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Inpatient neuro rehab

Stanley House – specialist in HD care

We take a closer look at the Elysium Healthcare Neurological care home



Stanley House Care Home, part of Elysium Healthcare Neurological, received its Huntington Disease Association (HDA) Quality Assured accreditation earlier this year. Here, we learn more about the specialist care home and the service it delivers 


Stanley House is one of only five care homes in the country to have achieved the HDA Quality Assured status. The specialist care home in Herefordshire has now been added to the HDA’s directory of accredited care homes, which provides more guidance for people with Huntington’s disease and their families in finding care homes.

The accreditation is a quality assurance programme that identifies the behaviours, cultures and specialist services required for a care home to meet the needs of caring for people affected by Huntington’s disease.

During the comprehensive accreditation process which involved the whole team, the HDA said that Stanley House’ssupport for the individual and positive risk-taking was of particular note’.

Positive risk-taking is a vital component of specialised Huntington’s care because it enables individuals to make their own decisions and exercise choice. Although it may seem counter-intuitive, empowering individuals to take small risks or participate in activities that are not typically regarded as positive for health, such as drinking alcohol or not having to shower seven days a week, can produce a positive outcome rather than negative.

Of course, the negative consequences of risk must be assessed and managed appropriately, and a person’s capacity to make decisions revisited and documented as their condition fluctuates but as part of a person-centred approach to care, within a specialist setting, positive risk-taking can be very beneficial for people with Huntington’s. Often leading to a decrease in agitation or frustration and associated behaviours.

Care centre director, Heidi McCarthy, said that positive risk-taking had been part of the person-centred approach at Stanley House for many years.

“It’s something that we do quite naturally. We always say, who is it a problem for? If it’s not a problem for the individual we are supporting, it shouldn’t be a problem for us,” she said.

“And I think that’s a really good saying. So, if somebody’s got 50 cups of squash in front of them and they’re happy, why am I going to remove them if it’s not causing a problem?

“It’s all about trying to give every resident the best life that we can: by understanding their needs, wants, likes and dislikes. This is their home for life and our aim is to build a secure and happy environment that reflects individuality – and sometimes that involves risk taking.”

One of the primary goals of HDA Quality Assured is to improve the experience of choosing a care home for families of loved ones affected by Huntington’s disease. A high proportion of families report having a negative experience and so the scheme aims to reassure families that core standards are in place and their loved one will receive quality specialist care.

Changing care homes or experiencing placement breakdowns is very unsettling for individuals and distressing for the family members that are supporting them. Common reasons for placement breakdowns are restrictive practices enforced by the care home, i.e. not letting individuals take positive risks, which contribute to challenging behaviours, and lack of training and understanding of the specific needs of individuals living with Huntington’s. 

For Heidi and the team at Stanley House, communicating with the resident and educating their family about what to expect is a key part of the settling in process, and ensuring a positive experience of care.

Heidi said: I think it’s about giving them the knowledge. Families want to feel settled and want to know that their loved ones are being cared for. So if they’ve got a worry or a concern they can come and see us, they can ask what they want to ask. What we want to show or explain to both our residents and their families is that there can be a good care setting, and that there can be a life living in care with Huntington’s. 

“Each resident here has different needs and I explain how we accommodate those, we work around individual needs rather than enforcing set routines. For example, a lot of placement breakdowns result from an enforcement of personal care. A resident might not want to shower or wash and forcing them to do so will create agitation and behaviours. 

“We focus on building a relationship with our residents first and starting very slowly. We will always ensure appropriate hygiene levels, but in a modified way that is acceptable to the resident. We have to be flexible in our approach but that’s all part of person-centred care, it starts with the individual and not with us. 

“Person centred care is at the heart of everything we do here at Stanley House. We can’t offer positive risk-taking without it all focusing on the individual and their needs rather than a set way of doing things. People with Huntington’s are all so different. They all have the same condition which has traits along the way, but they’re all individual.

Because the team at Stanley House have a wealth of experience and knowledge, this feeds into the specialist staff training to support new learners in delivering this type of care to those with HD.  All staff learn to support people with HD and their families to face the challenges, often with feelings of fear, self-doubt and loss and how this can affect both physical and mental wellbeing and evolving relationships.

“We’re thrilled to achieve the accreditation status which recognises our continued hard work and commitment to our residents and their families.”

Helen Santini, team leader, Huntington’s Disease Association said: “The Huntington’s Disease Association congratulates Stanley House on achieving accreditation and of particular note was their support for the individual and positive risk-taking. Achieving accreditation is a long and time-consuming process, which involves the whole team.  

“However, this is particularly true for providing a good quality of care for people with Huntington’s disease which needs to be demonstrated throughout the process. 

“It is great to see more care homes added to our directory of accredited care homes to provide more guidance for people with Huntington’s disease and their families in finding care homes. We look forward to working closely with Stanley House over the next two years and further ahead.”