Discussion Boards The soapbox Has anyone else noticed the marked LACK of care in the mental health system?

Has anyone else noticed the marked LACK of care in the mental health system?

By Janbo

Mon 10 Nov 2008 20:51

Firstly I must apologise for not having "popped in" to this site for agesand am writing now to vent my spleen!

I am the wife and carer for a paranoid schizophrenic for over a decade. During the past 18 months his health has deteriorated and he has been admitted to hospital ten or eleven times. I never had any problems with previous hospital or wards but ran into problems almost immediately on the ward he has to go on now. Not only did they not communicate at all they were actually hostile, so much so that I had occasion to complain in writing and then in a meeting with the matron. At least now they have a REASON to be hostile toward me.

My biggest worry is that they are not looking after my husband properly and I am constantly having to step in and almost argue with these so called "professionals".

Instances are, at a CPA meeting when I had the gall to ask a question and wanted clarification, the consultant called me a controlling woman and asked the social worker attending "Who is she?" and then said "Get her out of here"!. He has since been fired apparently so that's something I guess.
Another instance, the Ward Manager whose staff I had previously complained about carried on with a CPA with my very ill husband (only in a week) with just one junior doctor and no other staff or family in attendance. She suggested that my husband be let out for the night even though he was still having voices to kill me! I had to ring the mental health team, social worker, support worker, doctor etc.... to make sure he would stay in the hospital.

Just this morning after three weeks in hospital, they have let him out unaccompanied to attend a dental appointment. He was told there were not enough staff on. He had to walk over a bridge to get to the dentist and it is logged in his notes that when ill, he has compulsions to throw himself off of bridges. The nursing staff had also told him BEFORE his CPA, BEFORE they'd spoken to yet another new consultant and BEFORE they'd spoken to me, that his "TTA's" (take out medication) were all done. They were going to discharge him when he'd only had two hours sleep the night before(sleep patterns completely out of whack) and he's still getting voices that he's acting apon. Once again I had to contact his "stand-in" social worker, who thankfully listened to me and supported my fears at the meeting.

I have constantly had to battle to get him in the hospital recently, it appears they think I only get him in because I need a little break! The fact that he gets voices to kill himself and others seems to be quite inconsequential. So many people from this hospital have committed suicide during the past 18 or so months with no mention anywhere. I am terrified that my husband will be another one of the statistics just because they are displaying absolutely no duty of care, to him OR me.

I'm quite desperate to find out if there are any other carers of mentally ill people that are experiencing similar situations or if this is just an isolated, very bad hospital ward. It has certainly left me feeling far more vulnerable and very isolated. There are several other incidents too long to go into here. Sorry to go on but I really do feel at the end of my tether and need to know if this is what to expect for the duration.

Replies

By Bernie56: Re: Has anyone else noticed the marked LACK of care in the mental health system?
Mon 10 Nov 2008 23:18
Hi Janbo, no advice to give sorry never been in your situation. Just wanted to say you are in my thoughts and keep the pressure on for the care that is right for your hubby and you. Seems that these carers don't know what they are talking about, Bernie

By Janbo: Re: Has anyone else noticed the marked LACK of care in the mental health system?
Tue 11 Nov 2008 08:20
Thanks Bernie, your response and support is greatly appreciated and certainly helps.

By gemini mum

Re: Has anyone else noticed the marked LACK of care in the mental health system?
Tue 11 Nov 2008 09:48

Hi janbo.

I have had experiences like this within the mental health system ( i leave the word 'care' out for obvious reasons ) My son was on a ward for two weeks but came out more traumatised than when he went in. it's a scary place to be, not only for the patient but even more so i feel for the primary carer. And I don't think your - or my - experience is unique though ast alking to other primary carers who i met whilst my son was on the ward we discovered we all had similar stories to tell. I wonder how many people there really are out there who feel exactlly the same us us? In this day and age, it's unbelievable that this goes on. I used to think films like one flew over the cukoos nest were fiction but upon reflection i'm not so sure...I am still very angry about the treatment my son recieved whilst there and share some of the experiences you have mentioned in your posting.. being called or very much given the impression that i am a controlling parent. being scared stiff that my ( suicidal ) son would be let out of the ward if he chose to with go, without my knowledge. I was even told in no uncertain terms that there was nothing much wrong with my son apart from him having 'behavioural problems' he has since been diagnosed with a number of conditions.

Here is a little aside story and one that i just wish i had the strength to deal with at the time. Read no further if you haven't the time but i need to get this out and rant about it...

my son called me from the ward late one night and said there was something very wrong with his hands and feet and that he was feeling very unwell, he sounded so scared and was crying and having a panic attack I told him to call the nurse in charge straight away and to let them know and ask to see a doctor. I said i'd call them as well and ask them about it ,which i did after about half an hour ( to give them time to see with him ). they told me he was ok and it was just anxiety and that he was quiet now. I was due up the the next day as there was a reveiw meetingto see if he could leave the place. I went up an hour early found my son in a hell of a state, his feet and hands swollen and painfull and he was being constantly sick.. all that with anxiety and panic attacks on top. He was extreemly scared. They had not called a doctor to him the night before, they told me there wasn't one availible. yes, he had become quiet after phoning me the prievious evening but only becuase they had given him a strong drug which knocked him out!

Anyhow to cut a long story short they decided to discharge him and practically ordered him to get his stuff together. They would not let me help him do this and forced him to do it even though he could hardly stand and his hands and feet were so painful he could barly use them. ( My son started shouting at the staff and it was at this point i was told he had behavioural problems) He did have help in the end though, from another patient. I took his stuff to the car in the car park and when i got back my son ( still in a state ) was sitting outside the ward being looked after by this other patient who told me they had practically chucked him out the door locking it behind him. the patient, to whom i will be forever grateful told me that he'd gone out there to look after him untill i came back. I had to practically carry my son to the car and took him straight up to accident and emergency in the hospital where they diagnosed him as having a severe allergic reaction to medication they had given him and gave him treatment straight away for it. At the time I was so angry but also so brow-beaten by what had happened in those 2 weeks and so focused on looking after my son who was by now even worse than when he went in that i didn't make a complaint. I'd never have realised that caring for someone with mental helth problems could leave you feeling so utterly powerless.

Well done you for making your complaint, i think it's only by exposing things like this that changes might be made to the system but i wonder how many people like myself just don't complain as they just don't have the energy left to fight. it's a scandal.

(( huggs to you ))

By Janbo

Re: Has anyone else noticed the marked LACK of care in the mental health system?
Tue 11 Nov 2008 23:14

Dear Gemini mum, I'm so sorry for the problems you've had with (so-called) health care system. It is an absolute disgrace the way these people are bullying vulnerable seriously ill people as well as their carers/families. I didn't mention in my previous rant (!) that I had to visit my GP who put me on a long list to see a counsellor. She was definitely worth waiting for and has been astounded at the tales I've recounted to her. Unfortunately I texted her today as I haven't seen her since my husbands last admittance. It just goes to show that the actual looking after and caring for my sick husband isn't the reason I get so stressed. He has been IN hospital for three weeks, it's the strokes that the nursing staff pull that cause all of the troubles.

I had a real up and downer just today again with a newly qualified nurse who actually asked my husband this morning "Don't you WANT to go home?". (She had obvously been ONE of the staff that had suggested he be discharged yesterday). She then proceeded to tell him that she didn't like dispensing Diazepam to clients as they always wanted more. Bearing in mind that she has only been allowed to dispense for a few months and the Consultant prescribed them......

She then came into my husbands room where I was talking to his Social Worker and said this was causing his agitation. Even his mamby-pamby social worker softly piped up that when HE had first seen my husband he was agitated. We know what she was insinuating don't we?

Previous to this last hideous 18 months on "the ward from hell", I had never been spoken to or patronised by his doctors and Consultants let alone wet-behind-the-ears nurses. I did fear that when I complained previously that some staff would take it out on him or/and me, it would seem that my fears were founded. I rang for the matron today and she wasn't in so I will have to go through it all again tomorrow and wonder how I can possibly make a difference whilst fighting for decent treatment but moreover wonder if I'm making the situation worse. So many of these worthless staff are covering their backsides and they blatantly lie about what has been said and then get backup from their peers.

I really hope that I don't cry or worse, get angry when dealing with them later this week. My husband is a nervous wreck and I'm fast following, I have never felt so vulnerable and alone in my life. Nobody, but nobody else cares what happens to us, I actually wanted to vomit when I left the hospital this morning, thank God I am a good actress. And thank God for people like you sharing your awful dealings with the people that are supposed to help us and our loved ones. I really don't know where to shout louder to try and unite people like us dealing with this extremely flawed system.

If there are any "professionals" looking in, please take note at the distress and heartache some of you are causing to not only the sick and needy, but to the carers that are just trying to do a job with little or no pay and increasing stress.

Thanks again Gemini, please don't hesitate to write anytime.

By gemini mum

Re: Has anyone else noticed the marked LACK of care in the mental health system?
Wed 12 Nov 2008 00:21

Hi Janbo, you sound like your having a terrible time, i fully understand what you are going through with this and how. I wonder if you would like to get in touch with me through private e mail ?I would be quite happy to talk with you over the phone aswell if you feel you would like to have a chat.

Next time your on the ward.. ask to be shown the patients charter. It should be up on the walls somewhere i think they have to display it?. I bet you will find a number of guidelines ( or whatever they are called ) on there that have already been broken by the sounds of it. Perhaps someone on this board can even supply a web site with them on for you to look at. I think once you have read it it will empower you in order not worry about making a fuss for fear of the repercussions. it's a pity i only came across it on the last day ( pointed out to me by that very helpfull patient i mentioned ) it was practically hidden on a corridor wall and unless you were conciously looking for it, you would walk straight past it -as i did for 2 weeks.

Your so right about what you said. It's not looking after your mentaly ill loved one that causes the stress, in fact thats the easy part compared to dealing with the mental health care system. I know you mentioned in your post that your husband has a social worker, he sounds like a bit of a wet blanket. Any chance you could request someone with bigger balls? also have you thought about finding someone who will act as an advocate for your husband? you might be able to find someone through organisations such as mencap or mind or perhaps there is an organisation specificaly set up for schitzophrenia who will help with that.

I think the worse part of dealing with something like this is not knowing where to go or who to turn to for help. It makes you feel trapped, panicky, desparate and isolated. it's good that you have a councellor to talk to, but boy, wouldn't it be nice to have some practical help as well.

(( huggs ))
Gem.

By Amberelen

Re: Has anyone else noticed the marked LACK of care in the mental health system?
Wed 12 Nov 2008 15:46

Mental health teams ! Three years ago my husband supported me through mental illness and cared for our teenage son with severe physical an mental disabilities.

Once I was gettin better an he was sure I was safe to be left at home he went back to work full time. He soon became unable to cope and was seen as I was by the mental health team. After a year he went back to work only to be told he was sackd for being ill an off sick.

He worked for the MENTAL HEALTH TEAM !!!!!!

By Janbo

Re: Has anyone else noticed the marked LACK of care in the mental health system?
Thu 13 Nov 2008 22:17

It just shows you Amberelen that nobody's safe. I think there must be a whole lot of extremely unhappy nurses working on my husbands ward because some of them are being so unprofessional and you just wouldn't do that if you were happy in your job,. I think your husband is better off out to be perfectly honest.

Thanks so much again Gem for your kind offer and remarks. The situation has I'm afraid just gone from bad to worse but there is a wonderful social worker that has stood in for my husbands not so wonderful one! Only temporary but he was very supportive. I have an appointment to see the matron on Monday but will be taking matters further. I'm also going to meet up with a mother whose son committed suicide earlier this year after not being admitted to the hospital. She is campaigning full on so I will get useful info from her and I've even contacted a local newspaper who are very interested in what I had to say.

I felt so isolated and frightened Gem that I sat and cried and worried but now my "fight" has returned. I cannot just sit while they roll roughshod over me and my husband because it's getting so much worse with every admittance. He is never going to get better so we're here for the duration and I couldn't possibly think about going through this each time he has a bad episode.

I really do need to be able to try and get hold of the carers, family and friends of some of the people who have already lost their lives due to the lack of care in this area and have to figure out a way to do it. Possibly the newspaper will help there. I am quite adamant that my husband does not become yet another of these tragic statistics. If anyone else out there has any advice for me it would be appreciated.

By AlanM: Re: Has anyone else noticed the marked LACK of care in the mental health system?
Fri 14 Nov 2008 10:12
Hi Janbo,
Sorry to hear about how bad the service from mental health teams has been (for everyone above!) - I guess my wife and I have been really lucky! She's been in hospital for about 7 months (she was out for 4 weeks, but then took another overdose ) and the staff have mostly been very good. The two main problems we've had have been scheduling regular apointments for my wife with her psychologist and their inability to provide her with decent food.
Wish I could offer advice on getting things improved - I've been able to discuss my wife's treatment with her consultant and he's been really open to suggestions that I've made. Is there a similar consultant helping your husband with whom you could discuss the problems? In my (limited) experience, consultants tend to be listened to by other health professionals.... All the best with your attempts to improve your husband's care - I hope you don't meet too much resistance and that the mental health team remember the 'care' aspect of their jobs really is what they are primarily required for, even if the NHS doesn't think so!
Best wishes to all,
Alan.

By tryinghard: Re: Has anyone else noticed the marked LACK of care in the mental health system?
Mon 24 Nov 2008 12:54
Hello, this is my first post here. & I came across the site by chance. You could have been writing about our experiences. I am so sorry you have had such a difficult time & I have a good idea of what you are going through. I cant write of my experience just now because its still too raw, but what I will say to you is if you have the strength, complain (& I know this is very hard when you have used all of your energy in supporting & caring) . Use your local PALS service to support you, if necessary make a complaint directly to your local Primary Care Trust who are responsible for the service & accept any offer of discussion with them if you feel up to it. We got a good result from this, but not until we had experinced all of the things you mentioned in your message & there were many times when I felt that the person I care for would loose their life because of this and I am pleased to say is now is doing quite well because we were able to be persistant in our complaint. I really wish you well and that you can somehow take care of yourself throughout this.

By kentishlady

Re: Has anyone else noticed the marked LACK of care in the mental health system?
Fri 2 Jan 2009 21:45

Hi I've only just joined this site, but the OP could have been describing the situation we met when my husband had his last admission (after he physically threatened me and I had to phone the police).
Hubbie has an organic mood disorder which is related to his parkinsonism and his parkinson meds. This means that his mental health problems are never going to get better (and in fact are likely to change/get worse over time as his brain deteriorates further). However, the CMHT (who are the most useless bunch of twats I have ever met) have decided that as he shows no interest in getting better or returning to work, that there is nothing they can do for him and have discharged him.

We never received a copy of his needs assessment or his care plan and to be honest I suspect that these never existed. I never got the promised carers assessment. There is more I could tell, but basically I just thank god for his specialists at the national hospital in queens square - if it wasnt for their support I think I would have had a breakdown by now.

I wish we had a proper mind drop in in my town or something similar but all that is available are the drop ins run by the CMHT - and you can only go if you are currently under there care. So DH sits at home and does nothing all day til I get home from work.

Makes me mad!!!

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