Once I was naive. I believed that, I knew that, regardless of how strapped for cash was the NHS the one thing upon which we could rely was to be treated with compassion and caring. Very soon after I started accompanying Mrs Carr to medical appointments I was disabused of my silly and naive ideas.
They couldn't even do courtesy and respect and these two properties come before caring and compassion. Unless a patient is treated with respect and courtesy, forget anything better. We had to forget anything better.
I have been prompted to write because Deb Acle has raised the issue in two posts (1 and 2) highlighting the views of two eminent doctors - Dr Youngson (more here and here) and Prof Goddard (more here and here).
In this post I will list a few examples of Mrs Carr's treatment by the NHS failing to reach even the lowest level of acceptability. These are not necessarily the worst examples but they illustrate difficulties in 4 different areas of the NHS (GP, psychiatrist, consultant psychotherapist and NHS bureaucrat). The more I learn the less surprised I am. If doctors can't even access proper care for themselves or their family what hope do we have?
The high water mark of my naivety, of my belief in a caring and compassionate NHS was reached in May 2007 on my very first accompanying visit with Mrs Carr to her GP. At this time, Mrs Carr was coming to the end of sessions with a psychologist who worked with cardiac patients. Mrs Carr and I were very concerned that there were no plans in place for on-going support beyond the ending of the current sessions. The GP was very supportive and mentioned 4 options:
• she would ask the psychologist to continue with Mrs Carr until support could be put in place
• Mrs Carr could see a psychologist privately
• Mrs Carr could have sessions with the GP as support only and not therapeutic
• Mrs Carr could approach her MSP to complain about the lack of services
At this time I was delighted. There was no doubt that Mrs Carr would get support.
When next we met Mrs Carr's GP the position was turned upside down as follows:
• the psychologist would NOT see Mrs Carr
• Mrs Carr should NOT seek private help whether psychologist or counsellor
There was no mention of the GP providing time and, of course, no mention was made of the MSP.
Clearly the GP was in possession of additional information which supported the change of heart. We suspect, but have no evidence yet, that the nurse therapist who assessed Mrs Carr at the specialist eating disorder clinic was the source of the negativity.
We were too stunned then to ask why but later we asked and asked and asked and asked. From that day on, no-one has explained why support and treatment was denied.
Did that GP show compassion and care? At the first appointment mentioned, yes but never again. In fact, Mrs Carr was not even shown courtesy and respect because not once did that GP even show that she understood the major difficulties with which Mrs Carr had to live. She didn't even listen to concerns.
Another important example concerned a self-screening test for depression (PHQ9). This has 9 questions each of which which has to be rated on a scale of 0 to 3. The highest (most sever depressive score) is 27. I handed in a form from Mrs Carr in which she scored 25. Any score over 20 is considered to indicate severe depression. Also any form with 5 questions scoring 2 or 3 each indicates a major depressive disorder. Mrs Carr had eight questions scoring 3 and one question scoring 1. The GP took the form and said and did NOTHING. Interestingly, some months later when I had an appointment with the same GP because I was concerned that I might have mild depression she gave me a blank PHQ9 form to take away and complete. Therefore, this form was used and was considered relevant as a screen for depression but not for Mrs Carr despite her huge score.
If there were a form to rate the GP on care, compassion, respect and courtesy, she'd score 4 big zeroes.
In June 2007, Mrs Carr overdosed but, fortunately, I returned much earlier than expected and, after I dialled 999, she was admitted to A&E. During the late morning, after I had returned home, I was contacted by a young (SHO I think) psychiatrist. I was impressed. She seemed interested, empathetic, helpful and caring but how different she was when I arrived to bring Mrs Carr home!
She was distant, cold, uncommunicative and unhelpful. She said that Mrs Carr was to stop her anti-depressants immediately and there was to be no support on her release. I was virtually speechless. How could she leave a fragile hurting patient to her own devices when she had just tried to take her life. She'd probably succeed the next time. I told the psychiatrist that, without support, I would not be surprised if Mrs Carr took her life. I apologised to the psychiatrist before I said, "If anything happens to Mrs Carr I will sue your collective arses off!"
Fat lot of good that did! The psychiatrist had decided that she would just sit there and say little and let me speak myself out.
The one bit of information I did get was that between my morning telecon with her and my arriving to collect Mrs Carr, she (psychiatrist) had spoken to the assessing nurse therapist from the eating disorder clinic. Again there is no hard evidence but now there is a pattern.
A few days before the suicide attempt Mrs Carr had completed another PHQ9 form and this time she scored 23 (from a maximum of 27) but still in the severely depressed / major depressive disorder range. I can't remember if I gave copies of these two forms to the hospital psychiatrist but I do know that I told her about them. She too was totally uninterested in the results.
Here again I faced a clinician who showed no concern at all about Mrs Carr's condition. I was, at least, afforded the luxury of being in the psychiatrist's company for about 1 hour but I was shown no respect. The decisions were made and I was not going to be told anything about the basis for them. Also I must point out Mrs Carr was not given any information either.
Compassion, caring, respect - 0
Courtesy - 0.5.
I contacted Social Services, charities, anyone I could find that might just about be able to offer something but I drew a blank. This was the point at which we felt that using our MSP was the only way to get help.
3. Consultant Psychotherapist
This man I am sure was by far the worst clinician I or Mrs Carr have ever met. He was downright dangerous and I am sure Mrs Carr could easily submit a formal complaint about his behaviour. I have posted about him twice (in April and May this year). Here I append part of my May post which contains the very worst of his abuse.
"Yesterday, the psychological abuse reached a new and very dangerous level. After about 30 mins the consultant said that he had all that he needed. Mrs Carr asked what he had found and he said:
CP: "Psychotherapeutic relationships are damaging to you and should be avoided"
Mrs C: "What about normal emotional relationships?"
CP "They too can be harmful and should be avoided."
Mrs C: "Are you saying that I should be denied relationships?"
CP: "There are some for whom it is harmful. You should consider this"
Mrs C: "Are you saying that I should be denied the basic human need of relationships?"
CP: "We are all individuals?"
Mrs C: "Are you saying that it is not a basic human need to have relationships?"
CP: "We are all individuals"
Mrs C: "Now I know exactly what you mean, there is no more to say" At this point Mrs C walked out.
It is clear that the counsultant DID mean that Mrs C should not have relationships in her life.
Now, EVEN IF the consultant's view was correct, EVEN IF, this should have been handled with immense sensitivity but it wasn't. Immense insensitivity!
Imagine saying to anybody that you should never be emotionally close to anyone ever again. Imagine their shock. Imagine their distress. Now imagine saying this to a psychologically fragile person who has already attempted suicide twice. If anything is likely to push one over the edge it is this.
[I thought I had calmed down but as I write this I feel my anger rising and RISING - apologies]
The consultant's behaviour, at best, is crass, cold, calculating, callous, uncaring and unprofessional. At worst ..........."
I think it's clear that, given the words I have used to describe him ,this clinician would score zero on compassion, care, respect and courtesy!
The information so far shows that there is a massive dearth of positive characteristics in the NHS or, at least, being shown to Mrs Carr.
4. NHS Bureaucrat
Mrs Carr's direct contact with NHS bureaucracy came about through her MSP who wrote on Mrs Carr's behalf to NHS Lothian. To demonstrate their utter disdain for all human decency I append an entire post from May this year.
"The two NHS responses to our MSP's letter require a degree in "reading between the lines" before the true meaning is deciphered. Apparently straightforward and reasonable sentences, on analysis, show a very different meaning.
I'll give one example from NHS Lothian's second reply to our MSP: a reply which, I'm sure you remember, took 6 months to arrive. Tomorrow I'll give another classic.
The MSP said, I think, "The important issue of Mrs Carr's suicide attempt and continuing self-harm are mentioned only in the last paragraph of a 5 page letter and then only obliquely."
Six months later the NHS managed to push out a reply which contained words like, "We didn't intend to dismiss Mrs Carr's suicide attempt but rather we responded to the points you raised in the context of the information provided by the clinical team."
I must admit this is a classic of its type. What the NHS replier is really saying is,"You asked about Mrs Carr's suicide etc but the clinical team did not give me any information about the suicide and so I was unable to answer your question." If we accept that the replier was not given any information about the suicide the replier could, and should, have gone back to the clinicians and insisted that they give appropriate information. Of course, this didn't happen because they did not want to answer the question.
This gets even better. Having explained in the second letter why there was no information in the first letter about Mrs Carr's suicide etc the replier still did not answer the question in the second letter. I hope you followed that.
Therefore, despite having been asked twice, the NHS in two letters avoided saying anything about Mrs Carr's suicide attempt and on-going risk of self-harm although they explain (if you believe it) why they didn't answer in letter 1.
There really should be an award for writing in such an apparently clear and reasonable way but actually in a very obstructive manner."
At no point is Mrs Carr written about as though she is human or even alive. The obstructive way in which the letter was written indicates that NHS Lothian has never had any interest in, or intention of, helping Mrs Carr.
NHS Lothian may smile now because Mrs Carr is no longer registered with NHS Lothian but is now with a GPs' practice in a different health area.
Perhaps they, the Commission, realise just how dysfunctional are mental health services in Scotland.
Perhaps the Commission sees that Mrs Carr's case has many negative features which make it worthy of investigation.
Perhaps NHS Lothian will get its comeuppance.
Come on the Mental Welfare Commission for Scotland!
Investigate NHS Lothian 's maltreatment of Mrs Carr.