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Crisis care: when trust is broken
Posted Monday 21 November 2011
As part of our crisis care campaign, Nikki writes about two very different experiences and asks what patients should do when they're not treated with support and respect.
Looking at me you would probably never guess that I have a mental health problem.
I am an intelligent, educated woman with a good job working for the civil service. I am married with two very talented daughters and I am studying towards a degree.
Yet I have suffered from mental ill health on and off since I was a teenager, experiencing wonderfully high and productive periods but then crashing into the depths of despair where suicide seemed to be the only way out.
Outside of these times, I was fairly normal - depending on your definition or ‘normal’!
I was referred to a psychiatrist and was eventually diagnosed with bipolar affective disorder and I now take mood stabilising medication to treat this.
I also receive excellent care from my Community Psychiatric Nurse (CPN) and my counsellor, both of whom I see every week.
These measures help to keep me stable so I can live my life, so that I can be a good wife and mother, and so that I am effective at work.
As I got older, the depressive episodes became much worse and lasted longer each time. The last three years have been incredibly difficult and I have experienced an exhausting rollercoaster of highs and lows.
During the depressive episodes I have been actively suicidal and I needed the extra support provided by my local crisis team.
My initial involvement with the crisis team was extremely positive. They were supportive and non-judgemental and helped me through a very difficult period.
I was referred back to the team six months later when my mood had dropped once again but this episode became much worse and I was admitted to hospital by the crisis team.
Once at the hospital I tried to discharge myself and was detained under the Mental Health Act. When I was discharged from hospital I wasn’t quite ready to go home and was admitted into a crisis house instead.
The staff at the crisis house couldn’t have been more helpful and there was always someone there to listen when I needed to talk. They also encouraged me to go outside and to help with household tasks to prepare me for going home.
Unfortunately, I became ill again over last Christmas. As my previous experiences of involvement with the crisis team had been so positive I didn’t hesitate when their help and support was offered to me again.
This time however, the care I received fell way short of what it should have been.
I was extremely distressed and self harming to the point where I needed treatment in A&E. I was suicidal and my behaviour was way beyond my control.
I was going missing but couldn’t remember where I had been and my family were extremely concerned about me.
At that point there was still some rational part of my brain that was working and it was telling me I needed help so I called the crisis team as agreed in my crisis plan.
They too were concerned and they sent the police to my house and kept me talking on the phone until the police arrived (I had no idea the police had been called).
Once the police arrived they quickly took over and made sure my children were OK and looked after and then took me to hospital.
I have no doubt that this was the right action to take, but once I got to hospital things changed dramatically.
On arrival I was interviewed by two members of the crisis team. I was shouted at, and told I was wasting police time. One of them told me that if their mum was being burgled whilst the police were dealing with me they would be furious!
I was also accused of being manipulative and references were made to my sex life with my husband. I was already suicidal when I arrived at the hospital and this treatment only served to compound those feelings.
I was then given a choice - either go home or have the police take me to the police station where I would be put in a cell to wait for a Mental Health Act assessment.
This was a no brainer, who wants to be put in a cell?! So I agreed to go home, and was sent there in a taxi. Only I didn’t go home, I asked the taxi to stop somewhere else so that I cut myself some more….
By the time I got home I was exhausted so went to bed. The next day my husband decided I was no longer able to care for myself and that it was no longer safe for me to be at home so he called the crisis team and had me admitted to hospital.
His actions saved my life. I don’t remember the first three days in hospital, I think I was too distressed and traumatised by that stage. But the hospital staff were amazing, and I credit them with how quickly I began to recover.
Their professionalism was never in question and they were incredibly supportive to both me and my family.
After a lot of consideration, I made an official complaint regarding the treatment I had received from the crisis team.
They denied shouting at me but they did concede that they should have dealt with the situation with much more sensitivity than they did and they apologised.
I would have preferred a personal apology from the staff involved but was told this wasn’t possible.
This has left me with quite a dilemma. I no longer trust the crisis team and would probably refuse to have their involvement during any future periods of mental ill health.
Unfortunately, there isn’t really any alternative so I worry about what would happen if I become ill again. I just hope and pray that I don’t.
Nikki
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14 Comments
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Complaints are hard to make, as those accused can simply say you were in a time of crisis and 'misremembered' the situation.
Few other health professionals have this get out of jail free card.
I have personally had some dreadful things said to me over the years, excellent care is normally there but occasionally you will find someone that shouldnt be working in a caring profession.
If possible, I have someone with me. Many mental health professionals dont like that - their excuse is that your friend may be prompting you or preventing you from saying something important! Which is of course nonsense.
These things said, you should still trust the crisis team. I say this because up until that point they had helped you so many times in the past! The ones that shouted at you shouldnt be assigned to you again.
best wishes, Richard
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I was sorry to read Nikkis story and what happened that night sounded horrendous.
Im glad Nikki has had successful periods of treatment by CRHTT. whats frustrating is some clinicians can be frustrated and disheartened and believe certain patients are "time wasters" or "attention seekers". It sounds like one persons practice has undone the good work of a whole team....this happens a lot with crisis teams.
If someone is distressed and experiencing thoughts of self harm or suicide they deserve the best care.....empathy fundamentally. I would imagine the practitioner in A+E was being "boundaried" and made the decision not to admit in 5 minutes flat. Thats her call and I may have well done the same in that position. however its still somebodys life and patients deserve time, attention and some kindness (whilst still maintaining boundaries). I will try and learn from Nikkis story about my practice.
Im sorry about what happened with the police. I cant comment on what happened in police presence. When You get a call from someone who is distressed+++ that is the only thing you can do. I can understand why the practitioners didnt tell Nikki because they wont have wanted to escalate the situation. I think I would of though because communicating your decision and being honest is how you treat somebody with respect. -
Your story is sadly not at all uncommon, there are accounts such as yours [and worse] all over the internet. Crisis teams have become very powerful, they have a lot of control over if/what service a person gets and can over ride an A&E consultant/GP regarding admission.
I've heard of others being taken from a bridge, spending a night in police cell and still the crisis service offer nothing. Then others being offered nothing on the basis of their diagnosis alone, or simply having medication brought to their homes and nothing else.
I've saw a local crisis service in action in someone's home a few years ago and was shocked by what I saw, very aggressive and verbally attacking. I would be scared rigid of that service seeing me.
As for apologies, the NHS never offers an apology unless it's negligence of the death/brain damaged/paralysed variety and even that takes a few years to obtain, because of the fear of litigation. Most people don't want a court case, compensation or the entire service sacked, most people just want someone somewhere to say 'We're sorry, you didn't get the best service we could have offered'. -
..and money, we can't pussyfoot around this - service cuts need to stop and be reversed.
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Hi everyone, and thanks for your comments on my story.
Richard, whilst I am thinking rationally now I completely agree with you but when I am ill I imagine that this experience will take over and I will be too scared to allow them in my house. Time will tell I guess! My complaint was dealt with really well and a lot of my points were backed up. I received an apology, which suprised me, and they promised to address the training deficiences.
Becky, I am guessing you are an RMN? I am certain that the practitioner decided even before I arrived at the hospital that they were not going to admit me, although I don't agree he was being 'boundaried'. The same practioner came to my home the previous day and told me I was being manipulative and that I had a personality disorder (which I don't) and brought print outs from the NIMH on BPD, so I think I was fighting a losing battle. He lost sight of 'me' as a person and the symptoms I was experiencing because he had pre-judged me. Either way, I never received the care I should have.
I wasn't taken to A&E, I was taken to the hospital's 316 room and interviewed there on my own. I have to say, the police were great and the crisis practioner I was speaking to on the phone did the right thing in not telling me he had called them - if he had I would probably have ran before they got there.
Mindreader, it is for exactly those reasons that I agreed to tell my story and I hope it helps to inform crisis teams of what is not acceptable and to identify best practice and make this consistent across all health trusts.
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I was assessed by the CMHT six weeks after giving birth, and they said I wasn't depressed and needed no further input (the GP disagreed and was furious with them). Signing me off the service they had failed to pick up on the classic symptoms of PTSD... Pretty poor if you ask me
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A bad experience but not rare as others have said. Difficult to change the system as it's been like this for so long. I got shouted at and threatened by a psychiatric registrar and on another occasion an A&E doctor said: 'Next time make sure you take the whole lot' when I'd overdosed. Made me hard and took a vow to keep things to myself in future.
However, I couldn't help noticing this:
'I also receive excellent care from my Community Psychiatric Nurse (CPN) and my counsellor, both of whom I see every week.'
I don't know if the counsellor is privately paid for, but to have input from two professionals twice a week in this day and age - you're very lucky. So this is the positive side of the story.
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I too have had a snap diagnosis of BPD waved at me when i got annoyed with the intransigence of a mental health team. That was by a CPN not a psychiatrist. the CPN even wrote a scalding letter to my GP outlining her "diagnosis". Over 20 years and multiple sessions with psychiatrists and psychologists i have not once shown any signs of personality disorder, or any signs of violence against myself or others.
I, too, had been predjudged and it seems to have been a clever way of dismissing my protests. no back up assessment was ever scheduled. its now in my medical records, so every professional i have seen from then on has treated me as if i have the personality disorder even though it has never been diagnosed.
Luckily those sorts of idiots are more than counterbalanced by the people that really do care and make a difference. I am also suprised you got an apology! This would indicate to me you have a good team to go to, i suspect you ran in to some people doing holiday cover. they sometimes arent the best.
best wishes, Richard
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Dymphna - the counselling is privately organised because I couldn't form a therapeutic relationship with the counsellor provided by the NHS and they had no other counsellors. Choosing a counsellor is a very personal thing and if you don't 'click' then its pointless. As they couldn't provide another counsellor I had to organise my own.
My CPN is wonderful. She is tough and takes absolutely no nonsense from me but she understands me too and I trust her. She has been a fantastic support to my family too.
Richard - I wish it had been holiday cover but I had dealt with these practioners in the past and they were definately part of the team. I think when you start to question treatments or refusing help you are viewed as being difficult so the BPD diagnosis is thrown at you. According to the two practitioners that night I was presenting as 'classic BPD' because I refused to guarantee my safety when in actual fact I was in the depths of depression and could see no other option but suicide. As someone who has held down a marriage for 15 years, brought up two wonderful children and worked for the same company for nearly 14 years (and been promoted!) I certainly don't have BPD and two psychiatrists have confirmed my diagnosis of bipolar. For some reason the practioners that night thought they knew better.
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I have bipolar disorder, but various mental health practitioners have initially diagnosed me as having BPD before they got to know me and revised their diagnosis. I have been shocked over the years at how much worse the attitude towards me is when people think I have BPD than when they think I have bipolar.
We bipolars get some pretty rubbish treatment sometimes but where I live, it's nothing to how awful the treatment people with BPD get.
I have been discharged by the mental health team and when I have a crisis I sort it out in the community. Thank heavens for a good GP and for the internet and a support group.
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Hi
I was going to talk about my experiences with the local crisis team, until I read that Richard's crisis team used Borderline personality disorder as an insult, and then you, Nikki, seem to think that those with borderline are incapable of achievement or rational behaviour. I am extremely angry.
How dare you suggest that as someone who is successful you "certainly don't have bpd"! I've been a single father for the last fourteen years, and in that time I've had cancer, worked for myself in what's probably the most difficult and demanding field to be a freelance in, and won three court cases over custody of my daughter., who is, despite being sorely messed around by her mother and grandmother, a balanced and achieving individual, and all with borderline personality disorder and the usual depressive conditions that accompany it.
Is it not appalling enough that mental health "professionals" can use the condition of borderline personality disorder as a pejorative term, without service users who should know better joining in? -
Edmund
i am sorry you think I was suggesting that BPD sufferers can.t be successful as that wasn't my intention. As I don't have the disorder I had to base my comments on the symptoms listed in the ICD10 which lists instability in the areas I mentioned as diagnostic criteria. That said i do feel your comment was unnecessarily aggressive, I thought long and hard before agreeing write this and didn't expect to be attacked.
My main point in my last comment was that health professionals see a diagnosis of BPD as negative and those with it as manipulative and that it was due to this that i received such awful treatment.
Apologies once again if it didn't come across as this and if you read other comments on here you will see that my experience is not unique. -
It really shows how on some occassions help is good and at other times not helpful. I often wonder when physical conditions are treated in this way complaints are often listened to.
I to live with BPD and like everyone else have had good and bad care. The scariest part about crisis is emotional support facilitated in a calm manner is essential. Having the fear of being hospitalised or sectioned is scary and can exacerbate symptoms. We are never sectioned for having a heart problem or diabetes.
I always think if mental health was always treated sucessfully in an appropriate manner would psychiatry actually dissapear? Acute care does need to be more cohesive and please health care learn from peoples lived experience. All staff in this field need empathy and understanding as well as the ability to move people foreward.
Nikki as you say you have had good and bad treatment but in reality it should all be good. I have learnt so much about life after a long illness that I still live with and have been lucky and do work. It worries me that the current recession is making more people unwell and services really do need the same standards country wide.
I am still to this day not sure why mental health services are so variable, the good practices and staff should be kept and implimented country wide. Only through blogs like yours truely help to change archaic services. We telling our stories will eventually impliment change. Best wishes to you and like me keep fighting and remain positive. -
I had a breakdown 7 years ago at the age of 42 and like you have had widely varying care when in crisis. I have two children and have been married for 22 years and, although I have had periods of depression throughout my life, the only treatment I had needed before was treatment from a clinical psychologist in my early twenties. My care deteriorated rapidly once I was given a bpd diagnosis. I have met many people now with bpd diagnosis and it is a crippling condition, but by and large the diagnosis is a disaster because, once given, patients are no longer believed. Suicidality is seen as manipulative attention seeking, depression is seen as lack of effort to pull yourself together, I have been assaulted and verbally abused by psychiatric staff and been signed off by the crisis team because, in a very bad patch, I phoned them in crisis once a month. I was told that I was blocking the phone for people who were really ill.
The good news is, there are professional people for whom a diagnosis is not an excuse for discrimination. Until the majority are like that, anyone with a long term condition will run into problems. Increasingly an inability to recover rapidly, sometimes through lack of psychological support or effective drug therapy, seems to lead to a bpd diagnosis and a withdrawl of support. There are specialist pd services but they are small and will not cope.
THe NHS needs to see the patient or service user first, people's illnesses come from a mixture of predisposition and enviroment (childhood and adult). It is a matter of listening and not judging, facilitating survival, not trying to stuff people into boxes which in reality fit very few.
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