Huntington’s Disease

Philip Dunne Excerpts

Wednesday 9th November 2022 Westminster Hall

[Hilary Benn]

I say to my hon. Friend, which he is on this occasion, that I am grateful for his attendance today and I agree with every point he has made. I will discuss research towards the end of my speech.

Young people who grow up in the shadow of Huntington’s face daunting choices about genetic testing and whether to start a family. Should a young person tell a new partner about the condition? When should they tell their partner? How will the partner react? Many young people care for relatives while worrying that they will get the disease themselves. A Huntington’s family member put it like this:

“Huntington’s is a thief that slowly steals your body, energy, health, family, friends and the person you used to be.”

Last year, a community survey undertaken as part of the Huntington’s Disease Alliance UK and Ireland Family Matters campaign—that is quite a title—found that 98% of carers felt that Huntington’s had negatively affected their loved one’s emotional wellbeing; 88% said the disease had changed their relationship forever; and 70% went so far as to say that the impact had been either extremely difficult or life ruining, saying, “It has ruined our lives.”

The disease has a huge effect on family finances and on the ability to work of the person and those who care for them. Sufferers eventually cannot hold down a job, their carer may have to give up their job to look after them, and all the while the bills mount. Income support and financial assistance to meet the cost of equipment and home adaptations is available, but it is limited and difficult to access. That is particularly the case for someone with Huntington’s who does not yet display physical symptoms, and is therefore incorrectly believed not to be symptomatic and not entitled to financial support. That means that people who display only the less visible symptoms—say, mental health or cognitive ones—cannot get the help despite their debilitating effect. That cannot be right.

[Philip Dunne (Ludlow) (Con)]

I add my congratulations from the Government side to the right hon. Gentleman on securing this debate and raising awareness of this appalling condition, and on his very powerful speech. He is talking about the support services available to the families and victims of this disease; because there is no national guidance, that is now a matter for the individual integrated care boards, which have replaced clinical commissioning groups. Does he agree that one of the outcomes of his securing this debate might be that the Minister commits to at least consider encouraging the National Institute for Health and Care Excellence to establish national guidelines to ensure consistency of support throughout the country?

[Hilary Benn]

I am extremely grateful to the right hon. Gentleman for making that point; he anticipates my argument exactly. I and many other people think that is exactly what ought to happen for the very reasons he set out.

What needs to be done and how can the Minister help? That is why we are here today. First, we have to raise awareness of the impact of the disease and the suffering of those with it and their families. By acknowledging what it is and talking about it, we can help families who all too often choose the path of silence and shame because they do not want to talk about it to anybody else. We should say with one voice that no one should have to carry this burden alone.

Secondly, families need more support, including financial help and better care. There is some wonderful expertise in hospitals and a number of centres of excellence throughout the United Kingdom, including the Huntington’s Disease Centre at University College London, but outside those specialist centres it is a different story. At the moment, it is hit or miss; it was put to me recently that it is more miss than hit in areas without specialist support. Social care is of course vital to help those with Huntington’s to manage day-to-day life. The cost of private care for someone with Huntington’s can amount to thousands of pounds a week—who can afford that? Some councils provide specialist care homes, but not all.

Let us begin by having a care co-ordinator—a Huntington’s disease specialist—in every community to help to identify and keep in regular contact with Huntington’s families in their area and guide them through the range of support that they need to meet their requirements. They would also help to improve understanding of the disease on the part of other health and social care professionals. It is hugely complex, and how it presents itself and the sheer scale of support that sufferers require are much misunderstood.