Help
I posted this in the "kitchen" forum, then realised maybe it should be in the siblings section too.. so I hope it's ok to repeat what I said.
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.
They would support him in his unwise decision to stay in his flat, although he would say to me he wanted to move! 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.
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. If you complain, they investigate themselves and then respond. If you wish to take it to the Ombudsman.. DO NOT respond back and enter into discussions, no matter how unfair you think it is... they will class that as re-opening the case and it will be "ongoing"...thereby preventing you from going to the Ombudsman. There needs to be a "final resolution" first. 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... people would be shocked.
Sorry, just had to rant......I'll stop now.
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My battle to protect my vulnerable brother Lack of care from the services
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#2
Tincan 
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Posted 01 March 2012 - 07:36 AM
this is a really extreme case and im sure its not the only case of its kind . the main thing now ur brother is in a safe environment and hopefully is getting the care he needs. its a sad story of like u say incompetence neglecting his care needs which they have a duty to provide to the best possible standard . its sad also the toll it has taken on those who are closest to him and on the front line in terms of having to deal with the day to day problems arising .it is not only the sufferer that is suffering. they should know that the starting point of recovery should be a safe housing, hygienic and not having to deal with outside pressures like harassment .i dont know why they failed so badly in his care when obviously it was evident to see he was in decline and not coping with his situation. the departments in health like social services and mental health seem these days to be fighting each other as to who takes responsibility for a person . they will pass the buck from 1 to another till that persons care becomes critical then decide to act in the persons acute distress . this is a little too late for most ppl and in the long run creates more strain on their pot of money because they av reached a point where av to admit someone or compound the problem like u a relative needs their "care". u cannot validate someones situation when that situation is putting people at risk ! establishments need to add a human touch its not all numbers and figure adding cpns care co ordinators need to remember this could be their brother or sister and treat ppl how they would like to be treated ie with dignity and respect! it is appalling how the system has failed so many in getting that vital foot in door how many vague diagnosis there are creating so much distress to people who do care and its all down in my opinion to poor professional who should of been mechanics not in caring trade and MONEY! caring is not just a job but a philosophy on how u lead ur life !
#3
RebelRebel
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Posted 01 March 2012 - 12:50 PM
Hey Melody and everyone else.
Sounds slightly similar to my experience, my lil bro (30) has schizophrenia and possibly Aspergers, he is also a graduate in Physics and the Universe with a 1st in his dissertation on quantum physics! his schizophrenia was largely trigged by taking lots of LSD, Ecstasy, MDMA and crack and all his delusions/trips have been about parallel universes. In 2005/6 he had taken so many drugs that he no longer knew what day it was or time of year, he also ended up eating food out of cans having his possessions stolen and living in a squat. In the end he called my mum from the pavement when he had been evicted saying he'd lost all his self respect. He hasn't been able to live on his own and every-time he's tried he ended up back at mums, sometimes sleeping in the shed. Since 2006 he's become violent, isolated and largely incoherent. He spent most of his time reading philosophy isolated in his bedroom, or with his fingers in his ears, keeping to odd hours and losing all sense of his personal care. On a couple of occasions he thought he was going to die and asked to be helped, this was met with with responses from the bizarre to the outrageous by GPs and CMHT professionals who should have known better than to judge a book by its cover and qualifications.
What we would hear a lot of was 'he's not that bad' because he's so intelligent and when he met with health care providers, he would make an effort to appear 'well governed' when we knew that he was so distressed and incoherent at home. Growing up he was a largely clam well mannered boy but since 2005 he has become very arrogant and angry with a terrible temper, he also refuses to see that he is somehow different or wrong. When we would discuss issues with the CMHT or health care providers they would often say, there is nothing we can do unless he gets sectioned. One doctor even advised my mother to provoke my brother into attacking her to get him sectioned!!
One occasion after a rough night my brother admitted himself to a ward but was so disorientated about his whereabouts, (equally the family had not been informed of his whereabouts) that he walked out of the ward and walked 7 miles down a major A road to get home without any staff or family knowing his whereabouts, considering he had been suicidal the night before this was so risky! He was finally sectioned in 2011, after he started walking about naked and soiling his bed, But the continuity of care has been the major problem for him and the family. We don't seem to have any access to information, the social workers have been insensitive and frankly, the source of much of the misinformation. I have had to write numerous angry letters to the PCT to get any information. Finally we had one meeting with the head people, and it was positive, it turned out that the lack of communication has been identified as an issue, but steps to resolve this have still been limited. My brother is now on regular medication and is starting to become more coherent, his improvement is considerable, he can now spend time with people and perform basic tasks like washing up and ordering food/drinks at a bar with guidance and supervision. Unfortunately he has spent an inordinate amount of time on a ward waiting for funding to be agreed to go into rehab, but finally we are there and hopeful that he will make more progress given the right support. I dread to think about him being forced into independent living however as he just would not cope and he finds making friends so hard if they don't have his lofty ideals.
I too have been struggling and my Mum has pretty much lost the plot, (she never was very good at coping anyway) but I have had no help from doctors other than diazepam. But what I would say is keep going, if you can write letters and make notes do, and always hold people to account when they make plans or offers. I found knowing some one on the inside also helps and writing to the head honcho, for us this led to the big meeting, which in turn lead to my bro being admitted to rehab. Also get a dictaphone if you do go to meetings, I find if you are too tired to make notes this helps. My whole family are vulnerable and I have no idea how to get my mum to admit she has big emotional problems, all I can do is keep writing those letters and hoping that this stupid system will one day get better.
Peace all
Liz
Sounds slightly similar to my experience, my lil bro (30) has schizophrenia and possibly Aspergers, he is also a graduate in Physics and the Universe with a 1st in his dissertation on quantum physics! his schizophrenia was largely trigged by taking lots of LSD, Ecstasy, MDMA and crack and all his delusions/trips have been about parallel universes. In 2005/6 he had taken so many drugs that he no longer knew what day it was or time of year, he also ended up eating food out of cans having his possessions stolen and living in a squat. In the end he called my mum from the pavement when he had been evicted saying he'd lost all his self respect. He hasn't been able to live on his own and every-time he's tried he ended up back at mums, sometimes sleeping in the shed. Since 2006 he's become violent, isolated and largely incoherent. He spent most of his time reading philosophy isolated in his bedroom, or with his fingers in his ears, keeping to odd hours and losing all sense of his personal care. On a couple of occasions he thought he was going to die and asked to be helped, this was met with with responses from the bizarre to the outrageous by GPs and CMHT professionals who should have known better than to judge a book by its cover and qualifications.
What we would hear a lot of was 'he's not that bad' because he's so intelligent and when he met with health care providers, he would make an effort to appear 'well governed' when we knew that he was so distressed and incoherent at home. Growing up he was a largely clam well mannered boy but since 2005 he has become very arrogant and angry with a terrible temper, he also refuses to see that he is somehow different or wrong. When we would discuss issues with the CMHT or health care providers they would often say, there is nothing we can do unless he gets sectioned. One doctor even advised my mother to provoke my brother into attacking her to get him sectioned!!
One occasion after a rough night my brother admitted himself to a ward but was so disorientated about his whereabouts, (equally the family had not been informed of his whereabouts) that he walked out of the ward and walked 7 miles down a major A road to get home without any staff or family knowing his whereabouts, considering he had been suicidal the night before this was so risky! He was finally sectioned in 2011, after he started walking about naked and soiling his bed, But the continuity of care has been the major problem for him and the family. We don't seem to have any access to information, the social workers have been insensitive and frankly, the source of much of the misinformation. I have had to write numerous angry letters to the PCT to get any information. Finally we had one meeting with the head people, and it was positive, it turned out that the lack of communication has been identified as an issue, but steps to resolve this have still been limited. My brother is now on regular medication and is starting to become more coherent, his improvement is considerable, he can now spend time with people and perform basic tasks like washing up and ordering food/drinks at a bar with guidance and supervision. Unfortunately he has spent an inordinate amount of time on a ward waiting for funding to be agreed to go into rehab, but finally we are there and hopeful that he will make more progress given the right support. I dread to think about him being forced into independent living however as he just would not cope and he finds making friends so hard if they don't have his lofty ideals.
I too have been struggling and my Mum has pretty much lost the plot, (she never was very good at coping anyway) but I have had no help from doctors other than diazepam. But what I would say is keep going, if you can write letters and make notes do, and always hold people to account when they make plans or offers. I found knowing some one on the inside also helps and writing to the head honcho, for us this led to the big meeting, which in turn lead to my bro being admitted to rehab. Also get a dictaphone if you do go to meetings, I find if you are too tired to make notes this helps. My whole family are vulnerable and I have no idea how to get my mum to admit she has big emotional problems, all I can do is keep writing those letters and hoping that this stupid system will one day get better.
Peace all
Liz
#4
melody
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Posted 02 March 2012 - 02:04 AM
Hi thanks for adding your views...
tincan... thanks for your reply - you summed it up very well! Yes it is about common sense and human dignity, not box ticking and blame shifting.
I get the impression the people in the servcies I've met, are more concerned about their jobs than the "end user" - so many levels of management and I've been through the lot - right to the top, who just passed it back down to the bottom again... you cannot win. No-one accepts responsibility. One Director promised me he would help - 2 years later and I was still screaming at them. I've gone to extraordinary lengths. It's frustrating when I know I could do a better job than most of them (I've proved it too by arranging things when they failed)...and yet I get paid nothing and they have lovely big fat salaries...hmmm. I reckon now I could be a very useful advisor, as I've learnt so much about the system, from both sides...
Hi Liz.. thanks for sharing your story. Oh dear, you've had a tough time too!
All we want is for help in supporting and caring for our sick loved ones and that we are best placed to know that person and what is good for them... but will they listen?
No, in my case they chose to listen to my brother who wanted to live in his flat because he had important work for NASA to do and they were respecting his decision. The fact that he had no food, less than 1 hour of care a day, no heating, debts building up, no socialisation, no therapy, you could hardly walk for all the clutter, he didn't wash... fire hazards, no fire escape, drug takers in the flats near him, broken fridge, his bike was stolen.. You get the picture... Didn't matter how much I said he should be moved to supported accommodation as his needs were obviously not being met... they didn't listen to me. My biggest fear was to go to his flat (I had keys) and find him collapsed on the floor or worse - he had no means of communication - he really was isolated. I was in every CPA meeting and made to keep quiet in case I upset my brother... they didn't allow dictaphones.... ok I'm rambling... it makes you that way!
Yes and you are right - keep a diary, make notes - keep as much evidence as possible. I hope one day it will all be used. I took photos and videos of his flat at the time. Photos of him 10 years ago looking reasonable, smiling and with most of his teeth. During that 10 years under their "care", he's deteriorated so much, he looks gaunt, haunted, withdrawn, completely deluded and has hardly any teeth left. It's a clear case of neglect, and they would probably say it's natural progression or something stupid. No, actually, when I managed to get him to brief respite where he was properly cared for, his condition improved, thus proving my point. But knowing the kind of people we are up against, how on earth can you bring them to justice?
One thing I will say, in our experience, the outside services have a much more caring approach and more professional standards. The care agency I arranged were terrific, but could only do so much in the limited time they had. In the one hour a day, they were expected to get my brother a hot meal, clean the flat, do his washing, wash up, talk to him, get shopping, make sure he's washed... Whenever I saw them, they'd be rushing round like whirlwinds trying to do as much as they could and even doing extra things in their own time. In the supported accommodation he's in now- they too are great. They all put the NHS system to shame - something is wrong somewhere!
Liz, I know it takes such a toll on all the family... they create more patients in their neglect to care for the one in question. I really do hope things improve for you all - sounds like you have your head screwed on right - try and stay strong.
Wishing everyone well..take care
melody
tincan... thanks for your reply - you summed it up very well! Yes it is about common sense and human dignity, not box ticking and blame shifting.
I get the impression the people in the servcies I've met, are more concerned about their jobs than the "end user" - so many levels of management and I've been through the lot - right to the top, who just passed it back down to the bottom again... you cannot win. No-one accepts responsibility. One Director promised me he would help - 2 years later and I was still screaming at them. I've gone to extraordinary lengths. It's frustrating when I know I could do a better job than most of them (I've proved it too by arranging things when they failed)...and yet I get paid nothing and they have lovely big fat salaries...hmmm. I reckon now I could be a very useful advisor, as I've learnt so much about the system, from both sides...
Hi Liz.. thanks for sharing your story. Oh dear, you've had a tough time too!
All we want is for help in supporting and caring for our sick loved ones and that we are best placed to know that person and what is good for them... but will they listen?
No, in my case they chose to listen to my brother who wanted to live in his flat because he had important work for NASA to do and they were respecting his decision. The fact that he had no food, less than 1 hour of care a day, no heating, debts building up, no socialisation, no therapy, you could hardly walk for all the clutter, he didn't wash... fire hazards, no fire escape, drug takers in the flats near him, broken fridge, his bike was stolen.. You get the picture... Didn't matter how much I said he should be moved to supported accommodation as his needs were obviously not being met... they didn't listen to me. My biggest fear was to go to his flat (I had keys) and find him collapsed on the floor or worse - he had no means of communication - he really was isolated. I was in every CPA meeting and made to keep quiet in case I upset my brother... they didn't allow dictaphones.... ok I'm rambling... it makes you that way!
Yes and you are right - keep a diary, make notes - keep as much evidence as possible. I hope one day it will all be used. I took photos and videos of his flat at the time. Photos of him 10 years ago looking reasonable, smiling and with most of his teeth. During that 10 years under their "care", he's deteriorated so much, he looks gaunt, haunted, withdrawn, completely deluded and has hardly any teeth left. It's a clear case of neglect, and they would probably say it's natural progression or something stupid. No, actually, when I managed to get him to brief respite where he was properly cared for, his condition improved, thus proving my point. But knowing the kind of people we are up against, how on earth can you bring them to justice?
One thing I will say, in our experience, the outside services have a much more caring approach and more professional standards. The care agency I arranged were terrific, but could only do so much in the limited time they had. In the one hour a day, they were expected to get my brother a hot meal, clean the flat, do his washing, wash up, talk to him, get shopping, make sure he's washed... Whenever I saw them, they'd be rushing round like whirlwinds trying to do as much as they could and even doing extra things in their own time. In the supported accommodation he's in now- they too are great. They all put the NHS system to shame - something is wrong somewhere!
Liz, I know it takes such a toll on all the family... they create more patients in their neglect to care for the one in question. I really do hope things improve for you all - sounds like you have your head screwed on right - try and stay strong.
Wishing everyone well..take care
melody
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