On 9 November, Hilary Benn MP represented the Huntington's community in a Westminster Hall debate. This is the first time Huntington's disease has had this sort of exposure in parliament and this is a monumental moment for our community.
“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. I should also declare that my interest in this subject is the direct result of knowing someone who is suffering from this disease.”
He provided an in-depth speech which noted many factors that someone with Huntington's disease might face in their life. It included how it affects not only the person with the disease but also at-risk children, carers and family members that may test negative. The speech also included powerful quotes from the Huntington's community which really moved the MPs at the debate.
Hilary really emphasised the impact that the disease has on someone by saying:
“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.”
Hilary spoke about the difficulties for family carers and the need for more respite care. This was supported by Liz Saville Roberts MP (Wales) who went on to say:
“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.”
This led Hilary on to continue discussing the hardship families face when becoming full-time carers for their loved ones.
“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”
He highlighted the lack of awareness around the disease, the mistaken diagnosis, the discrimination people face when being accused of being drunk or on drugs. These are just some of the challenges people with Huntington’s disease face and Hilary was able to paint a picture of life for those with the disease and those at risk.
Patrick Grady MP (Scotland) supported this by adding that it is about raising awareness so that the disease is better understood to both the public and also to healthcare professionals.
Hilary goes on to discuss the challenges for young people and the impact it has on their lives. From decisions around starting a family, telling a partner, getting tested to watching their parent go through the disease and wondering if that is what their future holds.
It was great to see the data from the My Family Matters survey (last year’s Huntington’s disease awareness month campaign) used in such a powerful way. The facts and figures that Hilary mentioned showed how Huntington’s disease affects the person with the disease and their family members.
This led on to the very important point about the 'less visible symptoms' and how this affected people getting access to the right kind of care and financial support - this is something that we highlighted in our #HuntingtonsInMind campaign (this year’s Huntington’s disease awareness month campaign).
“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. Families need more support, including financial help and better care.”
“Let us begin by having a care co-ordinator—a Huntington’s disease specialist—in every community to help to identify and keep in regular contact with Huntington’s families in their area and guide them through the range of support that they need to meet their requirements.”
Hilary highlighted the importance of better mental health support, this is something he requested to be relooked at after bringing it to the table as part of the Early Day Motion. It is known that some mental health trusts have excluded people with mental health disorders.
“I am sure the Minister will check after the debate. If that is the case, it cannot be right, because patients who experience mental health problems—those who are, for example, profoundly depressed or suicidal—need help regardless of the reason for their experiencing those symptoms. We need good support everywhere. We need better access to mental health services and support.”
Liz Kendal went on to say:
“The critical issue of access to mental health services. Provision of comprehensive, specialist psychological care is an essential component of treating and dealing with Huntington’s disease”
Liz Kendal MP and Hilary discussed the need for National Institute for Health and Care Excellence (NICE) to develop guidelines for people with Huntington’s disease. Parkinson’s disease, multiple sclerosis and epilepsy have these guidelines in place which have helped to improve treatment pathways. Scotland already has a national care framework which shows the fundamental importance of the need for this in England, Wales, Ireland and Northern Ireland.
“There is an overwhelmingly strong case for the development of NICE guidance on Huntington’s that can support the care and management of patients and help to avoid the unwarranted variation in diagnosis and care that currently occurs.”
Liz finished her discussion by raising the current issue around the cost of living. She highlighted the financial strain that those with Huntington’s disease face. Families tend to have lower income due to being out of work or a full-time carer and living costs are higher due to spending more time at home, and higher calorie diets due to involuntary movements. Following this, she called for the Minister to push for a response from the Chancellor ahead of the Autumn financial meeting.
“The Huntington’s Disease Association recently did a survey looking at cost of living issues. It found that many people were cutting back on the absolute basics and were really worried about the increasing risk of debt and homelessness. Indeed, they wrote to the Chancellor about this issue on 26 October. Could the Minister encourage the Chancellor to reply to that letter? This is a pressing and immediate issue that people are facing.”
The debate was closed with Hilary thanking those who attended and for their valuable input. He thanked the Minister for her willingness to look further at some of the issues raised today. These included; a request for care-co-ordinators in all communities, looking at the lack of National Institute for Health and Care Excellence (NICE) guidelines for Huntington’s disease, the lack of mental health services, passing information onto the Defence Secretary regarding the issues faced in joining the armed services and finally funding for Huntington’s research.
Thank you
We cannot thank Hilary enough for the time he has put into the campaign, from regular meetings with the Huntington Disease Association and his work on the Early Day Motion (with Scottish Huntington Association, and the Huntington's Association Nothern Ireland, leading the Early Day Motion before bringing this to the table in Parliament.
Thank you to all the MPs who attended and spoke; Liz Saville Roberts, the Plaid Cymru MP for Dwyfor Meirionnydd, Patrick Grady for Glasgow North, Philip Dunne for Ludlow, Liz Twist MP for Blaydon, Liz Kendall MP for Leicester West, Steven Bonnar Scottish National Party for Coatbridge, Chryston and Bellshill, Matthew Pennycook Greenwich and Woolwich and Helen Whately Minister of State for Social Care.
We also want to take the opportunity to thank everyone in the community who supported this campaign. For those of you who wrote to your local MP (whether they signed or not) all of this helped us gain enough momentum in the Early Day Motion that enabled Hilary Benn to table a debate in Westminster Hall. This is a really proud moment for our community and it couldn't have been done without us all working together.