The Huntington’s Disease Association’s response to the Health and Disability White Paper.

On the same day of the Spring Budget 2023, the government released ‘The Health and Disability White Paper’. The White Paper aims to help more disabled people and people with health conditions to start, stay and succeed in work.

Cath Stanley, Chief Executive of the Huntington Disease Association said,

"The Health and Disability white paper offers some benefit to those with Huntington's disease. It is pleasing to see the removal of the work capability assessment, which is often a very stressful process. We welcome the increase of the enhanced support service to help people access benefits. In little-known conditions like Huntington's disease, the fact that people will be able to see the health assessment prior to submission will also be an advantage.

We are however concerned about the reliance on using the PIP assessment as this is often challenging and we have some concerns that there may be a move to force more people into work, who are not able, due to the fear of them losing their benefits. We will be actively contributing to the consultation for the action plan"

What’s in the White Paper?


This White Paper has set out the government’s plans for change:


  • Transform the benefits system by removing the Work Capability Assessment. To ensure that those who are able to, can progress in or towards work, without the worry of being reassessed and losing their benefits. The system will focus on what people can do, rather than the limitations of a disability or health condition;
  • Improve employment support for disabled people and people with health conditions, investing to help people start, stay
  • and succeed in work; and
  • Improve the overall experience of the benefits system for disabled people, making it easier for people to access the right support and improving trust and transparency in decisions and processes.


How does the White Paper affect people living with Huntington’s disease? 

Many of the proposals in the White Paper relate to supporting disabled people to get back into and remain in work. For the Huntington’s disease community, many of these plans won’t help as Huntington’s is a complex, neurological condition with a triad of symptoms. Symptoms worsen over time, making it more challenging for those living with the disease to stay in work. 

 However, there are a number of proposals in this White Paper that will impact people living with Huntington’s disease. Removing the Work Capability Assessment - considered by many as stressful and unnecessary - is positive.  This will ensure that those who can progress in work won’t have to worry about being reassessed and losing their benefits.  

The concern is this may also signal that in future more people might be forced into work that isn’t appropriate for disabled people or risk losing financial support. We will keep an eye on this as plans develop and will feedback concerns about this to the government - especially as many people in the middle to latter stages of Huntington’s disease cannot work due to the disease’s progression. 

There are a number of planned improvements to services that would be beneficial for people with complex conditions like Huntington’s disease. It is welcome that the government plans to extend the Enhanced Support Service, which provides bespoke personalised support for people who find it hardest to use the benefits system. 

 Also of benefit, are the plans to share health assessment reports before a decision is made, to offer applicants the opportunity to clarify evidence. The development of specialist assessors with knowledge of particular health conditions will also help to provide the best support to people living with Huntington’s who apply for benefits. 

We do have concerns about the government removing the existing Work Capability Assessment so that in future there will only be one health and disability functional assessment – the Personal Independence Payment (PIP) assessment. PIP often denies support to people who need it and improvement to the PIP system is needed to increase trust and confidence. 


What’s the next steps with the White Paper?

 As part of this White Paper, the government has announced that it will develop a new Disability Action Plan in 2023, which will set out the practical action of the government to improve disabled people’s lives. The government will run a full public consultation on the plan later this year.

 The Huntington’s Disease Association will put the views and ideas of the Huntington’s disease community front and centre and engage with the government throughout, to ensure services improve for our community. We will also champion a better understanding of Huntington’s disease, to ensure the benefits system doesn’t worsen or become harder to access.