"being refused a second pyschatric opinion"

About: Advocacy Support Cymru Cardiff & Vale University Health Board Pentwyn Health Centre

(as the patient),

I have been asking for a second opinion from our local academic team who offer this service in management of complex psychiatric cases. There is no cost for the service to the NHS. I was seen by this service a few years ago and have tried everything that was suggested then so it seems to me perfectly logical to now go back. I have been requesting this for a year now.

I have suffered from bi polar disorder for over 19 years and unfortunately I have not responded to standard treatments. I was extremely fortunate to have excellent care for the first 10 years or so from an academic consultant. And for many years following his departure I did have excellent care from a pharmacist who was qualified to prescribe under guidance from a consultant. However since she left over 2 years ago I have pretty much been left without any effective support and it in that have ended up sectioned and remaining unwell for an entire year and becoming severely unwell a year ago without anyone from my new CMHT realising what was happening to me (see previous 3 stories)

The Royal College of Psychiatrists say on their website that although there is no legal right to a second opinion everyone should be able to access one, especially if a significant decision has been made.

I have not received a satisfactory explanation from my CMHT as to why my symptoms which all my family, friends and GP practice knew were symptoms of a manic relapse with psychotic symptoms was not picked up by them and why instead they have attempted to explain them as personality difficulties. My own self reporting once I was well enough has also been ignored. Given all this I do not have confidence in the medical team and this is another reason for seeking a second opinion.

I have repeatedly been told that they see no need for a second opinion as I am currently stable. While this may be true right now, over the last 3 years I have suffered 3 serious relapses all with psychosis and all happened while I was taking medication as prescribed and on 2 occasions increasing it rapidly. Last year despite taking the maximum dose of an anti psychotics I was still experiencing psychosis for 3 months. This is very worrying for me. 3 years ago we were able to stabilise things much more quickly with a much lower dose. I am fearful of how we would manage another relapse. Given all this I hardly see that the argument that I am currently stable is robust. I have been asking for a medication crisis plan for the last year as well and this has also been refused with my then consultant saying there were many medication options and she would not commit to anything. This shows no understanding of quickly I can become unwell (evidence from 2013 when I ended up sectioned 6 days after I said I needed help to prevent this) it also shows no understanding of my medication history and there are not in fact many options because I have already tried most of them.

I was also under the impression that this referral has already been made. I attended a meeting with the manager of my CMHT in March which was also attended by my advocate and the commissioner of the advocacy service who is an employee of the health board. The commissioner became involved after my advocate had outlined my situation in a meeting. The commissioner was very concerned and asked if she could attend this meeting. I thought that was a good idea. We again made this request for a second opinion form the academic team. The following day my advocate told me she had received a phone call from the commissioner who had told her she had spoken directly to the clinical director and had instructed her to instruct the CMHT to make the referral.

Nearly 2 months later and I had heard nothing. My advocate emailed the manager who replied saying that the medical team says there is no need. It is as if the above never happened. My advocate then copied the commissioner into an email and we are waiting for a response.

I do not understand why they are so reluctant to follow good practice. There is no cost and since I have been referred previously there will already be a medication history in my notes and I have only tried one more drug since then so the referral would not require much work.

The Royal College of Psychiatrists also say on their website that the more manic episodes you have had the more likely you are to go on to have another one. Given that I have had so many manic episodes that I lost count about 15 years ago it seems to me very sensible to plan for the future rather than just wait until I do have another episode. It also seems sensible to me to look at future treatment options while I am well enough to understand and ask questions rather then when I am severely unwell.

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Responses

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

Hello Dragonvoice

I was worried to read your comments posted on the site and contacted my collegues in Mental Health Services. I understand that you have a meetign arranged with the Clinical Director and a Senior Nurse. I hope this meeting will resolve your issues.

Regards

Sheila

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Update posted by dragonvoice (the patient)

I think this can be resolved very simply by making the referral I have been asking for for a year now. The meeting is actually to discuss events of last year when I was left to manage a very serious relapse alone and on going difficulties with a consultant. I fail to see how discussing this issue of the second opinion will move us forward. What would do this is to make the referral.

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

Hi I have been assured by colleagues that the referral issue will also be discussed with you at the meeting

Regards

Sheila

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Update posted by dragonvoice (the patient)

I was finally seen by the academic team last month. it was very helpful as I knew it would be. I now have a letter from them which I was copied into which states clearly that their opinion which is also based on the ten years or so that they were my consultant is that there is no doubt over my bipolar diagnosis and they express clearly that they never observed any behaviour indicative of personality disorder.

I explained at this appointment my high levels of frustration when I was very unwell and it was not being seen as bipolar and that I had much less control over my frustration because I was manic and I was clearly told that this was in itself a symptom of mania. I did already know this but again it raises the fundamental question which still has to be answered. Why were my symptoms of bipolar not being seen as such by my CMHT during 2014?

I was also told my by new consultant when I was finally referred in October that he was not taking it personally. I find this a strange attitude. why would anyone take it personally? I have a serious mood disorder that has not responded to any standard treatment options. This means in my view that it make perfect sense for me to access the academic team to discuss future treatment options. it seems to me there is far too much about consultants egos going on here when what should be put first is the needs of seriously ill patients.

at the end of the appointment I was clearly told that I could always come back if I tired all treatment options suggested. This told me 2 things that the referral was completely appropriate and it would be appropriate again. I can only hope that if I do need to be referred again I will not face another 18 month battle, being blocked by everyone including the clinical director who tried to tell me I did not need the referral if my diagnosis had not been changed, completely missing the fact that I did still need input on future treatment options.

The letter also points to the need for a detailed medication crisis plan, something I myself have been asking for for 3 years and also says I need to remain under secondary mental health services.

I hope having these in writing from a professor will mean that I will now get the care I need and have been without for 3 years.

I also would like to request a change in mind set from consultants about how they view and use this service. it is a valuable resource for patients who have already tried many treatment options. It is not a criticism of the care of the consultant.

Response from Cardiff and Vale University Health Board

Good mornong,

We are pleased to note that you had a positive experience with the academic team and trust that you will discuss this opinion with your new consultant at your next appointment.