Accreditation identifies standards of care for people living with Huntington’s disease and ensures that care homes are consistently meeting these standards.

What is accreditation?

Accreditation is a way for those care homes who invest significant time, resources and commitment in specialist care for people with Huntington’s, to show this to the Huntington's community and benchmark the standards of care they offer. It also allows them to obtain recognition from the Huntington's Disease Association for achieving and maintaining these standards.

Why is accreditation so important?

Choosing a care home that meets both current and future care needs is one of the most challenging decisions that people with Huntington's disease, their families and carers may have to make. We want to make choosing a care home more of a positive experience for families affected by Huntington's disease. We hope the scheme will improve choice, provide people with reassurance that core standards of care will be provided and more information to help them make a decision about the best care home for their needs.

Often people move to care homes that don't understand the condition and people tell us interaction with the care home can feel like a battle.

We want that to change.

In this video we explain what Quality Assured is and what the benefits of participation in the scheme might be to your residents with Huntington's disease and to your business.

Benefits of accreditation

Care homes

  • Increased recognition for those care homes who invest in Huntington’s disease as a specialism
  • Increased specialism and expertise in supporting people with Huntington’s in care homes
  • Ongoing service development through continuous improvement
  • Increased Huntington’s disease focus and specialism within care homes
  • A recognised benchmark of quality

Patients and families

  • Improved information and support for those choosing a care home
  • Improved experiences of those choosing a care home
  • Improved outcomes for those who reside within care homes
  • Increased reassurance for families and caregivers

Susan Lewis-Ball, Yr Ysgol said:

“Here at Yr Ysgol, we were delighted to be the first independent Care Provider in Wales to undertake the Huntington’s Disease Association’s accreditation process. The process was thorough, comprehensive and ultimately rewarding, giving us the opportunity to lead the way in providing an excellent service for those living with Huntington’s disease. Our staff and service users played an integral part in our journey and enjoyed sharing their stories and contributing to a new and exciting project. Accreditation is vital for facilitating the quality of care provided and giving confidence to the service users and their families that their quality of life is paramount and at the heart of everything that Fieldbay strives to achieve.” 

Inspired by our community

The Huntington's Disease Association Quality Assured, from development to launch, has been driven with the experience and perspective of Huntington's families at its heart. People with the disease, their families and caregivers were consulted and involved in identifying key standards of care that should be practised.

The accreditation scheme involves a comprehensive system of self-assessment, observation and evidence gathering. This is combined with feedback opportunities for the people with Huntington's in care homes, their families and other stakeholders to build a clear understanding of whether the care home operates to the standards identified.

Core standards

The Quality Assured scheme is based on a set of nine core standards.

These standards were identified in line with the experiences of people with Huntington's disease, their families and caregivers. They demonstrate requirements, adjustments and alterations needed for care homes to effectively reflect specialism in caring for people with Huntington’s.

They have also been shared with other professionals, care home providers and regulatory authorities to ensure that they are realistic, achievable and do not duplicate the work of other agencies involved in the monitoring of care standards.

Accreditation scheme core standards

Accreditation process

The process starts when the care home confirms their interest and intention to formally apply for care home accreditation. 

The accreditation process can be broken down into five key stages.


Stage one - Enquiry and pre-application

  • Enquiry about accreditation received and an introductory pack sent including the scheme flyer costings along with the terms and conditions of accreditation.
  • Invoice for payment sent to the care home once the formal intention to apply for accreditation has been confirmed. Please note, homes must have a minimum CQC/CIW rating of 'Good' before applying for accreditation.


Stage two – Self-assessment

  • Signed copy of terms and conditions returned and accreditation paperwork sent including self-assessment portfolio, guidance on completion of portfolio and family/stakeholder questionnaires.
  • Completed self-assessment portfolio to be returned to the Huntington's Disease Association within six months of receipt of all paperwork.
  • Display a notice of intention in the care home.


Stage three – Assessment and observation

  • The Huntington's Disease Association will review the self-assessment portfolio and undertake an assessment and observation visit.
  • Report prepared and presented to accreditation panel.


Stage four – Accreditation decisions

  • Accreditation panel decides whether to award Quality Assured accreditation.
  • Care home informed of accreditation decision, and where accreditation is awarded, certificates, logo and brand guidance will be forwarded.
  • Accredited care homes added to the directory of accredited care homes. 


Stage five – Re-applying for accreditation

  • Eight months before the end of the two-year accreditation period, care homes are contacted to ascertain interest in continuing with accreditation unless they have notified the charity of changes that would have triggered a review of their accreditation.
  • Care home agrees further terms and conditions, completes new self-assessment portfolio and observation visit made.


Care homes that are successful in achieving the Huntington's Disease Association Quality Assured accreditation status receive a certificate of accreditation and are entitled to use the accreditation logo in promotional and marketing material during the two-year period of accreditation.

Background to the scheme

The care home accreditation scheme, Huntington's Disease Association Quality Assured, was developed out of discussions and feedback from families, professionals and others stakeholders within the Huntington’s disease community who identified a common set of issues which could be tackled through accreditation.



Caring for someone with Huntington’s requires a specialist approach, including adjustments to ensure that the appropriate and highest standards of specialist care is provided. Through consultation with the Huntington's community, we learned of many care homes that provide high standards of specialist care for people with Huntington’s. However, in contrast, we learned of many others who consider themselves to be Huntington’s specialists but were found to have little understanding of the condition and lacked the resources to cope with more complex symptoms and situations.


To try to address this disparity, we embarked on an accreditation project to develop standards against which care homes can be assessed and benchmarked. This project was made possible thanks to funding from Exemplar Healthcare Ltd which paid for the first year of project development.




From initial development to launch, the project has seen many stages including-

  • Review of similar schemes
  • Extensive consultation with the Huntington's community on the design of the scheme
  • Engagement and consultation with care home providers
  • Most importantly the development of Huntington’s disease standards of care against which care homes can be assessed


The scheme will provide participating care homes with the benchmark they need to work towards, the levels of training and investment they need to make for staff and the culture they should promote in the home itself. All of these will help improve quality care and support, help people living with Huntington’s to live their lives in the best environment and put an important emphasis on a person-centred approach to care.