Huntington’s Disease

Debate between Patrick Grady and Hilary Benn

Wednesday 9th November 2022 Westminster Hall

[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.

[Patrick Grady (Glasgow North) (Ind)]

The right hon. Gentleman is making a powerful speech. As he is demonstrating, this debate is about raising awareness of the challenges, and I know from the constituents I have heard from that that is one of the key things that family groups would like to see happen. Even though health is a devolved matter, there is a consensus across the parties and throughout the UK that more needs to be done to ensure access to specialist services and to improve clinical research, and there are examples of collaboration, such as that between the University of Glasgow in my constituency and University College London.

[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.

European Affairs

Debate between Patrick Grady and Hilary Benn

Thursday 25th February 2016 Commons Chamber

[Hilary Benn]

I am not sure that I will bow to the hon. Gentleman’s alleged greater knowledge of the opinion of Labour organisations up and down the country on the European Union. Labour Members of the House of Commons overwhelmingly support Britain remaining in the European Union, as we shall hear in their contributions later, and in the trade union movement there is strong support for Britain remaining, for reasons that I shall come to later. The truth is that we have changed our view, and that strengthens our argument for remaining in the European Union.

The Prime Minister was never going to come back with a deal that he did not feel able to recommend because, as we know, he did not want the referendum in the first place and was forced to concede it only by the turmoil and disagreement on his Benches. The deal does contain some useful and important changes, some of which we called for. The red card, as the Leader of the Opposition reminded the House on Monday, was a commitment in our election manifesto. There is protection for the pound because we are not in the euro, and it was the last Labour Government that took the decision not to join the euro—and how wise a decision was that? We support reforming the sending of child benefit to children living in other European countries, and the establishment of the principle of fair contribution, namely that those coming to work in this country should pay in before they receive in-work benefits.

The choice that the British people now face will rest not on the terms of this renegotiation, but on something much bigger and more important: how will our economy and trading relationships, and our prospects for investment, be affected by taking a step into the unknown; how do we see ourselves as a country; and what is our place in the world and in Europe now and in the years ahead?

[Patrick Grady]

What is the Labour party’s position on whether it would be appropriate for Scotland to be taken out of the European Union against its will?

[Hilary Benn]

The Labour party’s position is to respect the decision that the Scottish people took in the referendum when they rejected independence. We are one United Kingdom, and the decision will be taken by the people of the United Kingdom. Labour Members are clear that we support Britain remaining a member of the European Union. We held that view before the renegotiation, and we hold it today. The European Union has brought us jobs, growth, investment and security, and I argue that it gives us influence in the world. Before exploring each of those benefits in turn, let me briefly address two essential arguments made by those Conservative Members who think that we should leave—namely, sovereignty and taking back control.