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Here’s Stephen Andrade’s story, written by his mother, Leo. Just before he was 16, Stephen went to a residential school in Norfolk. Two years. It did not work as it did not have the services to provide for Stephen’s needs. After two years, a multi disciplinary team comprising the doctors, the school and Islington social services decided Stephen should go to the dreadful hospital St. Andrews. In Northampton. He was there two years. Steven became withdrawn and became a shell of the boy that we knew and love. Then after much campaigning he was moved to a lower secure hospital in Clacton on sea, Colchester. He has been at the Clacton Unit for almost 15 months. It was only meant to be a short term measure for assessment. Here is a film I took on my camera last year when I took Stephen’s younger brother to visit him at the Unit. he wasn’t allowed into the Unit and Stephen wasn’t allowed out. They hadn’t seen each other for two years: There is no sign of Stephen returning back home. Since he’s been at Clacton and being held there under mental health act , it has been added one more year to his detention. The mental health section ends this June. I fear it will be just be extended. Probably for another year? In the meetings about Stephen, discharge is never discussed. Stephen is having daily incidents and self harming head injuries. Currently I am trying to get the medical team at the Unit to look into Stephen’s head where there’s this huge…
Thomas Rawnsley died on the 4th February 2015. He was 20 years old. Thomas had a diagnosis of downs syndrome and autism. He was just 4ft 10″ in height. Thomas had been in three different ATUs, leading up to his death. Here are the words of Thomas’s mother, Paula: Someone told me at my sons funeral that time would heal. That I would never forget him but it would get easier. I don’t want to talk about his unspeakable, cruel death he suffered alone and away from me. I don’t want to think about the horror he faced in those final hours away from me. I hurt for him and me more and more every day. I fought so hard for my boy. They were always so powerful and Thomas was special to me. I didn’t know how I was going to cope with him when I found out he had Downs Syndrome. His father and I were so worried, no one gave us any hope or encouragement but we tried so hard alone and brought up the sweetest, mischievous, loving boy ever. He loved his three older sisters and they loved him equally. We had one great family and we struggled with all the ups and downs families have normally. But like many children going into their teens Thomas started to be troubled. Although very slight in stature, (he was only 4ft 10) he could be very strong. He also was diagnosed at this time with autism and so trying to understand what was…
Jack was born with ATRX syndrome, which on its own has its difficulties. He attended a special school and had no issues there at all until it was time to leave at 16. Jack’s anxieties were heightened more and more on the transition from school to college. He only visited the college once and on starting there, he found things very difficult. By this time he was known to CLDT team and was put on antipsychotic drugs. Jack managed 18 months of college before they eventually excluded him because they could no longer support him. The next 18 months support came under the social care umbrella where they threw all kinds of support charities at him. It was inconsistent, which is the worst type of support when you have needs like Jack’s. He hated it and his difficulties got worse to the point where he would go into town alone (as he was encouraged by the social care team to do) and get into trouble. The social care team didn’t like this and tried hard to control his life, activities etc. The psychiatrist was shelling out the drugs but wasn’t interested in Jack as a person at all. She prescribed 3 different drugs that he had extreme effects from, which added to his anxieties. I had asked for an autism assessment since Jack left school, but it fell on deaf ears. The events leading to Jack’s first section(2) under the Mental Health Act (please bear in mind that Jack has never been diagnosed with a…
The first post tells the story of Eden Norris. We chose this story to begin the seven days of action because Eden has been in ATUs for the last seven years of his life. This is way beyond the national average for time spent in ATUs. Eden is 24. He has a moderate learning disability and autism. Eden has been in 2 units. Eden was admitted to the first unit aged 17 and remained there for 5 years and 4 months. It was an adult medium forensic unit – which the family didn’t realise until after he had gone there. He had no criminal history. His parents agreed to him going there for an assessment as things had reached crisis point due to lack of the right support. Though Eden was admitted as a voluntary patient he was later sectioned under the Mental Health Act (section 37) following staff pressing charges after episodes of challenging behaviour. The episodes of challenging behaviour were often caused by things like staff locking his toys away. Eden was overmedicated and secluded for long periods of time. He put on 16 stone while he was there. For most of his years in this Unit, Eden was kept all day long in a single room. The room had no toilet facilities, so inevitably, Eden repeatedly soiled himself. He was fed through a hatch in the door. He very seldom had face to face, one to one contact with the staff. Eden has been in a second unit since January 2015. This…
Paid carers, support workers, personal assistants; there are many titles but for people who are not able to support themselves or who are not supported by family or loved ones these teams are an essential conduit to living a good life. Employing the right team and keeping this precious resource is something that I am sure many a manager has spent sleepless nights over. I know I have, and although I don’t have all the answers I want to share some of my thoughts and experiences as a leader who has tried to do the right thing with some success through personalized recruitment and retention working with the people supported and families. I will start with a bold declaration that I think we don’t like to admit; maybe because we are a ‘caring’ profession, or because being paid to ‘care’ is uncomfortable? But the truth is that teams are generally made up of PAID workers and being paid makes this a different relationship. It’s a job and that cannot be ignored. This is not to say people who work in this profession are not amazing – they are and I have been privileged to manage workers who routinely go over and above their duties, but it is job and not a well-paid one at that so we need to use thoughtful ways to find and keep good workers. I wonder sometimes whether in our quest to make things good for the people we support we are not always honest enough with ourselves and them about…
Jean was my Mum. Jean died last year, just before Christmas. Losing your Mum is one of the hardest things to go through in this life full of fateful twists and turns and losing mine was no exception. It was a complete gut wrenching time. Trying to go through the motions and hold things together whilst losing a great pal and someone who had kept me laughing all my life was at times unbearable. It's true that you seek out signs they are still with you ( I've had loads) feel numb and empty, go over things to see if you could have done more and just exist in a parallel place to everyone else for a while. Many people told me to hold onto the memories. I didn't want memories, I wanted her but now those memories one year later sustain me and it's thinking of her that keeps her alive for me. So if there are things I remember well about her they are her fun, laughter and ability to see things for what they were. Some of her insights and sayings about everyday life just still make me burst out laughing as I'm going about my daily life. Many people with disabilities knew my Mum. They loved her as a friend and brilliant confidante. She hated housework and cooking with a vengeance but loved listening to people and offering her very insightful and often hilarious views. I don't think anyone ever left her company without smiling, even if sometimes that feeling was…