"taking a complaint to the Ombudsman"

About: Advocacy Support Cymru Whitchurch Hospital (Cardiff)

(as the patient),

I am writing this because having taken a complaint to the Ombudsman for Wales I feel I have been forced to accept the finding of a report which contains many inaccuracies and down right untruths. I have been told that I do not have the right to appeal against this decision even though the standard of the report is extremely sloppy and is not based on evidence. The entire report is based in the assumption that because I did not require hospital admission I was relatively stable. All that can actually be concluded from this in terms of evidence is that I was not in hospital. Anything else is an assumption and in this case it is completely wrong. There were many occasions during that 17 years when I was so unwell that I could have been admitted to hospital. However my one and only experience of this hospital was so negative and terrifying that I had no wish to repeat it and chose to mange my condition outside hospital and was supported in this by my consultant and my GP practice.

Once my supportive consultant had left I did get the support I needed from a pharmacist who was qualified to prescribe. This is an unusual and I think rare qualification and role for a pharmacist to have and I do not think the authors of this report have understood her role correctly. They also do not seem to have read any of her notes, basing their report solely on the notes of consultants psychiatrists who also did not bother to read the pharmacists detailed notes and updates and therefore these doctors did not know the true situations I had face between my appointments with them. They have not understood that the whole point was that the pharmacist saw patients who had high levels of need. If I had been relatively stable as the report describes me I would never have been a patient of the pharmacist. If my history had been looked at properly for this report they would have seen that I was constantly trying new medication options and that no standard options had ever worked. They do describe me as an expert patient but they do not seem to understand what that actually means. It means that I can spot the signs of my relapse quickly myself and act accordingly by increasing my medication and that I needed to do this frequently as my condition was not well controlled. This is a very different scenario to being relatively stable. If I had not learnt how to self manage and employ these skills then yes I would have been in and out hospital constantly or already dead. No one has listened when I tried to explain that this means that much of the report is not valid. There are so many inaccuracies that it would be impossible for me to include all of them. On page 3 alone it says that I requested to change consultants and this meant that I also changed teams. This was not the case I simply asked to change consultants within the same team. It is true that I was being seen by a different team for my area but that was due to suffering professional misconduct from the team from my area over ten years ago and my care was transferred through the proper channels at that time. It says that I was seeing a consultant at that team twice annually. I was actually being seen every 3 months although I did not understand why as I got nothing out of those appointments and the consultant never read the pharmacists notes and for many years the pharmacist had been my first point of contact.

Another complete untruth in the report is that prior to me being detained under section 2 in 2013 I refused contact with the crisis team. This is not true at all. I accessed the out of hours GP service at the weekend which is what I had been told by the pharmacist to do if I needed help out of hours and that through this service I could ask to be referred to the crisis team and this is what I tried very hard to do although I was blocked at every level. The first doctor I spoke to the on the phone told me I did not need to increase my anti psychotics and I should continue to take benzodiazopines. I knew those drugs were not working and I needed to increase my anti psychotics really fast but I needed supervision to do so. I insisted that I was given an appointment but it went really badly. The doctor had only been allocated 5 minutes to see me being told I simply needed my repeat prescription. She said she did not have time to look at me as she needed to keep typing things into the computer. I asked for a referral to the crisis team. She phoned them but then she passed the phone to me to speak to a nurse. At the first level of my complaint I was told by a senior clinical member of staff that I should never have been handed the phone that the doctor should have made the decision either to refer or not. Yet this has not been dealt with at all despite me taking my complaint to the highest level I can. It seems none of my complaints about the service I received form the GP out of hours that day have been investigated at all. If I had been referred and assessed at that time my admission to hospital on a section could have been avoided and to ask me to accept otherwise is deeply insulting. The nurse started off sympathetic but as soon as I came across as intelligent and well informed about my illness his attitude changed and he told me that if I needed something to help me sleep I should go to A&E and wait for the duty psychiatrist. I had already told him that I had a diagnosis of bi polar disorder and I was seeking help with dealing with a manic relapse. I was frightened that I was not going to get the help I needed and I knew if I did not get help that day I would end up sectioned. I told everyone I spoke to that day that I was asking for help now so that I did not get sectioned in a few days time. What else could I have done? And on top of all that of all the attempts I made to get help that day I had also written a letter to my consultant only 3 weeks earlier in which I set out all my concerns about being discharged which he said he would do, not seeming to realise as he too had not read the pharmacists notes that I was not at all stable and asked for a medication crisis plan. I had also rung the team to check that this letter had been received and was told that it had been. Really how can anyone expect after I made all this effort that I was anything other than extremely angry to read a supposedly independent report which says that hospital admission on a section was not avoidable as I refused to access the crisis team?

To quote “deterioration appears to have been quite rapid over the weekend. When she presented in crisis, most of the crisis interventions seem to have been initiated promptly. It is difficult to see what other interventions should have been put in place when she was having difficultly engaging with the crisis team. ”

I find this appalling. The difficulties I had engaging with the crisis team were that they did not want to know and the out of hours GP did not follow correct procedure. If a medication crisis plan had been in place I would have been able to deal with this relapse as I had dealt with countless others over the previous 17 years and I had already asked for this to be put in place in writing. I know myself that I can deteriorate rapidly which is why these plans have always been in place because they can prevent precisely the situation that arose here. Nothing was done promptly. When I had a meeting with a senior clinician who said “so then you were sectioned on Monday” and I said “No I was not sectioned until Thursday. ” This was despite me going to my GP practice on Monday and telling the receptionist I did not know what to do as I did not feel safe anywhere. I then saw my GP pretty quickly but the plan was to attend my planned appointment with the consultant the next day. I assumed that at this appointment we would discuss the best and safest way for me in increase my medication with either the crisis team or a hospital admission. I could not predict that all he would say at this appointment was I don't think I can help you over and over again. To make me wait another 48 hours for help was cruel. And it was at this point that I became angry with the crisis team and with the CHMT. They should have helped me appropriately during those 6 days that I spent asking for help. Given that they did not I feel they should be held accountable but the report lets them off the hook very conveniently.

One of the ways I had the opportunity to develop my self management skills was that while I was a student in England in the early years of my illness I had access to an excellent service which was a phone line staff 24/7 by mental health nurses and social workers. The line was handed over each shift in the same way as a ward is handed over so you did not have to start from the beginning with each call. Anyone who had a key worker in a CMHT could access this service. It also meant you could access professional help very quickly when you felt you needed it. In contrast to trying to access services out of hours here which can often mean waiting hours and hours in A and E and then waiting hours and hours more for the crisis team. I have talked about this service many times in this area because I know that it really helped me stay out of hospital and my need for autonomy was also met as the support was only ever over the phone. They never came out and did visits like a crisis team would. But they did communicate directly with your key worker and you could do things like send them a copy of a crisis plan. One thing I did with my CPN there was to work on and send a copy of a document in which was reasons why it would be better to take anti psychotic medications in a crisis rather than just risk becoming worse and there were times when the staff on the phone line read out this document to me and it was very helpful. In this area they claim that they do have a similar service as there is a Wales helpline for mental health. However it is staffed my volunteers. The health board try to claim in the report that it does not matter who runs a service. This is ludicrous. Either assessing someone's mental state and providing appropriate support is something that needs to be done by trained professionals or as the health board seems to be saying anyone can have a go at doing this. Perhaps they would like to staff wards and CMHTs with volunteers? Though frankly I think volunteers could have done a better job than many of the nurses I encountered in hospital in 2013. The only thing the CALL helpline has in common with the service I used to have access to is that is provided over the phone. There are similarities end. I fail to see the point of a phone service provided by volunteers as this is already provided by the Samaritans who have been doing it for a lot longer.

I also do not understand how patients are supposed to complain about bullying behaviour by staff, particularly nurses if the investigation is based solely on the notes. They are hardly going to record their own bullying so how can this ever be investigated and put a stop too? The report mentions that while on the ward I kept phoning the Police on my mobile and that my phone was then taken away from me. It ignores the question which I feel really needs to be asked. Why was someone in a hospital ward which is supposed to be a safe place constantly calling the Police? Why did no one think to offer reassurance and kindness? All I encountered was bullying and indifference, no real care.

There are instances where the notes are not challenged such as my complaint that I was totally ignored for over 4 hours by nursing staff following my admission on a section. My Parents stayed with me that whole time so can confirm that is exactly what happened yet the fact there were witnesses to this has been completely ignored and the explanation that this kind of delay did not occur and that the ward was very busy has been completely accepted and not challenged.

Again what is written in the notes many times bears no resemblance to what actually happened. I was told very clearly by the doctor who I saw that there was nothing else that could be done until Monday and I should contact my team who knew me on Monday. I knew that a delay of 2 days would be too much and I would end up sectioned or dead. I told her I could not wait until Monday but she was adamant I would have too. Yet according to the report she recorded that she told me to access services again if my condition deteriorated. This bears no resemblance to what she actually said to me and anyway it did not take account of the fact that my condition might and did indeed deteriorate so rapidly that I was not able to access the service again.

Although the Ombudsman have upheld my complaint regarding my discharge from hospital that there were in fact no notes about my discharge and that my nearest relative was not informed.  They did not uphold the complaint that it was actually inappropriate to discharge me. I had been allowed to decrease my medication by my consultant but he did not see me, this was done via phone advice from a more junior doctor. Less than 12 hours before I was discharged from hospital I had spent 5 or 6 hours wandering round in the rain, getting completely lost in an area of the city I did not know. I had my phone on me and phoned family and friends for help but I could not hear them so I was unsure if they could also hear me when I was explaining where I was. This may have been because I was hearing voices. I was not acting at all rationally and this is because I had entered back into psychosis and was therefore following signs and symbols instead of just taking a bus back to the hospital or calling a taxi. By the time it got to 11pm I was starting to feel really scared walking alone.  In the end I got into the kind of taxi you should not hail in the street which is effectively what I did but I think the driver could tell there was some sort of problem and when I asked if he could take me to the hospital I think he must have realised I was unwell. Fortunately he was trust worthy and acted in my best interests but this was in reality a very risky thing to do. How it could have been acceptable to discharge me less than 12 hours after this happened I have no idea. When I arrived back on the ward the first thing I asked the nurses was could they phone my family and let them know I was safe. My parents told me they did not do this and it was the police who told them I appeared to be using my phone in a place that was indoors. I also remember that I was saying completely psychotic things to the nurses when they put me in the taxi. No support had been put in place. I was going back to my home where I live alone.

I was also told that I failed to turn up to an appointment at the CMHT that day. No one on the ward told me I was supposed to go the CMHT that day and I did not receive any letter telling me I had missed an appointment. I was not all sure that this appointment ever existed and anyway even if it had it seems to be totally pointless to have an appointment the day after discharge. The time for assessment would be prior to discharge to see if discharge is actually appropriate. These failings meant that I spent the following 4 weeks completely psychotic while coping at home alone. No one who cared about me wanted to see me back in the hospital as they all seen how badly I been treated there and also no one else could know exactly what I was experiencing but I did tell my GP the kind of hallucinations I had been having when I was well enough.

I think I saw my consultant 6 weeks after he had lifted the section. And he attempted to discharge me from secondary services only a couple of months later. He also advised me to decrease my medication very rapidly and it was left to me to overrule him. According to this report all of that is completely acceptable treatment. I do not understand how this can be the case.

The fact is that for 17 years I had very good support which worked for me provided mainly by two very conscientious, dedicated and intelligent professionals, along with a good relationship with my GP and the practice. All my care by the end of this period was being provided by one individual who went on extended leave. The report claims that the extended leave not being covered was not an issue as no one else complained. My understanding from the pharmacist was that none of the other patients had teams or consultants who took the attitude that because this pharmacist was involved they did not have to be. My pharmacist did not have any other patients who had the same consultant as me and given that the pharmacist covered the entire health board area and only had a relatively small number of patients I am unsure if she had any other patients from my CMHT. Within 4 months I ended up sectioned. I had been told prior to this that I would be discharged from services all together. It seems to me that the evidence is very clear that without support I became life threateningly unwell very quickly. I would suggest that a humane system would have acknowledged that all my care was being provided by one individual who was going on extended leave and it would have been appropriate to work with me to see what alternatives we could come up with so that I was not left totally without care. Not only did this not happen but also after I became so unwell they attempted to discharge me again anyway.

Also saying that no one else complained does not take account of how stressful it is to go through complaints procedures and that actually people may feel too unwell or too nervous to do this since in mental health people know they need to use the service for a long time. Certainly I have had to deal with repercussions from having complained. So I would say these fears and concerns are valid.

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Response from Cardiff and Vale University Health Board

We are sorry to hear of your experience and would advise that you contact the Ombudsman directly to discuss.

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Update posted by dragonvoice (the patient)

I have already done so and as I say at the beginning of this story I have been told I have no right of appeal.