Huntington’s Disease

Debate between Hilary Benn and Liz Saville Roberts

Wednesday 9th November 2022 Westminster Hall

[Hilary Benn (Leeds Central) (Lab)]

I beg to move,

That this House has considered Huntington’s disease.

It is a great pleasure to serve under your chairmanship, Mr Robertson, and to see the Minister in her place. I thank all the Huntington’s disease organisations in England, Scotland, Wales and Northern Ireland for the vital work they do and for the help and expertise they have given me in preparing for this debate. Back in May I tabled early-day motion 72 on Huntington’s, and I am really grateful for the support it received from Members on both sides of the House. My colleague Jackie Baillie tabled a similar motion in the Scottish Parliament, which I am told secured record support. I should also declare that my interest in this subject is the direct result of knowing someone who has the disease.

Huntington’s is a rare genetic neurodegenerative disorder that, over time, basically stops the brain working properly. It affects some 8,000 people in the UK, but around 32,000 people are living at risk of developing it for the simple but deadly reason that Huntington’s can be passed from generation to generation. This means that a diagnosis of Huntington’s does not just affect the person who has it; it also affects their children, who have a one in two chance of carrying the gene. There is a predictive genetic test to find out whether someone has the faulty gene that causes the disease, but I am told that on learning of, say, their parent’s diagnosis, the vast majority of people do not want to know and prefer to travel in hope. For all those reasons, it is a devastating diagnosis, because there is no cure, and there is only limited palliative care.

Imagine for a moment the questions that go through somebody’s mind when a loved one gets the diagnosis. How long has my spouse or my parent got? What is going to happen when they can no longer look after themselves? Which of our children has it? Should we tell the rest of the family? Will my loved one’s personality change, so that they end up shouting at me or even assaulting me? In many ways that is probably the most difficult thing to cope with, because we are losing the person we love not just physically but emotionally. This horrible disease makes them no longer the person they once were, and there is nothing—absolutely nothing—we can do about it.

It is very hard fully to convey what this means, so let me quote a letter I have received from someone who writes of

“being forced to witness the agonisingly slow degeneration of someone you have known and loved for nearly forty years, and how hard it is to keep remembering the person that they once were. That man—a loving, supportive spouse and utterly devoted father—was erudite, kind, attentive, with a wickedly dry sense of humour. He bears little resemblance to the unsteady figure with unclear speech, alternating between bouts of aggression, anxiety and apathy, with whom I now share my home.”

That is what sufferers and their families have to live with.

The symptoms of Huntington’s are many, and the list I am about to give is by no means exhaustive. They include early onset dementia; difficulty concentrating; lapses of memory; cognitive decline; depression; anxiety; obsessive disorders; psychosis; stumbling and clumsiness; involuntary jerking or fidgety movements of the limbs and body; difficulty moving; mood swings; personality changes; irritability; apathy; disinhibition; problems swallowing, speaking and breathing; fatigue; loss of weight; incontinence; and sexual dysfunction. In the later stages, full-time nursing care is needed.

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

I am immensely grateful to the right hon. Gentleman for giving way, and I congratulate him on securing the debate. He is speaking very movingly.

One thing that has been emphasised to me is how important it is to remember the carers—particularly the family carers—affected by this condition. I am sure the right hon. Gentleman will join me in impressing upon the Minister the importance to families who are going through this experience of granting the facility of respite care for family carers at a time of real carer shortages.

[Hilary Benn]

I am profoundly grateful to my right hon. Friend for attending this debate, and I agree completely with what she has said. I will come to the question of the needs both of people who have the disease and of those who care for them.

In short, those affected will lose the ability to walk, talk, eat, drink, make rational decisions and care for themselves. Partners and children are turned into carers, and children know that they themselves have a 50% chance of going through what they see unfolding in front of their eyes—a prospect that often results in self-harm, low esteem, low confidence, low mood, anxiety or depression.

Professionals, and indeed families, can sometimes mistake Huntington’s for other conditions such as Parkinson’s or Alzheimer’s. That is especially true when the family has no idea that Huntington’s exists in their family, and those living with it face a great deal of stigma and discrimination. It is not uncommon for a loved one to be wrongly accused of being drunk or on drugs due to their symptoms. The symptoms can start at an early age, and about 5% to 10% of sufferers experience them before the age of 20, although they usually appear between the ages of 30 and 50, and some 10% of sufferers develop them after the age of 60. The average survival time from first onset of symptoms is about 15 to 20 years.

Needless to say, people living with Huntington’s and their families face extraordinary challenges in their lives because the condition affects everyone who comes into contact with it: those experiencing symptoms and their families, those who have tested positive but do not yet have symptoms, and people at risk of developing it. Even those who test negative can suffer from survivor guilt, and in some cases might be ostracised by their families.