On 19 May, we were in Parliament to launch our care coordination report.
The report, 'Support at every step: Improving care coordination for people living with Huntington’s disease’ calls for all people living with the condition to have a named professional, such as a nurse, acting as a single point of contact to coordinate their care.
Care coordinators can liaise with the range of providers a person may need support from, in areas including mental health, occupational therapy and social care. Crucially, they act as a bridge between a person’s Huntington’s disease clinic and community services. Their role involves educating health and social care professionals to ensure they have the knowledge to provide high-quality and joined-up care to people living with Huntington’s disease.
We would like to thank Helen Grant OBE MP for sponsoring the event and enabling it to take place.
We were pleased to meet with 27 MPs or their members of staff who wanted to find out more and pick up a copy of the report. We will be following up to ask MPs to continue their advocacy for the Huntington’s disease community.
Helen Grant OBE MP, who sponsored the event, said:
I urge decision-makers at both local and national levels to consider the recommendations in this report. Everyone living with Huntington’s disease needs a dedicated health or social care professional who can coordinate their care and act as a local expert on their needs.
The report was launched during this year’s Huntington’s Disease Awareness Month, with the theme of Behind the Gene highlighting the invisible challenges and untold stories of Huntington’s disease.
For the report, we surveyed over 250 people affected by Huntington’s disease. Over three quarters (76%) reported difficulties with washing and dressing, and more than one in five (21%) said they used a wheelchair. Despite living with these complex health and social care needs, almost two in three people (65%) said they did not have a named professional to coordinate care across different health and social care services.
Also meeting with MPs was Steve Duckett, a trustee at the Huntington’s Disease Association, who cared for his wife Sandy for over 25 years before she sadly lost her life to Huntington’s disease last year. Steve said:
“One of the biggest challenges was organising Sandy’s care. On some weeks, I could be on the phone to eight or nine different healthcare services. It felt like navigating a confusing maze and often I knew more about Huntington’s disease than the professionals. Having one person to speak to who knew about the condition and could have helped manage Sandy’s care would have made a world of difference.”
The launch of this report was an important opportunity to discuss with parliamentarians the issues raised by our community. Our thanks to all MPs who attended and showed a real interest in improving the lives of constituents affected by Huntington’s disease.
Cath Stanley BEM, Chief Executive of the Huntington’s Disease Association, said:
“Thank you to all the MPs who took time to visit us and learn more about Huntington’s disease and pick up the report. The report shows the need for one professional, like a nurse, who the family can contact to help coordinate care. Too many people are not getting the support they need. We look forward to working with the MPs to help the community get the support it so desperately needs.”
Care coordination report launch gallery
