Sunday, 29 June 2008

MENTAL HEALTH 4 ALL: SHAME


Today I use the banner not only for Mrs Carr but for all those who suffer now and those who will suffer.

The Observer has two articles on mental health:

The Mental Health Units That Shame The NHS" which describes the terrible state of in-patient mental health care. "The incoming president of the Royal College of Psychiatrists has admitted .... that he would not use them himself - nor allow a member of his family to do so."

In a second article - an interview with the incoming president " - he ... launched a powerful attack on the state of Britain's acute psychiatric care system, saying many inpatient units are unsafe, overcrowded and uninhabitable, adding: 'I would not use them, and neither would I let any of my relatives do so."


The Observer also carries a very powerful editorial about mental health - Mental Health Must Be Taken From The Shadows". Although I do not agree with all the points raised I make no apology for including the entire editorial.

"In the 19th century England, mental health issues were governed by what was known as 'lunacy law'. Although Victorian parliamentary acts changed the status of those suffering from mental illness from prisoners to patients, they were still kept in brutal asylums.

Today, modern medicine has a sophisticated understanding of the broad spectrum of disorders that constitute mental illness, but politics seem scarcely to have moved on. Mental health treatment is in crisis. Acute psychiatric wards are 'not safe' and are 'uninhabitable', according to Dinesh Bhugra, the new president of the Royal College of Psychiatrists, whose damning verdict is reported in today's Observer. Patients are neglected and often put at risk of violence and sexual assault. The problem, as it has been for decades, is a woeful lack of funding compounded by ministerial failure to address the needs of mental health patients.

Nine years ago, the government cited transforming treatment of mental illness along with heart disease and cancer as one of its top three priorities for the NHS. Since then, the only substantial change has been the Mental Health Act 2007, which strengthened the regime under which people can be forced to accept medication and be 'sectioned' - detained on wards against their will. Those wards were described earlier this year by the Mental Health Commission as having become 'tougher and scarier' places in the last decade. In other words, the most vulnerable and disorientated people are sent to a place likely to exacerbate depression and psychosis.

The 2007 act was motivated as much by the desire to assuage popular fear of the mythological marauding 'violent schizophrenic' as by the hope of getting better clinical outcomes. Without sufficient resources, what we have is a return to punitive confinement.

But only a relatively small proportion of those suffering from mental illness require in-patient treatment. One often-cited estimate says that one in four people will be affected at some point in their lives, a figure that is often met with scepticism because of the culture of shame around mental illness. The number sounds less inflated when the full range of conditions is taken into account: teenagers who starve themselves in pursuit of an unattainable body image; people out of work who self-medicate for chronic low self-esteem with drink and drugs; teenage mothers who run a higher than average risk of postnatal depression; work-related stress that leads to crippling panic attacks; young children self-harming. Problems on such a scale in any other area of healthcare would propel it to the forefront of political debate, as has happened, for example, with obesity.

The government would be pilloried if it simply gave up on improving cancer survival rates, but it has managed discreetly to drop its fervour for revolutionising mental health treatment. Mental illness does not attract the same lobbying zeal, the celebrity-led charity appeals and hospital picketing that force politicians to act on other NHS issues. It is a lonely epidemic.

There are, of course, health trusts that provide excellent out-patient care, therapy and community support. But people are often unaware that they are entitled to such things and GPs are reluctant to offer them because they know how scarce resources are.

This week, Health Minister Lord Darzi will publish his review into the future of the NHS. It will focus on giving patients more choice over where and how they are treated. If carried through, that, in theory at least, could force health trusts to start meeting the complex needs of people suffering from mental illness. But psychotherapy, community psychiatric nursing teams and acute wards will still have to compete for funding with expensive drugs for other illnesses. They will lose out as long as taboo, denial and ignorance define the way mental illness is discussed.

Nothing Labour has done in government suggests that will change. That is a betrayal of millions of lonely, vulnerable people. It is also a challenge to other parties to develop policies that will finally move us beyond the age of 'lunacy law'.
"

I disagree with the statement "
Today, modern medicine has a sophisticated understanding of the broad spectrum of disorders that constitute mental illness, but politics seem scarcely to have moved on.".

I believe medicine is a million miles away from this position.

The comments left at the Observer website I found to be incredibly moving and enlightening. You can read them here.

Friday, 27 June 2008

Where Did Today Come From?

Out of nowhere my blog has had its second 100 visitor day and the odds are that this will be my best ever day. The turnaround had nothing to do with my campaign nor with any recent post but with a 15 month old post - only my eighth post as a blogger.

Firstly Tim Ireland picked up on a post (by Slugger O'Toole) about a Belfast blogger arrested twice because he had named public officials whose actions he questioned. Tim then linked to
a post I wrote in March 2007 about lawyer Timothy Lawsson-Cruttenden who was an acknowledged expert in using The Protection from Harrassment Act 1997. My post also links to a follow-up on the very next day.

Then Slugger O'Toole linked to me in two posts (here and here).

UPDATE I have just noticed - fool - that I wrote 3 posts on this subject. The first post - not linked to by Tim or Slugger - is here Scary!!!


The rest is my best ever day and still time for a few more.

I shouldn't make too much of my visitor numbers because the underlying issues are very important.


Thursday, 26 June 2008

Summer Holidays Tomorrow

Oh no!! If tonight is anything to go by then the next 7 weeks or so are going to be very long indeed. I'm already counting down the days to the restart date of August 20th.

I've got two separate week-long breaks booked - the kids and I. The second week especially will be great because we're staying on my cousin's farm where, more than 40 years ago, I spent many happy summer holidays.

I hope I manage more time to myself this summer because last year in the 6 weeks' summer holidays I had only 4 hours free time during the day (2 x 2h) when I was not responsible for the children.

I have indulged myself today. I've bought myself a good camera - not a DSLR - but a highly-rate "bridge" model. Financially, it wasn't a wise decision but I've wanted a good digital camera for a few years now. Twenty years ago I was very interested in photography and I hope, as I rebuild my life, that it will become so again. Also I think I'm entitled to indulge myself occasionally.

I need to go now and check my blood pressure. After tonight I imagine the result will be sky-high. When the results of a blood test come back, I'm likely to be put on medication and, of course, I'll hear the dreaded words, "Dr Carr you are too heavy by far. In fact you are now officially obese! Weight loss is very important." Unfortunately, where I am at the moment, losing weight is a virtual impossibility but I suppose I must make a real effort. How can I get some control back into my life if I can't control my weight?

Time to pump my arm!


Childhood Reminiscences No3 - More Shops and Shopping

Back in January I started what I hoped would be a mini-series "as I think back about my childhood in the 1950's and 1960's in urban Scotland - times of immense change."

Unfortunately, I managed only two posts: the first on Household Appliances and the second on Shops and Shopping around our house. I didn't think there would be a gap of 6 months until Part 3 but personal circumstances
took over. Anyway, on with the series. This third part deals with the rise of self-service, supermarkets and shopping in areas away from residential areas.

In my early years there were no supermarkets, there was no self-service and shopping was a task undertaken only when there was a need. Food shopping was done almost exclusively in local shops close to home although there were grocers in the town centre. Shopping for non-food items was done in the town centre and only occasionally did we venture to the big cities of Edinburgh and Glasgow.

When self-service first arrived it was the Co-op who introduced it to our town but this wasn't self-service as we understand it today. Customers didn't have the freedom to walk around as we have today but had to follow one behind another just as we do today in, for example, Ikea's cafeteria which has metal barriers to keep customers in line. In the diagram the customers moved in the direction of the arrows; food was available on one's left and the square in the middle which was bounded by metal barriers was unused.

This was a very
inefficient use of space and, soon after this, the town's first supermarket opened.


Lipton's was this supermarket, small by today's standards but utterly amazing then but not everyone embraced self-service. One town centre grocer ran an advert in which they stated that they would have nothing to do with self-service but would continue to give good service to their customers. Unfortunately, by not moving with the times, the business closed. The opening of supermarkets marked the end of the corner shop as a key component of our daily lives.

Another grocer - Cooper's - had a strange method for payment. The shop assistants didn't give change but they had a system with wires where the payment went to the cash office and change came back on the wire system. Unfortunately, I can't remember how this sytem worked. The Co-op which was the town's biggest shopping group having one small street to themselves had its own strange system. Again, the shop assistants didn't give change but payment was put into a small cylinder which was put into a system of pipes which, I believe, was under vacuum and the cylinder "shot" away to the cash office and change and receipt returned by putting the cylinder into the appropriate pipe and the cylinder "shot" back to the assistant.

Today we take the ready availability of music and DVD's for granted but, when I was young, records - 45 - were available in only two shops. One shop had only a small counter for records but another did have an upstairs floor. They even had a sound-proof booth - three in was tight squeeze - in which one could listen to music without disturbing anyone.

I remember going to the cobbler with shoes. He worked in a dingy old shop which I'm sure had changed little in 50 years. This cobbler's claim to fame was that he used no method to identify shoes: he relied on his memory. I don't know what he did if a different person collected the shoes.

One last memory which isn't as old as the others here concerns suits. There was no such thing as separate ranges of jacket and trousers where one has the opportunity to to find the best fitting jacket and best-fitting trousers.
Back then suits came as jacket and trouser combinations which made finding a good-fitting suit immensely difficult. A good-fitting jacket might come with trousers which were a few sizes too short.

Other than these few memories I recall little else about town centre shopping which I think indicates that this was not a large part of our lives. How different our shopping lives are today!

Monday, 23 June 2008

Still Empty

This blog is in neutral but not through choice. (Please keep me on the "active list". I'm not sleeping nor hibernating but simply living slowly.)

I sit at my pc and all I can do is passive: skim an "odd" blog; write an "odd" - or is it an odd - comment. There is no writing - if one discounts these few words of explanation tonight.

Write: a million miles away. There is nothing: no ideas; no enthusiasm;
no belief. I think this is similar to my life. I'm waiting for change but am unable to effect it. I start something / anything but make little progress. This mini-post is a case in point: I started but then I fell asleep for an hour in my pc chair.

I should state again - I said this in a comment recently:

the campaign goes on - somehow
the blog continues - somehow
life goes on - somehow

At some point I'll start to fly again. I have to wait for my wings to repair ....... and then ........

I have no dea what comes after "and then ....". Only time knows and until time deigns to tell me or until time passes
I will continue to sit at my pc and mostly I'll be passsive.




Sunday, 15 June 2008

Saturday, 7 June 2008

Certainty Crumbles

What a surprising lesson!

I was so sure. This was the chance the campaign needed to break out ..... into the big time, hopefully.

I worked into the very small hours writing my post; Ellee worked hard editing my tome to a reasonable size and my guest post appeared at Ellee's. I sat back and waited for my visitors' tally to start clicking over quickly. I waited and waited and waited and waited until now more than 36 hours after the post I've had one visitor referred on. In this time 3 visitors have gone in the other direction - to Ellee from here.

As I said I was so sure. I wanted so much for my guest post to be the launch pad for the campaign that
I hadn't considered this possibility. I was so wrapped up in what I wanted to happen that I knew it would happen but it didn't.

I need to take a fair bit of time to think about what I am trying to achieve and how I need go about it. Ginro, I think it was, questioned whether my focus was wrong in pushing the campaign rather than pushing for Mrs Carr's treatment.

Perhaps the lack of visitors to my guest post is a message to reflect on the direction!

I owe it to Mrs Carr to take my time and review what I am doing. Is it for the best? If not then I must change tack.


Reflection time starts NOW!


I'll respond to comments but I don't think I'll post again until I am happy with what I am trying to achieve.


Friday, 6 June 2008

Guest Post at Ellee's

Many many thanks to Ellee for allowing me to guest post here. My original post for her was so long that it required quite drastic editing - sorry Ellee but thanks for making such a good job of it. I left a comment saying, ""“Never say in one word what can be said in one sentence” is my unconscious motto!!!". My original post is shown below. You'll understand why Ellee had to cut it down.

__________________________________________________



Only a few of you will have seen this badge and will know about our campaign. Hopefully soon many more of you will support us. Let me give you some background with links to my blog. Full details are available at Calum Carr's Take.


I am campaigning - the first official campaign post is here - to get NHS Lothian to provide appropriate assessments, diagnoses and treatments for Mrs Carr but firstly I need this health board to talk to us, to tell us what they believe is wrong with Mrs Carr and to explain why there is, and has been, so little support and treatment. For more than 1 year I have tried to get answers, our MSP - health is a devolved issue - has tried also unsuccessfully to get support, assessment, treatment and explanations. In fact the health board took more than
6 months to reply to the MSP's second letter: a reply which did not address the key issues raised in the MSP's first letter. We have hit a brick wall, our whole family is suffering and now I believe that only by putting massive public pressure on the health board can Mrs Carr get the help she needs. I hope you can help us.


Until 2 years ago Mrs Carr was a fully functioning mother and Open University student with brilliant grades. Since then, and still today, she has severe mental health problems - anorexic, bulimic, self-harming, suicidal thoughts, attempted suicides, has "disappeared" twice (police involved), dissociation and probably an identity disorder. Her normal life is nowhere to be seen: she is unable to be a mother to our children; unable to study. She is a shell of the woman of early 2006. I have taken on all parenting and home responsibilities in addition to being a carer to Mrs Carr.
The whole family is affected: I have moderate depression and am very stressed; the children have been deprived of their mother for more than a year and are showing signs of increased stress and anxiety. Earlier posts about Mrs Carr's condition and the problems with NHS Lothian are here and here and here.


NHS Lothian has offered very little support. In fact I have over-estimated their support. Mrs Carr has been treated as though she is the patient each department can't wait to get rid off. Were it not for a brilliant private counsellor I have no doubt Mrs Carr would no longer be with us.


Last year I wrote: "
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 this is what they believe than, for God's sake, tell us, explain your rationale.

A previous post said, "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?
"

Trust? On two recent appointments with a consultant psychotherapist, not for treatment but for a second opinion, Mrs Carr was psychologically abused in a most cold, callous and dangerous way. Rather than describe them briefly here it is better if you read the two full posts (1 and 2).


Our local evening newspaper, The Edinburgh Evening News, is preparing an article highlighting Mrs Carr's plight. God, I hope the NHS can't taint the reporter and his editor. I know that, even if this article is highly supportive of us and highly critical of NHS Lothian, nothing will change. They haven't held fast for more than a year to cave in suddenly now. That is why I am asking for your support now. Only with massive MSM support and, hopefully, political support will Mrs Carr get what she so desperately needs. Through this web campaign I hope to build MSM support.

Although health is a devolved issue the problems we have encountered will be found throughout the UK. Therefore, regardless of where in the UK you live this - or worse - will be happening now. By raising the profile of Mrs Carr's case we will raise the profile too for others who are left to suffer or die without NHS help. Even if you live outside the UK you can help by ensuring that this story becomes massive.

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.


In May I quoted Nick Clegg who spoke of mental health services with the NHS. I quote Nick not for any party political reasons but simply because his words resonate with me:

"
"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."


Don't let NHS Lothian keep the door closed on Mrs Carr - help her, support our campaign.

Ensure, throughout the UK, that the doors open - help those who suffer in similar ways, support our campaign.

Please do whatever you can to raise the profile of our campaign.

Finally, huge thanks are due to Ellee for giving me this platform.


Monday, 2 June 2008

MH4A: Campaign Update after 1 Month

Exactly 1 month has passed since I launched my campaign: "MENTAL HEALTH 4 ALL - SUPPORT MRS CARR" and I have been overwhelmed by the support given to our family. My visitors and page views increased markedly and the campaign badge appears in others' blogs.


I had hoped to have built upon this great start but for two reasons the campaign is becalmed at the moment. A more positive way of looking at the situation is that the campaign is in a gestation phase. My visitor levels are still up; we're still getting great support but I am unable to move the campaign forward.

I had hoped that a newspaper article would have appeared by now but the story requires a fair degree of thoroughness which will take a bit longer yet. This article plus guest posts will, I hope kick-start the campaign in a massive way. The second reason is that I don't know how to grow the campaign. I guess the bottom line is that I haven't thought through a coherent campaign to increase the visibility of our problems and to increase the pressure on our local health board.

Any advice is most welcome.

______________________________________________________

Almost 3 months ago I wrote to the consultant responsible for Mrs Carr's care at the ED clinic asking that Mrs Carr be referred to a particular centre for assessment. No reply. Not even an acknowledgment. This is just another example of how Mrs Carr has been largely ignored by the local NHS.

I am sure that our health board isn't institutionally incompetent nor is it institutionally uncaring. Therefore I am left with only one possibility: a decision has been made - and all follow this - to give Mrs Carr the minimum treatment possible and to not engage in any meaningful way with her or me to explain the situation. There have been countless opportunities to write to us, speak to us, explain to us, empathise with us. Not one opportunity was taken. There is a reason but no-one will tell us.

We are in a limbo where Mrs Carr cannot improve because she is not getting any treatment; where there is no prospect of treatment because they will not refer her for assessment despite there being evidence to support one particular assessment; where, for the two previous reasons, our children will remain motherless for the foreseeable future.

Any organisation which behaves in this manner does not deserve to be be called a "caring organisation" but does deserve to be labelled cold, callous, calculating, crass and uncaring.



We cannot be alone in suffering this way.

There must be others who suffer more than do we.

Support us; help us get the treatment Mrs Carr needs and we are in a much better position to help others.

Please support us.

Our campaign must succeed for Mrs Carr and for others too!