The HDA Quality Assured Programme: What Does Quality Huntington’s Care Look Like?

HDA Quality Assured is a quality assurance programme run by the Huntington’s Disease Association to help families find a suitable care home or service for their loved one. It identifies the behaviours, cultures and specialist services required for a care home to provide quality care for people affected by Huntington’s disease.

In order to ensure the very highest standards of care, The HDA Quality Assured Programme is an independent assessment programme whose stringent standards are managed by the Huntington’s Disease Association Executive Council.

Elysium Neurological’s services that provide care for people living with Huntington’s Disease are currently beginning their application to be accepted onto the programme. As part of our EveryExpert approach we are exploring best practice in Huntington’s care, the benefit to the individual and their family and how our services can advance the care they provide.

In this article we talk with Catherine Lyon BSc and RGN (Retired), and Member of the Huntington’s Disease Association Executive Council, about what good quality Huntington’s disease care looks like and why a dynamic, proactive team that has the flexibility to respond to the individual’s needs is essential.


Hi Catherine, thanks for joining us today to talk about HDA Quality Assured. Firstly, let’s get some background on the scheme. How did it come about?

Historically, individuals with Huntington’s disease (HD) found themselves receiving long term care in the large psychiatric hospitals and many sufferers and their families still struggle with the fear and stigma associated with these memories today. When care in the community came into force they then struggled to care for their loved ones at home and many will have frustrating tales of poor support and understanding of the condition. Given the condition’s rarity it is understandable, but the challenge to get timely appropriate help is a real-life challenge to many.



Many nursing homes began to add HD to their list of specialisms but again, given the rarity, families found that despite the condition being on the list of care provided, the homes had little experience of HD and its many challenges. This often led to their loved ones being admitted into homes, the placement failing, and their struggles and challenges continued.

The Huntington’s Disease Association were being asked by our members to recommend homes and the team of Specialist Huntington’s disease advisers were tasked with looking for homes in their areas that provided a good reliable service. Many homes also contacted the Huntington’s Disease Association for advice and guidance and so we felt it was a good time to devise an award that would inform and advise the home and give families searching for homes some reassurance that these homes had a good understanding of the condition.


What issues were families facing when choosing a service and how does the scheme address those issues?

Due to the rarity of the condition and the challenges it presents, those living with HD usually have an exceedingly difficult and frustrating time getting the support they need in a timely and appropriate manner. It is not uncommon for families affected by Huntington’s disease to have lurched from crisis to crisis for a lengthy period before admission to a care home is agreed. Families will have spent many years caring and coping for their loved one’s idiosyncratic needs and it’s hard for them to comprehend how any home could meet these.

For example, any home that doesn’t offer access to a 24hr kitchen or a restrictive smoking policy or no formalised support from a Neurologist or OT, dietician or SALT, limited appreciation of the complex risks associated with HD, falls, behaviour, choking and nutritional risks. Many homes didn’t appear ready for these and therefore families were not confident. The scheme aims to improve the advice and support available for those choosing a home.



Why do you think there is a lack of consistency in the levels of care across services that provide Huntington’s disease care?

I think that the lack of consistency comes from the rarity of the condition, lack of training and understanding of the complexities of HD and the different ways that an individual can experience the condition themselves. A home may have provided good care for one person but then find another challenging.


Why is a specialist approach important when caring for someone with Huntington’s disease?

HD causes changes in movement, learning, thinking and emotions. For someone living with HD, their tolerance to treatments and medications can vary, so a specialist team who has seen a number of people with HD will have a comprehensive understanding of the treatments available and the way the disease progresses.


What does good quality Huntington’s disease care look like?

Well trained staff with an understanding of the risks associated with Huntington’s disease. A dynamic, proactive team that has the flexibility to respond to the individual’s idiosyncratic needs rather than expecting them to change; they cannot. A home that has access to a specialist team to advise on medications, diet, posture and mobility and an imaginative activity programme that understands how behaviour can escalate and how it can be deescalated.



Why is it important to provide care homes with a benchmark to work towards?

Without a guide, how do we know where to go? In all areas of our life, we look for a set of instructions to see how best to proceed.

Our aim is to:

  1. Improve the quality of life of people living with HD in care homes
  2. Improve the advice and support available for those choosing a care home
  3. Improve standards of care within care homes who seek to specialise in HD
  4. Recognise and support those care homes who are delivering specialist care

The HD Quality Assured scheme is based on a set of nine core standards, could you explain the thinking behind the core standards, and why they were chosen?

The core standards were devised to mirror the expectations of the CQC in that we expect to see a home that is safe, effective, caring, responsive and well led. But to that we have added those specialist areas that are specific to HD itself. The award asks the home to consider the main risks associated with HD and how they are going to meet them.

  1. Choking and nutritional risks and challenges with communication
  2. Fall and mobility
  3. Behaviour that escalates
  4. End of life needs

To meet these risks, we hope to see control measures such as good training for all staff in Huntington’s disease and behaviour management, and a good activity programme. We also expect to see specialist services available, SALT, dieticians, OT and physio, neurological consultant input and routine GP review. We would expect to see good relationships with families and a clear understanding of end-of-life care, the person’s wishes and in particular their thoughts around Pegs or DNAR.



The programme sounds absolutely essential for families but what is the benefit to homes/services who achieve the accreditation?

There are many benefits to services. Our aim is to give homes that are specialising in HD steps to take to assure that they are safe, effective, caring, responsive and well led, along with a way to display their expertise that is easily recognisable to stakeholders and individuals seeking out care.

In addition, working towards and achieving an award is an excellent motivational tool for staff teams. Having just one resident who is challenging can cause a lot of stress to the team and the other residents in the home. Well trained staff and good support from expert services improves confidence and morale and ultimately the service and reputation of the home.

HD is one of many neurological conditions. Typically all these conditions present with similar challenges; effects to mobility, speech and mood. In HD you see these symptoms in the extreme and so if a home becomes confident in supporting an individual with HD it will be equally as confident to support many other conditions with similar presentations.



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