The Core and Essential Service Standards are designed to improve the lives and life experiences of people with profound and multiple learning disabilities.
The Core and Essential Service Standards are designed to improve the lives and life experiences of people with profound and multiple learning disabilities.
Our practical resource, Top 10 tips for choosing a support provider, is now available as an Easy Read version.
This accessible resource is designed to be used by those looking to secure high-quality social care for themselves or for a relative or friend, helping people consider their options.
It provides important information and support for people to make an informed choice about their care, outlining essential questions to ask a provider, such as:
The original report can be accessed here.
The policy for Care and Treatment Reviews, also called CTRs, changed in March 2017. View the latest policy:
Key changes in the CTR policy These are the key changes in the Care and Treatment Review policy introduced in 2017:
Updates to the CTR policy
The policy for Care and Treatment Reviews, also called CTRs, changed in March 2017. View the latest policy:
<ul><li> View the CTR (including CETR) Revised Policy</li><li>
View the Easy Read Revised Policy </li></ul>
Key changes in the CTR policy
These are the key changes in the Care and Treatment Review policy introduced in 2017:
<ul><li>Greater focus on the quality of CTRs and the values which underpin them</li><li>
New measurable national standards by which CTRs are to be carried out</li><li>
Clearer emphasis that CTRs are for people with autism, as well as for people with learning disabilities</li><li>
A separate Policy Annex on Care and Treatment Reviews for children and young people and a change of name to Care, Education and Treatment Reviews, (CETRs) to ensure the young person’s learning needs are also considered, working with key people from education</li><li>
Changes in the frequency of CTRs to:
<ul><li>Every six months for people in non-secure hospitals</li><li>
Every twelve months for people in secure hospitals</li><li>
Every three months for children and young people in hospital</li><li>
Post-admission CTRs take place within four weeks of admission other than for children where this is within two weeks of admission</li></ul></li><li>
CTR panel to follow new key lines of enquiry template</li><li>
Greater emphasis on evidencing recommendations</li><li>
Clearer responsibilities and checklist for providers to gather the evidence required in advance and actively to support the process before, during and after a CTR</li><li>
Recommendations in CTR reports to name people responsible for carrying out each action by a given date, with a responsibility for commissioners to oversee a process of checking, resolving difficulties and ensuring that the person and their family is aware of progress</li><li>
Two new resources for the person having a review: one providing all the information needed in one booklet; the other booklet providing new tools such as a CTR consent form, CTR planning document, CTR feedback form and a template to support the person to record key actions to be carried out in the way they find most helpful</li><li>
New resource for experts by experience</li></ul>
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 was filmed
25 35 years ago (thanks for those who noticed it’s even longer than I thought, by ten years), and yet some of the voiceover could as readily apply to what we’ve seen and heard about the failings at #SouthernHealth in the last few years. People left in beds or on beanbags because no-one had the ‘wit or wherewithal’ to imagine a future for them, to support them, to see them (as fully human). Lives lived and arranged around staffing tea breaks (motivational tea party anyone). Incarcerated people doing everything they can to subvert the system (or just trying to communicate – next step PBS bootcamp).
In many ways I think we’ve got nowhere in the intervening 25 years, and that is our responsibility, each and every one of us who make up our crappy society with ideals of containment, paths of least resistance and a discomfort of the sight, sound, smell of difference.
So we pathologise, and label, and snub out any hope or optimism or belief. We create a hell on earth with no imagined future and a sort of living purgatory for anyone who is different and those who love them.
In the last six months, since Southern Health had the Mazars draft, a number of families have complained that they were not listened to. While Southern Health have been orchestrating their PR operation to get some good press and apparently transform their substandard
care death reporting for people with learning disabilities or mental illness, here’s what families with the most recent dealings with them, had to say:
‘I think lessons need to be learned all around, the communication has been terrible for us to phone nine times about our concerns, I can see there is a lot of people talking in circles and not facing up to the truth that there was not a crisis care package for her and that was one of the reasons for her not being here today’ Doris Cranmer’s family
‘Southern Health failed to take into account the very strong feelings of the family that Emma was a suicide risk, particularly as the Easter Sunday was a significant anniversary for her. as it was the 20 year anniversary of her daughter’s death and She had shown signs of severe mental stress and had discussed feelings of suicide with them. Southern Health ignored the family’s concerns and released Emma home with the guarantee of a phone call at seven o’clock that evening. The phone call never materialised and Emma tried to commit suicide four hours later’ Emma Connell’s father, Peter Stuart
This builds on previous incidents too, in 2011 Victoria Nye’s father desperately pleaded with Southern Health:
‘Her death sparked a top-level inquiry by health bosses into care given to Victoria and the decision to allow her to return home, despite the desperate pleas of her dad, Graham, who warned she would be dead within hours of her release’
Teresa Colvin died in 2013, and despite the lessons apparently learned by Southern Health by then:
‘The hearing heard that during her stay staff failed to tell her husband about the severity of two incidences where she escaped the unit and the coroner accepted that Mr Colvin should have been fully informed…. Mr Colvin insists that “the signs were clearly there” to indicate that she was at real risk of harming herself and believes that Southern Health NHS Trust, which ran the service that has since been closed, “fatally let her down”… I have heard nothing that gives me any doubt that the risk assessment and the quality of management of my wife’s care over the weekend of her admission was inadequate and directly led to her fatality’
The following year, 2014, Jason Kelly died while under the ‘care’ of Southern Health:
‘Even on the morning of his death Mrs Kelly says she pleaded to have her son sectioned under the Mental Health Act’
Like LB, Eddie Pearse was only 18 when he died. He too had crossed the magic invisible threshold into adult [non] services, that within Southern Health seemingly equates to completely ignoring any family concern or involvement:
‘Once he turned 18 his care was transferred to Southern Health’s adult team meaning his dad was no longer informed of the issues affecting his son and prevented him from taking part in sessions… as soon as they hit 18 they are considered adults, there is no transition… there should have also been a much better handover between the youth and adult mental health service. The paperwork was passed across but there was no meeting’
These parents and family members were all psychic it seems, prophesying what would come to pass and completely sidelined and ignored by staff and systems at Southern Health. Sara predicted what would happen to LB, her greatest fear realised 44 days after she wrote it:
‘The thought of him having a seizure, in a locked unit, unnoticed, has generated a new level of distress I can’t describe. I don’t care how old he is, and I certainly ain’t treating him like a child, but I want to comfort him, and keep a watchful eye for any further seizures. And I can’t’
Not only did Sara predict it, she did everything in her gift to make sure Southern Health staff knew and could care for LB. Sara spoke to staff, she called them, she emailed them, she wrote a blog about it (and we now know her blog was being monitored for reputational risk purposes) and still it was no use.
Despite all of the (false) reassurances about learning lessons, families are still ignored, patients are still just collateral, an inconvenience. The worse thing is that this plays out in broad daylight, not a sniff of accountability, nothing.
25 35Geeorge Julien/Mazars/Blog years since Silent Minority, our most vulnerable are as vulnerable as they ever were.