From Bromley to Devon via Stoke

markneary Assessment and Treatment Unit (ATU), Autism, Planning to leave an ATU, Robert, severe learning disabilities, Support Plan

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I am writing on behalf of my son Robert who is currently being held under a DOLS at Ashley House in Stoke on Trent.

Robert is a 28 year old young man with severe learning disabilities and autism. His needs are complex and he requires specialist care.

We found Robert a lovely residential home which was perfect for him when he was 18. Unfortunately it was in Dorset, a long trek for us to visit so seeing him regularly was restricted but overshadowed by the fact that he was so well placed there.

Unfortunately the family run home was taken over by ACH homes (now in partnership with Regard group) and too many changes took place. Staff left, routines changed and it became less and less of a home and more and more like a business.

The last 2 years Robert became depressed and very anxious and naturally his way of expressing this was through lashing out. More and more restrictions were put on Robert as he was considered a risk to himself and others.

It was a catch 22, the more restrictions applied, the more frustrated and anxious Robert got until it all came to a head.  Robert attacked his key worker and the police and ambulance services were called and Robert was sectioned and taken to a high security psychiatric hospital in Poole.

What I thought would be an overnight stay turned into weeks as he was made officially homeless.

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The hospital was a terrifying place for him. He was in an awful state and again lashed out and attacked members of staff.

Despite the hospital desperately trying to liaise with Bromley to get Robert out and homed asap, Bromley failed to offer any alternative. The situation became desperate for the safety everyone so staff took it upon themselves to move Robert to another hospital in Stoke on Trent.

Robert has now been there over a year. Despite endless meetings with Bromley social services and staff at Stoke, Bromley are still failing to provide the care and permanent home for him.

We had an offer from the Burgess Autistic Trust after they had done an extensive assessment on Robert, but Bromley would not entertain the idea as they were too expensive. This home would’ve been ideal for Robert, and it was only 2 miles from my door! He needs his family. He has been deprived of regular contact with us all for over 10 years and now a further 15 months.

Bromley seem to find it acceptable to be getting care homes as far as Devon, to be assessing Robert for potential placements when all his family are in Bromley Kent!

He is over 200 miles away from us, and every visit so far has been a 9 hour round trip  ( taking traffic into consideration ) How is this acceptable?? Robert craves to be near his family and his life would benefit from regular contact.

With little knowledge of how to fight this appalling situation we have started a petition in hope of being heard.

Something has to be done. My son is being kept in a psychiatric hospital for having special needs and being homeless.

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Bromley council should be ashamed of themselves. They have offered me no support and have only been good at keeping me in the dark.  My only contact with them is via Tony Hunt (senior care manager) and communication is often frustrating. He is often hard to get hold of, and just tells me that they are doing all they can, which is what exactly??

I made an official complaint to head of social services and in response (several weeks later) i received a generic letter of apology but not specific to my case. I have contacted the media and the local paper have published an article this week.

My only comfort is that i know Robert is safe and happy. The staff are great with him and he slowly returned to his ‘old self’.  But, it is a hospital.  He needs a home and his family.

I have now, once again with the help of the support group, found a lovely place for Robert to live. It is only 20 miles from our home & perfect for his needs.

The provider’s have completed an assessment on Robert and have offered him a place.

Are we delighted with this news? Well, my LA have announced that the place is a “contender” but not to get my hopes up as they have to consider other options. Other options such as……? There are no other contenders, besides their Devon preference. No other offers, unless they are keeping something from me. In any case, it’s the place where Robert wants to go.

I don’t understand why, when the hospital wants to discharge Robert, why are the LA not pushing this forward? It makes no sense other than saving money.

How is this for irony? The hospital staff have signed and supported Robert’s petition! That is how much they believe he shouldn’t be in the ATU.

Please help me get my son home

 

35 thoughts on “From Bromley to Devon via Stoke”

  1. Another heartbreaking story, we have to stop this happening to our vulnerable people.
    My Daughter lives in a residential home which was picked by us as it meets her needs, she is settled and we are happy. The staff are wonderful there and we see her regularly both visiting her there and her coming to us for regular stays. Perfect people will say but we can never take this for granted and always in the back of our minds is
    “Will something like this happen to our beautiful girl” we are all to aware of how quickly things can change and this could be us.
    I will continue to support the families who’s story is not like ours and will do all I can to stop these things happening to our children. I truly believe everyone should and can live and be supported near to their family, it may take lots of planning and hardwork and seem like it’s more expensive but is what the child or adult deserve. These people have a life please let them live it and be happy.
    Please please sign these petitions, such a small thing to ask but could make such a massive change to these families. Thank you so much and sending love and best wishes to this family. I hope the situation changes soon for you all and Robert will once again be settled near to his family xx

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    • Thank you. Robert was happy for many years. Just took a few changes for it all to go horribly wrong sadly. Like you say, its a life long worry xxx

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    • Thank you for your support. Robert was very happy at his last home, albeit 3 hours away. But just goes to show, it only takes small changes for it all to go horribly wrong. Sadly its a life long worry xx

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  3. I am in the same situation with my son living 165 miles away from home locked in an hospital. Where is this home 20 miles away from Bromley which could be a suitable placement for your son as it could be for mine too?

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  4. Yet another truly sad story of families being torn apart by councils. Happy to sign your petition, and wish you all the luck in the world in bringing your son nearer to home.

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  5. Yet another example of the state’s ruthless, and selfish abuse, of our most vulnerable.

    There are so many, many victims, and it is getting worse, and will continue to worsen..

    The state, is using our money to destroy our children, the most vulnerable in society.

    Regardless of their statements, that this is ‘care,’ or treatment under MHA or in their ‘best interests’ under the MCA, it is, only, in the states best interests.

    Our children have been made cash cows, and far from helping them, the state destroys them for ever more profit.

    Processing and packaging them like commodities, and, as their ‘treatment’ and ‘care’ worsens their behaviour, more assessments can be made, to gain more money for that state, which now is increasing venture capital lead.

    Eventually, only a few monopolised private venture capital backed companies with different names, will own all our vulnerable, who will be hidden away, unseen commodities, merely a name, to justify huge profit from the public purse.

    This will continue, until parents and the vulnerable, are given rights which have been removed from them, by successive governments under the MHA and MCA, despite the Human Rights Act and UN Convention of the Rights of the Disabled.

    Please google finola moss and read my blog for what is happening.

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    • It’s the system! It’s all wrong! Everything is a waiting game! It’s an elimination process that simply let’s down those that need the support because of the time they take trying to oust the ones who don’t need it as much! It’s suppose do help those in need but those in need are crippled by the very system that’s supposed to help! Time is f great importance in cases like this and it’s time that’s stolen from the lives of those who need it!

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      • You’re right. It is absolutely wrong as these are emergencies, and waiting would never be accepted by people needing A&E, for example. It happens because we let it, because we’re in shock ourselves and don’t know what should be happening, and by the time we do, it’s too late. Or because services who don’t have any real therapy let time pass.
        It’s a minority problem, not commented on by the mainstream, but we can bring it to mainstream attention.

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  7. Well good to hear that you have the A&T staff on your side.
    I know the government are talking about combining Health and Social budgets which would reduce much of this foot dragging from LAs whilst Health fund inappropriate placements.
    Good luck in finding a place.

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  10. Please everyone, check for phsycical discomfort if your loved one is acting out, have their eyes checked at the eye dept of a hospital. They use special eye drops so can see everything. An optician does not do this. Too late for my son, an inoperable retina detatchment, so blind in one eye. This can be a slow process. Previously diagnosed with psychosis and hallucinating when infact he was responding to floaters and was petrified. Also check for a UTI as a urine infection can make someone feel absolutely wretched.

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  11. Hi,

    This shows that not all A&T staff are bad, as some are caring professionals and staff who know what is right, although the assessment and treatment itself has to properly designed while in an ATU.
    We can’t just pass people on when they haven’t a proper therapy plan or any normalisation happening.
    The LAs commission so many services that are not at all bespoke or expert, so community care ends up being out of the frying pan into the fire, or community placements start acting like ATUs.

    We need a totally different approach urgently as families can’t let this continue.
    An expert keyworker working closely with family, to make sure the person has the love they need, like all of us do, and to plan any care in the community to be as family-orientated as possible, as we all would want.
    Care is the word, used by LAs often to describe support plans that aren’t carried out, which they don’t monitor.

    The work parents have to do to monitor from a distance, supply information, go through complaints and concerns, etc., is colossal, and they are not paid for their commitment in any way, while commissioned services are often hugely rewarded financially for just containing a person and doing as much activity or less (in my case) than an ATU.
    Our ATU tried a bit, when the good people were on shift.
    It is happening in front of our eyes that parents aren’t able to tolerate their child’s continuous suffering, when it’s possible to do much better than this.

    The intimidating approach from LAs described here is no good for anyone, and hiding discussions from parents goes against everything that care is about.

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    • Totally agree with you FF2016. LA’s and the people who are controlling them have been democratically elected to serve ALL their citizens. That includes vulnerable people who reside in their boroughs.. The power given to them by us to manage our towns should, as in the medical profession, have the oath that while going about their business that they do no harm..

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    • In reality, parents cannot get involved in their children’s ‘care’, as they have no rights, and are ignored,

      The complaints procedure serves no purpose, and they know, they can easily and are, being excluded from even visits, on a simple decision, that it is not in their adult child’s ‘best interests’ that he sees his own parents.

      Court of Protection usually, in any event, deem most autistic/LD etc illegally incapable under the MCA of being able to decide who they have a relationship with, or see- even their own parents.

      This is what parents are now forced to live the rest of their lives with- worry, and deracination.

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  12. It is so sad and worrying that how much things cost is more important than the needs of a very vulnerable individual and their family. It is surely in this young man’s best interests to be closer to his family. I’m so saddened to hear your story and I know this is happening to other individuals too. I really hope you get the outcome you are hoping for. All the best to your son and good luck.

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  13. 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 mor Government support for autism.

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

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  14. Hi Jackie, can I ask if Robert has had CHC (continuing healthcare) assessment? This is an assessment completed by a nurse assessor who works for your local nhs PCT, with additional assessments usually requested from a social worker and a comminity learning disability nurse. This assessment will decide who funds the care of people and may aid in you getting Robert the home he needs, it will also give insight and assessments from learning disability nurses. If Robert does not have a community learning disability nurse then I would advise he is referred to his local team as they should be involved with people who are moving out of hospitals and can aid in making the transition easier for your son.

    Wishing Robert all the best for the future

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  15. Jackie, This is so terribly disturbing behavior fron the Council. These stories are so alike in the way families are cut out of people’s lives and totally disregarded in the decision making. How would some of these decision makers like to be separated from their nearest and dearest. Good luck for your future with Robert nearby. Keep the campaigning up as it will highlight the plight of some peoples treatment.

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  18. My heart goes out to you all. I pray that in the very near future Robert will be in the ideal home near to you all. Not only will it all give you peace of mind but will help Robert immensely as he will have people watching out for him that could be there in 10 mins. Just having his family visiting him a lot, and then maybe being able to go to their home for a weekend now and again would help you all.
    Take care and please give Robert a gentle hug from me. Xx

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  22. I’m an RNLD and have experienced a similar situation whilst working in a specialist crisis inpatient unit. Sadly the gentleman had no family to advicate for him so it fell to us. He had lived at home with his parents up to their death, when he then at a moment if crisis had to go into residential care loosing is lifelong home ontop of the loss of his mother. Within a couple of years he’d had numerous placement breakdowns and been shunted around several different counties. He had understandably become a very unhappy a confused person which on occasions resulted in him being violent to others. Which is where I first met him.

    We began working with him the the community when he was given notice to quit his placement. He was already under safeguarding concerns due to the financial exploitation by carers. We were put under pressure to section him and admit him to hospital. We assessed there was no clinical reason to do so. He was not ill. How he was feeling and acting qas as a result of a failure to meet his social care needs.

    He was risiding 100’s miles away from him home county and funding authority. It was their responsibility to find aplterbative accomodation and care. They failed to do so, and in fact completly failed to engage. Despite his placement extending hus notice period, twice. Eventually the placement gave a deadline. They were pulling out by 5pm on the following monday. The local authority although actively involved could not commission his care as they were not funding it. His home authority did nothing. So the area health commissioners informed us we had to look after this gentleman as a vulnerable challenging person in our area, homeless and without support. So he was admitted to our unit as a place of safety, having no clinical need to be in hospital.

    He remained with us for over a year. During which time we uncovered many serious undiagnosed physical health conditions (Sadly those conditions ultimately led to his premature death a couple of years after he left our care). But we encountered barriers to getting his physical heslth needs met as he could not register with a GP. His funding authority, where he was born and raised and consistently stated he wished to return to, refused to engage or make any effort towards finding him apropriate accomodation. They blocked our attempts to apply for a DoLS to legally recognise the restrictions we were having to hold this gentlenan under.

    Eventually with the support of our management, and also our local council authority we submitted a safeguarding referral naming his funding authority as the purpertrators of abuse, due to their neglect to meet this persons needs and their duty to provide his social care support. Our local authority agree to take the alert forward within the safeguarding process. And guess what – his funding authority turned up to the initial safeguarding strategy meeting with a prospective placement, which he subsequebtly moved to!

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