Huntington's disease is a genetic disorder that has a 50 per cent likelihood of being inherited by the next generation. Often the disease is passed through generations if families have children before they are tested and therefore do not know that they are carrying the disease. For family members who do not have the disease, it can mean that they live through multiple members of their families being affected and requiring care. For those family members it is often an experience that is too painful to put into words, which is why in this EveryExpert case study we are so grateful to Pat who shares her experience of three generations of Huntington’s Disease.

Pat, 82 years old, lost her first husband and daughter to Huntington’s Disease and she is now supporting her grandson Adam, who is living at Stanley House, a specialist care home in Herefordshire.

Stanley House achieved the Huntington’s Disease Association’s (HDA) Quality Assured status (first in 2022 then recredited in 2024) which means they provide specialist care for Huntington’s at a very high standard. Stanley House have previously been recognised for their approach to  positive risk-taking - allowing individuals to make their own decisions and exercise choice, even if they include small risks.

While it may seem counterintuitive, encouraging small risks or activities that some might deem unhealthy, like drinking alcohol or skipping showers, can lead to positive outcomes instead of negative ones.

It was this approach to positive risk taking that appealed to Pat, who had been caring for Adam for the past six years, after he developed Juvenile Huntington’s as a young man. Pat was determined for Adam to live somewhere where he could be supported to enjoy the things he wanted to without too many restrictions, believing that he should retain his independence for as long as possible.

In her own words, Pat explains how Stanley House was the only place willing to offer that option, and has since exceeded all her expectations.

Pat says: “I’ve had to deal with Huntington’s Disease in my life since I was 28, and I’m 82 now, so I have many years of experience with it. It began when my first husband Ian was diagnosed with Huntington’s Disease, and we found out our children Michelle and Dan had a 50 per cent chance of having the gene too.

"When Michelle took the test and discovered she had Huntington’s, she already had her son Adam, who was just 18 months old. We later found out Adam also had the gene when he developed Juvenile Huntington’s Disease.

“Ian and Michelle were cared for at Stagenhoe Park near where we live. But when it came time to find a place where Adam could live as his condition progressed, it was much harder. Adam is a young man, and he was only 28 when we were trying to find somewhere for him.

"He liked to smoke and drink a couple of beers a day, but none of the services near us in Hertfordshire, Bedfordshire or Cambridgeshire would allow him to do that in their care. All I got from them was that they had a no-smoking policy and that there was no point in arguing about it, and they wouldn’t even let him smoke outside.”

“By this time, Adam had gone beyond us being able to care for him at home, but I don’t like accepting no for an answer, and I wasn’t prepared for Adam to be deprived of the only things that gave him any comfort because of policies. I was unhappy that people weren’t using common sense because Adam was looking for somewhere that would become his new home, and therefore, he should be given every help. So, I searched the whole of the UK to find somewhere suitable – and the only place that came up was Stanley House.

“I rang Stanley House and spoke to Jo McCabe, the then head of the service, and she told me that they did allow patients to smoke, if that was their wish, and they would let Adam have his two cans of beer a day, again if that was what he wanted. Within a month, Jo and Heidi McCarthy came to meet Adam and got him a place. I cannot tell you what that meant to me, but they will be in my heart forevermore.

“Adam has had the most brilliant care all the way through his time at Stanley House. The staff have been unbelievably kind to him and put themselves out beyond the call of duty. They always respected Adam’s wishes – for example, when Adam could no longer hold a cigarette, I got him a smoke machine, but the nurses had to come out and light it for him each time.

"They always helped him and never forgot to give him his beer, which was above and beyond their normal duties. I always used to tell them how much I appreciated that because Adam could be very demanding at times.”

“I’ve always had a great deal of input with Adam’s care, and I used to travel to Stanley House by train regularly, which is more difficult now that my husband John and I are older.

"Whenever I went, the team at Stanley House accommodated us in every way possible. I used to work as a complaints manager in the NHS, so I know how care should be provided, and I’m very on the ball when it comes to Adam. I always watch carefully when I’m there, and every time I make a suggestion, they act on it immediately.

“One example was when I went to see Adam, who is now bed-bound, and realised his TV was on the opposite wall. I asked if they’d move his bed around so he could watch it more easily, and they did it straight away. I’ve found that with anything I think can be improved, the team are straight onto it.

“All the staff at Stanley House know me very well, and I know all of them by name. A while ago, I rang up, and we were talking about Adam and they told me he’d been happily watching TV in bed that day. I didn’t feel that he should be in bed all day, and that it wasn’t good for his mental health.

"So, I asked that they make sure Adam was taken out of his bed at least once a day for a minimum of 20 minutes. That was written into his care plan, and now they take him out every single day. This was totally down to Heidi (the Care Centre Director), and now he gets taken out in his wheelchair to sit with other patients, or for a walk or a drive, and it’s good for him. The events organiser Carolyn recently took Adam swimming, and he loved it - I don’t even know how they managed it!”

“Adam is very happy and content. He’s got a lovely bedroom with a huge telly, and the nurses are very caring. They love Adam, and they show they love him by taking amazingly good care of him. I couldn’t give them anything but a 100 per cent recommendation and gold stars for every single member of that team.

"They’ve helped me more than anybody. Knowing that Adam is there and safe brings so much strength to me. Whenever I say this to the team, they tell me, ‘But that’s our job,’

"I say, ‘No, it isn’t just your job - it’s your vocation, and you do it brilliantly’. I love the team at Stanley House, they’re superb, and I can’t believe Adam is lucky enough to be in such a caring place.”

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