Huntington’s Disease

Liz Kendall Excerpts

Wednesday 9th November 2022 Westminster Hall

[Liz Kendall (Leicester West) (Lab)]

It is a pleasure to serve with you as Chair, Mr Robertson. I really congratulate my right hon. Friend the Member for Leeds Central (Hilary Benn) on securing this debate. He spoke with great authority and passion, including about the person he knows. It means a lot that this place can reflect how people really feel when they have to live with this terrible disorder and the impact it has on their families.

As we have heard, it is a totally life-changing disorder, impacting on not just the person’s health but, I would argue, everything that makes them human, which is their relationships with the people they love most. We are the sum total of our experiences and memories, and our relationships with people. When someone we love loses those memories and becomes a different person, it has a deep effect on us, too. As Members have already said, it is about not just the 8,000 people who are living with this diagnosis in the UK—including about 100 in Leicester and Leicestershire, which is the part of the country that I represent—but their 32,000 children. Growing up knowing that the disease may end up affecting them too is a terrible burden.

The support that should be available needs to be very broad, and I know from my experience of working in health and care over the last 30 years that that is one of the key areas where we fall down. When so many different types of services and support are needed, bringing those all together for a very specialist and rare condition is one of the biggest challenges we face in the health and care system. As we begin to know more about diseases, particularly through genetic developments, we are going to see more and more of this in future. If we can get it right for Huntington’s, we know that we may be able to get it right for other conditions.

There are three areas that I want to talk about today. The first is obviously the critical issue of access to mental health services. Provision of comprehensive, specialist psychological care is an essential component of treating and dealing with Huntington’s disease, yet we know that access to that specialist care is limited and varies significantly across the country. Despite clear commitments from statutory bodies over many years—over the past decade, at least—the situation has improved little for families.

Research from the Huntington’s Disease Association shows that a quarter of people living with the disease are unable to access psychologists, psychiatrists and other counselling when required. I was really struck when the hon. Member for Strangford (Jim Shannon) said that there are only two specialist nurses for 2 million people in Northern Ireland. That simply is not good enough. Specialist nurses provide unbelievable support to families, and have the ability, knowledge and time to talk things through, so that has to change. That is part of a wider picture of significant staff shortages in mental health. Currently, one in seven mental health doctor posts and one in five mental health nursing posts are vacant. We simply cannot provide the access or standards of care that we need, including for people with Huntington’s disease, unless we tackle that problem.

As part of Labour’s plan for mental health, we would recruit 8,500 more mental health professionals, funded by closing tax loopholes for private equity fund managers and removing the VAT exemption from private schools. That would give us the extra staff we need across the board, including for people suffering from Huntington’s disease and their families. People often suffer from anxiety and depression after a diagnosis. My right hon. Friend the Member for Leeds Central talked about the impact on children and young people, who experience anxiety, depression and self-harm as a result of what they fear may lie ahead of them. We must focus on that issue.

Labour’s plan for mental health will also help to improve the quality of services, including by broadening the range of services available to those with severe mental illness. They will also require talking therapies and other interventions to help them live as well as they can as the disorder progresses. I hope the Minister will set out in detail what the Government will do to increase the mental health workforce, both in community services and in the specialist services that people with severe conditions require.

Staff shortages in mental health are a critical issue, but there are wider barriers. Many people with Huntington’s disease say that they struggle to get a specialist referral in the first place because there is a lack of awareness of the issue. My mental health trust has talked about the issues we have faced across county borders. We are developing specialist services for Huntington’s disease, but neighbouring counties are not, so it is challenging to get cross-county referrals.

The real issue is the problem of co-ordinating the care pathway for people with Huntington’s disease. People and families feel that they are in a constant battle with support services, and have to tell their story time and time again. The last thing that people faced with this terrible situation want is to battle the services.

The charities working in this area and my right hon. Friend have called for the development of NICE guidelines to ensure greater consistency in treatment and support for people with this condition. There is a very strong case for that, not simply because NICE guidelines exist for people with other conditions, but because unless something is set out for rare conditions, it is a real challenge to improve the quality of care and support. I ask the Minister to engage further on this issue with my right hon. Friend, the Huntington’s Disease Association and NICE, to see what progress can be made.

Families do not just need help from the NHS; they need help from social care too. The average survival time after a diagnosis of Huntington’s disease is between 15 and 20 years. During that time, the condition targets nerve cells in the brain, causing motor, cognitive and psychiatric symptoms that get progressively worse. The person living with the disease needs various sorts of care, including from the social care sector, but too often the burden is being shouldered by families in an unsustainable way. Many families say that, until the onset of the symptoms, they do not get the support they need. Again, there is a huge number of vacancies in social care—160,000, which is the highest it has ever been. Families have no choice other than to take on more of that burden themselves, which has a huge impact on their jobs, relationships and careers.

At the heart of Labour’s plan for social care is a new deal for care workers. It would allow us to recruit and retain the staff we need by ensuring fair pay and terms and conditions, and by improving training and career progression. We simply cannot give the families of people living with Huntington’s the support they need unless we have a properly staffed care workforce. We would also have a new partnership with families, so that they get proper information, advice and breaks, and so that we join up services and people do not have to battle their way around the system.

We cannot improve the quality of care and support for people with rare conditions such as Huntington’s unless families are equal partners. That needs to be at the heart of any future development, and particularly the NICE guidelines. The people who know how best to join up care and support are the families, because they do not see their loved one’s needs in separate departmental service silos. They do not think, “They have a social care need over here, and a health need over there”—they see their loved one as one person. We need families to help develop the NICE guidelines.

Last but by no means least, we need to touch on the financial strain facing those with Huntington’s disease. People with Huntington’s and their families tend to have lower incomes. That is often because the person has to give up work, as do their family members in order to care for them, but lower than average incomes are compounded by higher than average costs. Because of the involuntary movements associated with the condition, people with Huntington’s need higher-calorie diets, which means increased food bills. They also have to stay at home, which means higher energy costs, and extra washing is required, too.

The Huntington’s Disease Association recently did a survey looking at cost of living issues. It found that many people were cutting back on the absolute basics and were really worried about the increasing risk of debt and homelessness. Indeed, it wrote to the Chancellor about this issue on 26 October. Could the Minister encourage the Chancellor to reply to that letter? This is a pressing and immediate issue that people are facing. Members will know that Labour has called for a windfall tax on gas and oil profits in order to support struggling families during the cost of living crisis, and I wonder whether the Government will now agree to that.

There is hope for the future. As my right hon. Friend the Member for Leeds Central said, there have been developments on diseases that we thought nothing could ever be done about. There is hope for scientific developments, especially in genetic technologies, but there are also things we can do in the here and now to better support families, such as improving the mental health and social care workforce, and dealing with the cost of living pressures that families face. I hope that the Minister will address those points.