Westminster Hall debate announced as new figures show only 36% of public aware of impact of disease
A call to expand specialist services for families impacted by Huntington’s disease (HD) is being backed by more MPs than any other Early Day Motion (EDM) tabled so far this parliamentary year – and now the matter is to be debated in Westminster Hall.
As parliament approaches the November recess, the call to action on behalf of the Huntington’s community has the endorsement of 91 MPs representing all four nations of the UK and from every party in the Commons: Conservative, Labour, SNP, Lib Dem, Independent, DUP, Plaid Cymru, Alba, SDLP, Alliance and Green MPs.
It follows on from an equivalent motion in the Scottish Parliament, tabled by Jackie Baillie MSP, receiving support from a record 98% of eligible MSPs.
Survey statistics
The rainbow coalition of influential cross-party supporters for the UK Parliament motion includes sponsoring Labour’s Hilary Benn MP, Conservative Father of the House Sir Peter Bottomley, SNP Westminster Leader Ian Blackford, Lib Dem Leader Sir Ed Davey, Plaid Cymru Leader Liz Saville Roberts, DUP Chief Whip Sammy Wilson and Green MP Caroline Lucas.
The growing momentum at Westminster coincides with the publication of a YouGov survey (see note 2) showing the scale of the challenge required to increase knowledge and understanding of Huntington’s disease. The survey showed that:
- Only 37% of UK adults were aware that Huntington's disease is related to the brain
- Only 36% of UK adults were aware that Huntington’s is an incurable condition that gets worse over time and is ultimately fatal
- 45% didn’t know that the primary cause of Huntington’s is a hereditary condition
- 25% had never heard of Huntington’s disease at all
Huntington’s disease is a rare, hereditary, extremely difficult to manage and currently incurable neurological condition that slowly robs patients of their ability to walk, talk, eat, drink, make rational decisions and care for themselves. The combined physical, mental health and cognitive impact of the condition often result in people with the illness being dismissed as being drunk, on drugs or as general troublemakers as a result of their erratic behaviours. This can then contribute to them being overlooked for the care and support they require from people who don’t understand the condition.
To make matters worse people with the illness often have no insight into their condition, and therefore do not request help or are difficult to engage with. In areas where no specialist support is available families remain hidden and abandoned. Children become carers for their parents, all the while knowing that they have a 50% chance of inheriting the very condition they see unfolding in front of their eyes.
The parliamentary motion and survey is the work of the UK Huntington’s Disease Alliance - a partnership of Scottish Huntington’s Association, Huntington’s Disease Association of England and Wales and the Huntington’s Disease Association of Northern Ireland.
A spokesperson for the Alliance and CEO of Huntington’s Disease Association of England and Wales, Cath Stanley, said:
“Huntington’s disease is a hugely complex, widely misunderstood and extremely difficult to manage condition. Specialist services including mental health support are not some nice to have optional extra but an absolute necessity. MPs from all parties have put traditional rivalries to one side to back this proposition in significant numbers. It’s time for health and social care providers throughout the UK to take heed and work with their national Huntington’s Association to deliver the care and support that these extremely vulnerable families both need and deserve.”
Former world champion and Olympic medallist rower, Sarah Wickless MBE, has the gene that causes Huntington’s disease. Sarah, who is also a Patron of the Scottish Huntington’s Association, said:
“Having lost my mother to Huntington’s disease and having tested positive for the faulty gene that causes it, I know just how important it is that the right services are in place for Huntington’s families where and when they need them. Following on from the record 98% support secured in the Scottish Parliament for growing specialist support for Huntington’s families I am delighted that the UK Parliament is getting behind this proposition too. Huntington’s disease is a rare and misunderstood condition that requires specialist support no matter where you live throughout the UK.”
Hilary Benn MP, who tabled the EDM, said:
“I am delighted that our EDM has secured such strong cross-party support from throughout the UK. Huntington’s disease is a rare and extremely difficult to manage condition. It has an enormous impact on the physical, mental and cognitive health of those who have it, and a devastating impact on the family and friends who care for them. I hope this will encourage governments and health and social care providers to make sure that Huntington’s families get the support they need and deserve, which sadly does not happen in too many cases at present. "
Notes for editors
1. About the UK Parliament EDM on Huntington’s disease and Westminster Hall Debate
Hilary Benn’s EDM, and a full list of supporters, can be viewed here.
The Westminster Hall Debate on Huntington’s disease will take place on Wednesday 9 November from 9.30am – 11.00am, watch it live here.
2. About YouGov survey figures
All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 4415 adults. Fieldwork was undertaken between 10 - 12 May 2022. The survey was carried out online. The figures have been weighted and are representative of all UK adults (aged 18+).
The survey was partly funded by an independent donation from Roche Products Ltd. Roche Products Ltd has had no editorial influence over the content.
3. About Huntington’s disease
Huntington’s disease is a complex neurological condition with symptoms that typically begin to develop between the ages of 30 and 50. It is hereditary, meaning that it impacts upon entire families over generations rather than on individuals alone. Each child of a person who has Huntington’s disease is at 50% risk of inheriting the disease.
As Huntington’s disease progresses it can impact a person’s:
- Movement (or motor skills): People with Huntington’s can suffer from repetitive involuntary movements resulting in mobility, balance and coordination problems as well as difficulties with speech and swallowing.
- Thinking processes (or cognition): Huntington’s causes a type of early onset dementia, which affects ability to process information, make decisions, solve problems, plan and organise.
- Mental health: People may also experience a decline in mental health. Depression, anxiety, irritability, obsessive pre-occupations and apathy are amongst the most common mental health problems experienced. Psychosis may also occur.
Around 8,000 people throughout the UK have Huntington’s disease, with an estimated 32,000 at risk of inheriting it.
Symptoms generally progress slowly over a long period of time. Those who have the disease may eventually lose the ability to walk, talk, eat, drink, make decisions or care for themselves. It typically takes between 10 and 25 years from a person developing Huntington’s symptoms until the end of life.
Although worldwide research is taking place there is no cure for Huntington’s disease. However, many of its symptoms can be managed with a combination of medication, alternative therapies and appropriate support from specialist services delivered by Huntington's Associations and medical, health and social care providers.
Even today, there is a widespread lack of awareness amongst the wider public about the disease, which leaves many families feeling isolated and misunderstood in their own communities.
4. About the UK’s Huntington’s Disease Associations
For further information on Scottish Huntington’s Association click here.
Roisin Eadie, Communications Lead
roisin.eadie@hdscotland.org
07495 292 434
For further information on Huntington’s Disease Association of England and Wales click here.
Vicki Rutland, Head of Communication and Marketing
vicki.rutland@hda.org.uk
07841 037625
For further information on the Huntington’s Disease Association of Northern Ireland click here.
info@hdani.org.uk