adult children with learning disabilities.

grannyactivist I know you are from a Social Work background and I can't tell you anything you don't already know, but I just wondered whether your inlaws have asked for a carers' assessment for themselves? I know such assessments are pretty useless as they do not usually result in services being offered, but they can sometimes highlight a shortfall in support and help to focus the professionals' minds on what is needed.

I'm sure you already know that one of your inlaws will also be the person's 'nearest relative' under the Mental Health Act which means that they have the right to request a Mental Health Act assessment, and to be consulted if they feel the situation is becoming a serious risk.

I do understand what you say about the system not working, mental health is the one field where Social Workers do not seem to be expected to practise in the way they do in other service areas, and it can be very frustrating.

Unfortunately the nearest relative is a twin brother who also suffers from schizophrenia. My in laws are the twins' foster carers (for more than forty years), but literally 'don't count' in the eyes of the law. Sadly, the only thing that gets anything moving is a threat that 'after the event' there will be a public inquiry and our concerns will be on record.

Sorry grannyactivist I misunderstood the situation; I thought that as carers they could 'trump' any other relative, but I know it depends on the interpretation of who is delivering care and who actually lives with the person. What a horrible situation for all of you, and such a worry. I do hope something will be resolved in time

I think that's a really good tool to use Granny-a. Don't be sad about using that.

Can't sleep - I've had a horrendous time recently, battling to get help for my relative and eventually called the 'out of hours' emergency number and the police last night. There was, in my view, a potentially very serious situation and the best they could offer was to suggest that he contacted his GP and Community Psychiatric Nurse the next day. So today he tried to do just that. His GP is on holiday this week and his CPN is part-time and doesn't work today. So, I have spent virtually the whole day on the phone trying to get him help, in order to prevent him having a total meltdown. Finally, at almost 11.30pm tonight, he couldn't take any more and called 999 and asked for police and an ambulance to come and get him before he did something harmful. The ambulance has taken him to the local hospital, but he really needs to be admitted to a psychiatric unit, otherwise I'm afraid he'll be discharged tomorrow without a proper assessment. Mental health services in this country are a disgrace and I'm feeling furious.

Grannyactivist - can he be sectioned? At least he was aware of the dangers of his situation so he must have some insight into his own problems.
I hope you have better news today.

My sympathies grannyactivist . My close friend in the US adopted 3 toddlers, all of them have had problems in their adolescence but one, who was exposed to a lot of drugs in the womb is heartbreaking. She has great social skills and you would not quickly realise that her intellectual level is extremely low. She has little concept of risk and would go off with a man who offered her a lift in his car etc. Recently she also became mentally ill and they had a similar battle. Mental health not well equipped to deal with learning difficulties and vice versa. They got her admitted in the end (she was threatening to kill her sister) and she is currently in a secure setting and much improved. But she is only 19. What does the future hold for her - at her best she is a sweet and sociable girl. They have already spent a fortune on legal things - getting legal guardianship of her etc.

Aaaargh! Relative has been discharged! Until, or unless, he actually harms himself or another I don't think he'll get the help he so desperately needs. Just had a conversation with his very nice CPN, but for reasons of confidentiality she obviously can't tell me anything. She was very surprised to discover that the family is in constant contact with relative as he'd explicitly told her that he hates us all and she'd been led to believe there was no contact - and equally surprised when I told her that he told me he hates her too; she had thought they had a very good relationship and that he trusts her. I think she's just beginning to get the picture: he's severely mentally ill and out of touch with reality!!!!!

grannyactivist did he have a full mental health act assessment last night before discharge or was he just seen by the crisis team (or equivalent in your area)?

I think you said before that his nearest relative is his brother who also has mental health problems. Could you speak to his cpn about getting his nearest relative displaced and another one appointed? Or would his brother agree to transferring his position to another relative? If your relative had an assertive nearest relative that person would be in a strong position to press for action and would also be party to any assessment. Good luck, I agree about the state of mental health services.

nightowl thank you for your interest and advice. Having spent two solid days on the phone I think I have finally made some headway. There has been no MH Act assessment, but - having involved the police, hospital, GP, past and current care workers and the out of hours team and ensured that anyone who would listen got the message that I would not give up or give in - my relative is now (hopefully) going to receive the care he needs. Today I was able to speak directly to his CPN and my relative says he will give the CPN permission to discuss his care with me. This is a HUGE breakthrough if it happens because the family haven't had any input for five years.
I'm an assertive, articulate ex-social worker and my father-in-law provides training for mental health workers; we both know the system inside and out and yet it has been impossible for many years to get the help and support needed for our relative. What chance is there for the people who have fewer resources? I really do feel desperately sad for those carers who have to battle through the mental health quagmire without help and support.

grannyactivist I feel for you. I am from a similar background and have also tried to fight my way through the mental health minefield on behalf of a relative. As you say, what hope is there for others with fewer resources? I'm glad to hear that you are making some progress, however little

I will say right at the beginning - I am totally in agreement with granny about the lack of sufficient services for people with mental health problems, these are so complex and my daughter in her line of work often has to cope with people suffering in this way; my sympathies are with all the folk who try to sort out the problems. However, my original thread was for people like my son who have learniing difficulties, quite different. This is not meant to detract from granny's problem, just a point which I feel strongly about. Both groups need help to come to terms with their problems, but the problems are different and need to be treated so. United Response, the organisation which has provided excellent care for my son for 36 years now, also works very hard to re-habilitate those who suffer from mental illness and in some cases has been very successful, but I think it just a case of feeling the way with individuals, everyone being different. I do so hope this comes over as sympathetic and not critical - it is just a comment.

ga Delighted to hear of your recent breakthrough in discussions with the CPN - I know how much that means to you.

PRINTMISS You are so right that the two groups need to be viewed and treated separately, and your point doesn't come across as critical at all. In my line of work I come across other professionals - for example the Police - who frequently confuse the two conditions, and it must be very frustrating for relatives such as yourself. I think grannyactivist's relative has both learning disability and mental health problems (correct me if I'm wrong ga), which is not unusual and presents particular challenges for professionals and relatives alike. I agree completely with your last point about treating everyone as individual.

Hi PRINTMISS no, I don't for one second think that you're being critical. Part of the problem with my relatives is that they DO have learning difficulties which are never even acknowledged, much less addressed. Like you my in-laws made decisions for the twins when they were younger; including the provision of housing and helping and encouraging them to live lives as independently as possible. A few years ago my relative was living in supported housing where he was receiving help because of his learning difficulties, but since his mental health has deteriorated his LD's have been completely overlooked. The problems we are experiencing now are exacerbated because learning difficulties are not being taken into account by the health professionals.
The mental health service is stretched to breaking point with too few workers doing too many jobs. I applaud the workers, but the systems could have been devised by Joseph Heller - with people being repeatedly caught in Catch 22 situations.

A quick update here folks.
Relative has refused to permit his CPN to discuss his care with me;
has his phone permanently switched off;
hasn't kept CPN appointment;
continues to act erratically; (currently taking the plaster off his wall)
- but the Mental Health Team assure me that everything's okay really!
Aaaaargh!!
Will take the five hour round trip to visit him tomorrow and try to gauge how he is at first -hand, but I confess to being weary of trying to work my way through an unworkable system.

Ga my heartfelt sympathy is with you,I am fully aware of the lack of help for MH issues,E's father is a paranoid schizophrenic,and our situation occurred through one of his psychotic episodes,assessments by different eminent psychologists accredited in their work couldn't agree as each was presented with a different character.Under a MAPPA arrangement he still couldn't be made to take his medication or comply so he was left after his release from prison,and his tag removed to do whatever again.He also has very low intelligence which is covered by his cunning ways.....I am able to empathise as it ai always someone else's problem ie..doctor,social worker,police....and nothing is done to help,even when a tragedy has occurred
I will put for you but it dosent express how much I feel for you having been through this minefield myself..none of the emoticons say it all adequately and will be thinking of you today,please let us know how you are when you come back....love nelliexxxxxxx

Just arrived home after a very long day. Didn't get off to the early start I was hoping for and the trip to Cornwall during a sunny August Saturday was an exercise in motoring patience. Took more than four, instead of the usual two and a half, hours to get there.
Hoping the shock of having us turn up out of the blue will encourage relative to switch his phone on once a day to hear and respond to messages. Too tired to think straight now, but relative has psychiatrist appointment on Monday and if today was anything to go by the psych should section him asap - but he won't of course! Your description of presenting with a different character is spot on Nellie.

So frustrating for youga will you learn of the outcome of tomorrows meeting,and if he has been hopefully for you,and your relative sectioned,so that he can get some help and you get some support....please let us know.....and good luck with the potty trainingxxxxxxnellie

Just returned home from a lovely week's holiday in Cornwall; we had hoped to call in on our relative who has massively deteriorated in the past few days, but events overtook us and he has finally been admitted to hospital.....in Hampshire!! Would you believe there is not one single Mental Health bed in the whole of Cornwall, Devon or Somerset? So a private ambulance, with nurse, made the eight hour round trip to collect him and he is now in a private facility - being paid for by the NHS. I am scandalised and relieved in equal measure.

OMG! I can`t believe that there are no mental health beds in Cornwall, Devon or Somerset.
What a nightmare this must be for you. God help any of us living in Cornwall with the same problems.

At least you know that your relative is safe.