East Sussex 1

My son was diagnosed with Early Onset Huntington's Disease at 26. It was an enormous shock as it is usually passed down in families, and we had no history of it within ours. For many years my son was able to live independently. He then went into Supported Living, where he was happy and settled for six years. As his mobility began to worsen, the flat he was in became fraught with dangers and his Support Worker suggested that the right care home setting would be a positive way forward.

Looking back now, I can see how niave and gullible we, as a family, were. When visiting the recommended establishment it seemed as if they were offering a positive social life, outings, involvement with the local community and the individual care that my son needed. He was delighted with the prospect of retaining his independence but having a friendly and understanding group of people to enhance his life.

He moved in in June 2019..and within weeks we realised that basically everything we had been told was exagerrated or just completely untrue. This meant that his father and I were spending 6 hours every day with him, his sister visited 2 or 3 times a week, and his small group of friends also went to spend time with him. Then in July the GP recommended a catheter. It was only later we "discovered" the home had stated that the amount of time he needed in the toilet, was impacting on their 'work force.' Within ten days my son was rushed to hospital with urinary sepsis.  It was devastating, and though he survived (just) he spent the next 5 weeks in hospital, where his father and I covered his needs for eight hours a day, seven days a week. Huntington's is a very rare disease and so our knowledge and support was gratefully received.

On his return to the care home, very debilitated by the sepsis, it became even mor obvious that the care home could meet none of his needs and we started to look for another, more appropriate and caring establishments.

At this point my son had no social worker and our initial dealings with the care service, was attempting to get a social worker to support this move. This was a herculean task and had still not led to any form of being allocated a designated social worker by March 2020, when the first Covid Lock Down was put in place.

From this point onwards the management team at the Care Home, became even more obstreporous than they had been previously, and we found ourselves being ignored, and generally treated as if we were a nuisance that they were unwilling to deal with. A social worker contacted us at the end of March, to inform us that she had been allocated to work with us and the home, but that we were so obstructive that unless we left our son's care in 'the hands of the professionals' they would have no choice but to evict my son. Over the coming months things became even more devastating, as all residents were kept in their rooms, with only basic care and no social interaction. My son deteriorated rapidly. He lost over 2 stone in weight, was put on anti-psychotic drugs because he was being disruptive, (he had no bell, and would call out for help,) and he was soon in in a vegetative state. It was heartbreaking. 

The fight continued throughout first and second  lockdown and it was only when we managed to get CHC funding that it was agreed that the placement was unsuitable. My son moved to a new (and amazing) care home in July 2021 and the last seven months have been both happy and successful. He is no longer on anti-psychotics and the care staff go over and above to see him smile. 

Without the support of more people than I can name, none of this would ever have happened. The way in which all services closed their doors on us and the attitude of the care home management, was horrendous, and they tried their best to "Break Us."  Luckily they did not succeed...but it is a journey I hope never occurs again, and only through campaigning and exposing the cracks in a very broken system,  can we move forward, supporting residents and relatives who are still being so negatively affected.