{"id":68241,"date":"2025-03-19T12:15:42","date_gmt":"2025-03-19T12:15:42","guid":{"rendered":"https:\/\/www.elysiumhealthcare.co.uk\/neurological\/?p=68241"},"modified":"2026-02-05T13:39:50","modified_gmt":"2026-02-05T13:39:50","slug":"three-generations-of-huntingtons-disease-a-family-members-perspective-at-stanley-house","status":"publish","type":"post","link":"https:\/\/v18jrwq856m.c.updraftclone.com\/neurological\/three-generations-of-huntingtons-disease-a-family-members-perspective-at-stanley-house\/","title":{"rendered":"Three generations of Huntington\u2019s disease: A family member\u2019s perspective at Stanley House"},"content":{"rendered":"

\u201cStanley House will be in my heart forevermore because they\u2019ve allowed Adam to have the independence nobody else would give him.\u201d<\/p><\/blockquote>\n

Huntington’s disease is a genetic disorder that has a 50% 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\u2019s Disease.<\/p>\n

 <\/p>\n

\"\"<\/p>\n

 <\/p>\n

Pat, 82 years old, lost her first husband and daughter to Huntington\u2019s 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\u2019s Disease Association\u2019s (HDA) Quality Assured status (first in 2022 then recredited in 2024) which means they provide specialist care for Huntington\u2019s 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.
\nIt 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\u2019s 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.<\/p>\n

Pat says:<\/strong> \u201cI\u2019ve had to deal with Huntington\u2019s Disease in my life since I was 28, and I\u2019m 82 now, so I have many years of experience with it. It began when my first husband Ian was diagnosed with Huntington\u2019s Disease, and we found out our children Michelle and Dan had a 50% chance of having the gene too. When Michelle took the test and discovered she had Huntington\u2019s, 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\u2019s Disease.<\/p>\n

\u201cIan 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\u2019t even let him smoke outside.\u201d<\/p><\/blockquote>\n

\"\"<\/p>\n

 <\/p>\n

\u201cBy this time, Adam had gone beyond us being able to care for him at home, but I don\u2019t like accepting no for an answer, and I wasn\u2019t prepared for Adam to be deprived of the only things that gave him any comfort because of policies. I was unhappy that people weren\u2019t 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 \u2013 and the only place that came up was Stanley House.<\/p>\n

\u201cI 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.<\/p>\n

\u201cAdam 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\u2019s wishes \u2013 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.\u201d<\/p><\/blockquote>\n

 <\/p>\n

\"\"<\/p>\n

 <\/p>\n

\u201cI\u2019ve always had a great deal of input with Adam\u2019s 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\u2019m very on the ball when it comes to Adam. I always watch carefully when I\u2019m there, and every time I make a suggestion, they act on it immediately.<\/p>\n

\u201cOne 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\u2019d move his bed around so he could watch it more easily, and they did it straight away. I\u2019ve found that with anything I think can be improved, the team are straight onto it.<\/p>\n

\u201cAll 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\u2019d been happily watching TV in bed that day. I didn\u2019t feel that he should be in bed all day, and that it wasn\u2019t 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\u2019s good for him. The events organiser Carolyn recently took Adam swimming, and he loved it – I don\u2019t even know how they managed it!\u201d<\/p>\n

 <\/p><\/blockquote>\n

\"\"<\/p>\n

 <\/p>\n

\u201cAdam is very happy and content. He\u2019s 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\u2019t give them anything but a 100% recommendation and gold stars for every single member of that team. They\u2019ve 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, \u2018But that\u2019s our job,\u2019 I say, \u2018No, it isn\u2019t just your job – it\u2019s your vocation, and you do it brilliantly\u2019. I love the team at Stanley House, they\u2019re superb, and I can\u2019t believe Adam is lucky enough to be in such a caring place.\u201d<\/p><\/blockquote>\n

 <\/p>\n

Make An Enquiry<\/strong><\/span><\/p>\n

If you\u2019d like to make a referral<\/a><\/span> then please get in touch with us.<\/p>\n

You can also visit each service\u2019s profile page to find out more about what our EveryExpert approach to care looks like in practice:<\/p>\n

Adderley Green, Staffordshire<\/a><\/span>
\nBadby Park, Northamptonshire<\/a><\/span>
\nGarden & Jacobs, Hertfordshire<\/a><\/span>
\nSt Neots, Cambridgeshire<\/a><\/span>
\nStanley House, Herefordshire<\/a><\/span>
\nThe Avalon Centre, Wiltshire<\/a><\/span>
\nThe Bridge, Middlesbrough, Wiltshire<\/a><\/span>
\nThe Dean, Gloucestershire<\/a><\/span><\/p>\n

 <\/p>\n

\"\"<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

\u201cStanley House will be in my heart forevermore because they\u2019ve allowed Adam to have the independence nobody else would give him.\u201d Huntington’s disease is a genetic disorder that has a 50% likelihood of being inherited by the next generation. Often the disease is passed through generations if families have children before they are tested and […]<\/p>\n","protected":false},"author":17,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","theme-transparent-header-meta":"default","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"set","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[1],"tags":[],"class_list":["post-68241","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"acf":[],"_links":{"self":[{"href":"https:\/\/v18jrwq856m.c.updraftclone.com\/neurological\/wp-json\/wp\/v2\/posts\/68241","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/v18jrwq856m.c.updraftclone.com\/neurological\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/v18jrwq856m.c.updraftclone.com\/neurological\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/v18jrwq856m.c.updraftclone.com\/neurological\/wp-json\/wp\/v2\/users\/17"}],"replies":[{"embeddable":true,"href":"https:\/\/v18jrwq856m.c.updraftclone.com\/neurological\/wp-json\/wp\/v2\/comments?post=68241"}],"version-history":[{"count":0,"href":"https:\/\/v18jrwq856m.c.updraftclone.com\/neurological\/wp-json\/wp\/v2\/posts\/68241\/revisions"}],"wp:attachment":[{"href":"https:\/\/v18jrwq856m.c.updraftclone.com\/neurological\/wp-json\/wp\/v2\/media?parent=68241"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/v18jrwq856m.c.updraftclone.com\/neurological\/wp-json\/wp\/v2\/categories?post=68241"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/v18jrwq856m.c.updraftclone.com\/neurological\/wp-json\/wp\/v2\/tags?post=68241"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}