parent dreads more than anything: outliving their own children. They should not be faced with added stresses and tasks because their children fall into the limbo between paediatric and adult care. That was also frustrating for the senior clinicians in charge of Izzy’s case, who felt that they were going round in circles over who would treat her.

Tracey received invaluable support from the Teenage Cancer Trust, CLIC Sargent and the Tŷ Hafan hospice. Those charities do incredible work for children with cancer, helping children and their families to navigate the medical and emotional sides of their illnesses. Without those charities, families such as Izzy’s would be completely lost. That is a failure on the part of the state to provide adequate care and funding for children with cancer. Izzy was given a dignified death thanks to the Tŷ Hafan hospice, which relies entirely on charity.

I say this to the Minister: three children died last week from DIPG alone. That is three families who now face a Christmas of grief. We must do more. The ring-fenced funding is not enough for a country that prides itself on scientific research. We could be leading the way, but we have failed to do enough. Some things go beyond politics, and this should be one of them. Few of us can imagine what Izzy’s family have gone through, but we must do more to stop others experiencing the same.

I want to end by thanking Izzy’s mother, Tracey, for allowing me to share her story, for her bravery and, above all, for her desire to ensure that no other family goes through what hers have been through. She said that she is praying that this is the start of a change that gives hope to families such as hers. I hope the Government listen and bring about real change.