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My battle to protect my brother
melody

01.03.12
I wonder how many other people have to battle with bureaucracy and officialdom, which overshadows care and compassion?

... I'm at my wit's end after fighting the system for 4 long years, in order to get my paranoid schizophrenic brother supported in a way appropriate to his very great needs. Thankfully, I've recently managed to get him into supported accommodation - but the 4 year fight has taken its toll on all the family.

It's a long and sorry tale of maladministration, failures of the mental health services and how they put pressure put on me, a caring family member (over 800 emails over 2 years says it all really)... He was at very real risk, to his physical health, mental health and personal safety. They let him live on his own with little support and where he couldn't cope. He could easily have died if I'd not fought for his survival.

His flat was unsanitary, he would choose not to put the gas on, preferring to save his money... so therefore he had no hot water to wash with, no heating... Whenever I would call round, he never had much food, if any. He had little care... what care he did have (an hour a day, if he let the carers in)...I fought hard to get! He was 2 and half stone underweight when the problem first came to light - his flat was a disaster waiting to happen. He smoked.. there were no working smoke detectors. I sorted that, as they failed to do so, but still no means of escape in a fire, no means of communication... shall I go on? The family stated that he needed to be in supported accommodation. It took 4 years to make it happen.

His condition is so severe, that most of the time he is quite literally on another planet, choosing his comfort zone of space and Apollo missions. His flat was mission control. But, he was deemed to have capacity. Big stumbling block.

The mental health services would support him in his unwise decision to stay in his flat, although he would say to me he wanted to move? Work that one out. Our family's concerns were that they didn't help him to make wise decisions about how and where to live in order for him to be safe and cared for. The human rights issue was brought up. I would argue that he has a human right to live a dignified life, in an environment appropriate to his needs...where he was adequately supported and cared for. That didn't happen for years. He was at very real risk and extremely vulnerable and frail.

The story is shocking and I have some awful tales of the incompetence of the system and how hard it is to be heard.

His case all that has and can go wrong in the system and how the end user can be put in very real danger.

It's a disgrace and I'm left with the fallout now that I've managed to get him moved. (He has a huge financial debt, due to their lack of help with budgeting). My health has suffered immensely. In fact, I've been under so much stress, I've become a patient too! How ironic is that? I was offered support for myself, which totally missed the point - it was my brother that desperately needed the help - if he had that, the pressure would've been off me. My feelings and worries are not validated with no reassurance given for the future. It's been an enormous struggle.

A word of caution here for anyone else taking the complaints procedure route. Good luck, for starters! If you complain, they investigate themselves and then eventually respond with their final resolution.. If you are still not happy, it is best not to respond back after that and enter into discussions, no matter how unfair you think it is. Go straight to the Ombudsman for advice. .The Ombudsman will only act if the complaint has reached "final local resolution" and won't act if anything is "ongoing".. I've learnt this the hard way when they delayed my pursuit of justice. It's a dreadful system.

I would hope that no-one has to go through what I have gone through...it's been hell...and that's been as a result of the so called caring profession / health services not caring.

I do think this is a very strong case that highlights so many flaws in the system and people could learn from it... I just wish it could all come out in the open...

The thing is, people are shocked when I tell them about our family's story, but... NOT SURPRISED... what a sad reflection on society that is. I've had to learn about management structures, psychiatry (well my brother's psychiatrist thought I must have a degree in it by how knowledgable I was)... complaints procedures, Power of Attorney and the Mental Health Act. All because the professionals were incompetent and sat back letting my brother live in a totally dangerous and unsuitable flat... on his own. I virtually did their job for them at times. We have an Ombudsman assessment investigation going ahead, well 2 actually, PHSO and LGO (give me strength!)... I cannot see how they can ignore our case. I've made enough noise - gone to BBC Radio and talked live on air, visited the Mayor and our MP, twice, contacted the Chief Exec... gone to no end of CPA meetings (all a waste of time as they didn't adhere to them)... had a social worker appointed to me (inprecidented)... a local maverick took up the cause for a while, oh and I went to local papers.... there's probably more, but I think I've made my point!

I just want to be his sister... not a person put into the role of "life saver" and crusader.

I'm in a state of mental exhaustion because of this and when people say how hard it is having a brother with such a condition, I'm afraid I rear up and say that I accept his mental health and who he is - he's lovely - not a problem. The hardest part is dealing with the professionals who hardly know him, who put him at risk, so then the subsequent battle to try to get him out of their clutches and into somewhere safe... thank God I got a result, but I cannot ever forgive them.

I find it hard to stop getting annoyed when I think about what I've gone through...

Trouble is, I know for a fact there are others like him. What about those who don't have someone so stubborn and persistent as myself, to fight for them? ... I fear for them and all those who fall by the wayside, or do not survive.. the silent victims, who probably never even make the statistics.

Sorry for going on a bit...I'll stop now!

Take care everyone