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 happening to him was hard. He didn’t want to go to school and I was under pressure to get him and the others to school. I asked for help. How I wish that I never had asked for help now. How I wish darling Thomas I had kept you by my side and never let you go.
The journey for Thomas was a darker and terrifying descent into a land of hospitals, drugs, cruelty and abuse resulting in a ‘ carer’ targeting him deliberately and bending back his fingers to torture him among other means of torture and repression. Thomas had a will and stood up for himself despite his small size but they gradually beat him down and then they broke him and us with him the day he died in their non care. I knew he would die away from me. When he was finally sent away from us by a judge who said he “was getting bored and needed his tea’ I wept. I knew he would never come home. I knew it would be the end. I'd been secretly gagged by the court for daring to talk about the previous abuse in a local paper . I had no where to go with my problems and pleading. Thomas’s official advocate had promised to stand against the transfer to the home in Sheffield but he turned against him on the day and agreed with the courts. Thomas was bundled off sobbing and I didn’t get the chance to say good bye.
The odds were always stacked against us. The last meeting I had with the professionals there were three lawyers in the room plus senior officers. We had a volunteer with us. We were not listened to. I told them Thomas had a serious chest infection and they said it wasn’t up for discussion at that meeting. Instead they told us it was an expensive meeting so I needed to listen to the important people. They had no intention of getting any grant money on offer to get Thomas housing. They stopped the application. It would have given us some hope and my darling boy some hope. Instead he died feeling hopeless and losing his faith in anyone to help him. the professionals at the meeting refused to let the Minister of Health Norman Lamb have information that day or the BBC who were interested in Thomas’s story. I know in my heart that if they had not gagged us again like that Thomas would be alive today as they wanted to go and get information over the next few days.
A week later Thomas was dead. A secret trip by a senior, and in my view, vengeful local authority officer to the court resulted in me being gagged again. I was unable to get to the people who could do something to help, and that cost Thomas his life. It was under the pretext of being in his best interests that the application to silence me was made. But it was because I criticised them for failing to look after my son properly and commissioning such appalling services. But all of those in power change their stories and have no accountability.
It was snowing the week Thomas died. The home told me not to go. They didn’t tell me how ill he really was. I set out and turned back because the snow was so bad. I’ll never forgive myself. I can’t live with the knowledge that I left him there in their hands. I have read reports now before his inquest that I can’t share or discuss yet. But I lie here alone in my flat desperate and guilty that the horror of his death was avoidable. It’s not something that time heals. It gnaws, twists, wrenches and possesses me in an agony that is indescribable. I post pictures of some crazy nights to make people think I’m ok but the craziness is all in me. I’m going mad with the pain and guilt of it all.
My boy, my vulnerable boy died alone without me. They immediately said it was natural causes but a lifetime of pain, separation, cocktails of drugs, sobbing to come home, pleading to see the Judge, fell on their cruel dispassionate ears and we, his family are left to tend his grave. I had to agree to turn off the life support system of the baby who I brought into this world and that I loved for every special bit of him.
Justice for my boy Thomas Rawnsley
Thomas’s final pre-inquest hearing is in Sheffield at 11am on the 5th May. Paula would really appreciate as much support as we can gather. If you are free on that day and are able to attend, we know that Paula would really appreciate the support.
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 mental health problem) was the professionals believed that Jack needed help. To our regret, we went along with this and left him there for 28 days.
On discharge Jack had no diagnosis (autism or mental health), no care plan or aftercare. My husband had to give up his job to support him with me. They stripped Jack of all the meds they had previously prescribed and we had to wait 8 weeks to see a psychiatrist. But by this time he was finding things even more difficult.. My husband returned to work after the 8 weeks and Jack’s behaviour became challenging again and aimed at me a lot of the time.
Social services offered a flat for Jack. There was no transition, we weren’t allowed to see it beforehand and we were given just three days to prepare Jack for the move. We dropped him off on a Sunday afternoon. We spent 2 hours cleaning what the professionals called the flat. It wasn’t a flat. It was a conservatory added on to a bungalow that housed two other residents. In the conservatory Jack had a seating area and a small kitchenette. He had a single bed in the corridor between the conservatory and the rest of the house and a bathroom at the end of the corridor. We left him with 2 guys that hardly spoke to us. That evening it was highlighted that it was the wrong place for Jack but he was kept there for a further 2 days.
Jack was so anxious and broken in the conservatory that the psychiatrist waded in there and then and sectioned him again. He was sent to an ATU in Birmingham. We live in Gloucestershire. I was not consulted at any point but the official papers says different! Jack pleaded with them for a second chance in the conservatory, even though he hated it and was very frightened there. He didn’t get one! After being in Birmingham for 2 weeks and after a lot of history written by myself, the ATU confirmed the diagnosis of autism and ADHD. Jack responded well to treatment and now has 3 days home leave each week. He is now waiting for a care provider to produce a team of people that can support Jack to come back to Gloucestershire. Jacks section ended on 28 March 2016 but this has been renewed because of the wait for a care package to be put in place back at home. We see the section being renewed indefinately. Not because Jack needs to be under section but because the LA are making no effort in putting a care package together. They dont have to spend a single penny whilst Jack is in the ATU and we get the impression they’d like to keep it that way.
The hospital are now trying to undermine our experience of Jack. We dont get any problems when Jack comes home on leave, although he gets very anxious prior to a home visit in case they cancel it. A couple of weeks ago, they cancelled Jack’s weekend home and Jack cleaned the whole ward in an attempt to get them to change their mind. Unfortunately, the Unit are now saying they don’t believe our reports of Jack’s behaviour at home. I know from other families that this is a familiar tactic to discredit families, it still feels very threatening for Jack’s future.
Jacks time in this ATU has really affected him. The tribunals, the reviews have all taken their toll on him. It will take a long time to forget. Their control over him and us is disgusting, they pull the strings and we jump! I’d like to add being taken from home and sectioned in two different units could all have been avoided if a diagnosis was offered to him here in the community, but he had to be sectioned to get it!
Jack’s young life has been ruined all because the professionals couldn’t be bothered to get to know him. Unresponsive. A cocktail of antipsychotic drugs. No wonder he doesn’t know what day of the week it is
Jack hasn’t lived yet. He hasn’t had a friend and feels very unsafe at the moment.
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 is many miles away from home. It is a remote location, 15 miles from the nearest town. It is a 13-hour round trip for his mum to visit him. Eden was allocated a shack in the woods for his sleeping quarters. He loves swimming but hasn’t been since being in this Unit. The nearest pool is many miles away and there is never enough staff employed on a shift to support Eden to swimming. Most of his day is spent either in his room or taking long walks in the Unit grounds.
Eden had an Improving Lives Team review in February 2015. Everyone was clear that discharge planning should start and an appropriate package of support be developed in the community. The commissioner from his home area met with the family and said they would start planning. However, 13 months on, no steps have been taken to do this and there is no discharge date. Eden ’s parents have made formal complaints about his care but nothing has been done.
Eden’s mum has done a huge amount of work to explore and approach housing and support providers locally and involve experts to help design a potential package of housing and support (these include the Housing and Support Alliance, Dimensions, My Safe Home, Yarrow Housing). She has found providers that would be willing to develop and provide a package for Eden if Hammersmith & Fulham LA give the go ahead. She has given all the details to the commissioner at H&F. They do not appear to have done anything with this information.
At the CPA meeting in September 2015 – no proper steps had been taken by H&F in relation to discharge planning. In the last year they have had 3 meetings with the commissioner where they have discussed the research Eden ’s mum has done. They went through budgets, talked about type of accommodation. But nothing has been taken forward, despite promises.
When Eden first moved to the current unit, staff communicated with him via a hatch. This was because of information passed on by the psychiatrist at the previous unit. Soon after, the current unit realised how wrong and misleading this information had been about Eden. And one of the staff said ‘he shouldn’t be here’.
He should never have gone to the medium forensic unit. He had been living in residential care from the age of 15. The family were struggling to cope due to lack of support from H&F. But he had been doing very little at the residential care placement – he was really bored. He came home for visits, where he would do things with his family. His mum remembers he had been out in the garden at home on the trampoline, playing swingball and going to a Nepalese restaurant a couple of months before he ended up in the unit. He had been so bored at the care home. There had just been a little supermarket nearby. There was nothing to do. There were activities and things to do in the nearby town but it was a 2 mile walk away – there was no transport due to lack of funding – so Eden was hardly ever able to access activities. It was no surprise that things got to a crisis point.
Eden is someone who can talk and say how he feels and what he thinks. But what his family have seen over the last few months is very concerning. It appears that everything is being done to stop Eden having a voice. Eden ’s mum thinks this could be a response to her trying to get help with Eden ’s case and making complaints to move things forward. Several months ago the hospital did everything they could to block the relationship between Eden and his mum’s partner, who Eden talks to and opens up to. They tried to shut this relationship down by saying he was not the biological father so couldn’t ring.
Soon after the September 2015 CPA meeting, Eden’s mum was not allowed to speak to Eden for 10 days. She phoned but was told that Eden did not want to speak to her. This was very out of character. Following this, she heard that Eden had hit out at 3 people in the unit. He had not had any incidents for 2.5 years. His family think the distress of not speaking to his mum could have triggered this behaviour and are worried that this could now be given as a reason why Eden shouldn’t be discharged. The protocol about phoning has changed. His mum is now told that they can not phone him. They can phone and then staff will ask Eden if he wants to speak to them, or Eden can phone them when he wants to. When his mum visits and they get some precious time alone – she supports him to phone his sister and his Gran and he loves speaking to them. He needs support to speak to those he loves. The unit should be facilitating contact with his family and prompting him.
The consequence is he is speaking much less to his family. He is naturally a lively boy but he has become monosyllabic. His medication has also been increased. When mum does speak the call is on loudspeaker. His speaking is slurred because of the drugs. He has said ‘mum I can’t get the words out’ because his face is paralysed as a side effect of the drug. The drugs are also shutting his thinking down, which makes it hard for him to make choices and ask. It is very concerning. The unit are using phrases like it is in his best interests, his choice etc. His mum is watching him sink into himself.
His mum is also concerned he is not getting enough to drink. He used to ask for a drink frequently but he doesn’t now. It is important he drinks enough water being on so much medication. His mum has raised concerns about this. Being on the drug shuts his thinking down and may mean he doesn’t ask for a drink.
His medication had been reduced to 200 mg of Clopixol per week, but it has been put up to 300 mg per week. (Note: Clopixol is an antipsychotic but Eden does not have a psychotic disorder). Eden told his mum that his medication had gone up, the unit didn’t inform her about this. Being on less medication meant Eden was talking more. His family fear his medication has been put up to try and keep Eden quiet.
Timing wise his mum realises his medication was put up on 25th Nov, a couple of days after the communication that, an old family friend, Rev. Rudi had sent about Eden ’s experience in units. Eden ’s mum thinks this could be a direct response and part of the hospital shutting things down – overmedicating Eden and reducing phone contact with the family. Following the communication from Rudi, a social worker from safeguarding in Norfolk contacted Eden ’s mum about the Facebook petition they have for Eden – asking them to take it down. The family keep being put in the position where there is no action to move things forward – and when they do speak out – the hospital closes communication channels, and she gets calls from professionals, which have a very controlling, threatening feel – and make Eden ’s mum fear things could get worse for Eden .
In the Improving Lives review in March 2015 – Eden is quoted in it: ‘I don’t want to live here, I would give it one out of ten. I like looking after animals best. I want to live in London near my mum’. He loves the Shepherd’s Bush area. He grew up using the parks in London .
Eden’s mum was told a while ago that it might be unlikely Eden could come and live back in the family home (as it would need adaptations and it might be complicated to make this happen). So Eden ’s mum gently started talking about ‘a house near mum’ to help get Eden used to the idea of being in his own house but still near his mum. Eden got used to this and the language moved from ‘living with mum’ to ‘living in his own house near mum’. Eden has suddenly been asked a lot about where he wants to live. This is a new question and has been confusing for Eden. He has always said he wants to live with or near his mum. H&F seem to be actively encouraging Eden to be eventually discharged to Norfolk . They do not seem to want to arrange the care package for Eden and the ongoing responsibility for Eden in H&F. There are some real concerns about what is going on and how the law is being used.
In the meantime, Eden will shortly be entering his eighth year, away from his home and family.
Seven Days of ATU Action need your help in getting Eden the home he so deserves after seven years away from his family.
I was diagnosed with Epilepsy aged 12 having suffer regular seizures both Grand Mal/ Tonic Clonic and abscent seizures. I was medicated with the medication Epilim (Sodium Valproate)
The advice given to me by my Neurologist, was always to take my medication as this would help control my seizures, so trusting the experts always done so. When I first got pregnant with my daughter, my husband and I decided to have my ante-natel care at my local hospital as that was also where my Neurologist was based. Throughout all my pregnancies my medical team were aware I was on Epilim, and the advice my husband and I was given, was to carry on taking my medication and to increase my dosage of Folic Acid.
One day I saw on the news a lady talking about the dangers of Epilim in Pregnancy, how whilst pregnant it could affect the baby, which could result in the baby having a condition called FACS (Fetal Anti Convulsant Syndrome) I was speechless watching this. I knew there and then, the children had this condition. It was as if a light had been switched on, everything the lady was saying was exactly what I had been saying for years. I rang the news immediately and was put in touch with Janet Williams. To cut a very long story short after months of tests, Drs appointments my children were diagnosed with FACS SYNDROME – the medicine I was prescribed HAD affected my babies. As well as the diagnosis of FACS, my children also went onto obtain diagnosis of ;
• Facial Dysmorphic Features
• Cerebral Palsy
• Valgus Foot
• Speech & Language Delay
• Autisic behaviour/Dyspraxia
• Noise Intolerance
• Deafness and more
In November 2013, along with Janet Williams I Co-Founded FACSA – a parent/family support group for families affected by Epilim and other Anti Convulsant medicines. At the same time we also started campaigning in Government and have since been named as Government Campaign Group for Epilim (IN-FACT)
“It wasn’t until I got to middle school or high school that I had the cognitive development to understand that I could bring this state on deliberately,” Holly says. It was as a teenager that she began regularly skipping meals.
Louise, too, is ultimately grateful for her diagnosis because it proved that she wasn’t defective, just different. It also helped her understand why her eating and exercise rituals were so hard to break. Instead of completely eliminating these routines, she worked to develop new ones that would enable her to reach a healthy weight, which she did last year for the first time in 40 years. Life remains difficult for Louise, due in large part to her autism and severe anxiety. But the eating disorder she once had, at least, is no longer part of the problem.
Care and Treatment Reviews (CTR) have been developed as part of NHS England’s commitment to transforming the services for people with learning disabilities and/ or autism who display behaviour that challenges, including those with a mental health condition.
The CTR ensures that individuals get the right care, in the right place that meets their needs, and they are involved in any decisions about their care.
NHS England has published final CTR policy and guidance (CTR policy and guidance in easy read also available) that outlines what a CTR is, the required standards, and how they should be done, along with a toolkit for commissioners and easy read leaflets for people with learning disabilities and/or autism, and their families or carers.
Read the full story on the NHS England website (opens in new window)
Autism and Intensive Interaction - A new training DVD from Phoebe Caldwell (clip) - link to YouTube video
A couple of weeks ago, the website called The Mighty,published a since-removed post called meltdown bingo. The post was a pejorative “game” aimed to make light of children and adults experiencing sensory and emotional overload resulting in a meltdown. As some of my acquaintances pointed out, having a meltdown is not enjoyable for the person having the meltdown. As a parent who has watched children go through meltdowns, it is also no fun for the family around a person having a meltdown. Heck, I’ve had meltdowns myself, and they are no fun for me either (although I have more ability to temper my behavior than my kids do).
Since that time, the disability community has issued a sharp rebuke to The Mighty, with#CrippingtheMighty. The Mighty is run by non-disabled people, is rich in inspiration porn, and contains an inordinate amount of material submitted by people who purport to speak for us. Nothing about us without us is clearly not a principle held by The Mighty. A number of blogs and posts have surfaced from disabled people issuing a rebuke to parents of disabled children for speaking for their children. A number of blogs and posts have surfaced from parents claiming they must speak for their children. Missing from these posts is the perspective of disabled parents who have disabled children.
I have 17 years’ experience of supporting people with learning disabilities, older people and people with mental health problems, working both within private and statutory organisations. I am a highly motivated, strongminded person with recognised work experience within and around successful corporate structures and an excellent blend of qualifications. I have vast knowledge of Person- Centred practices and have worked to create Person -Centred teams using team planning and training. I have skills in graphic facilitation and have designed and delivered training to professionals from both statutory and voluntary organisations. In my current role I am involved in the development and creation of a registered housing association, incorporating a person -centred ethos in tenant support.
I can help you with supported housing advice, personalised care, services for people who challenge services, staff training, person centred planning.