Saturday, 31 May 2008

Tesco and Tax

More articles have appeared which question Tesco's methods for reducing their tax burden in the UK. Given that Tesco has issued writs for libel recently, I make no comment about the accuracy of the claims made in these reports nor do I link to them but I do want to comment on remarks allegdly made by a Tesco spokesperson.

Firstly, the spokesperson said, "The truth is that Tesco pays a disproportionately high amount of tax in the UK - around £1bn a year including corporation tax, business rates and employer's NIC."

Tesco is, I assume, referring to their total UK tax bill. I am surprised that Tesco mentioned this because their total tax bill has no relevance to the allegations being made. I am interested to know what Tesco believes a proportionate amount of tax would be and why.

Also stated is, "[The information put to Teso] is also riddled with inaccuracies and designed to portray as unethical what is in fact entirely legitimate and commonplace funding of international companies by successful global businesses based in Britain."

I don't doubt that Tesco's actions comply with the law but Tesco suggests that legitimate actions shouldn't or can't be portayed as unethical. That those legitimate actions are commonplace among successful global businesses doesn't make them ethical.

The law and ethics are not inextricably linked.




Thursday, 29 May 2008

Escaped!!

Back home minus 1 small part but it was no escape.

I have nothing but praise for my treatment and for the staff of NHS Lothian with whom I had contact today.

Thank you.

Wednesday, 28 May 2008

Taking a Risk

Tomorrow (Thursday) I put myself in the hands of NHS Lothian for surgery!

Unfortunately a very small part of me (not THAT part, I hope) is to be removed - or so they tell me.

Perhaps there is a sinister motive.

Perhaps they'll get their own back on me for causing them trouble.

Perhaps they'll .......

Doesn't bear thinking about.

If I don't post again then either they've killed me or brainwashed me!


No organisation could act like that, could they?. I'll be OK, won't I?. Tomorrow night I'll be back blogging?

They won't even know who I am. Phew!!!! But what if they did know? What then ........






Tuesday, 27 May 2008

MH4A: Patients' Right to Know


Mrs Carr's right to know the NHS views of her, her symptoms, her diagnoses, her prognosis - whether it be firm or simply hinted at - is at the heart of our struggle (no links: simply read virtually any recent post).

Wherever we turn, whatever we do we are unable to get any answers.

Without answers we are left in the following position:

- Mrs Carr cannot get more assessment or treatment despite continuing to suffer: anorexia, bulimia, self-harm, suicidal thoughts, unable to function as a mother, unable to function in any manner approaching normality

- our children left motherless for over a year with no prospect of change

- I am left as a sole parent to our children with no prospect of change

- all of us left stressed by the family circumstances, the lack of support and the total block on any openness from the NHS.

- all of us left to suffer in different ways


Is it unreasonable to need to know what is wrong with Mrs Carr?

Is there not an unalienable right to know?

How can the NHS have the power to deny us information?

How can the NHS have the power to deny us the prospect of a normal life?

Is it not a scandal that innocent children are left to suffer because of NHS intransigence and refusal to engage with their parents?


Regardless of what the NHS think of Mrs Carr - and possibly me too - can there be any reason to leave us in this knowledge and treatment limbo?


Surely somewhere there is someone with the knowledge, strength and persistence to help us.


Afterthought

I'm sure readers must think that there is more to our story than I have revealed or that there must be something very "strange" about this family. I can assure you that I have been very open. If there is more to our story then we do not know it. If there is something very "strange" about our family we do not know it.




We are an ordinary family caught up in a nightmare which has no prospect of ending .... unless the NHS changes its approach.


Let me ask again, let me plead! Is there someone out there who CAN help us....... if not for me or Mrs Carr then for our children?



Sunday, 25 May 2008

NHS Lothian: Good News?

In March this year, NHS Lothian announced in a press release, "NHS Lothian proudly leads the way in tackling mental health stigma". "Dr Charles Winstanley, Chairman, NHS Lothian, said: “I am delighted that the Board has set tackling the stigma associated with mental health issues as a priority, both for our patients .... ".

The release continued, "NHS Lothian signed the national ‘see me’ anti-stigma Pledge in January.

The ‘see me’ campaign was launched in 2002 to eliminate the stigma and discrimination associated with mental ill-health, using high-profile advertising and local activities to raise awareness and change attitudes.

Suzie Vestri, acting Campaign Director for ‘see me’ commented: “One in four people in the NHS Lothian area – and 1 in 4 NHS Lothian employees – will experience a mental health problem at some time in their lives. There is no reason in this day and age why people experiencing such a common health problem should experience stigma and discrimination. NHS Lothian’s commitment to tackling stigma is warmly welcomed by ‘see me’ and we look forward to working closely with them to make stigma a thing of the past across Lothian
".

This should be great news but, somehow, I'm underwhelmed. Has NHS Lothian not discriminated against Mrs Carr?

Is it normal to stitch cuts with no anaesthetic? No!
Is it normal to refuse to answer an MSP's questions? No!
Is it normal to take 8 months to not answer an MSP's questions? No!
Is it normal to not tell a patient what is the diagnosis, treatment plan, prognosis? No!
Is it normal to treat a patient coldly, callously, unsympathetically? No!
Is it normal to tell a patient to have no emotional relationships - ever? No!
Is it normal to give a struggling patient difficult information with no support in place? No!
Is it normal to treat anyone in the way in which Mrs Carr has been "treated" for more than 1 year? No!

Has NHS Lothian discriminated against Mrs Carr? YES!

Will NHS Lothian accept that they have discriminated against Mrs Carr? Of course, they won't. They will continue to mix and match partial truths to provide a misleading picture of their actions and decisions.

NHS Lothian will continue to discriminate against Mrs Carr.

The one out which NHS Lothian may use is to claim that Mrs Carr is not mentally ill and, therefore, not covered by their anti-stigma / anti-discrimination stance. How could they do this? They could say that Mrs Carr suffers from a personality disorder and not a mental illness. This would be shameful and would continue to be stigmatising and discriminating.


Come on NHS Lothian. At this late stage you can still change your tack and do the right thing by Mrs Carr. To continue to ignore Mrs Carr will show your See-Me anti-stigma pledge to have been nothing but a disgraceful sham and you will deserve every ounce of opprobrium which comes your way.

Until NHS Lothian acts honourably, please continue to support our campaign.

Saturday, 24 May 2008

MH4A: Diagnosis and Label from Hell


A mental health post without Mrs Carr because this subject is massively important.

There is a group, predominantly women, who have this diagnosis; there are many more who have no diagnosis but are labelled. All suffer prejudice, discrimination and stigma not only in society but in the health service which should be a source of help.

Three letters is all it takes - BPD - and masses of negativity kick in. Have this as a diagnosis or as a label in one's notes and watch the world change!

BPD => borderline personality disorder

"Sufferers" can be excluded from treatment, shunted from 1 clinician to another, accused of attention-seeking, not worthy of help because they have brought this on themselves.
A well-reported effect of a diagnosis or label is, after self-harming, to be stitched without anaesthetic. Any complaint about the lack of treatment or a request for a second opinion which should be viewed as normal behaviour is seen as confirmation of the diagnosis (or label). Often a label is attached, rather than a diagnosis, so that all clinicians know what to expect and how to act. In Scotland, at least, if a diagnosis is given then treatment must also be given.

Given the prejudice, one could imagine diagnoses not being given but only labels attached. This way treatment can be denied.

Read here for The Last Psychiatrist's view of diagnosis and labelling.

One source said the following: "In the mid 1990s I was representing the National Community Advisory Group (NCAG) on mental health at a National Mental Health Strategy meeting. An eminent psychiatrist with a senior position nationally sidled up to me at tea brake (sic) and advised me to let go of my resolve to bring the neglect and maltreatment of people diagnosed with borderline personality disorder out into the open. He justified this by saying, literally, “let’s face it they’re just too fucked![Calum's emphasis]. I couldn’t believe it, especially since later that day we were talking about the language around ‘seriousness’ and it became increasingly obvious that this group of women did not fit into any past or anticipated framework of serious mental illness. To this day it totally mystifies me how the same group could be considered both ‘too f*****d and not serious!!"

Gillian Proctor wrote, "BPD is a highly stigmatised diagnosis, with significant negative consequences both inside and outside of mental health services".

Proctor continues, "Diagnosing behaviour as ‘abnormal’ and ‘inappropriate’ involves comparison to social norms and ideals; ways of behaving that the majority of people in a given society view as normal and acceptable. Given that self-injury is subject to so many negative associations and assumptions, it is likely to attract both the attention and the judgements of mental health professionals seeking to make a diagnosis. Stigma and judgement associated with people who selfinjure are similarly associated with people given a diagnosis of BPD. Both are often assumed to be manipulative, attention-seeking, treatment-resistant, hostile and bring about feelings of anger, dismay and powerlessness amongst staff."

The diagnosis or labeling can be even less fairly carried out than dscribed above.

The following is an outrageous method of gauging the likelihood of BPD."Do use any clues offered to you for the diagnosis. Rather vague clues may be the patient’s inability or refusal to follow sound medical advice; an endless stream of physical complaints for which no organic cause can be found, or any number of other ways the patient acts in an unexpected, uncooperative and self-defeating manner. The doctor’s subjective feelings about the patient can be an important way to help identify personality disorders. A "sinking feeling" or an experience of profound dread or dislike when the physician sees the patient’s name on the daily patient schedule can alert you to the possibility of borderline personality disorder. These patients may be intensely hostile or angry in the first session and may provoke an equally intense emotional response in the physician. If you have a very negative reaction to a patient - i.e., a feeling of anger or hate for no obvious reason: "think borderline".

Here we have the feelings of the clinician actually driving the possible diagnosis. Does this mean that if I have appointments which I dread that those I am meeting might be BPD. This is thinking from the dark ages.



Any health service which stigmatises people so is a grotesque caricature of a caring health service.

Any clinician who is so prejudiced against BPD has no part in my NHS.

BPD has been called facetiously as, "Bullshit Psychiatric Diagnosis". This would be funny if BPD weren't such a powerfully negative name.

I'll have to stop here. It's past 2am; I'm falling asleep. I'm disappointed because I've ben trying to write this post for a few days now and I've always fallen asleep at the pc. I know I haven't done this subject justice. I know the post lacks coherence and structure but this is the best I can do at the moment. I'll try and improve this later.

Meanwhile, please remember BPD and look upon those with the diagnosis and / or label from hell as worthy of the identical respect afforded to everyone else.

Thanks for taking the time to read this (rather?) incoherent post.

Thursday, 22 May 2008

MH4A: How the NHS Avoids Answering Questions Part 1

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 rasonable way but actuaklly in a very obstructive manner.

Media Involvement

Today we were interviewed by a local journalist or rather Mrs Carr was interviewed and I interjected occasionally. He asked very detailed questions and now he has to organise his thoughts, find out what others have to say and then we'll become involved again and OK or not the article and sensitive details.

Fortunately he wanted only Mrs Carr's photo and so my physog will not be staring out from a newspaper. Can you imagine the negative effect on sales? No, of course you can't because you have no idea what I look like. Long may that continue.

As yet we don't know when he is planning publication. Guess it'll be towards end of next week. I'll update later.

Wednesday, 21 May 2008

PC Problems


Struggling with pc.

Took ages to get this post out.

No posts, no visits until resolved.

Sorry

Sunday, 18 May 2008

Please, No More Like Today


I'm meant to be the rock and not a bloody explosive.

I let everyone down today.

Sorry!

Saturday, 17 May 2008

MH4A: Little Changes

Or why we need to support Mrs Carr.

I'm sure some, or most, of you are bored with my continued listing of the problems we're having with Mrs Carr's (lack of) treatment and this I need to ovecome if my campaign - Mental Health 4 All - is to succeed. Well, I'm sorry there's more.

I came across old notes from early June 2007 - almost 1 year ago - and they show how even then we were concerned about Mrs Carr's difficulties not being taken seriously.

Eleven and a half months later and we are still here! What more reason could there be for supporting Mrs Carr and for showing the blue badge?

Extract 1

The original and full version of the extract below was handed to a medic in early June 2007:

" CALUM’S NOTES FOR MRS C’S APPOINTMENT EARLY JUNE 2007

Not sustainable even in short-term. Too much damage being done to Mrs C and children.

We are missing / not understanding something.

If the next patient presented for the first time with same symptoms as Mrs C there is not 1 chance in 1000 that this patient would leave with only a self-help book and a recommendation not to seek counselling. Much more would be done. Therefore, there is something in Mrs C's history or in assessments of health professionals which leads to decision not to offer Mrs C anything but self-help book.
We need to understand what is behind decisions and why.

Imagine patient arrived with symptoms below which are part only of Mrs C’s symptoms:

Eating behaviours much worse: [details removed]

Mental: [details removed]

No health professional would usher this patient to the door with a self-help book and saying that no-one other than the patient can help her/himself. But this is what happened to Mrs C.

It is as though the professionals do NOT believe Mrs C actually has the symptoms. I can think of no other explanation for the decisions made. We need to understand what is happening here.
"

[Note: Bold text was bold in the original]


Extract 2 Calum said this to the same medic one week later.

"Calum said: “I believe that Mrs C is much more seriously ill than her treatment / lack of treatment would suggest.”

On the surface there was a massive change / disruption to her life:
- Calum had to do almost all parenting
- Calum had to do almost all house-related work
-
Mrs C had to give up her OU studies although she had sailed through previous years
- Mrs C had to give up her social life.


But underneath the changes were another dimension.

Calum mentioned that Mrs C had let him read parts of her notebook / diary and it showed a living hell. “I was almost in tears reading it.” Life was just existing from second to second until it was time for bed again. Someone like this needs help now - not a self-help book.
"


Almost a year!

So little has changed!

There is one important point I have never made explicitly before: our children have not had a mother for more than a year. Mrs C has been around much of the time but not as a functioning mother. This is not through choice: she wants to be a mother; she is unable to be a mother; she is too ill to be a mother.

Our children need Mrs C to be a mother again. She was 18 months ago and can be again if only ........


If you haven't done so already please, please support our campaign.

Mrs Carr needs you.

Thank you.

Calum


Thursday, 15 May 2008

MH4A: Attitudes to Illness

It has long been a contention of mine that sufferers of mental illness are viewed much more negatively than are sufferers of physical illnesses. It as though those suffering physical ill-health are the innocent victims worthy of sympathy, empathy, understanding and treatment whereas many mental ill-health sufferers are seen, somehow, as the architects of their own illness and with the keys of recovery firmly within their heads.

Last week I read an interesting article in The Guardian (G2 magazine) which showed that the boundaries were blurred. Some physical illness sufferers, for example, ME are, or were seen, as being responsible in some way for their symptoms. The author, Keith Kahn-Harris, found that he was considered differently from people ill through other causes.


Kahn-Harris says, " ..... many people assume ME is an illness to be combated like any other. Long tagged with the disparaging "yuppie flu" label, there is enormous ignorance of what it is and what patients go through. Although an estimated 240,000 people in the UK suffer from ME, its effects are chronic and invisible. Symptoms include extreme fatigue, muscle pain, sleep difficulties and memory problems. About 25% of sufferers are housebound or bed-bound. ME is often accompanied by isolation and prejudice. The prognosis for ME sufferers is varied; some recover fully, but many do not. Even in its milder forms, ME can devastate lives and destroy careers.

For many years, psychiatrists dominated the research and treatment of ME. The treatment of first choice remains various forms of cognitive behavioural therapy (CBT) which, applied crudely, can end up suggesting to patients that their illness is "all in the mind". The ME community is full of stories of patients being forced into exercise programmes that make their health worse, of benefits and insurance claimants accused of lying, of parents of children with ME accused of Munchausen Syndrome by Proxy. Sophie Mirza, who became the first person to be classified as having died of ME in the UK in 2005, was even forcibly sectioned
" !!!!

Although the WHO now lists ME as a neurological condition, Kahn-Harris asserts, "Crude applications of the psychiatric model of ME may have caused a lot of damage, but they are in line with common perceptions of ill-health. ME is still often treated as a battle to be won. To be cautious, to listen to the needs of one's own body, is to "give in"."

"The message I get from the media, friends and colleagues is that one should treat illness as alien, as an invader to be evicted as soon as possible. But to have any kind of quality of life with ME, you have to accept the unwell part of yourself. This consideration of one's own needs might seem like selfishness, but in reality it is necessary to develop a proper balance between self and other and to prioritise what is really important in life."

Our own exmples (Mrs Carr's and mine) show that within mental ill-health the boundaries are also blurred. I have written often about the appalling ways in which Mrs Carr was treated as though she was responsible in some way for her condition but, having read the Kahn-Harris article, I saw that my depression, and therefore I, was viewed much more positively than Mrs Carr. When I described my symptoms and suggested that I might be depressed, I was believed!! There was no questioning of my symptoms: there was acceptance. I was seen as an innocent victim! Because I had taken on virtually all the responsibilities for family and house in addition to being a carer to Mrs Carr it was unsurprising that I should feel and be depressed. I was a victim of circumstance. The cause of my problems was clear and anyone in in a similar position would struggle.

Christ!!! Sorry!!!

Whatever problems I had were tiny compared to those suffered by Mrs Carr. I was living with mine and I was seeing and living with the consequences of Mrs Carr's but yet I was getting sympathy; I was being referred to a CPN. Medical staff would not accept that I suffered much less than Mrs Carr. I was innocent and worthy, Mrs Carr was not!!

I've heard and read that what we experienced is not uncommon ...... but it should be .... and must become so.

I'm using my campaign - Mental Health 4 All - to help Mrs Carr get the care she needs but I hope that the publicity we get is such that other issues can be raised too.
I'm not denigrating any of the current mental health organisations nor trying to usurp their roles - not at all, that would be utter folly - but in the unlikely event of MH4A getting a burst of publicity then I need to exploit that for the benefit of Mrs Carr and others.



With your support we can help Mrs Carr.

With a big dose of luck - and hard work - we can help others too.

Pleae continue to support Mental Mealth 4 All but much more importantly please continue to support Mrs Carr.

Thank you


Calum



MH4A: I Will Post Again

I'm aware that I haven't posted on substantive issues for a few days nor have I done enough visiting - sorry.

I've had a post in my head for a few days but not had time to write: it concerns the differing attitudes to physical and mental ill-health. Hopefully, late tonight!!

Also I have registered a domain name just in case this campaign really takes off. Doubt it but I'll be ready. May as well aim high.

I can't remember if I've mentioned this previously but we'll probably go ahead with a newspaper article. This won't be the end of the campaign but rather just the beginning. Therefore, please continue to support - and expand the support for - this campaign.

I WILL post properly soon and thanks for all the incredible support you've given us so far.

Regards


Calum

Wednesday, 14 May 2008

HOW TO ADD BUTTON TO SIDEBAR

Through lack of knowledge I've made it difficult to add the button to a sidebar but Phil A has a solution ...... BUT my lack of knowledge is so great that when I type here what you need to use the bloody button appears here rather than the text.

If you want the button , email me and I'll send the details.

Sorry about the hassle.

Tuesday, 13 May 2008

Badge Is Now Available

This is the new badge which is now in my sidebar.

Please display it if you wish to support our campaign.

I thought it was more aspirational than the "FIGHT 4" version whilst retaining the action of support.

I hope you like it but, moer importantly, display it.

Thanks

Badge Help Needed


UPDATE: BADGE SORTED AND WILL BE AVAILABLE SOON


I have the badge I want but on I've had massive problems trying to crop this, and only this, version of the picture. I'd like all white cropped out but I can't. If your background isn't white you'll see what needs to be done.

Help!

When cropped I'll put in my sidebar with a link so that others can use.

Thanks

Let's Fight: Brief Update

Firstly let me apologise. I haven't been around much today and so I haven't got round my blogrolls at all. The last week or so I've been trying to go round 2 x per day at least.

BADGE Thanks to all who have come up with and developed ideas and to those who are using a badge. Obviously bloggers can use any or no badge but I hope you will use the badge I'm working on (I may need technical help but I'll post if I do) The name I want to use is MENTAL HEALTH 4 ALL. Hopefully later today - Tuesday - I'll have the badge up.

NEWSPAPERS The health correspondebt of a Scottish 'paper has emailed me expressing an interest in our story including the political dimension. I'll make contact Tuesday. Please don't take this as reason to stop the campaign. I suspect there's a long way to go yet.

One potential downside - small in comparison with the potential benefits - is that the 'paper will probably need to use our actual names and so I will be outed: this blog will never be anonymous again. Everyone will know my name is .......... Carr Calum! Seriously though it will be the end of my anonymity as a blogger.

ONE-SIDED? My blog was mentioned in a forum which seemed to be given over to the slagging of doctors and a denigrator of doctors (sorry no link) but one of the doctors said of my blog, "I am sorry to hear about the patient but the report is a bit one sided - I'm sure you'll agree." Had I time I was going to post about this because this quote made me think about whether I was one-sided (yes) and if I was justified in being one-sided (yes). There post done in one sentence!

OTHER NHS STORY In a few weeks or so I'm having an operation to remove a small part of me. No, not THAT small! From my elbow! It's an in-and-out in a day operation but I'll be watching very carefully to make sure they remove just this one small bit. Imagine if they knew who I was and that I was slagging the NHS. They might remove an arm and/or a leg. I wish I hadn't thought this: I'll panic now in the operation.

I'm sure there won't be a problem. I've been impressed. Today I was finished 20 min after my appointment time and 3 weeks ago my GP phoned the hospital and 6 hours later I was walking out of the hospital having seen the consultant.

See I know the NHS isn't all bad.


Sunday, 11 May 2008

Let's Fight: Blog Visibility

Thank you so much for your support which has given a huge boost to my stats since I started my campaign on 2nd May (right portion of the chart) but more importantly a massively increased chance of success.

Note: The stats show visitors in yellow and page views in orange from 11 April to 10 May. I've removed the scale to save my embarrassment at the pre-campaign figures.
The chart shows ALL visitors and definitely not unique or qbsolutely unique visitors.


Please keep up the good work. This your campaign now.

Let's Fight: Political Action Needed

In February this year, I posted after Nick Clegg made a major speech on mental health issues. Today I post short extracts. For once I am not criticising anyone!!


Clegg said, "Often the most vulnerable people are waiting scandalously long for access to treatment when all the evidence shows that early intervention is vital. .......... This is a heartless, brutal way to treat some of the most vulnerable people in our society.

Why is it that our television screens are full this week, rightly, with the suffering of battery fed chickens but silent on the scandalous way we treat the mentally ill in our midst?

Mental health resources have been neglected and the services have suffered.
"

Clegg was referring to the situation in England and Wales but we in Scotland suffer similarly. Therefore, I call on the leaders of the four major political parties in Scotland to act. In February I wrote:

"Nicol Stephen: Follow the lead of your UK party's leader and promote similar aims and solutions.

Alex Salmond: Forget party politics! Stand up as First Minister and support Nick Clegg's diagnosis and aims - even if not his solutions - and promote similar improvements in mental provision in Scotland.

Wendy Alexander: Forget your worries over financing. Forget party politics too! Scotland needs similar improvements.

Annabel Goldie: You too can do your bit. Demand major improvements. Nick Clegg has given an outline of the problems and possible solutions.


You all know what you have to do. Stand up and improve the mental health provision in Scotland in as significant a way as Nick Clegg is proposing in England and Wales. Remember these words:

"Mental health service users are perhaps the people who most need an approachable, effective and enabling NHS. We will know that we have succeeded when it opens doors to a brighter future for them.
"


You need to act NOW!

Saturday, 10 May 2008

Let's Fight: More Damning Info

[UPDATE: 11.30: I have made a few very minor changes to this post none of which change the meaning. Apologies for letting these slip through.]

Once more I need to thank so many of you for continuing to support my campaign to get Mrs Carr the care she needs. I'm trying to reply to all comments made wherever they appear. If I have missed some then please accept my apologies and thanks now.

I'm finding it difficult to get my head around the guest blog I'm writing. On my blog if I miss out a few points I can always add them to my next post but I feel I have been given this one chance to get my guest blog right: that's quite a different pressure. Probably I'll delay and delay and then write the post in an hour and it'll be OK. Anyway enough of these thoughts: I need to write this post.

I'm going to list FACTS known to the NHS and on which they have failed to act.
Today I concentrate only on Mrs Carr's eating disorder although her problems go way beyond this.

1. Mrs Carr met, and still meets, all the criteria for a diagnosis of anorexia nervosa but she has not been given this diagnosis. However, Mrs Carr met, and meets, all the criteria for a diagnosis of bulimia and she was given this diagnosis. (In fact, the initial assessment mentioned that Mrs Carr had an Eating Disorder. Only later in the NHS' first reply to our MSP was bulimia nervosa mentioned.) The short period of "treatment" given was for bulimia only and was unsuccessful.

2. Where a patient meets the criteria for both anorexia and bulimia the diagnosis made must be anorexia nervosa bulimic sub-type. This diagnosis was NOT made.

3. Mrs Carr has suffered the side-effects of anorexia: oedema, biochemical changes to the liver and changes to her bone structure. All these side-effects were identified by clinicians within NHS Lothian.

4. Mrs Carr has a long-standing cardiac problem. Her consultant cardiologist noted changes to her heart structure which occurred whilst she was severely anorexic. The cardiologist wrote to the eating disorder clinic but still there was no recognition of Mrs Carr's anorexia.

5. Both we and Mrs Carr's MSP have raised the issue of the non-anorexia diagnosis with NHS Lothian. NHS Lothian does not accept that a diagnosis of anorexia nervosa is appropriate despite clear guidelines (DSM IV) which state otherwise.


Despite these points, Mrs Carr's anorexia has never been acknowledged, diagnosed or treated. She continues to be severely anorexic and bulimic and her treatment for bulimia has ended. Without a diagnosis of anorexia, Mrs Carr cannot receive treatment for this disorder. You need to be aware that the treatments for anorexia and bulimia are different.

Tomorrow, there will be more!

If you are shocked or appalled by the NHS treatment of Mrs Carr please do all that you can to support my campaign (or rather it is now OUR campaign). You can link to this post or simply spread the word in any way. More details of the campaign are available from the sidebar.


Friday, 9 May 2008

Let's Fight: Campaign Update

One week into the campaign and it continues to grow. Thanks to everyone - those who have linked and those who have simply visited and read.


James (of Nourishing Obscurity) commented elsewhere "I’m really delighted for Calum that this is now being picked up on. Now if some of the big bloggers would get behind this as well …". There could be good news on this front because a widely read and well-respected blogger has invited me to write a guest post. Not only will this bring my campaign to a larger audience this blogger has also offered to ask one of THE big bloggers if he would link to my post. I'll try and write this post in the next couple of days. Watch out for it!

This blog had 3 visits from the BBC yesterday one of which read 9 pages. This may be nothing but it does indicate that our story is reaching out.

Harry Hook in comments raised a couple of good points.

Firstly, he said, "Why do 'people' continue to be shocked by this type of story. These are not isolated cases, I could mention a room full... and dare I say, ones that are much worse."

I'm sure Mrs Carr is far from alone in struggling with the NHS and I am equally sure that there are many much worse cases. Unfortunately I know only of Mrs Carr's case and I am determined that she will not be denied the care she needs. I think we should not be surprised "by this type of story," but we must continue to be very angry. Without anger I would not be campaigning. I started this campaign to get help for Mrs Carr: no one would believe me if I said otherwise but I know that, if I am successful, then others will benefit too. Also I think that, regardless of the outcome of this campaign, I shall continue to work for better mental health either through advocacy or by campaigning on a much wider front. There is a huge problem and if I can help in some small way then I shall.

Secondly Harry Hook (same link) said, "A poor diagnosis can hinder you for the rest of your life and surviving can mean fighting that diagnosis rather than finding positive treatment.". Imagine this! Imagine having to fight an incorrect diagnosis before one can get treatment! There is a massive need for more campaigning on mental health issues. Thanks Harry for raising these points.

Finally, I'm not sure yet but I think that, whilst in the midst of this campaign, I shall restrict this blog to mental health issues only. To mix the campaign in around politics, humour etc might seem strange and might be counter-productive. I'll think about this.


Thank you for you support. You can't imagine how helpful this is to us.

Wednesday, 7 May 2008

Let's Fight: Response to Ellee


Ellee asked in a reply to an earlier post if we had taken up the issue with our MP. My reply to her was so lengthy that I decided to make it into a complete post.

We have involved our MSP since health is devolved to the Scottish Parliament.

An abbreviated timeline is shown below but fuller details can be seen here.


"On 5th July 2007 our MSP wrote a detailed letter to the Chief Executive of NHS Lothian.

On 19th August 2007 NHS Lothian replied but did not address any of the questions / major points raised but rather questioned some of the background information included by our MSP.

On 21st September 2007, our MSP wrote again.

On 21st November 2007, our MSP wrote once more chasing a reply.

During January 2008 our MSP's office phoned repeatedly but in their words, "We were given the run around."

On the 25th January 2008, NHS Lothian told the MSP's office that they would have a letter issued by early the next week.
"

On 25th March a reply - again unsatisfactory - was received.


We waited more than 6 MONTHS for a reply to our MSP's second letter.

We waited more than 8 MONTHS for answers to the issues raised in the MSP's first letter and have not yet received them.

There is no doubt in my mind that NHS Lothian has deliberately delayed its response and deliberately refused to answer the key questions but this begs the question, "Why on earth should they behave in this way?"

The only explanation which makes sense to me is that NHS Lothian believes that many (or all) of Mrs Carr's symptoms are escalating behaviours to get further treatment. A common method of dealing with such patients is to ignore them on the basis that to give credence to the symptoms only encourages the person to make more demands. This would explain why no-one has offered us an explanation either for her symptoms or her lack of treatment.

There is more evidence for the view that Mrs Carr's symptoms are not taken seriously. I found, on the web, that the NHS uses a particular self-reporting questionnaire for assessing depression levels in patients (PHQ-9). Twice Mrs Carr completed this form at home: once I gave a completed copy to Mrs Carr's GP and once to a hospital psychiatrist after a suicide attempt. Mrs Carr scored 23 and 25 (out of 27) respectively which is indicative of severe depression. On neither occasion was any interest shown in the results nor was any action taken. Interestingly, a few months later when I visited the same GP because I felt really down she gave me the PHQ-9 form to complete. Therefore, the form was worthy for me to complete but irrelevant for Mrs Carr's treatment despite the very high scores.

If the NHS believes Mrs Carr is escalating her behaviours, then she is still very ill and deserves to know her diagnosis and prognosis and to have treatment.

If the NHS is wrong, as I believe them to be, then Mrs Carr desperately needs the correct diagnosis and treatment but ....... since they won't talk to us we cannot accept nor reject their views and cannot get get a referral to an appropriate assessment and treatment centre.

I have spoken to 5 national treatment centres and all have said that Mrs Carr is the type of patient they should see but we can't access them. On the basis of two self-reporting questionnaires one centre said that Mrs Carr scored highly for the relevant disorders and should have a full assessment. This has been denied to Mrs Carr by NHS Lothian.

I should make clear that I am not taking the line that Mrs Carr has Disorder Z and that I won't rest until she is diagnosed with it. Her history and symptoms fit with Disorder Z; national experts believe she should be assessed for this disorder but NHS Lothian remains silent on their diagnosis and reasons. Until NHS Lothian is open and honest with us I will not rest. This is all I ever wanted; openness, honesty, trust in clinicians so that Mrs Carr has an opportunity to improve. What we have encountered is coldness, closedness, callousness, obfuscation, delay and a refusal to engage in any serious discussion of Mrs Carr's problems.

The minimum NHS Lothian should do is tell us the truth. Then we can either accept their version or fight it but by refusing to engage with us (or our MSP) they leave us struggling in a vacuum. How can we accept a diagnosis if no-one tells us what is the diagnosis? How do we challenge a diagnosis if no-one tells us what is the diagnosis. How do we fight for assessment if no-one tells us why they won't make a referral?

Even worse by not engaging with us Mrs Carr has been left ill and, apparently, unwanted, for an additional year with no likelihood of effective assessment or treatment and the rest of the family has been left with the stress of caring for Mrs Carr and of seeing her continue to suffer unnecessarily.

Also the trust which Mrs Carr should have in the NHS has been destroyed. How can she be expected to trust clinicians in the future when she has been treated so badly?

Let me say again, all I ever wanted was openness, honesty, truth and trust in clinicians so that Mrs Carr has an opportunity to improve but what we have encountered is coldness, closedness, callousness, obfuscation, delay and a refusal to engage in any serious discussion of Mrs Carr's problems.

The system has closed ranks against us.

The system is killing Mrs Carr.

Fight: I have no option.

Please help me.

Please help Mrs Carr.

Together we have a chance to force NHS Lothian to speak to us honestly and to view Mrs Carr as being ill and worthy of urgent treatment.


Let's Fight: Background Info 1

As my battle with the NHS continues I think the issues will become clearer if I give some background information. Most nights I will either repost or highlight some previously unreported information.

Tonight I repost from September 2007.

"
Today I write in shock and with dread.

I have written previously about the eating disorder within our family but I have not given details whilst we are fighting for treatment. I must change this policy now. We fight on, with the help of an excellent local politician and a hugely supportive counsellor, but as door after door is slammed I must broaden our fight and so I need to give a few details.

We have, or have had, anorexia, bulimia, depression, self-harm, an overnight disappearance, an "accidental" overdose and an unsuccessful suicide attempt but yet the NHS offers only anti-depressants and a self-help book - not received yet. In fact the anti-depressants were withdrawn after the suicide attempt and we had to fight to get them reinstated.

Health professionals will not explain why there is no immediate crisis help although we have been demanding this for months.

The only feasible explanations are that they do not believe the symptoms are real but are simply escalating attempts to get attention; that their diagnosis is that there is no long-term cure and informing the patient of this would be harmful; or that treatment would be be so hugely onerous on a therapist that they must deny treatment.

If there is to be no treatment then at least tell us the truth. Despite our best attempts the truth remains hidden. The professionals will not address the issues. We are fighting without knowing the actual diagnoses.

A seriously ill patient has been cast out by the NHS as unworthy of treatment!

We can't even get a genuinely independent private opinion without a referral from our GP. The very professionals who have shunned the patient have the power to deny (or, at least, colour) a second opinion.

I have been pushed to write today because a well-respected mental health voluntary organisation has refused help because the support required is quite intensive and beyond their capabilities.


Too difficult for the voluntary sector and unwanted by the NHS!

How can this be?

How can a seriously ill patient miss out on treatment? Something is amiss.


We need the truth now.

We need treatment now and have needed this for months.

I say again: if there is to be no NHS treatment they, at least, owe us the truth.


But as I write this with anger, fear and tears I see no way through. The NHS, for reasons unkown, has left us alone with neither diagnoses nor explanations. I am struggling and I am the healthy one! What it must be like to be suffering I can't imagine but I can only admire the strength to get through each minute.

I never believed that the NHS - my national health service - could act with such callous disregard for one's health; for one's life.

I feel anger and dread I have never felt before and I trust and pray that, from somewhere, help appears. The future is unclear but somewhere, somehow I must find a way through.

I will not let the NHS win.

Imagine talking about winning. I'm talking about the future of our family, about one's life. The NHS should be falling over themselves to help but instead they're running away from us scorching the earth as they go.


This is life or death.

For God's sake, NHS. Choose life and help!!
"

All the problems highlighted in the original post last September still apply today. If you are appalled by the (lack of) treatement afforded Mrs Carr please link to the main campaigning post.


I appreciate your support. Please stick with us: this campaign will take time to grow and and even longer to succeed.

Mrs Carr needs this to succeed as do those others who are being failed
but have no voice. Please speak for all of them!

Tuesday, 6 May 2008

Mrs Carr: No Wonder ...... When


It is no wonder that Mrs Carr is struggling to
get appropriate assessment and treatment or even to have the NHS hear her true suffering when, despite being an insider, an NHS psychologist struggles too.

I know of an NHS psychologist - quite senior - who was anorexic and had to fight and fight for her treatment rights. Even then she wasn't allowed the satisfaction of "winning": the NHS turned things around so that it appeared that they (the NHS) had suggested the particular treatment rather than it being the psychologist's desired path.

Her view was that there is never an easy way to win a battle with the NHS: they simply gang up on people and refuse to listen to reason. The psychologist did find individuals who were supportive but all commented upon their powerlessness against the massive system.

The NHS was never meant to be like this. The NHS belongs to all of us!


Stand with this psychologist.

Stand with Mrs Carr.

Stand with all those about whom we don't know but who have hit, will hit, the same problems.

Fight with us.

Help us to reclaim our NHS.


Please read and link to the first post of this
web campaign


Sunday, 4 May 2008

Let's Fight: Update and Link List

Thanks to all my new visitors here, because of my campaign to ensure the appalling (lack of) treatment given to Mrs Carr is rectified.

The more visits and the more links then the greater the chance that Mrs Carr's case will make the MSM at which point the Health Board will come under pressure to act as it should.

I know this will take time. Therefore, please continue to pass a link to this blog to your readers.


I'll use this post to list blogs linking here in support of this campaign.

Huge thanks to the following blogs who have linked:

The Daily Ramble (Lord Nazh)
Martin Meenagh Blog
Critical Faculty Dojo
Mutleythedogsdayout
prisonlawinsideout
Sally In Norfolk
The Rollercoaster of Life
Cherie's Place
Andrew Allison - A Conservative View
NHS Death Row
Postcode Lottery
Whatever
Shades of Grey
Nobody Important
Grendel
Cymenes's Shore
Kate
The Poor Mouth
Anne in Oxfordshire
A Blogspate
Nunyaa
Scottish Roundup
Finding Life Hard
Nourishing Obscurity (plus sidebar)
Bearwatch (plus sidebar)
SicilyScene
BroadSheetRag

If you have linked but are not listed here please let me know and I'll correct the position.

Friday, 2 May 2008

Let's Fight For Mrs Carr

Those who read yesterday's post NHS MEGA-RANT TO FOLLOW may wonder what on earth happened to cause me to scream. Before I answer may I ask you to read this post Have We Reached The End With NHS? which is a direct precursor to what happened yesterday.

Today's post is in two parts: the first describes Mrs Carr's appalling treatment yesterday and the second is a plea for help in spreading this story across the web.


PART ONE

Yesterday, Mrs Carr returned to see the same consultant psychotherapist whom she saw last week: she wasn't there for treatment but for a scond opinion. Last week I wrote: "she came away feeling as though she had been abused - psychologically. She came away having been abused.". 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 ...........

The spectre of suicide must be close. Many of us would find a life without relationships to be a life not worth living. I am fearful.

In a caring and compassionate NHS this would not have happened. Mrs Carr would have been assessed more than 1 year ago. Instead her NHS has consistently ignored her and now, finally, abused her psychologically to a degree which I would never have believed possible.

She needs help now. Proper, compassionate care with understanding of her problems.


PART TWO

For about a year I have blogged about the major difficulties we encountered in trying to have Mrs Carr assessed, diagnosed and treated for her problems and I am very grateful for the support of fellow bloggers. I have spoken on many occasions to her GP and various consultants; I have written to her GP and consultants; our MSP wrote to NHS Lothian all without a glimmer of success.

I have spoken to experts outwith the NHS and one from within: all have said that Mrs Carr is the type of patient they shold be seeing but yet access is denied. Yesterday, I spoke at length to a retired NHS consultant psychiatrist and to her there was no doubt that, from the symptoms I described, Mrs Carr was suffering from an Identity Disorder. Even little snippets of information tied in with the typical behaviour of such a sufferer but yet the NHS is blind and closed and, apparently, determined to deny Mrs Carr assessment, diagnosis and treatment.

Mrs Carr cannot be alone in being treated in this most shameful way and in having her life put at increased risk through the most insensitive behaviour of a consultant.

Mrs Carr needs help NOW!

Others need help now!!

You can help.

Let's spread this story across the web until it so big that it cannot be ignored. If you can please post about Mrs Carr's plight; please link to my posts and ask your readers to do likewise. Even if you are not in the UK please help.

We can help Mrs Carr. We can help others get a much better mental health treatment through our NHS.


Publicity is the key.

We can make changes. We MUST make changes.


Thank you

Thursday, 1 May 2008

NHS MEGA-RANT TO FOLLOW


I MAKE NO APOLOGY FOR SHOUTING BECAUSE I'M NOT.

I'M SCREAMING!!!!!


OF ALL MY MENTAL HEALTH POSTS NONE COMES CLOSE TO DESCRIBING THE ILL-TREATMENT MRS CARR RECEIVED TODAY. SEE THIS POST FOR WHAT HAPPENED LAST WEEK.

MY NEXT POST WILL DESCRIBE WHAT HAPPENED TODAY.