Shocking UK Mental Health Care Service

[Think About It...]

Many of you will not be as shocked as I am about the treatment I (the carer) am receiving from the local (UK) mental health care hospital at the moment, as I suspect many of you will have been here before, but this is the first time in the three years my BP husband and I have been together, that he has been hospitalised.  Basically they have to be referred by a GP and our GP doesn't take my husband's problems seriously at all so that has never happened... the other way to do it, which I didn't find out till recently is for the patient to turn up at a General Hospital's Accident and Emergency department and threaten to take his or her own life!  That works a treat apparently - they get sent in an ambulance to the local mental health care hospital almost immediately.  Anyway my husband did just this on Wednesday night.  I had reported him missing to police as he had threated to kill himself earlier that day and although I'm ninety nine percent sure he won't, the one percent of me worried enough to report him missing when he wasn't home by 11.30 p.m.  At 1.30, the A&E department of the general hospital phoned me to tell me he was safe at the local mental health hospital they'd sent him to.  I took him some clothes and toiletries and food the next day.  He was tearful but civil.  That evening I went to a work do which was a special welcome event for myself and two other new members of staff.  Most of you will be able to imagine the uproar my going out and enjoying myself while he was in hospital provoked... he spent all night and the next day sending me the usual nasty text messages (I'm amazed they don't take the patient's cell phones away while they're in there, especially when they are using them as a weapon!).  Anyway this is all by the by, the 'shocking' bit I wanted to talk to you all about is the way the hospital staff have treated me, his wife.  I have visited three times now and asked to speak to somebody every time, yet none of the nurses seem to be able to offer me any advice, information... most of them don't know who I am or who my husband is!  They pass me round from different staff member to different staff member and always send me away frustrated, desperate and knowing no more than when I entered the building.  I have been given an appointment to see the psychiatrist when he is on his ward rounds tomorrow morning, but surely a psychiatric nurse could tell me how Tony is, whether he's eating and sleeping, whether he's angry or sad, whether he's on any medication, whether he wants a visit or not... whether I have rights to visit even if he doesn't want me to... whether he can apply for benefits.. .He is self-employed and not earning anything now, there is hardly any money in his account and yet he is refusing to cancel the unnecessary standing orders.  I don't have access to his account and the mortgage and bills come out of it.  I would happily pay my money into his account so that these essentials could be met, if my money weren't going to disappear into a bottomless pit of non-essential direct debits, leaving nothing for the mortgage and bills.  I don't earn enough to do it all alone anyway... shouldn't somebody be telling him and/or me about his right to claim benefits while he's not working?  As I said this is the first time for both of us and I feel very badly let down.  My husband has argued with me in the ward and then followed me out and tried to get into my car and a nurse came out and called him back in to the ward, but she could see I was distraught, couldn't she have called us both into a room and tried to find out what the problem was, acting as a mediator? Do I expect too much - my mother worked at the same hospital for fifteen years, many years ago, but she told me that families of the patient were involved in their care then.  I feel so irrelevant and walked over and unimportant... do you know what I mean?    The worst bit is they make me so frustrated and miserable that when I'm there I lose the plot and leave wondering if they think I'm the one that needs to be hospitalised! 

[DynaMosephine]

Many of you will not be as shocked as I am about the treatment I (the carer) am receiving from the local (UK) mental health care hospital at the moment, as I suspect many of you will have been here before, but this is the first time in the three years my BP husband and I have been together, that he has been hospitalised.  Basically they have to be referred by a GP and our GP doesn't take my husband's problems seriously at all so that has never happened... the other way to do it, which I didn't find out till recently is for the patient to turn up at a General Hospital's Accident and Emergency department and threaten to take his or her own life!  That works a treat apparently - they get sent in an ambulance to the local mental health care hospital almost immediately.  Anyway my husband did just this on Wednesday night.  I had reported him missing to police as he had threated to kill himself earlier that day and although I'm ninety nine percent sure he won't, the one percent of me worried enough to report him missing when he wasn't home by 11.30 p.m.  At 1.30, the A&E department of the general hospital phoned me to tell me he was safe at the local mental health hospital they'd sent him to.  I took him some clothes and toiletries and food the next day.  He was tearful but civil.  That evening I went to a work do which was a special welcome event for myself and two other new members of staff.  Most of you will be able to imagine the uproar my going out and enjoying myself while he was in hospital provoked... he spent all night and the next day sending me the usual nasty text messages (I'm amazed they don't take the patient's cell phones away while they're in there, especially when they are using them as a weapon!).  Anyway this is all by the by, the 'shocking' bit I wanted to talk to you all about is the way the hospital staff have treated me, his wife.  I have visited three times now and asked to speak to somebody every time, yet none of the nurses seem to be able to offer me any advice, information... most of them don't know who I am or who my husband is!  They pass me round from different staff member to different staff member and always send me away frustrated, desperate and knowing no more than when I entered the building.  I have been given an appointment to see the psychiatrist when he is on his ward rounds tomorrow morning, but surely a psychiatric nurse could tell me how Tony is, whether he's eating and sleeping, whether he's angry or sad, whether he's on any medication, whether he wants a visit or not... whether I have rights to visit even if he doesn't want me to... whether he can apply for benefits.. .He is self-employed and not earning anything now, there is hardly any money in his account and yet he is refusing to cancel the unnecessary standing orders.  I don't have access to his account and the mortgage and bills come out of it.  I would happily pay my money into his account so that these essentials could be met, if my money weren't going to disappear into a bottomless pit of non-essential direct debits, leaving nothing for the mortgage and bills.  I don't earn enough to do it all alone anyway... shouldn't somebody be telling him and/or me about his right to claim benefits while he's not working?  As I said this is the first time for both of us and I feel very badly let down.  My husband has argued with me in the ward and then followed me out and tried to get into my car and a nurse came out and called him back in to the ward, but she could see I was distraught, couldn't she have called us both into a room and tried to find out what the problem was, acting as a mediator? Do I expect too much - my mother worked at the same hospital for fifteen years, many years ago, but she told me that families of the patient were involved in their care then.  I feel so irrelevant and walked over and unimportant... do you know what I mean?    The worst bit is they make me so frustrated and miserable that when I'm there I lose the plot and leave wondering if they think I'm the one that needs to be hospitalised! 

[Gra]

No...you don't expect too much.

My heart goes out to you. For all the faults I've found in Australia's health system while dealing with my wife's problems, it seems far more humane than what you're having to deal with.

Does your husband ever show remorse for his actions?

If not, I don't think I could live with what you're going through.

[DynaMosephine]

He says he is remorseful often, but you know what it's like when you've heard it so many times before... you end up wondering if they are actually capable of remorse.    Do you know when I phone them, I don't even think they would pass on the message to him that I asked after him.  I mean can you imagine being in a mental institution and not being told that somebody asked after you and wanted to know you were OK.  I mean even if you were angry with somebody and said you didn't give a x-x-x-x, deep down inside, you'd be relieved somebody was asking after you wouldn't you... and I really don't even trust the staff there to pass on the fact that I've called.  I was told after passing my last message that he is interacting with other patients.  Cool that makes me feel so much better!  Sorry that may sound selfish, but it's just the way I feel right now.

Angie

[marnie]

I can't imagine the confusion and anger and frustration you must feel! I know nothing about the UK system, but my H spent months hospitalized here in the States, and there was always communication with me about his condition.

First, he was in a very nice private psychiatric hospital, and I had to drive nearly 8 hours one way to visit; the docs would schedule meetings with me ahead of time, usually on a Friday afternoon so I wouldn't miss much work, and give me at least an hour's time.

When the Veterans Administration dx'd him as PTSD, VietNam related, they did institute some privacy rules, often not being willing to even say he was THERE, but he was able to sign me on as his spouse, to be provided information about his condition any time I asked. This was also some years' back, and the VA has become more forthcoming (altho they still do not offer therapy to families, I have been able to participate in joint therapy if H agrees).

Is there a Social Worker at the hosp where your spouse is a patient? In the US, that can be the gateway to information.

Can't imagine cell phones being allowed, but when my H was hospitalized (over a period of 5-6 years) there were no cell phones. They would not allow him to have a belt, or shoestrings, or anything that could be used by a suicidal patient.

They had a special Lock Down ward at the VA, & once he was put there, with constant 24/7 observation by staff, there were no phone calls, no visits. But I COULD get information on his condition. They kept him there a few days, then moved him onto a regular ward.

One time, he was shackled at night ... I was there, at a local psych ward ... and transported to the downstate private hospital. I cannot tell you how horrifying that was. Thank God for good medication, which eventually turned his life (& mine!) around. And the VA has been a blessing, despite what you may have heard.

marnie

[caggif]

Hi Angie,
Sorry to hear that you're having problems with our glorious NHS .
Just a thought, but have you considered that your H may have asked them not to tell you anything and they may just be trying to be polite ? ? I'm not saying that this is the case, but you know about patient confidentiality and all that. ? It could well be just another way of "controlling" you - you know the BP score by now, withholding information. ?

Also, is he being held under Section ? ? If he is, then the medics may well be withholding info until a full assessment can be made on your H, which they can do for up to 28 days from the date of committal.

Sorry this has all kicked off for you again

Caggi xx

[Gra]

Marnie,

I'm shocked at the news that your husband was shackled. The mental health system here in Australia is very from you discribe in the states. Here, someone has to self harm before putting them in hospital is even considered. The thought of them being put in shackles is just inconcievable. I would imagine it provided him with a bit of a shock, but I know if something like that were to happen to my partner it would have a very negative impact on her already fragile self esteem. Even what DynaMosephine discribes could never happen in this country. Our mental health system went through some radical reforms in the last twenty years and institutionalising people is seen as an absolute, last resort. The prefered option is for community teams to go to people's homes and try and deal with problems without dragging people away from the comfort and safety of their home environment. It was during a visit such as this that my wife was first diagnosed as BPD. She recieved more help in 5 minutes from the community group that visited than from the previous 12 months of seeing a local pysciatrist with a big reputation.

Are these methods tried at all in Britain or the States?

[caggif]

Hi Gra,
I cant answer for the US but over here in the UK, support for the mentally ill, whatever the dx, is extremely poor, post-code dependent, badly funded and even more badly informed. 

My Hs GP (General Practitioner as we call them)  and NHS Psych hadn't even heard of BPD until he actually pointed them in the direction.  The general concensus is that the medical profession tend to steer well clear of the dx anyways, as it is difficult to treat, and therefore not "cost effective".  Everything in the NHS has targets, and successful treatment for BPD would by its very nature, fall sadly short in meeting any such targets.

As for our "care in the community" programme - its a bigger joke than a pantomime.  We hear daily of persons who've been released from secure institutions under such care in the community orders, only for them to go on to kill, rape, and lay seige to schools full of kids.  Home visits - bah, now that wouldn't even get a look in.  H could only get 1 appt. per month with his Psych at the local Health centre. We've paid privately for years.

Caggi xx

[been there]

   Hi Angie,

   Sorry things are going so badly for you(and your H).

   I know absolutely nothing about the Mental Health Care System in the UK, but it sounds to be lacking.

   Wishing you the best, and hopefully this might have a good impact on your H.

   Mark

   

[DynaMosephine]

Oh boy it gets worse.  I had my appointment with his mental health care team today. 

I thought I'd just be seeing his doctor and mental health care admin manager, but there was a room with about 6 people in, very intimidating and I felt I should have been warned! Tony went in first, then came out.  I came in and the first thing the doctor did was say she couldn't tell me anything without Tony's permission - Doh! Like what's the point of me being there
then!  Obviously Tony had given his permission or I wouldn't have gone in would I!  So for the idiot shrink's sake we got him back, he gave his permission then burst into tears and left.  The psychiatrist then told me the same old crap I've heard for the last two years.  Tony has personality disorder, he needs psychotherapy, NHS can't afford to give him it, in the
meantime we have to get him out of his depression with pills so we can kick him off the ward, he's taking up a bed and they need it..  she then refused to discuss his illness or how to cope with it anymore and just kept saying again and again that he and I really need to decide where our relationship is going.. I can't remember the exact words but the expression on her face and the words she used gave me the distinct impression that she was
blaming me for hiscsuicidal tendencies and saying he won't get better until we split up!  I was so shocked I could hardly speak.  How dare she...the sanctimonious witch!  The only thing they offered which I was grateful for, was an opportunity to discuss with him whether we should go for relationship counselling, with somebody else in the room.  I cut her short after that and thanked the losers for their time and went to say goodbye to
him and let him know they would be asking him if we could speak in the next day or so, with a member of staff in the room, about whether we should go for relationship counselling or split up.  He then did his usual avoiding the subject, screamed at me about how I went out on Friday night, despite knowing he was suicidal in hospital, demanded an apology then stormed off when I refused to give him one and tried to calmly give my reasons for going
out.   I will visit his primary care worker on the way home and ask if he's agreed to the meeting.  If he doesn't then I guess we'll split up.  I have no intention of wasting any more of my time talking to his doctors I'm afraid.  They are totally useless.  When we do split up, and he goes back into hospital six months from now, who are they going to blame next?  Incidentally, they are obviously appalled at his accusation that I went out on Friday night and yet I know for a fact one of their colleagues recommends the Eggshells book to carers!

Am fast reaching the surrender stage and should probably move from 'Committed to working on it' to a more relevant room.

Angie

[UKBird]

Oh Angie, we know precisely how you feel.

We are always hit with the "confidentiality" stick.  Even when the reason for asking for disclosure of personal information was to know whether or not a Section was being lifted, so that she could leave hospital.  We needed to know in order to protect the children from being removed from school by her.  Really makes you feel safe doesn't it?  I remember the evenings sitting at home with all the doors locked because we didn't know where she was, what state she was in etc.

The UK mental health and support services are very sadly lacking.  Unless they are high as a kite and self-harming, there is little that social services etc can do to help, as they can only work with the BPD if the BPD is prepared to work with them.  In order to do that, the BPD has to accept that there is a problem (with themselves, not with the rest of the world).  So, it rarely happens.  In our experience, BPD works with a new professional for a few weeks or so while the professional sympathises and agrees how nasty everyone else has been to the BPD, then blows up when the professional dares to suggest that something wrong in their life might have been caused by their own action.  From that moment on, the professional is split black and no longer spoken to.

In the meantime, the rest of us try to deal with our lives in a quiet and unassuming way...

Best of luck.  Let us know if you manage to get the UK services to take BPD seriously.  I'd like to know how it's done!
UKBird

[DynaMosephine]

Well firstly, yes I know exactly what you mean about locked doors.  I had him texting me the night I went out, threatening to discharge himself, get his EX to pick him up (cos she has a heart apparently) and bring him home and I was terrified and phoned the hospital to make sure he couldn't discharge himself.  They promised to let me know if he did but said he'd have to see a doctor first and they'd tell the doc about his threats and if needs be section him, but they were so laid back about it, I still didn't believe they'd even remember to tell me he had gone, let alone try and stop him, so it was a restless night.  However, I am not having problems anymore finding lack of recognition for BPD.  They know that's what he has, but just admit NHS resources for treatment of it are limited and they only cover people who fall within the 'complex needs' group of people.  Amazingly the decision about who falls into this group is not made by the psychiatrists, but some admin body higher up than them, so they can do nothing about it.  I can't blame them for not having the funds and they do recognise the problem, but I think they could at least answer my questions about it instead of ignoring me and trying to get rid of me and treating me like a trouble maker!  I have always been very polite and calm when talking to them.    Also my BP husband knows he has the problem, he's not denying it as such, but he also doesn't try that hard to help himself.  He's resigned himself to being that way and regularly says 'I admit I've got problems, but this particular shtty day is down to you, because you've got problems too'.  It's very difficult for me because if he said he didn't have problems and everything was down to me I'd know he was wrong, but because he says each time, this one is down to you (usually about me going out with my friends and him not being able to trust me) I keep doubting and questioning myself.  I know there are other people (who disapproved of my infidelity to my previous husband) who collude with him and say 'Yes Tony you are ill, but she has been a slut in the past and once a slut always a slut so you are right not to trust her and she expects to much'  What I have to do is accept that other people, ill or not, have their opinions about my past and leave and find somebody who is prepared to accept that I have changed and not persecute me for something I did to somebody they have no connection with, before i even met them, especially considering I have never been unfaithful to my BP husband but he HAS been unfaithful to me.

See here I go again justifying myself to you guys... see what he does to me ? _____wit!

Angie

[marnie]

Yes, it is terrible that H was shackled, but he is extremely strong, and when he is in a manic state, he takes people down (which he had done, with the male attendants). To safely get him down to the hospital, the officer driving him was required to shackle him.

Later, the officer said, in full hearing of a friend of H's who happened to be in the outer police office, that he'd had to take some looney downstate whose wrists were so big he couldn't cuff him.

Word got back to H's son, who stormed into the town cop's office and read them the riot act ... my Dad is no looney, and for you to joke about something like that, so strangers can hear you, is totally out of line.

Stepson also complained to the town council and town manager, who then put the officer on leave.

This was a very small town in New England, and unfortunately, the cop wasn't the brightest light in the place.

No, this is not normally how the US treats its patients ... this was about 15 years ago, as well.

Fortunately, H remembers none of this. But I'll never forget it, as I stood there on that sidewalk and watched them take him away.

marnie