spose this is aimed at anyone working in the system really, although anyone with any experience is welcome to chip in.

a few of you are probably aware of my teenage lads situation. hes been diagnosed with paranoid scizophrenia and psychosis. this is following a period of drug abuse (legal highs, weed, and injecting plant feed). before that he had a traumatic experience where he had to have quite a bad operation and could possibly have died. he blames that, we blame the drugs. who knows, and its probably not important anyway, hes where he is for whatever reasons and we just need to work on getting him a decent life.

we (my wife and i) had an awful few years dealing with it at the time and its pretty much broke up the family (youngest lad also doing drugs but has emerged unscathed. for now anyway, he still does weed).

anyway, to the point. my lads been sectioned a year or two now, and has been to various different places, the MHU of county hospital, ‘halfway house’ type places, back to MHU when he deteriorated, and up til now to an offshoot of the hospital. its a lovely modern building, lovely staff, a canteen where the patients can work and just a chilled atmosphere. this is the only place where we’ve been happy with him staying.
hes far better than he was, and yesterday he was discharged, still on a section, but with freedom to come and go, take his own meds etc. a step in the right direction we thought. until we visited him last night that is. hes been discharged to another ‘halfway house’ type place, but its even worse than the first one he went to.
now i know my lad needs to be in the system somewhere. he cant look after himself and needs care, but he can pass for ‘normal’. he has his strange habits, he wont clean his teeth and wont remove his cap for instance, but you could meet him and not know there was a problem. where hes been put now, the patients are waaaay more poorly. the sort that you see shuffling down the street, mouth open and dribbling, poor sods. when we visited last night they shout at you and are just ‘not with it’.
the place is dirty and smells, and its just an awful atmosphere. we were gutted when we left, as we’d been so excited at this new step in the right direction, but just feel like its actually a step backwards.
as i said, its worse than the last halfway house place he went into, where he just got poorlier and eventually had to go back into MHU. his social worker admitted that was a mistake putting him there, so why has he done it again, but worse??

so my question to anyone with knowledge of the system is, can we do anything as his parents? hes 19 so an adult in his own right, but we have been kept in the loop and been welcome to give our views on his treatment so far.
FWIW my lad isnt complaining, altho we’re certain he wont like it here after a while, as he liked the other place to start with too. we’re scared of him going backwards, getting poorlier, and ending up back in the MHU and the whole circle beginning again.

i realise money will be tight in the social services sector, but is this the best he can get? is this a normal next step for someone who’s improving?

thanks for any input, itll be much appreciated.

Is this halfway house allocated under section 117 of the mental health act?
If so, this will be the NHS/social services doing the bare minimum requirement under the law for aftercare.
If his condition is such that independence is not an option, he needs to be assessed by the local authority for the allocation of a personal budget, which will at least allow a bit of choice.
If he hasn’t already got one, get him an independent advocate.

No personal experience but have you spoken to an advocacy group such as Young Minds or Mind they may be aleto help you build a case for changing his care plan

Is this halfway house allocated under section 117 of the mental health act?
If so, this will be the NHS/social services doing the bare minimum requirement under the law for aftercare.

yes, i think ive seen 117 on his documents. ok so its the bare minimum, is there anything better for him that just costs more then? does everyone get the bare minimum these days?

If his condition is such that independence is not an option, he needs to be assessed by the local authority for the allocation of a personal budget, which will at least allow a bit of choice.

i would say that independence is an option, its just us that know he cant cook owt, clean a house etc, but we’d do our best to help him. id rather he was independent with our help than ‘assisted’ in a place like this.

If he hasn’t already got one, get him an independent advocate.

No personal experience but have you spoken to an advocacy group such as Young Minds or Mind they may be also help you build a case for changing his care plan

havent heard of advocates before. how does this work then? ill certainly look into that. altho like i say, hes happy enough at the mo, its us that think he shouldnt be in a place like this.

thanks

You could look at the CQC report for the place he’s in. Sounds like he has lots of negative symptoms (poor self care etc). Who is his care co ordinator? Is he compliant with meds? Oral or depot injection?

How long has he been in the system? I’m surprised he already has a dx of paranoid schizophrenia. You usually have to have had a fair few admissions before they drop the drug induced dx in favour of a more formal one. Is he with a community team? I would hope bring 19 he’s been picked up by an early intervention team.

There’s lots of places that can home people who are not unwell enough to be in hospital either formally (sectioned) or informally (voluntary). Some are good, some less so. What level cpa is he on?

Some of the places I’ve worked at in the UK have one registered nurse on and a few care workers. It’s not ideal as sometimes you end up looking after 10 clients and the support workers too. I’d have a word with the centre manager or a senior nurse and perhaps organise a meeting with them and his community nurse.

Hope this is of some use… Again, happy to help out via email as best I can. I’ll be in my way back to UK soon as my father’s not well but will do my best to answer any q’s.

Similarish problems here, though not as far along. We’re likely to see our boy moved to a different rehab unit in the next few weeks.

Write or email your local Councillor for help.
And Good Luck

Unfortunately adult mental health care services can be a bit of a mixed bag, go on the mind website and get him an advocate. I’m not trying to undermine health and social services, they have a bloody tough job, but you’ll find an advocate very useful when it comes to understanding why decisions are made and finding better care options for him.

From working 6 years at a large long stay mental health hospital, this is what us staff predicted , lack of coordinated care, just so called half way houses, underfunded with no activities provided.

In the large hospital i worked at now down sized considerably, patients had a bed and meals, could work on the estate, had their own canteen, grounds to walk or sleep in etc, then the do gooders decided it wasnt right and said care in the community, the same people didnt want mental health patients living within their little community either.

no real answers, just try mind and mh charities for help and advice.

I would re-iterate aphex_2k ‘s advice. If he’s been re-sectioned, as family you can ask to be included in discussions around your son’s care/diagnosis. It may be that the diagnosis has changed since the lead up to the drug induced diagnosis. His Psychiatrist & mental health team should be agreeing a care plan with him & you as family, which can should include plans for his discharge & assessment for personal budget. But if he’s currently on a CPA (Care Programme Approach),good practice requires a care plan – do hope you & he get the help you require.
This is written by mrsdekadanse!

You could look at the CQC report for the place he’s in. Sounds like he has lots of negative symptoms (poor self care etc). Who is his care co ordinator? Is he compliant with meds? Oral or depot injection?

didnt know what CQC was so googled it. how would i see this places CQC tho?
his care co-ordinator will be his CPN i spose? he has one of those and a social worker.
hes pretty complinat with meds and is trusted to take them orally.

How long has he been in the system? I’m surprised he already has a dx of paranoid schizophrenia. You usually have to have had a fair few admissions before they drop the drug induced dx in favour of a more formal one. Is he with a community team? I would hope bring 19 he’s been picked up by an early intervention team.

been in and out of hospital for 4 or 5 years now. not sure about the community team but wife says yes he will be. never heard of an early intervention team so id guess not.

There’s lots of places that can home people who are not unwell enough to be in hospital either formally (sectioned) or informally (voluntary). Some are good, some less so. What level cpa is he on?

dont know. how would i find out?

‘d have a word with the centre manager or a senior nurse and perhaps organise a meeting with them and his community nurse.

a problem we have here is he doesnt like us getting involved. part of his paranoia perhaps? hates us talking to staff and tries to listen in when we leave etc. he doesnt allow us to be present at any meetings. “im an adult now, i dont need my parents to sort my life out”

Hope this is of some use… Again, happy to help out via email as best I can. I’ll be in my way back to UK soon as my father’s not well but will do my best to answer any q’s.

certainly is useful mate, thanks a lot, and best wishes to your dad.

If he’s been re-sectioned, as family you can ask to be included in discussions around your son’s care/diagnosis. It may be that the diagnosis has changed since the lead up to the drug induced diagnosis. His Psychiatrist & mental health team should be agreeing a care plan with him & you as family, which can should include plans for his discharge & assessment for personal budget.

as i mentioned, he doesnt like us being involved which is a shame, as my wife has a decent knowledge of his meds and different sections etc, and asks better questions than i would.

But if he’s currently on a CPA (Care Programme Approach),good practice requires a care plan – do hope you & he get the help you require.

wife says he will be, but we just dont know anything about it.

Write or email your local Councillor for help

its a thought, thanks. i spoke to his social worker yesterday expressing my concerns and he agreed with me. he says the problem is, he needs to be somewhere like this for 6 months before hes eligible for housing.
this all ties in with the whole family break-up thing, where we had to move closer to my job. we’ve left all our family back in Lincoln (we’ve moved to next council district 20 miles away), but the Lincoln council wont accept he has any family ties, cos his mum and dad arent there now.
he has his brother, his nan, uncle, auntie, 2 sisters (stepsisters, as theyre my daughters from first marriage), and 4 nephews and nieces but the council wont accept theyre close enough family for housing. so the social worker says hes having to put him in this place for 6 months to qualify for housing in the future.
id like to contest that, but dont know who with, or even if id be allowed to.

thanks for the advice so far, much appreciated.

I’ve worked in a high secure mental health facility for over 25 years and your sons reluctance to have you and your wife involved is very common. Try speaking to his social worker and his Doctor who is responsible for his care, also known as responsible clinician (RC). We use an advocacy service called IMHA, but they are regional and may not be appointed as your sons representative. Rethink are a very good service and are always happy to help, as well as the previously suggested. Ask what alternative medication is available as an option, I’ve seen patients living with very severe symptoms be discharged out to the community, following a change in medication and not return to services. I also see that patients with family support achieve a much higher quality of life and achieve discharge much earlier than those who are left to their own devices. I know it is sometimes difficult but you sound as if you and your wife are willing to offer the support required. Also try to see if there is a relatives support group in your area they can be a great help.
As for the CQC report into the current place of residence try speaking to the trust or directly to the CQC, the report should be public ally available, the advocates should also have a copy that you can have sight off.
Hope this is of help and please feel free to ask any questions, I can’t promise to be able to answer everything but will try to help as much as I can.
Good luck Diz

IMHA advocacy is available to anyone on a section. It’s who delivers it that will vary locally, Google should find your local people. If he is discharged from his section (even if on 117) he probably won’t be eligible although I thik this does vary area by area so worth checking. In any case the organisation who provide this should be able to advise you where else to try.

Does he have capacity (to decide to move to where he is now) under the mental capacity act? As he could get input from an IMHA – a different sort of advocate.

All the best to him and to you. As someone who works in this area I find it tragic when (all too frequently) families report that they feel like there have to fight for what seems like the basics.