Huntington’s Disease

Gavin Newlands Excerpts

Wednesday 9th November 2022 Westminster Hall

[Gavin Newlands (Paisley and Renfrewshire North) (SNP)]

It is a pleasure to serve under your chairship, Mr Robertson, and to follow the hon. Member for Strangford (Jim Shannon), who is so often left until the end in these debates. I congratulate the right hon. Member for Leeds Central (Hilary Benn) on securing this important debate on what is a very serious issue and on setting it out so thoroughly with his typical style and power. It is very apposite that the debate is being held today, just a few days before the Scottish Huntington’s Association has its first family gathering since the start of the pandemic, which is taking place in Falkirk this Saturday. I hope they enjoy themselves.

As the right hon. Member for Leeds Central set out so well, this is a complex, hereditary neurological condition that impacts not only individuals but entire families across many generations. There is currently no cure, and children of parents diagnosed with Huntington’s are at a 50% risk of inheriting it. In 2019, I was contacted by the Scottish Huntington’s Association, which is based in my constituency, regarding the ongoing stigma and discrimination faced by the children of parents with Huntington’s disease, due to the possibility that they may inherit it. The need to raise awareness of the challenges that individuals and families in the Huntington’s community experience is as prevalent today as it was then. Indeed, a recently published YouGov survey on the disease shows the scale of the challenge: only 37% of UK adults were aware that Huntington’s is related to the brain; only 36% were aware that it is incurable, gets worse over time and is ultimately fatal; 45% did not know that the primary cause is an hereditary condition; and, crucially, 25% had never even heard of Huntington’s.

People and families living with HD face multiple challenges, many of which have been highlighted by the right hon. Member for Leeds Central. Another issue that the SHA highlighted to me is insurance. Something that most of us take for granted can be entirely unobtainable or unaffordable for those with, or at risk from, HD.

The SHA is the only charity in Scotland dedicated exclusively to improving the lives of people impacted by Huntington’s. The organisation takes a family-centred approach, with a focus on delivering change for local communities through a team of specialist staff, youth advisers and financial wellbeing services. Their work has been not only recognised but replicated at both national and international levels as a model of excellence for the care and support of the Huntington’s disease community.

In 2015, the person-centred national care framework, which has been referenced, was developed by a multi- disciplinary expert group led by the SHA, with funding and support provided by the Scottish Government. At the core of that framework was the need for every NHS board area to have a sufficient number of HD specialists available to support families in their Huntington’s journey, as well as a Huntington’s disease clinical lead. The SHA said at the time:

“The development of this Framework—the first of its kind in the world—presents Scotland with a unique opportunity to significantly drive up health and social aspects of care and support provided to HD families throughout the country.”

I want to stress that this is entirely party apolitical: the framework had the support of all parties in the Scottish Parliament.

There are five guiding principles of the national care framework. The first is a person-centred approach:

“An approach to providing health and social care which puts an emphasis on understanding the world from each individual’s perspective.

The Person Centred Approach makes the quality of the relationship between the individual and those providing support central to the process. Understanding the emotional life of each individual is important to ensure that care can be tailored accordingly.

In HD this also includes understanding the unique ways that HD changes how someone might think or behave and adapting care around the person to take account of this.”

The second principle, which is also crucial, is a family systems approach:

“An approach ensuring that the needs of the whole family are taken into consideration.

The Family Systems Approach promotes an understanding that the impact of HD affects not individuals but entire families.”

The third principle is a biopsychosocial—that is a bit of a mouthful—model of health and disability:

“An approach that ensures that—as well as understanding the health impact of HD—health and social care staff also consider the social and psychological impact of the disease for each person.

This approach fits closely with the person centred approach.”

The fourth principle is personalisation:

“A way of thinking about delivering services that tries to design them to suit each individual rather than people fitting into predefined service ‘boxes’.”

Finally, and sadly, comes the palliative care approach:

“The active total care of clients whose disease is not responsive to curative treatment. Control of pain, of other symptoms and of psychological, social and spiritual problems is paramount. The goal of palliative care is the achievement of the best quality of life for clients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with treatment.”

Since the publication of the framework, services across Scotland have grown significantly, and the country is now edging closer to having an HD specialist and clinical lead in every mainland NHS board. To be clear, we have made massive strides in Scotland, but gaps still exist and more still needs to be done. I really hope that lessons can be learned from that approach for the rest of the UK, or indeed elsewhere. Astri Arnesen, the president of the European Huntington Association, has said:

“The Framework stands out to me as an invaluable resource on how to deal with HD. It is exactly what we need—not just information about HD but insight on how life with HD can be and how it can be managed whether you are impacted by HD directly or a relative, friend, colleague or anyone in touch with an HD affected family. The framework manages to cover the immense complexity of the disease in a very structured and straightforward way. A wonderful tool—hereby warmly recommended for Scotland and beyond its borders. I hope it will be widely shared and used!”

The support delivered by specialist services such as the SHA can provide invaluable care to individuals and families during their time of need and can be the difference between families coping and not coping. In Scotland, about 1,000 people have been diagnosed with Huntington’s, and an estimated 4,000 are at risk of inheriting the condition. In about 5% to 10% of cases, symptoms of the disease develop before the age of 20. A study by the University of Aberdeen highlighted that the number of HD cases in northern Scotland is now five times the global average, an increase of almost 50% over the last 30 years. Those numbers are, sadly, expected to be replicated across the rest of Scotland.

The SHA continues to highlight the challenges that specialist staff face due to the significant increase in cases over the years. However, that is still not reflected in the availability of resources, with some areas having no specialist services, despite the strides that we have made.

The chief executive of SHA, Alistair Haw, has said:

“Huntington’s disease is a hugely complex, widely misunderstood, and extremely difficult to manage condition. Specialist services are not some nice to have optional extra but an absolute necessity. Given the rise in cases over recent years a commensurate rise in specialist services is now required. Our Parliaments have backed this proposition resoundingly. The time has come for Scotland’s health and social care providers to take heed, and act.”

The growing need for specialist HD services has never been more prevalent, given the ongoing increase in demand. To conclude in a similar fashion to the right hon. Member for Leeds Central, the inexcusable burden placed on those caring for loved ones with Huntington’s must be addressed, in the hope of ensuring that all individuals and families impacted by the disease receive the highest quality and consistency of care, regardless of whether they live in Aberdeen, Aberavon, Ansty or Antrim. I hope that the Minister will take on board the contributions of all Members here today.