"dealing with a manic relaspe and unable to get any support from mental health services"

About: University Hospital Of Wales / Accident & Emergency

(as the patient),

Since writing my last story which refers to events of last year I have again been seriously unwell and have again been refused access to out of hours mental health services and the only reason I was in a better position to deal with this relapse than I was that last year I took matters into my own hands and made a medication crisis plan with the head of pharmacy in a meeting with her in July last year which I set up myself. Without this 45 minute meeting I would have been in exactly the same position as I was a year ago and probably would have ended being sectioned again.

I recently I walked out of a meeting with a social worker when he told me he had assessed me as having no need of social work and in a crisis I could access the crisis team. This social worker has written an assessment that says many things that are simply untrue as he did not know me so did not know how I present as unwell and it seems to me has been highly selective in what he chose to include in his assessment. He also begins by saying that there are no capacity issues but he does not say how he knows this. I did not understand that what he was doing was an assessment as at the time I was being sent appointment letters I was actually too unwell to be able to read or retain any information so all I could do was look at the information in bold which gave the time and the name and turned up at this time.

Also at my appointment with the consultant at which he was present and was the first time I met him I was told that we would be working together on a care plan and this is also what it says the in letter to my GP. I think I have right to be confused that he then told me what he was doing was an assessment. No one has worked with me on a care plan since I wrote my first story, despite the fact that under the Welsh assembly measure I have a legal right to a care plan. My advocate has been faxed a copy of a document that is supposedly my care plan, however it is complete blank apart from 2 pieces of information, one of them being my current dose of mediation which is already out of date. Although producing a blank document may in some sense satisfy the legal requirement this is hardly in the spirit of the measure.

At the appointment where I first met this social worker I told my consultant clearly that I had needed to implement the crisis plan I had made with the head of pharmacy and was therefore on the maximum dose of medication and not only that I had also needed the maximum dose of lorazapam. I thought giving a consultant psychiatrist this information would be enough for her to realise that I was seriously unwell. Apparently not as she did not offer me a follow up appointment simply telling me that I was doing very well. In all my subsequent contact with the social worker I assumed that he knew I was seriously unwell and dealing with a psychosis however when I spoke to him on the phone following a terrifying bank holiday weekend during which I had started to get insight into the fact that he I had been paranoid and hearing voices he told me that I had been completely well while I had been under their team. This made me feel even worse to realise that they as a team had not picked up anything that had actually been happening to me and made me feel even more frightened.

I found the phone call completely unhelpful so I went to the team to try and see the duty worker even though at the beginning of my psychosis the lead CPN had ordered me to leave the building when he and a member of his team had been unable to even introduce themselves without resorting to rude bullying tactics which I have complained to the nursing and midwifery council about since they frightened me so much when I was already unwell. And they went on to deny me access to the crisis team that day but they did not actually know what was happening to me as as I have said they were not even to able to introduce themselves.

I was denied to the duty worker on the occasion after the bank holiday being told she was dealing with an emergency. I was not told that I could wait. I would have accepted that I might need to wait a long time and that she might not have much time but I was flatly refused access and only offered another phone call with the social worker who I had already found completely unhelpful and felt really let down that he had not understood that I was unwell in any of my previous contact with him.

I have also been to A and E twice during this last relapse. I was trying to be very clear with professionals about what I could and could not deal with. I was having serve short term memory problems which is something that happened to me for the first time last year. This has serious implication for how I can deal with a relapse as with this problems it is very difficult for me to manage my medication safely myself.

On the first occasion I had been forced to call an ambulance as my phone call to the GP out of hours service had resulted in them saying that if I could accept a call back due to the fact that my phone was faulty I could not access their service. I tried to ask if they could send a taxi for me to attend their service in person but they refused saying they did not have the authority to do this. I tried to ask them to go the person with that authority to ask them but t hey refused leaving me no option then accept of calling an ambulance.

The paramedics were extremely rude, hostile and unhelpful. They could have helped me resolve the problem in my home if they had been prepared to be kind and calm. They could have helped me locate my medication and sort out what I had taken and what I had not. Instead they were rude and bulling and angry with me for calling an ambulance and wasting money. As I have already explained I was forced into doing this. They told me there was nothing they could do as there were other places for people like me and if they took me to A and E there was nothing they could do for me there and they would just send me home. This is not true that there are other places for people like me, this an offensive, stigmatising and degrading way to talk to a mentally ill person. We still do access the health service in the same way as everyone else, through GPs and A and E. I waited for hours in a private room and I did feel calmer and safer that I handed over all my medication and although I would have to wait I thought I would get appropriate help. When I did see a doctor he told me all he could do was send me home. I was alone and very ill. Having waited that long why did he not refer to he duty psychiatrist? He was simply confirming what the paramedics had said that all they would do was send me home. How on earth is someone in my position supposed to get help? I was then supposed to wait for a taxi but I found the environment I had to wait in too chaotic and scary so I said I would walk home as by that time it had started to get light. However I was not really safe on my own and a very good friend who gets up early drove to a bus stop and came and took me home and helped me phone the GP when they were open.

The second occasion it was the out of hour GP who arranged an ambulance as I had taken an accidental overdose which I think is evidence of how hard I was finding it to mange this situation myself which by that point I think had gone on for over 2 months. On that occasion the paramedics, both female was totally professional and kind and helpful. They told me that if they took me to A and E they could try and arrange for me to wait in a private room which is what I had done on the previous occasion. I understood they could not guarantee this as many things can be happening in A and E but they said it was actually fairly quiet for a Saturday night.

The room turned out not to be available but I agreed to wait as the waiting area at that point was empty. I wanted and saw a male nurse and did my best to explain things to him. I found him hostile for no reason. He asked for the name of my next kin which I gave him along with a comment because my dad has the same name as a famous person and I wanted to clarify that I had given the correct name. His response was to ask me very coldly the same question again. I had already answered and I found this very intimidating.

I waited again but other people were now waiting as well and because I was still unwell which is one reason why I had made the mistake with my medication I found it harder to wait and the other people asked me questions like how long had I been waiting and I found it hard to interact with strangers in the state I was in. I then got called by a female nurse who said she was doing to do a heart trace. Her manner was bullying and as she started to touch me and do what needed to be done I started to cry, not just a bit but real sobs and this was because of my 16 years experience of terrible treatment from nurses within this trust, some of which are mentioned in my previous story. She did not stop or offer any reassurance, instead she just said in a bored bossy voice why are you crying. I said because I did not like people touching me when I am not well. She responded by saying why are you saying you are unwell. To me this just shows how inadequate the care is.

I was there because I had taken an accidental over dose of anti psychotic drug and a nurse who is supposed to be trained professional was unable to make the link that I might be psychotic and hallucinating, hearing voices, having any number of experiences that might make it difficult for someone I don't know to touch me. I felt like saying why are you a nurse if you have no compassion or sense. She said well we're just doing this and continued even though I was sobbing really badly. As soon as she finished I was still crying so I asked where the toilets were. She showed me and I tired to compose myself so I could wait again in the public waiting area. I could not regain composure and when I came out I thought someone might notice that I was very distressed but all that happened was that there was now a queue for the toilet so they were annoyed with me for being in there so long. I tired to wait but I also knew that if I had to wait hours and hours in the long run this would be bad for my mental health because I knew that what I really needed was sleep.

I went to the nurses station and waited a respectful distance away but I was ignored until someone came back from a break. I tired to explain that waiting a long time would be bad for me and if this was going to be the case it would be better for me to leave. I was not trying to queue jump. I knew there could be any number of things going on that I did not know about. I just wanted to know if I was going to have to wait hours so I could make the decision to leave if this was going to be the case. She said she would let one of the doctors know and get back to me. More and more people were now arriving and I was finding the waiting room area really hard to be in. No one had got back to me so I went and asked again if it was possible to wait somewhere else. They said no it wasn’t. In the end I made the decision to leave without seeing a doctor, partly because I knew waiting hours with no sleep would be bad for my mental health and partly because the unfeeling hostile attitude of the nurses was making me feel very afraid and reminding me of all my negative experiences, especially those in hospital last year.

I had a planned appointment with my consultant soon after this and explained that I had taken an accidental overdose.

At this appointment I also tired to explain that I had psychotic symptoms probably that point for about 3 months. My Dad was with me and said he thought I did make it clear. The social worker was also present and by that time it had already been decided that I would have no input form social work and I was not well enough to put in writing my thoughts on the assessment. lots of it was just downright wrong and also in my view it was incomplete as we did not have time to discuss the practical needs I have running my home where I live alone. And partly there was no time because I spent a lot of the second appointment trying to explain that I had been psychotic and I said that I might well have told him everything was wonderful at the first appointment but that is because I was manic. None of this discussion is included in the written report of the assessment. There was also a female staff member present who I think was introduced the first time as a social work assistant. However no one introduced on the second occasion which was a few weeks later. It seemed to be assumed that I could remember who she was. However I could not as I had been unwell the first time I met her.

I have now been given access to psychological input and although this is very useful and helpful I do feel angry that I have to wait 18 years for this despite accepting a referral from my consultant when I first came out of hospital when I was 20 for a service that involved a psychologist and another professional visiting the family at home. I had to wait 6 months for this as the service was facing a cut which although did not happen caused a 6 month delay and ultimately they were no help, only being patronising and I regret it as this was my first contact with that team and it ultimately led to the serious professional misconduct which resulted in a CPN resigning. I only have the opportunity for this psychologist input now because I am not being seen by the team for my area. If I was I would still only have the option of the same psychologist. I asked again for psychological input approximately 15 years ago and all I was received was 2 or 3 sessions and I felt patronised again as I had by him before and after these appointment out of which I got nothing he discharged me again. The psychologist I am seeing now who I am finding very helpful has now told me we will be working together for at least a year. Although I am glad and grateful for the opportunity now I will never get the past 18 years back and it is too late for me now to have a family which maybe could have been possible if I had had this type of input earlier.

Despite everything I have written here I still have no care plan and my GP has been told when she contacted my consultant to ask how we are supposed to handle a relapse that there are many drug options and she will not commit to anything now and will see me on an emergency basis if I am unwell. This is basically a disaster. She does not understand how quickly I can become very unwell and if I become unwell again at a weekend as I did last year we will be back in the same situation. Also I would very much like to know what she thinks these many drug options are since a referral to the academic team around 2 years or so the only options were the drug I am on now or clozoapine. This makes me wonder if she is saying this without being familiar with my medication history? This has already happened with another consultant who told me confidently we could try a drug I had already tried 10 years previously but had been unable to tolerate it.

The ombudsman are now investigating my complaint regarding the events of last year.

However I feel forced to post again with the events of this year as I feel the standard of the mental health services I am being offered, apart from the psychologist are so low as to be completely useless to me. However my illness is serious and I am fearful of ending up sectioned again or if they take as long to section me as they did last year I could die before they get round to it and if I am going to end up sectioned on a regular basis my quality of life will be so low that I may decide suicide is a better option. And I know it is all unnecessary as I did keep myself out of hospital for 17 years when I had the right input from dedicated professionals.

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Response from Sheila Harrison, Assistant Director Patient Experience, Cardiff and Vale University Health Board

Thank you for your feedback, I am aware that the Ombudsman is now considering the issues you raised with the Health Board last year. The Health Board has informed the Ombudsman that senior staff would be more than happy to meet with you to listen to your concerns and to agree with you your future care.


Sheila Harrison

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Update posted by dragonvoice (the patient)

I have given the Ombudsman my reasons for not wanting a further meeting and said I was happy for her to pass those reasons on. I don't feel it is appriopate for me to discuss those reasons on a public website. Also that is all about last year and this story is about this year. I have been trying very hard to commuicatte my needs to my CMHT. I don't feel that I should have to attend that sort of meeting to get my needs met. it should be a routine part of what CMHTs do.