Motor Neurone Disease

Andrew Lewer Excerpts

Thursday 20th October 2022 Commons Chamber

[Andrew Lewer (Northampton South) (Con)]

I beg to move,

That this House has considered the matter of investing in the future of Motor Neurone Disease.

After much delay due to circumstances out of our hands, I am grateful that we have the opportunity to debate this vital issue. I thank the Backbench Business Committee for its efforts in finding us time to speak about it today and the hon. Member for Newport East (Jessica Morden) for her support. Time is of the essence for those affected by motor neurone disease, but a time of calm seems not to be fated for the debate, having endured rail strikes at the first attempt and our national loss of Her Majesty at the second attempt. I had intended to comment that at least today was a day of calm, but that does not appear to apply.

I do not usually speak in the Chamber as filler material for procedural purposes. I speak only when I think that I have something to contribute, and that is very much the case today. Back in 2017 when I was selected to stand in my constituency of Northampton South after my time as an MEP, my first meeting was during a visit to the Motor Neurone Disease Association headquarters, which is in my constituency. I had heard of motor neurone disease, of course, but I had no idea that it would become so central to my time in this place and an issue that I would hold so close to my heart. As soon as I joined Parliament, I became a member of the all-party parliamentary group on motor neurone disease. I became a vice chair, and then chair, following Madeline Moon, a former colleague and a formidable campaigner on this topic.

I am sure that hon. Members know what comes with a diagnosis of motor neurone disease. It is a fast-acting and rapidly progressing neurological disease affecting nerves that control muscles. It leads to a rapid deterioration of the body, leaving many sufferers unable to speak. Ultimately, it results in death. Sadly, at present there is no cure. About a third of MND sufferers pass away within a year of diagnosis, and more than half within two years. It affects up to 5,000 people at any one time in the UK. However, I stress that that number would be much greater were it not for the fast-acting nature of the disease. It is therefore in a critical sense not a rare disease.

The debate is about not just stands and numbers but people, many of whom I have worked with and been inspired by. All hon. Members in the Chamber as well as those watching in the Gallery and at home will know about the campaigning of rugby league legend Rob Burrow and his family, as well as his teammate Kevin Sinfield, who have not only brought the Government’s attention to MND but raised its profile. Colleagues will know about the powerful BBC documentary that Rob produced.

Alongside Rob, Doddie Weir and Stephen Darby have shown the same tenacity and dedication to raising the profile of MND, as well as Lee Millard, David Setters and Chris Johnson, who have worked closely with the all-party parliamentary group. They have attended several of my meetings in Parliament and met Ministers as well. From my own constituency, Emma Moss, a mother and former deputy headteacher diagnosed with MND, has just received a Points of Light award for her campaigning. I am in no doubt that her family, especially her daughter, are immensely proud of all she has achieved in the face of adversity. I would like to also mention Ganesh and Rachel Thayanithy, whom I spoke with recently following from Rachel’s diagnosis. They have also shown that inspirational quality.

There are a lot of people I could mention who have done so much to highlight MND and support those with it, but I want to mention my right hon. Friend the Member for Bromsgrove (Sajid Javid) whose help was crucial as Secretary of State for Health, one of the busiest roles in Government. When I arranged for a group of MND sufferers and carers to come—this remains one of my most treasured memories—and proceed through the streets to No. 10 to demand action, my right hon. Friend came to see us. He did not just come and say hello; he stayed and spoke to virtually everyone. He had a lengthy discussion with the MND teams and with Professor Al-Chalabi in particular. Outside the bubble, and indeed even inside it, it is not always possible to know who really treats people well and with respect and gives them a fair hearing. I have certainly had some experiences of that myself here, but none of that applies to my right hon. Friend the Member for Bromsgrove, so let the record show that he really is one of the good guys.

In recent years, there has been ever-growing interest from the research community and the pharmaceutical industry in MND. A real surge in studies and trials have offered sufferers and their families some renewed hope for treatment and a cure. Some of those have included the treatment of spinal muscular atrophy, an inherited degenerative condition that targets motor neurones that predominantly occurs in infants and children. The ATLAS trial is actively recruiting SOD1 gene carriers and aims to establish a blood test which can give an early warning that physical disease will manifest within the coming six to 12 months. Participants can then take part in trials of the Tofersen treatment, which initial evidence suggests can substantially slow progression of severe disease, thereby boosting respiratory function, muscle strength and quality of life.

Essential to enabling that research is, of course, funding. After long dedicated campaigning, the United to End MND coalition achieved a huge victory in November 2021 with a commitment from the Government to invest £50 million over the next five years into targeted MND research, involving the creation of an MND research institute to accelerate the quest for treatments. What a rollercoaster that was from there not being any announcement in the Budget—down—to a special announcement a week later—up—that £50 million was forthcoming, made by my right hon. Friend the Member for Bromsgrove. The Government further confirmed in September 2022 that the funding would be ringfenced, which provided confidence, and further victories have followed. A group of charities and Government research organisations have awarded £4.25 million to MND experts at six UK universities to kick-start collaborative moves to find solutions to problems hindering MND research, such as better testing, data collection, wider trial participation and wider access to the only current life-extending treatment for MND, with the aim of making real progress and making it fully treatable within 10 years.

There is, however, so much more to do. The initial ambition of the bid was that the virtual research institute would free up researchers from having to engage with multiple application systems and assessment exercises marked in Whitehall. That detracts from the time researchers can spend on pure research and progressing treatments. I therefore suggest to Ministers that this would be a perfect opportunity to put into practice the new, new Government’s emphasis on cutting red tape. Researchers, desperate to get on, are presenting a way to make better use of public money for the benefit of the cause. Please be more imaginative about tackling process. Please do not let officials say that we have always done it that way. I am very pleased to go and see the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Harborough (Neil O’Brien) to make progress on this issue. I believe that if anyone can cut through this, given his skills and experience, it is him.

Another key area on which progress is needed is access to genetic testing. That is particularly critical in the case of the Tofersen treatment, because it is a gene-based therapy targeting an inherited form of MND caused by mutations in the SOD1 gene. Currently, genetic testing for MND is typically restricted to patients with family members also affected by the disease and patients who do not have a family history but have symptoms starting early in life. According to the Institute of Psychiatry, Psychology and Neuroscience at King’s College London, that state of affairs potentially overlooks hundreds of people, including many over-40s, who have a genetic form of the disease and for whom those new treatments, which are gene-based, could make a real difference. However, there are broader benefits in widening access to genetic testing, too, because it enables people to have an understanding and therefore earlier access to key advice and counselling, regardless of their age.

The confirmation of an MND diagnosis is devastating for anyone to hear. A survey by the Neurological Alliance of 8,500 people living with such conditions found that 40% of those surveyed did not feel that they had adequate access to mental health services. That needs to change. Many said that they had waited a year from their first symptoms after seeing their GP to see a neurological specialist. That also needs to change— notwithstanding the backlogs from the pandemic, and so on—and not only for MND, but for the majority of neurological conditions. In the light of that, I hope that the Government will listen to growing calls from the MND community for the Government to invest in and establish a neuro taskforce to drive forward improvements in neurology services and ensure that the impacts of the pandemic are both understood and addressed for people seeking help for living with MND.

Many sufferers require around-the-clock care, which often falls to family members and loved ones. Although many will give the care that their loved one deserves, that is a difficult and demanding experience. The MNDA carried out a survey and found that 33% of those surveyed spent more than 100 hours caring for their loved one and 45% of those received no benefits at all. That heartbreaking situation should not happen, with even those who receive the carer’s allowance struggling to support somebody, having had to give up a full-time job to care for an MND sufferer—not to mention the problems with disabled adaptations. The MNDA is therefore calling on the Government to publish a recovery and respite plan for unpaid carers, which would focus on packages for carers, including mental health, financial and other measures.

As we move into the winter and spring, there are justified concerns from the MND community about the non-inclusion of MND carers in the winter and spring covid booster vaccination programme. I would be grateful if the Minister considered expanding access to MND carers.

MND is a disease that affects people from all communities. The nature of the disease requires specifically trained carers, as that not only ameliorates the condition but helps to prolong sufferers’ independence and autonomy, maintaining their wellbeing and dignity as the disease progresses. Given those specific needs, it is conspicuous that only 26% of people with MND received that sort of care.

Social care has been a matter of much discussion over the past few years and is one that I have spoken about many times in the House. As a former county council leader and a member of the Levelling Up, Housing and Communities Committee, I can say that the situation for sufferers of MND is a reflection of wider social care failings. The complexity of taking care of MND sufferers should not limit their access to services because agencies are reluctant or unable to commit time or money to that service. There is a need for specific support, particularly for respiration, but people with MND try to live their lives as richly as possible and the failings of social care must not hinder that.

Limited specialised care will otherwise continue to contribute to unnecessary danger. Inadequate understanding on how to use equipment, for instance, has left patients leaving hospital with incorrectly attached tracheostomy tubes, resulting in individuals having entirely preventable critical emergency readmissions. In the best-case scenario, the lack of access to skilled social care puts the burden on friends and families; otherwise, it leaves people going prematurely to hospital or to a hospice. The Department of Health and Social Care, which provides 20% of the £50 million that I referred to, clearly needs to recognise the relevance of social care to the conversation. We ask the Government to invest wisely to improve the quality of and access to social care. Those who live with MND need skilled and trained staff.

We are talking about significant sums being invested, but it imperative that the closer-to-home costs of MND are also addressed. Given how aware of finances we are in the current cost of living crisis, it does not take a very significant stretch of the imagination to understand that those with MND are all the more vulnerable to rising energy costs. Indeed, the household costs are double for people with MND, piling on top of already rising costs. The bills that MND sufferers face make very sombre viewing.

It is no surprise that four out of five people with MND consider the impact of the disease to be very negative. Their costs only increase over time as the disease progresses and they rely further on energy-consuming equipment. Inevitably, they spend more time at home fatigued by the disease, which has an energy impact. For those with MND, who have more to deal with than most of us can imagine, that financial uncertainty should be one less thing to have to think about.

I therefore hope that the Government will try to ensure that disability benefits are uprated in line with inflation and that those who live with MND and other disabling conditions receive continuing support with energy costs after the proposed end to the cap scheme in April. I also hope that the Government will increase the emergency support package that they announced in May to ensure that the most vulnerable are supported through the coming winter.

There are a huge array of issues to tackle with MND, simply because of the severity of the disease, but I hope that I have provided a run-through of the issues that need to be considered, especially by the Government. I look forward to colleagues’ speeches.

[Several hon. Members rose—]

--- Later in debate ---

[Andrew Lewer]

I thank all hon. Members who have spoken in this debate—I will not name them because I do not want to miss anyone—for their powerful speeches and for being here. It illustrates the importance of the work of the all-party parliamentary group, which provides an opportunity to work together and put political differences to one side for the benefit of our constituents. We know about dashing around for APPGs and emailing people to get them to turn up, but I never have to do that for the APPG on motor neurone disease; we always pack the room when we have a meeting.

The Minister has listened closely to the debate and the contributions of hon. Members, including the Front Benchers. His comments have been very encouraging, especially about getting to grips with red tape. He also made reference to the Francis Crick Institute—Francis Crick was, of course, a Northampton man.

“Moonshot” is the word used for MND research, but the genetic breakthroughs that I spoke about earlier mean that we now know where the moon is and we have a good idea how to get there. That £50 million can help us to achieve a cure for MND, but we need more haste in getting launched and onwards to the dream. What we have heard today has been really encouraging in that regard.

I thank all those at the MND Association for all their hard work and support over the years for me, and for the contribution that other key charities, such as MND Scotland and My Name’5 Doddie Foundation, make towards this work. That led to United to End MND, which has really punched through, as I described in my speech earlier.

This debate has focused on those who suffer from MND and their tremendous courage in facing something that none of us wants to face. We can hardly imagine the severity and experience of those who go through it and those who care for them and love them. I hope that we have demonstrated today that we take those suffering seriously and we take the inspiration that they provide us with seriously. It is a tribute to those who care for them that we are all so determined to help to find a way forward for people so that they do not have to suffer in that way in future.

Question put and agreed to.

Resolved,

That this House has considered the matter of investing in the future of Motor Neurone Disease.