Friday, 29 August 2008

MH4A: A Caring Compassionate NHS? No!

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.

Caring? Compassion?

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?

1. GP

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.

WRONG!

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.

2. Psychiatrist

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.

My words to NHS Lothian are, "Don't smile too soon. Since I posted about the Mental Welfare Commission of Scotland's investigation into Mr G (1 and 2) this blog has had 10 visits from the Commission.

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.

26 comments:

cb said...

I'm very surprised by a lot of the details that you wrote about. I know you've been through every avenue but have you (or your wife) asked to see her medical records? It might highlight some of the conversations.. (and could make some people nervous.. ).

Calum said...

cb

No. We always meant to but, whether it's my depression or not, we have never done so.

We should though.

Dragonstar said...

I have no constructive comments, as I'm in a rather negative state right now. These are things I can't talk about in my rather superficial blog, as all my family read it.

Brief history. Youngest son became mentally ill. We had a great deal of help and support, although the first psychologist we saw was less than forthcoming. I can't remember now if it was psychologist 3 or 4 (no continuity, as it seems no-one wants to work permanently in Donegal) who gave us the diagnosis of schizophrenia.
After considerable time, son told us he's invented his illness. His psychiatric nurse (male) came and talked to him. From that time the nurse's attitude changed. Son was rediagnosed with psychotic depression (he was told no-one had ever said he had schizophrenia, but I was there at the time and the psychologist was answering my question.)
The nurse, in spite of this diagnosis, persists in treating the whole family as if we as parents are to blame for son's condition. I am considered to want to keep him "tied to my apron strings" because he is the youngest of the family.

That's enough of a rant from me. I started out to tell you that I know from experience the damage that can be done by just one health professional.

Aileni said...

I second D'star's comment. I had a blazing row with this individual yesterday. Over three weeks ago Stephen had, on his on account, worried by the way he was feeling, rang this 'nurse' asking for an urgent appt. with the psychiatrist. I was impressed with S for doing this. Yet the 'nurse' told S to 'talk to his mother'. A week later his mother left a message asking where the appt was. Nothing ...
This last Mon a call to the 'nurse' evinced instant and I believe, panicked response.
Yesterday I lost my temper with the person in question but to no avail - he got a thicker skin than I and I just myself ill.
None of these people understand the situation because they don't live with it. S' condition is worse than schizophrenia in that there is an enhanced susceptability to stress and self harm.
But we are overprotective and he needs stress because 'life is stressful' we were told.
Yet again moves are afoot to move him from home and would that it would work this time.
I have my doubts and fear yet again, a very sick boy will come back to us and it will all have been for nothing.
If you sense desperation - you are correct.

Calum said...

Aileni / Dragonstar

Bloody hell!!

Wherever we look, whoever we talk to, has their own negative experiences of hte NHS especially mental health services.

Thanks for sharing this. Yes, I feel your desperation and I feel for you because, although I can't know the detail of what you are going through, I can relate it to our prioblems and how I am affected. Sorry this sounds awfully long-winded and unclear.

Thinking of all of you and hoping you can get a semblance of "sense" from the system.

Again, thanks for sharing this obviously difficult knowledge with us.

Calum

Ginro said...

Feel very sorry for you with regard the lack of help. A lot of it can be down to individual GPs as you know anyway, and mine would never treat someone that way. I have seen first-hand how far she is prepared to go for her patients, and being an ex-Army doctor she can spot a shirker a mile off, so its distressing to see what you have had to put up with.

Ginro said...

P.S.

Don't want you to think I was implying you or Mrs Carr was a shirker by the way, lol. You aren't. I was just trying to point out that she could see what others without her experience failed to see, someone desperately ill.

Anonymous said...

Calum

Hi I just popped over from NHS Exposed.

I too have had similar experiences not with mental health but other services.

I agree totally with cb get your notes, in there I bet you will find your answer. I have a feeling I know what you will find.

It's totally disgusting.

I feel a rant on 'mental health services' or lack of them, coming on.

Louise D

CherryPie said...

Oh No! Your orignal post and also Dragonstar and Aileni's story fill me with dismay!

What an appalling way to treat people!

Deb Acle (aka Barely human now) said...

Calum - another incisive and clear post about mental health treatment, or lack of it.

I felt nauseated as I read through the details again. The failure of compassion and the negligence is palpable. No wonder Mrs C is so poorly. With proper treatment, she may well have been well on the road to recovery by now.

As we are beginning to learn, this is how many patients, with many different illnesses, are treated all over the UK. No matter how many times I read about other peoples' experiences, I still feel so shocked and horrified at the casual devastation the NHS wreaks in many lives (in the lives of doctors and nurse as well as patients, it has to be said).

Dragonstar, I am so sorry also to learn of your family's awful experiences at the hands of arrogant, know-it-all HCPs. And Aileni, that sounds like a dire situation, I am sad for your family too.

Louise - rant away!! Go for it! I think you'll find a ready audience....

And Calum, thank you so much for linking my posts. May I take a bit of your blogspace to say that today Debacle has suffered from some form of block. Friends have reported that they have not been able to visit.

This started with a long visit from someone in the NHS at about 10am and some access was restored after a visit from someone in the Ministry of Defence (!) at about 4pm. The difficulty seems to be sporadic my friends tell me. I'd be happy to send you all copies of the site logs which give full details of these visits if you email me.

Also, my site logger was disabled and my username and email address have been changed (and help! I don't know how to change them back!).

I'm not into being spooked by all this. And it all may be just coincidence. But if it's not coincidence then

a) wouldn't you say that someone, somewhere (or perhaps a lot of someones) are intent on hiding something and squashing criticism?

and
b) these someones' bosses, my MP and the Home Office as well as the Information Commissioner are going to get full reports. If there has been a deliberate covert attempt to close down my blog then this is in direct contravention of the Human Rights Act which is a criminal offence.

Calum thank you for allowing me to say that!

One could see it all as part of a piece though. We patients have far too much experience of how the NHS withholds and distorts information much to our detriment, especially if it means they don;t have to spend money on us.

We have too much experience of how this monolithic, unresponsive, non-compassionate, completely unaccountable bureaucracy ignores and denies us even common courtesies and respect as well as treatment.

Like you Calum, I have letters like the ones you have - where you have to read, and reread and go over it again and get friends to read it so that you understand what they say. (In fact, a few months back I emailed one NHS bureaucrat to ask if there actually was an NHS School for Obfuscating Correspondence, or was there a module in the NHS management course that taught them how to write these tortuous letters?)

Calum said...

ginro No prob. I didn't think for a second that you were calling us "shirkers"

Louse yes, I can imagine what migt be in the notes and causing a problem!

CherryP Thanks. Hearing Dragonstar's and Aileni's stories is hard. There are so many out there hidden away.

Deb Thanks again for the praise. I second your comments re others.

may I take a bit of your blogspace? NO!!! Oh, you just have!!! :-) Again no probs. Any time.

Deb Acle (aka Barely human now) said...

There are so many out there hidden away.

This is the key problem, isn't it? Most of the time we're all hidden away, confused, cowed, beaten down, hurt, humiliated, isolated...We are led to believe that it's just us. As patients we don't reach out effectively.

And the 'patient support groups'...? Jiminy. Abysmal. I don't want to get sued for defamation but what I could write is certainly defamatory. And they deserve it.

They seem to have sold out for the pittance in grant aid the gvt gives them. They don;t fight for the patient, they sort of hush you up with platitudes and coffee mornings and jumble sales and mediocre volunteers. I read tonight that the Patients Assn is holding a jolly for NHS managers even! Arrrgh.

Calum said...

Deb

Rather than a "jolly" the Patients' Association should be taking a brolly to the NHS managers and putting it ......

Alyn the mad dentist said...

Oh Calum, what an awful story. A story that does not give me hope as I am going through a similar experience with the Welsh NHS. They describe ME as a high risk suicide when I have at least 3 "diagnoses" from so called Mental health profesisonals that I am NOT, or in one case, ever have been, a suicde.
I HAVE seen my medical records and there can see proof/evidence of the cover up by al the GP's etc in West Glamorgan. Even my sister, who is a doctor, refuses to rock the boat.
MY blog is different but the same AND I worked for the nHS as a Dentist for 23 wasted years and this is all the thanks I get.
Peolpe tell me, and it does not help, that I am not alone. No help at all.....

CalumCarr said...

Alyn

"People tell me, and it does not help, that I am not alone. No help at all....."

I can understand your view. Knowing your not alone does nothing to help you in your situation.

I feel for you and hope that you can get yor car sorted out. In the meantime , "Hang in there" and remember others are thinking of you.

Pop by anytime and if you want a chat then feel free to contact me at my email address - bottom of green side bar. In fact, contact me if you want - for any reason.

Dragonstar said...

As Alyn says, knowing you are not alone does nothing to sort out your problem. What it does do is bring home that other people can at least understand some of the hell. At least we know it's not "all in out minds"

I was an NHS nurse at one time. Having lived here in Ireland for 18 years now, I no longer know what's going on in Britain. In general, we have had pretty good care here. Just one thick-skinned man with the ear of the bosses causing the real trouble.

Thank you all for your sympathy.

Aileni said...

I feel I should clarify something re our experience. We are in the Republic of Ireland and not under the sway of the NHS. Our complaint is not with the service we receive but with one individual. I think we are very lucky to be here.
There is a problem that concerns mental care here and that is lack of continuity - S rarely sees the same person twice. If there was a regular and unvarying consultant I don't think we would have this problem.
D'star and I used to work in the NHS - she as nurse and I as a radiographer. But this was in the days when matrons ruled the hospital and things ran properly.
Successive governments have wrecked the Service.
If the British government of whatever stripe were to eschew military adventurism and pay proper attention to the care of the population you might not be suffering as you do.
Rant over.

CalumCarr said...

Dragonstar / Aileni

I'm a fool!!!!

I knew you lived in Ireland but yet I mentioned the NHS in my earlier response to you. I have "NHS on the brain" - that's a widespread but new disorder brought on by NHS failure to treat appropriately.

I'm sorry for that error and sorry that you had to comment again to correct my mistake.

What remains unchanged is our feeling and support for you and your son.

Welshcakes Limoncello said...

Oh, Calum, how heartless certain sectors of the health service can be. What you have both been through is horrific and my heart goes out to you both. Keep fighting.

Nunyaa said...

You would think that with all this publicity the NHS would be budged into some positive action here, what the hell does it take for these people to sit and take notice ?

Ian_QT said...

You should definitely try and get copies of yours and Mrs Carr's medical records (Mrs Carr might have to ask for her own). You have a legal right to access them under tha Data Protection Act 1998, although they might try to fob you off.

If you have any problems with accessing your records, a person who could possibly help is Helen Wilkinson, of the Big Opt Out campaign.

Dragonstar said...

Calum, commenting here is never a chore, and knowing you can understand our frustrations is a big help. Thank you from all of us.

jmb said...

One of the things about sharing all these problems is that you find out how many others have similar stories. On one hand that doesn't help your situation but I am sure it does help you that people do understand what you are going through.

As always you have my thoughts and best wishes that something good may happen in the near future.

C.A said...
This comment has been removed by the author.
C.A said...

"shouldnt have relationships"? erm....shouldnt the entire medical profession already know about the "aactivities of daily living" as a core piece of knowledge framework!? jeez, 1st year of nursing school you learn about the importance of maintaining your ADL's. Pfft....
Unfortunately and sadly im not surprised....im in my twenties, i work in the royal edinburgh, and during the last decade have been a patient there numerous times, including the cullen center (with the foresaid 10x1hr sessions to cure a decade of eating disorders, great idea that one) - i have watched people of all ages denied proper effective treatment for eating disorders for ridiculously stupid reasons: NHS wont fund it because patient is too fat an anorexic, or "patient is too high risk" (well duh, high risk and eating disorders go hand in hand, thats like saying NO, this cancer patient cant come into our oncology ward because hes likely to die - sick or what?) a friend of mine died after being sent to 9 different hospitals in search of some effective treatment, to no avail.

the NHS seriously needs to shake up their act, instead of spending the main budget on physical care whilst ignoring psychiatry.

IMO, the NHS spend way too much money on damn Fortisip drinks and enriched soups than they do on therapy which could change a persons life for the better.

sorry i don't have anything constructive to say either apart from: if i were you i would ask for a copy of your wifes records, you might find some stuff you could legally work on, like find something incriminating, threaten to take Dr X to a tribunal and WoW loook, they funnily agree to fund your wife for some "proper specialist" care! (yep, they dont admit it, but bribery works on the nhs)

CalumCarr said...

c.a.

Thanks for your comment. You don't say if you still suffer or if you have recovered. I hope you have recovered but wish you the best in case you have not.

it's interesting that you have seen the Royal Edinburgh from both sides and that your views are similar to ours. In one way i wish you didn't confirm our views becasue hten we could see that we were "unlucky" but that otherswere OK. Sadly, but not surprisingly,this is not thecase.

Again, c.a. thanks for visiting and telling us what you know.