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Original poster

My disabled son was sectioned and sent to the other side of the country AMA

42 replies

Homesnothospitals · 30/07/2018 17:55

We had 2 to 3 hours notice. He’d never been away from me for more than about 2 days before. Now it’s a 2 day round trip to see him (we leave at about 9am on a Sunday usually, get back home about 9pm on the Monday).

Happy to share his story. Long time Mnetter but his story needs to be anonymous, so please don’t out me.

OP posts:
Nicpem1982 · 30/07/2018 17:57

How did this happen? Did you have a say in where he would be placed? How is he now?

Original poster
Homesnothospitals · 30/07/2018 18:31

The short answer is it happened because his previous providers were taken over and the new owners served him with extremely short notice (less than a month) and made him homeless.

We had him home for a bit to give the LA and CCG time to put together an emergency care package but that failed on the first shift. We couldn’t have him home long term because we have other children who had to move out while he was home.

He went to school one morning, was sectioned that afternoon and bundled into a bus with 4 strangers at about 6pm arriving in the hospital in the middle of the night. He is non verbal and had no idea where he was going.

We had no say at all. We could not have refused the sectioning (we asked).

Now? He has been taken off all his diazepam and he has been treated for the constant nausea he has had from risperidone for nearly 4 years. So he looks healthier (the hospital psychiatrist is actually very good and listens and acts and treats him holistically).

He is distressed at being away (it’s been 10 months now) and constantly signs to go home. Now. He finds only seeing me every other week very difficult.

The hospital have said from the beginning he doesn’t need to be an inpatient.

OP posts:
Original poster
Homesnothospitals · 30/07/2018 18:33

Previous providers were 5 miles from home so I saw him most days, took him out, bathed him etc. He was at home until he was 17. With previous providers for over a year. If they hadn’t been taken over he’d probably still be there.

OP posts:
Livinglavidal0ca · 30/07/2018 18:37

What’s his disability?
Sorry this has happened to you OP, it is a level of difficulty I hope to never understand.

Original poster
Homesnothospitals · 30/07/2018 18:45

He has severe autism, severe learning disabilities, is non-verbal and has epilepsy.

I do some work for NHS England now in hospitals like the one he is in. Unfortunately there are far too many people in his situation. I expect the numbers to increaae soon as the cuts bite (and it’s bonkers - it costs more than twice as much to have him in hospital, rather than in his own home).

Some people like him spend decades in hospitals.

OP posts:
LoveProsecco · 30/07/2018 18:56

That must be so difficult seeing him so little. Is it possible to move closer? What age is he and do you have other DC?

Original poster
Homesnothospitals · 30/07/2018 19:04

No we can’t move closer we have two other children in their teens. He is a young adult (so we get no say in anything, the state can do what they like with adults without capacity) although we are trying to get deputyship at the moment.

The plan is for him to come back to his home town. He shouldn’t be locked up or an inpatient anyway.

When he was sectioned we were told he would be 3 months to allow the community team to get organised. Ten months later he’s still there. The biggest problem is accommodation. Housing is a huge issue. We have providers. It’s the house that holds people up for years.

OP posts:
CoteDAzur · 30/07/2018 23:08

I think I know who you are. I'm sorry to hear that your DS was sectioned & moves away from you. Best wishes for him & your legal efforts Flowers

Treasure114 · 31/07/2018 17:27

This sounds terrible for you Sad
Was he in a residential placement at first or was it a package of care at home?
Is what's the delaying the discharge home the fact that a placement for him can't be found?

Original poster
Homesnothospitals · 31/07/2018 18:28

He was in residential - but in a flat, so a single service unit. He moved in there at 17 when he needed 24 hour 2:1 care. So when they booted him out he lost his home as well. It was 5 miles from us so I saw him most days then.

We have a provider now (have had them on board since November!) They’re wonderful. Small, specialist and not a hedge fund in sight. Unfortunately being small they don’t have accommodation. This has been more complicated by him needing a 3 bed. (Needs a sleeper’s room and a safespace as he hits his head when distressed)

There is a solution - which would be a bit outing so I won’t say it, it’s just slow. It’s also costing the state a lot (although less than half the cost of keeping him in hospital for another year - yep the hospital bed is quite a bit over 600,000 a year - so buying a 3 bed house for him to rent is a bargain I guess). We got nowhere on the housing list as being a young single man he can supposedly sleep on a mate’s sofa somewhere - they don’t quite have the concept of young men needing 24 hour 2:1 care.

The hospitals that take people with learning disabilities are nearly all private btw. So that’s a lot of NHS money straight into private company pockets.

OP posts:
Treasure114 · 31/07/2018 19:04

The whole situation is so messed up, from the sounds of it!!

Does the housing register not take into account things like LD?

What do you mean about hedge funds? Are some care agencies owned by hedge funds?

Treasure114 · 31/07/2018 19:06

I am v glad that you seem to have a solution now though Smile

Ihopeyourcakeisshit · 31/07/2018 19:11

I have no questions currently as I'm so horrified at your situation.
Wishing you all the best with everything, I sincerely hope you get things resolved sooner rather than later.Flowers

PurpleBeachTowel · 31/07/2018 19:39

Have you been in the news? If not there is another family in the same situation.

Justanotheruser01 · 31/07/2018 20:51

Im just so sorry op. And im so so angry that in 2018 this is happening. Your boy deserves every bit of help, best wishes to you.

endofthelinefinally · 31/07/2018 20:59

Everything privatised now prioritises profit and shareholders.
It is only going to get worse.
OP I am so sorry you and your family are in this awful situation.
Flowers

MamaMumMama · 31/07/2018 21:14

Op so sorry to hear about your situation. My SIL sounds a lot like your son. She's been in care for the past 10 years now and has been turned out of 4 homes now with 4 weeks notice. Had to go into some hellish temporary homes whilst waiting for new providers to bid for her. The thing that seems to be the problem is the social workers and care homes seem to just look at tick boxes E.g learning difficulties ✅ autism ✅ epilepsy ✅ and the money involved (£16k a month) and want to take her on. Only when she gets there do they realize this person needs more care than we bargained for and after a year or two of trying to make it work they evict her. The place she's in now is her "own" house not on a site or development and she has a tenancy agreement so hopefully if they ever close or change management and she has to leave she'll need more notice given before they can evict her so hopefully she wouldn't need to go through the disruption of emergency care and no settling in periods. Hope they find him somewhere close by soon 💐

worrymachine · 31/07/2018 21:39

OP,

I just want to let you know that you are not alone . I have a young adult son who sounds similar to your son. My heart goes out to you.
I hope things work out for your family .

Original poster
Homesnothospitals · 31/07/2018 21:42

No, not in the news but there are lots of us in similar situations.

Care is becoming corporate - there are a number of large companies backed by hedge funds that run a huge percentage of learning disability provision now. There have been academic papers concluding that people with learning disabilities are commodities now.

Mama that sounds about right - ds is lucky in that his care is half health/half social care funded - that makes it easier to get a sensible package. Anyone is that only social care funded will be struggling to get what they need - LA’s are cutting budgets eveywhere.

OP posts:
Original poster
Homesnothospitals · 31/07/2018 21:43

And thank you all

OP posts:
Original poster
Homesnothospitals · 31/07/2018 22:32

Oh just to add - even providers such as Scope have now sold their homes/day centres to a hedge fund backed brand new corporate.

www.civilsociety.co.uk/news/scope-to-transfer-it-services-to-private-healthcare-company.html

I’m not particularly convinced by Scope banging on about the new provider having a track record blah blah blah. The corporate it transferred hadn’t even existed for a year at the time of transfer.

As the academics found- people with (learning) disabilities are commodities.

Most of the hospitals seem to frequently change hands from one corporate to the next. Experience in mergers and acquisitions is more valued at the top than experience in care.....

OP posts:
EssexMummy123456 · 31/07/2018 23:02

Also very sorry to hear this and I hope you get a good resolution quickly. I wondered why they haven't moved your son closer to home as / when spaces come up that are closer, or don't they?

Also (and I think I know your previous posts) if you have any advice generally for mums (like me) of young children with classic autism / learning difficulties who are very worried about their future.

Original poster
Homesnothospitals · 31/07/2018 23:37

It’s quite difficult to find spaces to move hospitals (I now work in the area as well, so see the other side).

They did suggest looking at a hospital about 4 hours away, but ds was settled by then and 4 hours would still have been too far to come home for day visits (the only type that would be allowed). I was also reluctant to move RC (responsible clinician - psychiatrist) as I really like ds’ and most are not as good as him. Ds has had his meds reduced/removed in hospital and that is very unusual. It can be much more common for people to end up on far more. Also ds’ RC wants rid of him (in a nice way) and wants him back in the community. There is no battle with the hospital to get him out. If we moved hospital there would be a risk he could escalate or the hospital could be very risk averse and we could end up with a battle on our hands. His hospital also take him off site pretty much every day - that is also unusual, and ds would not cope without that.

We were offered local step down (sort of half way houses) but one wasn’t quite suitable and the other is run by his old providers. We thought they were joking when it was suggested! When it became apparent they were not we did several versions of ‘over my dead body’. I don’t actually believe the old providers are safe (have reported this through appropriate, official channels) so there is no way we could let him go there.

In terms of advice I guess just don’t think too far ahead. Ds’ plans at 14 are very different from the reality now. His life was great at 14 But I have seen things go the other way as well - and get much easier. Also, alls always talk to other parents to find out what the local options are. It varies so much from area to area.

Also if you can it is worth building good relationships with the local team. We had a great relationship with children’s and one of the hardest things for me was that this all happened right as ds turned 18 - so the adult team didn’t know us. The old providers gave the team inaccurate information about me, and said I had been doing things I had not - which was incredibly stressful. Children’s would have known it was rubbish (SW would have rang me and said ‘er what’s all this about?’) but the new team didn’t know me. It made me feel very vulnerable.

We have built up a positive relationship now, and that does help. I don’t always agree with them but I think we work with mutual respect.

OP posts:
Original poster
Homesnothospitals · 31/07/2018 23:38

Oh and my other advice would be to take them surfing :)

It’s a good answer to all problems Wink

OP posts:
Dovesfly · 01/08/2018 08:37

Since you had no say does that mean you didn't have deputyship or legal guardianship over your son? Or did this happen despite you having the legal responsibility?

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