Stanley House, a complex care service in Herefordshire, is one of only a handful of services in the country to have been recognised by the Huntington’s Disease Association (HDA) for providing quality specialist Huntington’s care.
One of the patients cared for at Stanley House is Anne, a former fashion designer who became a resident at the home just over 10 years ago. Anne’s cousin, Judy, shares her personal experience of having a loved one live and receive care at Stanley House. In her own words, she explains, why having looked around other places, “I wouldn’t go anywhere else.”
First encounters with Stanley House – “It felt like a home, not a residential care home, but a real home.”
My cousin, Anne, had been diagnosed by the psychiatric team at Wootton Lawns with Huntington’s, after finally agreeing to have the blood test. Both her brother and father had died with Huntington’s. Her mother had also died from mesothelioma, so effectively she was on her own.
At that point she was living in a flat in Cheltenham with a care service coming in and providing support. We knew she needed more wrap-around care when she left the gas on after using the cooker to light a cigarette. Thankfully a neighbour alerted the police to the smell of gas, and with the help of the care team, they accessed the flat and found her.
After that incident we had a Best Interest Meeting, and it was decided that she really needed residential care. My husband and I had already been looking at various places because we knew this was going to be coming up at some point. We had looked at places local to us and they were ok. It would have suited us, but it just didn’t quite feel right for her.
Then her social worker told us about Stanley House. So, we took a trip up to have a look, and immediately it felt like a home, not a residential care home, but a real home. Stanley House also accepted patients that were in a younger age group and at the time Anne was in her late 40s, so not all services were able to provide care for her age group.
Heidi, who is now the manager, (although she wasn’t then, she had just started at Stanley House), showed us around and she was lovely. She said they tried to cater to the wishes of each individual person as much as they could, and that really appealed to me. Heidi shared an example of a lady, who although she was on end-of-life care, they managed to organise a visit of a pony just to be with her for a while, because she loved them so much. So, our initial impressions were very positive, and they remain so until this day. Anne’s individual needs and personal preferences have always been considered.
Settling in to Stanley House – “The communication is always excellent and I know she is well cared for.”
When Anne first arrived at Stanley House, you could describe her as ‘feisty,’ but that didn’t faze the team. She was always appropriately cared for and supported, and eventually she settled in.
Anne used to work in fashion designing for Laura Ashley’s children’s wear department for the American market, so she was always very well presented, very stylish! She could wear a sack and look stunning!
She liked a haircut, and her hair was always looked after. So, the team at Stanley House have made sure she has regular haircuts, they paint her nails, and she consistently looks well-presented when I visit. Sometimes she’s even wearing makeup! If she were fully cognisant of it, she’d be absolutely thrilled.
Visiting Stanley House is easy – I visit when I feel like it, rather than letting them know I was coming, and I’m always welcomed. I could never fault anything. I really couldn’t.
Anne is always enabled to retain her independence wherever possible whilst keeping her safe at the same time. It’s part of the culture of the home, and even if there are challenging situations, which there will be because you are looking after someone with acquired brain injury and Huntington’s, the communication is always excellent, and I know she is well cared for.
Positive risk taking at Stanley House – “They try to avoid placing limits on her.”
I feel that the team at Stanley House always try to enable Anne’s independence. They try to avoid placing limits on her and if she is able to do something or wants to do something they try their best to facilitate that.
For example, they encouraged Anne to be mobile for as long as possible. When Anne’s gait became poor, she would tend to walk around in circles, but she was still mobile and so the team tried to enable that for as long as possible. Inevitably she did fall and each time they would assess whether or not they should still encourage Anne to be mobile and independent.
After her third fall it was deemed appropriate that Anne now use a wheelchair and I think that is the right thing to do for her safety, but allowing her to be independent for as long as possible was also really important for her wellbeing.
Family Consultations – “My thoughts and opinions have always been welcomed.”
I get on well with all of the team involved with her care plan. My thoughts and opinions have always been welcomed and I’ve never been made to feel that I’m saying or doing the wrong thing. Even when I am expressing strong opinions during assessment meetings, the Stanley House team always listen and take on any feedback.
But they do more than that, the staff are lovely. My husband died last year unexpectedly, and they’ve been incredibly understanding. I looked after him – he was diagnosed and died within six months, and during that time I looked after him at home. I couldn’t get to see Anne because I needed to be at home. So, I got regular updates from the team saying that Anne was OK and then asking how I was. Even though I’m now back to monthly visits. I’m still treated very much with concern because of my situation, as well as coming to see Anne. And that’s always been consistent, whoever the staff are, they always care about you as well as your family member that they are caring for.
Incorporating personal preferences – “Anne managed to meet Peter Andre in person!”
Anne has been a long-time fan of Peter Andre, and I spent two years trying to get in contact with him and or his management company to get a photograph signed by him specifically for her. But whatever I did, I got no results whatsoever.
However, one day I was discussing it with the team and somehow, they managed to do what I couldn’t do, and Anne managed to meet him in person! He was turning on the Christmas lights last year in a nearby town and they organised for her to be taken there with another resident. So, she got to actually see him and have her photo taken. They went to all that trouble! It was absolutely brilliant! It was an experience of a lifetime for her.
So that’s obviously a huge thing that they did for her, but they always consider the smaller day-to-day things too. They managed to get her an Alexa and she’s very into her room scents, so she has a scent diffuser which gives a nice smell.
A place to get the care you need – “If I could go there, I would. It’s loving and caring.”
If another family asked me for my thoughts on Stanley House, I think the first thing I’d say is if I could go there, I would. It’s loving and caring. It is a place where I am very confident that people, regardless of the severity of their condition, would get the care they need. They will be kept as safe as possible within the remits of acquired brain injury care and Huntington’s. And, having looked around other places, I wouldn’t go anywhere else.
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Adderley Green, Staffordshire
Badby Park, Northamptonshire
Garden & Jacobs, Hertfordshire
Moorlands, Staffordshire
St Neots, Cambridgeshire
Stanley House, Herefordshire
The Avalon Centre, Wiltshire
The Bridge, Middlesbrough, Wiltshire
The Dean, Gloucestershire
