Following a recent meeting with the Huntington's Disease Association, I was delighted to host them in Parliament last week.
The event marked the launch of their report on care coordination, entitled 'Support at every step: Improving care coordination for people living with Huntington's disease'.
There are at least 8,000 people in the UK living with Huntington's disease, with a further 32,000 at risk. Because it is hereditary, with each child of an affected parent carrying a 50% chance of inheriting it, the condition ripples across entire families and generations.
People with Huntington's disease need a dedicated care coordinator, yet too many are left without one. Research shows care coordinators are present in only 40% of English counties, and where professional support is absent, family members are pressured to fill the gap themselves, increasing the risk of crisis care.
People with access to a care coordinator report a much better care experience which makes the current postcode lottery all the more unacceptable. Decision-makers must act now to make coordinated care universal, especially as new treatments bring fresh hope to those affected.
Anyone in Maidstone and Malling who is affected by Huntington's disease can ask for support from the Huntington's Disease Association locally: https://www.hda.org.uk/information-and-support/branches-and-support/south-east/
