Huntington’s Disease

Steven Bonnar Excerpts

Wednesday 9th November 2022 Westminster Hall

[Steven Bonnar (Coatbridge, Chryston and Bellshill) (SNP)]

It is a pleasure to see you in the Chair today, Mr Robertson. I thank the right hon. Member for Leeds Central (Hilary Benn) for securing this debate on what is an increasingly prevalent feature across our communities. He made a powerful and heartfelt contribution, and I thank him for it. I also place on record my full support for his early-day motion 72, whose aims echo those of a motion already passed in Holyrood by 98% of Members of the Scottish Parliament—we would like that sort of unity in this place—which aims to expand the range of specialist services available to all those with Huntington’s disease.

This has been an excellent debate, with powerful and thoughtful contributions. The hon. Member for Strangford (Jim Shannon) spoke of the long-term impact on the life of a young person with the gene and how it can affect their whole life, marriage, opportunities, finances and all that goes with them as they go on their journey through this world.

My hon. Friend the Member for Paisley and Renfrewshire North (Gavin Newlands) spoke of Scotland’s national care framework for Huntington’s, and its five principles. For obvious reasons, we are keen to champion that excellent body of work, and I hope that the Minister will take note of it. I thank all Members who have contributed to this morning’s excellent debate.

Huntington’s disease is an inherited condition. It is a progressive disease that slowly leads to the loss of the ability to walk, talk, eat, drink and make decisions of care for oneself, as well as the many other issues outlined by the right hon. Member for Leeds Central. It causes the progressive breakdown of nerve cells in the brain. That gets gradually worse over time and is ultimately fatal after between 10 and 25 years.

We have heard that each child of a person with the Huntington’s gene has a 50% chance of inheriting this awful condition. Affected children can likewise pass the gene to their own offspring.

According to the Scottish Huntington’s Association:

“Around 1 in 5000 people in Scotland has Huntington’s disease”,

which means that about 1,100 people are living in Scotland with Huntington’s disease,

“and an estimated 4,000-6,000 others…are at risk of inheriting it from their parents.”

Recent research has highlighted alarming figures, showing that the prevalence of Huntington’s disease in Scotland is almost three times greater than reported elsewhere in Europe, North America and Australia, and, as has been mentioned, is more than five times greater than the worldwide average. Those are not mere figures or statistics, worrying and sobering as they are. They are people’s lives—our citizens—and it is the duty of all of us to do our utmost to protect our people wherever possible.

With that principle in mind, the Scottish Government have released funding to allow University of Aberdeen academics and NHS Grampian Huntington’s disease clinic staff to lead pioneering research into tackling the disease. They have done so by leading on international drug trials, attempting to find ways to slow the progression of the disease and to increase our understanding of potential generational cures. The researchers have also gone one step further by engaging in close partnership with families affected by Huntington’s and working with the Scottish Huntington’s Association—we have heard much about its work already, and I place on record my thanks for it.

We must always remember that the disease is not about one individual, as we have heard. It is a cruel disease that has the power to destroy entire families. My heart goes out to all those who have lost loved ones through this horrible illness.

Children and young people have informed that body of work by agreeing to be interviewed about their experience of Huntington’s. That has allowed tools to be developed to support parents who face dilemmas about how, when and what to tell their children about the genetic condition. The use of such interviews is groundbreaking, taking a fully holistic approach to medical research within this field, and guided by one of the principles of Scotland’s national care framework—a family systems approach. I hope that that approach will be considered by other academics and Governments across the other nations of the UK.

Dr Karen Keenan, who conducted those interviews, explains:

“Living with a parent who has a serious hereditary degenerative condition like Huntington’s disease (HD) can be extremely difficult for children and young people. Many witness the loss of a parent as the illness progresses, whilst also discovering they are at 50% risk of developing the disease themselves in adult life.”

Families with Huntington’s disease can also face or feel considerable stigma, as my hon. Friend the Member for Paisley and Renfrewshire North outlined. There are higher rates of family breakdown and often there is secrecy about the existence of the disease within a family. The readiness to deal with a diagnosis is so important.

The Scottish Huntington’s Association is the only charity in Scotland exclusively dedicated to supporting families impacted by HD. It does this through a team of Huntington’s specialists, specialist youth advisers and a finance wellbeing service. The lifeline service provided by the association can and does make the difference between families coping and not coping. We can all find out more about its work by visiting hdscotland.org. I encourage all to do so.

Scottish-led research has been instrumental in identifying a need for age-appropriate information and support for children and young people impacted by the disease, and a need for parental guidance about disclosure to children and young adults. Over the last two decades, studies conducted by Scottish researchers have built an evidence base that has been used to inform support services for young people across Scotland, Europe and the rest of the world. It has influenced health and training, and social care professionals in the work that they do each and every day. I am sure we would all like to place on record our thanks and gratitude to them for that work.

I look forward to hearing what the Minister has to say on the Government’s approach as we all go forward together. Cross-party support in both the Scottish and the UK Parliament is quite apparent. The togetherness in this room during debates such as this, where we are all in total agreement, is another step forward in the right direction of raising awareness of this genetic illness.