“Mum I Can’t Get The Words Out”

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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 and was admitted to the first unit aged 17. He 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 and 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 and 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 and talked about type of accommodation. But nothing has been taken forward, despite promises.

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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 and 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 and 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.

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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 naturally make Eden’s mum fear things could get worse for Eden .

In the Improving Lives review in March 2015 Eden is quoted as saying “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 he 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 to 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.

7 Days of Action need your help in getting Eden the home he so deserves after seven years away from his family.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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36 thoughts on ““Mum I Can’t Get The Words Out”

  1. And we call ourselves a civilised Society…… Shameful. If people read about this in the paper or saw it on the News as happening in another country, there would be an outrage and money would be flowing in to help. But this is happening all over the UK, here, right in front of our noses. Disgusting and disgraceful – the Powers that be know what needs to happen to make this situation change, so blinking well get on with it!

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    • Why O why is this being aloud to happen in our so called careing country, I feel our children are being used as guinea pigs in so called hospitals, we get no real support to help the family’s looking after the loved ones , Yet we have to pay thousands of pounds for respite care , For some ….carers to abuse our loved ones, now it’s locking them up and that’s the worst thing to do , They should be respected & given proper stimulating things to do…….NOT pump them full of medicines that send them crazy , They did that with our son and he pulled the lights down fussing all electronics & turn furniture over he was so crazy I sat on him he’d banging biting screaming it was awful to see this loving son turn like this, I will never again let doctors give drugs with out checking what it for, I feel so sick & sad for what I’ve been reading on this treatment Of our young vulnerable people, I just hope we can get something done very soooòn to help .kaye

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  2. This is so distressing to read! How much more distressing for Eden and his family to be living this nightmare day after day. The treatment is nothing short of barbaric and should not be tolerated in 21st century Britain. Something must be done.

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  3. Horrific. I grew up after WW2 when people first learnt about the Holocaust and said “How can such things happen & those in power allow them to continue or ordinary people know they are going on and do nothing? It must never happen again.” Yet this dreadful, cruel mistreatment and imprisonment of the Learning Disabled is going on today and money can be found to send round stupid propaganda about the EU, but none for proper care of the most vulnerable. All strength to this campaign. We need powerful friends.

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  4. Would Channel 4 take this on?
    I am flabbergasted that Eden has been, and still is, being treated like this. It’s like they want him dead 😦

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  5. From my little experience I would say swimming with animals, a computer, and a robot friend. SEE JANE ASHER who has great experience f this& knows EXPERTS IN THE FIELD.

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  6. braks my heart to here this let that boy hme to ppl that love him its like they r wanting to hurt him take this as high as u can a never give up that beautiful boy is counting on you you are his voice those sickos who think its funny to medicate this boy will never have any peace they will b payed back

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  7. So much positive about the foundation stone laid by Eden’s Mum ,housing and support providers waiting in the wings. Eden’s voice could not be clearer on the subject of home 1/10 for where I am now and a choice made for the future. Whatever piece of the puzzle is missing for H&F should be begged or borrowed. It is understandable that provision cannot be botched together but enough time has surely passed to finalize plans, Eden needs to go home.

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    • Eden needs to move nearer home his mum has arranged this and it should happen..not sure how they can justify stopping communication…..this is just plain cruelty….he will have challenging behaviour !! would not we all if kept from our family
      obviously a totall misunderstanding of autism right from the begining of this young mans care…frustration will cause melt down….and the psychiatrist who passed on the wrong info so he was isolated wanst shooting!!!!!! sory but so angry!!!

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  8. sounds like something from the1950s orphanages,(the book EVELYN written by Evelyn Doyle tells about her own and her 5 siblings experiences from 1956 after their mother left them with their dad who needed to work to keep them,. but in Ireland couldnt find work so trusted the authorities to look after his kids while he found work in England to save to make a home for them……. and the horrific treatment they all went through. the dads battle to regain his kids after he found out the state had consigned them to their care permanently. its a true story.
    nothings changed by sound of things.

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  9. Absolutely heartbreaking. I will do everything I can to help raise awareness. I have a few documents that I am sure are already known to people but might not be known to all. I know that they aren’t a be all and end all but using all the right tools might help.

    http://www.changepeople.org/Change/media/Change-Media-Library/Blog%20Media/Independence-Pack.pdf – An information pack that SHOULD be given to every person in an ATU. They should then be supported to complete it. I believe that, at the moment, it is given to people on a memory stick – not helpful if you don’t have a printer in your ATU.

    https://www.england.nhs.uk/wp-content/uploads/2015/10/ld-nat-imp-plan-oct15.pdf – Building the Right Support – the national plan for change

    https://www.england.nhs.uk/wp-content/uploads/2015/10/service-model-291015.pdf – the service model for commissioners to show what ‘good’ services look like.

    Make sure you are using these to record what should be happening and what is not. Use them to hold people to account.

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  10. Hope you find the right legal and media support to change this situation. Very sorry, heartbreaking story. All the best to this family who are clearly doing everything possible for a decent life for Eden.

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  11. A complete and utter tragedy that Eden is left in this place stagnating and sling his early life.,we have an important meeting for him in Friday. Let’s get this shared and out everywhere

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  12. I have been following and signing/ sharing all the petitions for people held in ATUs up and down the country. Having supported children with autism, I am both disgusted and appalled that people with autism are being treated this way.

    On 28th April Parliament is hosting a 3 hour debate on autism. Don’t miss this important opportunity to make your voice heard at ‘The Too Much Information’ debate by telling your story to your MP (if you have not done so already) and persuade them to push for more Government support for autism.

    https://act.autism.org.uk/ea-action/action?ea.client.id=10&ea.campaign.id=49942

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  13. So sad. Eden knows what he needs and has rights under the Equality Act 2010, which the system have denied and robbed from him. Using the ‘housing would be problematic’ stance is a ridiculous rational to keep Eden in what is effectively imprisonment. He’s being socially isolated and deprived of family support and hardly offered any quality of life there. His mum is extremely proactive and persistent.

    Since this is happening to a young man who can just about articulate himself at times..to say he gives his accommodation and care 1 out of 10 and that he wants to swim, be with animals and be with his mum and family..who he misses dearly (including his beloved dog who cannot cope with the long 13 hr journey anymore). What is happening to other people trapped in these barbaric, barren and Dehumanising conditions..who cannot speak at all and don’t have family support or someone like Eden’s mum to be their voice! All the health care teams involved, plus any health care ministers, local counciliors and MP’s need to take responsibility for this atrocity now and begin independent investigations, plus support Eden to live near the family he misses so much. It is time for these Victorian approaches to be stopped. Criminals have more care, consideration and support in rehabilitation into society. Bring Eden what he needs. It can and must be done.

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  14. A disgraceful abuse of power. This seems to favour profit over the human rights, of our most vulnerable children and adults. There is no sign of working towards recovery or rehabilitation. Eden was only seventeen when his mother requested short term respite services. Then her civil liberties as a parent and her sons civil liberties were swiftly removed. It has now been seven years: of watching her sons deterioration in his physical and mental health. His deterioration is indicative of what others are suffering. Some have actually died, whilst in the ‘care’ of an ATU, during their enforced and prolonged stay. Families are being torn apart and silenced, through fear of further detrimental actions being taken by local authorities. These crimes against humanity need to be brought to justice. Responsibility needs to be taken for the disproportionate measures taken and upheld. Edens family need to receive the appropriate support, initially requested and immediate steps need to be taken to reunite Eden with his family. End this suffering now. This is not an isolated situation, it is a trend, which is unethical, unprofessional and unacceptable.

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