The government want more access to personal information...well maybe they need to start looking on roads and in lay buys

Article from Dunstable Today @ http://www.dunstabletoday.co.uk/dunstable-news/Confidential-patient-files-found-on.5212066.jp

A blunder, which led to private files belonging to patients with learning or physical difficulties discovered on a road, is now under investigation. The records were from a residential home which is run by the Houghton Regis-based Aldwyck Housing Group.

The files have now been confirmed as the private notes belonging to six people who live at Dove Lane Residential Home, in Harrold, north Bedfordshire.

A spokesman for the housing association said the error was something the group had no control over as the files are managed by an outside agency. An NHS Bedfordshire spokesman said a full investigation was now taking place into how this happened. The files were found on April 23.

He said: "We take patient confidentiality extremely seriously. We do have robust systems and processes in place in relation to handling medical records. YEAH, RIGHT!

"We have contacted the families of the residents to apologise. Our early investigations suggest this was an isolated and regrettable human error. However, we will look at everything and take whatever steps are necessary to avoid this happening again."

It's too hard to be publicly 'nice' all the time (privately well who knows anyway)

And being a shit bag takes up alot of energy too but sometimes it has it's uses!!

Hot from internet chit chat in regards to personal irritation levels and certain people that get the goat, was contemplating doing a list of people I loathe..with a counter balance of people I admire. A bit of yin and yang. People I admire is in pending file at present. Dealing with the former here.

Only is more about certain types of people rather than specific people (although Max Clifford and Ben Elton are right up there).

It's the hypocrites that really get me. More so than the veciferous pro or anti factions.

Max Clifford is an example of someone who will shift opinion as soon as he smells the dosh. I remember the post Big Brother racist scandal and seeing him interviewed and how vocal he was about Ms Goody's behaviour in the house and how it would destroy (and rightly so in his opinion) her celebrity status. Next thing she gets cancer and he is selling her as the poor man's Princess Di.

Ben Elton...well the militant leftie turned nouveau Labour bourjois did it for me. I can't see the point to 'We Will Rock You' (his version) at all. I think Freddie Mercury was a superb performer, Queen were an epic band and it doesn't take some rip off farce to get that.

Rumour..which hopefully is just a rumour..on the media grapevine is that there is going to be 'Jade Goody' The musical of her life. For fekk sake, where is the baseline on crassness? and the sad thing is I can see it playing to packed seats. Scary!

And with that in mind....here is a homage to all those musicals that really are a waste of £30+ a ticket.



Counter balance, I think Omid Djalili will make a stonkin' Fagin when he takes up the role in the West End production of 'Oliver Twist'. Give it some welly mate!

Pick and Mix for Sis

The latest cutty outty bits

The last card was made for Dad but, looking at what it represents, think I will keep that one to meself and make him another..with something less isolatory as a theme.

Getting back to my level(s) of normality- and never being too far away from the truth

After a couple of housebound hianus days (thanks to 'joys of womanhood'),decided to venture to the local shops yesterday.

That was after sticking tv on in bedroom, whilst having a look round, blogland and watching an American programme about 'environmental health'. There is an English version, where you get to see the states some people's homes are in. Wasn't uplifting stuff to watch, particularly as one story was about a woman who had died and, due to no contactable relatives, her neighbour had to identify the body and help organise her funeral (3 people attended..the neighbour and 2 members of religeous congregation). The other was about a woman whose whole appartment was jam packed full of stuff. The outcome of that was a punch up between the cleaning company man and the appartment supervisor. Hmmmmmmm

It did make me assess my own living situation.... I looked at my bedroom and realised that I am a 'clutterer'. Not so much a magpie as I let things 'go' too easy and decided some instant action was necessary. Both my normal dustbin and recycle dustbins are now full but need to stick to the mission to minimalise my sleeping space. Note to self: put dusbtin bags on interent shopping order.

Anyway, chivvied on by doing something slightly useful decided to take a walk to the shops and for being a brave bunny, popped into the chippy. Whilst waiting for chips to be cooked, I had a look at the Dunstable Gazette.

The story of Em's step mum's best friend's stabbing, and subsquent death, was front page news. The stabbing took place in a private care home in 2007 (where she worked as a carer) and the court case has been going on for a few weeks.

The man who stabbed her has been transferred to Rampton High Security unit for an indefinate period and the judge asked some pertinent questions, such as why someone with such a severe and uncontrollable illness was allowed to go into a home, which had the primary function of caring for people with brain injuries and learning difficulties. He is seeking an independant inquiry. I am not sure if he will get it but I think it warrants that.

Whatever happens it won't bring Cathy back but perhaps some justice can be done by working out where the problems were (although, they seem a bit too evident to me).... As in why the decisions to place the man in the care home were made and what can be done to ensure that people who are a threat to others (and themselves) are placed in situations where they can and do kill people.

I understand we all have the ability to kill other people but most of us, even those of us with illness, are able to appreciate other people's rights to life and respect that, along with comprehending the impact of someone's death on their families. However, there are some people that can't or won't (some people don't have those values) and for some of them that is because their illness is too severe and 'support services' either can't provide the right treatment or the treatment doesn't work.

In the main, I don't like compulsory treatment orders, and particularly in the community, as I have yet to have proof that they work but when a person is known to be dangerous and non responsive to treatment then I see no option but for them to be placed in secure units. It kinda goes against the grain but I think Cathy would still be here if a more appopriate environment had been found for the person who killed her.

I saw Em yesterday and it all seemed more poignant (and not just because of the emotional issues for her step mum) as Em is doing Criminology at uni and wants to do her dissitation on Criminal Law and Mental Health. Of late we have been talking about this and she is going to be looking at the statistics first of all..as in how many people in prison are diagnosed with mental illness (I have my view on statistics but you gotta start somwhere) and why that is. We think she will have to narrow her dissitation to a specific but at the moment she is thinking of the sort of research she wants to do and will look at case studies. She will be visiting people in prison this year, and wondering how many of those have MH problems??? I think it will be quite a challenge for her and is early days so she might change her mind...as in the specific she picks but... she has been allocated a professor who specialises in MH to help her. Is of mega interest to me but more importantly I hope what she learns helps her in the future vocation.

On a smaller scale, we visited Dad who was pretty fired up about his care. Usually, he has this detached view of it...like he isn't really participating in anything to do with his life but he was really angry. He feels like he is being bullied and bullshitted. Due to my own concerns in regards to the role I play in this, and month on month of trying to help him get what I think he needs,I said that he needs to express this with members of his care team. He said he didn't want to go to the next care review meeting because it won't help him. I said if that is his view then is up to him. For sure I can see that if he doesn't go, certain supports can be removed and for all his moaning, he moans more when his support worker or care co-ordinator don't turn up or help him, or when his meds don't arrrive or his hot meal isn't there.

I would actually prefer it if he did have a more pro-active approach to his care and put some of that frustration (the energy behind it) into doing things with the supports that are in place for him...but I sense we are in another cycle that will lead back to him slumping and all his anger yesterday will be replaced with the internal punishing and external..well... not much happening.

Ultimately, if he is consistent enough to make a choice, or choices, and stick by them..and dependant on what they are I might need to make some new choices for myself. I might actually take myself out of the equation for a while, not to prove a point as to take the bloody pressure off me. Most of the time all I am getting is caught in the middle and being hammered by all sides!!!

Anyway, is Sunday. Day of rest and am going to spend some of it in the garden. Have been making more progress with cards and think will allocate myself a cutty out corner with nature.

Reflections of a Female Eunuch

The quiet afternoon in the garden didn't quite turn out as expected. Sometimes I have self imposed social phobia...as in I really do need a very personal space to be in.

Gardens can be just that. When I was in the crisis unit, last year, I spent most of my time in the garden there. It was plenty big enough for those of us (5 inmates) to use and not be in each others' faces and actually the other people I was with respected fact that I needed to be alone and in the garden alot of the time.

However, as Suki and I settled on the blanket to absorb some sun, the neighbour a couple of doors down came out to chat to me. For a while I was okay talking, sort of general non emotive stuff but then they (who have an elderly parent with MH problems) started telling me all about that. Ouch! Felt guts starting to churn and was doing the "Oh dear", "I know how hard it is for you" talk until I got lost somewhere and came back to her speaking and me going "Yes" and "Hmmm". Inside I was shouting "Fuck off and leave me alone" but I carried on "Yessing" until she said "I best leave you to get some peace". "Thank Heaven" I thought and picked up my book and then another neighbour came out and was telling me how they've lost their confidence since they had their fall and that led on to a condenscened history of their life. I understand people are social animals and they need to talk about their worries etc (just like I need to let out here) but the timing sucked.

I gave up on the garden and Suki and I went back inside, where i took another whole lorazepam and waited to unwind.

Am having issues with the lorazepam. There are issues with benzos. Well researched and recorded and my tolerance levels are lowering...not aided by fucking stress of dealing with social care and MH professionals whose main objective seems to pass the buck back to me.

Got a bit manicky. Maybe kick back from the meeting and not getting enough personal space but, on an impulse, decided to go back and see Dad. Had some food for him, that came with delivery and popped them in a bag and headed off.

He was pleased to see me and I was pleased that I could do something useful for him. He chatted about the meeting and said he was unhappy about the way the social worker was signing off his case. Like he was being left in the lurch again. I know. I feel partly responsible. I feel like I should do more and if I do it will make things alright but I know really it won't because Dad was more or less living with me when he got ill and he chose (or was compelled or whatever) to move back into his flat and so began the latest 16 months of frustration and despair. If I was the answer, I don't think he would have opted for/or become so entrenched in self exclusion.

So says she who spent the afternoon pining for exclusion!!!

I asked if the problem with his meds was sorted. Surprise surprise...it was not. He hadn't heard back from the care co-ordinator and didn't know what was going on there. I know what was going on ...Fanny Annie!

I gave him a couple of lorazepam. Which of all the meds he is on seems to help the most. he told me that when he did one of his flits, he didn't take his anti depressant for a week and felt no worse. So, hopefully, a couple of days without them won't make much difference...But that is not the point. The point is he is on medication and because of crap systems he rarely gets them when they are due and nobody bar us seems to care.

He told me how shit he feels and he cried. We hugged a while but then he got anxty so I made us a cuppa and we ate some Jaffa cakes then I gave him a quick hug and kiss and came home.

AND I FELT LIKE A PIECE OF SHIT because I know how shit it is to feel shit and I think he feels shit more than I do. Which doesn't bode well for either of us.

AND THEN I GOT SO ANGRY. Angry because the services really don't care. They do so little and make out it is so much and all the time, at that meeting, they were trying to get me to do things at every opportunity. Like with these ruddy direct payments and ringing Age Concern and even with this possible move to a new home. They expect me to go down the council and sort out the paperwork. How much are these people being paid an hour? £30-40. Is easy money just to push people from one bureaucracy to another and then fekk off and leave them to get on with it.

Ultimately, they go home, with their easy earnt dosh, and play happy families and Dad is left floundering and I am left feeling responsible.

Spoke to a friend last night and I said maybe no service is better than that and they said the problem is if you don't try then Dad is left with 2 options....or maybe not options so much as outcomes....He either manages to survive or he dies.

Life is harsh!

Another Review Meeting and the possibiliy of a more positive outcome

The Social Services post assessment review meeting took place today. Yes, whoop whoop, another meeting. How I love meetings!!!!

Direct Payments were discussed. Don't they sound like wonderful things? Payments made to patients to buy the care they need. Problem is the paperwork. Somebody, namely me, would have to take responsiblity for writing a kind of justification for funding, then should funding be agreed I would have to interview the person or persons to provide the care (finding them in the first place might prove a tad difficult) and then finally and regularly completing a sort of book-keeping exercise. I said that I am not anti doing this...in that if it actually meant my father getting the right kind of additional care that would be a good thing. However, I do not like bureaucracy and although I worked with reams of varying paperwork for years, my tolerance levels are not what they were and I am not inclined to complete endless pieces of paper that mean fekk all to me or Dad. I think the Direct Payments idea is in a kind of limbo but somebody agreed to send me the paperwork to look at. More thrilling stuff eh?

Paying 'Age Concern' to do his shopping was another area of discussion although that would be at a cost of £12 per hour. Now Dad isn't flush enough to keep paying for things and he is already paying for the meals on wheels service and will now be making a financial contribution to the private care company that will provide his evening care service. Having seen the highlights of last week's docu on private care companies...am not feeling all warm and fluffy about the service he is likely to get but gotta go with it and see if it is 15 minutes of quality care time per day!!!!

The only really positive outcome, and that took about an hour to get to, was that a higher level care provision home is being looked into. Not a residential home...but a flat where care staff are working there most of the day and can spend time with Dad. I dunno whether that will be progress or not but I think it will, at least, provide more daily and professional contact than he is getting now.

Dad's view on all this is that he wants to want to do things and doesn't see himself improving wherever he is. I can understand that, but as I said to him and the staff at the meeting, it is really about the best quality of life and care you can get, feeling how you are. Dad said he wants ECT. I think he is hoping for some intervention that will make everything better. I guess alot of us hope for that but in the real world, certainly my real world, I haven't found that kind of intervention yet.

Actually, if he wants the ECT and the shrink agrees that it might help him, I won't stand in the way. When people get desperate, who am I to say what is and isn't ok to be done to their body? All I know is he had it before and it didn't make any difference. Perhaps it might work now but I am full of doubt.

So, we are now waiting for an appointment to be made to view the more supported accomodation. I am waiting for loads of paperwork to be sent through for me to wade through and for the care co-ordinator to sort out the latest cock up on Dad's meds front. He was only given enough medication to last him till today and his next lot of meds aren't due till Friday. AND SO IT GOES....

Have updated MP and is now on to the next stage of the waiting game.

Am heading off back to my garden. I am finding spending time there, reading, pretty therapeutic and demand free.

South London and Maudsley Mental Health Trust - Accountability

Not that there is any accountability to be got. I know from my communications with local Trust and the MP trying to get answers, in regards to care for my father, that it is all about blocking tactics.

But perhaps a way forward is for patients to record what is said at meetings...particulary when they are being messed about by their service providers. I am quite surprised that the Dr involved agreed to be recorded. Usually, anything that smacks of transparency is avoided by medical professionals.

Am putting this video up here because I think youtube is another route people can take to raise issues about the lack of appropriate care available in the NHS. More poignant because the Government's Choice Agenda for the NHS is hellbent on excluding MH patients.

The right to choose to have children or not and nature doing what it does

This is prompted by New Republic asking people to sign a petition against those who wish to make (and want the power to do so) decisions for disabled groups.

Having experienced motherhood (and found myself mostly lacking) those people could argue that disabled people aren't in any position to decide what is in their own best interests but since when has life been that black and white (I doubt 2 people with the same disability have the same life experiences/personal qualities or aspirations)? And since when have people without disabilities been shining examples of parenthood?

I always find it quite bizarre that the pseudo scientists (who underneath it all seem to have their own agendas) think that nature can be so controlled anyway. For example, prior to falling pregnant I was in fact using appropriate birth control (as advised by family planning clinic). The combinations should have been around 99.5% safe. So that makes me the .5%!

I guess the genetic engineers, manipulated by those with agendas, could attempt to create a section of society that is unable to produce children but that pretty much goes against all the laws of nature (and I think nature will find a way). I remember reading something about 'fat rats' or was it mice? Anyway, the scientists had eradicated the fat gene..or so they thought..but several generations down the line fat animals appeared again.

The argument, I suppose, is around people's understanding of what having a child means and the individual's/couple's capacity to provide it with the healthiest/balanced life possible..but again you have to then look at those who aren't disabled and , on balance, there doesn't seem to be any balance. Certainly not proof that disabled people are any less capable of providing a loving and caring home. Be that, and hopefully with, a set of dynamics that could be deemed unconventional but works for them.

Variety is not only the spice of life but it means that people can and should be able to make responsible choices (I would like to hope that there is unbiased support there, should they need it, to do so). If they then make responsible choices...well that is another story but it doesn't matter how hard the scientists try and create perfection..it is unachievable and I am glad about that.

A cloned society is not a real society.

Doctor's receptionist awarded honorary medical degree

Friend sent me through this story, hot off the press of News Biscuit (http://newsbiscuit.com/2007/10/18/doctors-receptionist-awarded-honorary-medical-degree/)

The British Medical Association has awarded its first honorary degree to Susan James a 54-year-old receptionist at a South London doctor’s surgery. Mrs James was given the award after demonstrating an extraordinary ability to diagnose patient’s illnesses within seconds of meeting them. Almost without exception she was able to deduce that the patients were nowhere near as ill as they thought they were and so did not need to see the doctor.



‘It seems insane that the Health Service spends so much on blood tests, x-rays, explorative surgery or whatever when Mrs James could just give them a quick once over and tell them they’ve probably just got a cold.’ said the Chief Accountant of her Local Health Authority. ‘There was one man who came into Mrs James walk-in surgery complaining of a tightness in the chest, shortage of breath and claiming he’d passed out a couple of times. Mrs James told him that men always make a big fuss about feeling slightly ill and that it was just a hangover. We never saw him again.’

In awarding her with an honorary medical degree the BMA singled out Susan James’s unwavering adherence to her Medical Receptionist’s Oath that required her to ask loudly what was wrong with each patient, often making them repeat it several times for the amusement and education of other people in the waiting room. She would always keep patients up to date with how long they had to wait, shouting ‘Scabies man – you’re next OK? Then it’s you haemorrhoids!’

Susan was self-effacing about the award saying that she was only doing her job and admitting most people thank her for her interference in the end. On the subject of several divorces brought about by Susan’s disclosure of medical records to spouses of patients she was less forthcoming. ‘I’m not the one who visited Amsterdam on a stag night and slept with a prostitute am I?’ she said. ‘Why should I feel guilty for telling everyone the facts down at the hairdressers?

Response to Anon in regards to Potassium Deficiency

Apologies for not getting back to you.

In answer to your questions:

No. My actual blood levels of potassium where not discussed.

I do have an on-going potassium deficiency (have been aware of that for 17 years) but am not sure what it means. As in what the levels are. No medic has bothered to tell me. Neither have they discussed hypokalamia with me. I would hope that is because I don't have it but am not sure as it has been treated (or more so not treated) as if it isn't a problem by medics.

Am hoping that now I have changed GP practice, will be able to discuss that and the possibility of a blood test to check my hormone levels with the new GP.

Adult Literacy Classes Needed for East of England Strategic Health Authority Staff

Got a letter from my MP on Friday, along with it was attached a letter from the SHA.

Reads as follows:

Dear .....

Thank you for your letter of 1 April 2009 requesting a review of the care received by Ms Lawrence's fathers.

Now, far a I am aware, I only have the one!!!

Perhaps the fact that although the letter was written in the name of the Executive Assistant to the Chief Exec but pp'd by someone else means the Executive Assistant was far too busy to check the letter before it went out...or perhaps they just don't give a shite.

Needless to say, the letter didn't contain much else apart from a sentence, telling my MP a response will be sent in due course.

Now for a verse of "10 cogs in my system. I'm still grinding along. That damn MP is after me, but I'm singing the same old song"

Changing GPs - with a view to taking some time out

Another positive day on the getting out and about front, yesterday.

I woke up feeling pretty crap. Somewhat disorientated and yukky but not sure why. Is quite a usual state for me to find myself in in the morning. Was only rectified by taking an extra half a loz before it's due time. Still that worked and went to town with Dr Jekyll (who is much more Jekyll than Hyde at time of going to press). His most major problem at the moment is loneliness (in part aggrevated by paranoia but more to do with rejection by those he wishes to have as his peers and a society/MH service that has ostracised him). Anyway, that is a book and a half and his to be writing (should he ever feel so inclined).

My prime directives were to get my prescription (only half of which was available) and then change my GP practice. Have changed to Dr Jekyll's because it is smaller, he seems to find the GP's there helpful and am sick to death of the continual probbies I am encountering with my existing GP practice.

I like the feel of the new practice. It is small and the receptionist welcomed Dr J, calling him by his name and being friendly and not in a contrived way. As I wrote to friend on another network, the receptionists at my existing GP's all wear uniforms, have their hair lacquered into submission and act like they are forced to deal with patients rather than do it from a caring perspectivwe. Another reason I have changed practice, like I needed another, was that the practice is going to be assimilated into one of those mega community health centres. I don't think big is better and am hoping that opting for small means a more personalised (patient focussed) approach to my care. Gotta live in hope!

I have been booked an appointment with the Health Assistant for next week...obligatory blood pressure check and blood tests (yes more blood tests). After that, unless something major happens, want to take some time out from seeing medics. I need breathing space and to not feel I have to take any new medication so that if/when time comes where I am in more postive frame of mind for dealing with medics, that meds I do take will be taken without me flapping (any more than I am likely to anyway).

Dr J then headed off to the pub and I went walkabouts second hand shops. Haven't done that for a while. Was a day of good pickings. I bought a couple of book tapes because have been struggling to read lately. Was on the way to another shop when Em rang to tell me she had past her driving Theory Test. 50 out of 50. Game on!

It has taken her the best part of a year to get her driving together. Some people, like her fella, have about 8 lessons and then pass. She has had about 40 but her instructor reckons she is ready for her practical test now. Am keeping fingers crossed for her because it is very important to her that she passes. She is getting sick of relying on her fella to take her places and can't be doing with public transport (join the club).

Went to a couple more second hand shops. Am looking out for trousers for Dad. He has 2 pairs that have seen better days. Problem is getting the waist size that matches his leg length. Think I might have to order some on line.

Made a couple more purchases for myself, including a book called 'The Eye of Jade' by Diane Wei Lang. Wasn't sure I would be able to get into it because the last couple of attempts to read have left me frustrated. I have started and then noticed myself 'parrot style' re-reading the same paragraph over. Anyway, bit of a breakthrough as I got to page 54 last night and am totally into the plot. Is great to be enjoying what I read again.

And today Hayley is coming round to make cards. She is still minus a car(insurance company offered her £100...rotters!) but is using one of those 'No Win, No Fee' companies to try and get enough compensation to by another. Am not too keen on that style of insurance (any really) but if it gets her what she needs, then why not?

Later Em and her fella are round and we are going to see Dad. So is another busy day here.

Maybe the next slump is just around the corner but am making the most of the pozzies while they last.

As Good As It Gets (at any given time)

Sort of prompted by Aethelread's posting (his reflections on his mental health) and the latest clap trap from Mental Health Foundation. Before people start thinking that I am relating Aethelread's post directly to MH Foundation, I am not. More that the organisation's view that the public are worrying too much and should chill out is the latest in a line of 'Bollocksy Hype' that is an insult to the thoughts and feelings of people who have been or are being made redundant (through no fault of their own) and those of us with long term mental illness that are sick to death of self serving organistions telling us what to do.

I could be accused of selling Aethelread my own hype..which is basically around individuals having to muddle through, doing things that prevent (as best as) more incoming demands and negative input that drives us (deffo me) more skatty. For sure trying to do positive things..things that make me feel better (and that depends on the day and where my starting point is) and avoiding crass and crap propaganda that will either make me feel a failure because I am not singing and dancing my way to recovery or putting up and shutting up like a good little loony.

Anyway, I have been managing pretty well. Nothing at all to do with some structured WRAP plan or recovery model. Haven't had any epiphanic happenings. Have just, as I always do, dealt with each day as it has arrived and acknowledged that there have been more pozzies than neggies. And that is down to me, not anyone else (as it usually is).

No man is and island and I am not saying that I can get on with my life without having other people in it but they have their own issues and there is a part of me that has to detach (again varies and depending on my own states at the time) to be able to deal with me.

Is not so easy to do when it comes to Dad because Dad is different. Dad is a core part of me and getting the balance (when there is one to be got) between helping him and becoming overwhelmed is a tough one.

The only wobbly I have had was due to another cock up on his meds front. He rang me in a flap. By the time I got to him he had rung his care-coordinator. Won't go into details but basically she was dumping the problem back on him. He was agreeing to do things and then getting confused. I rang the PALs department basically asking what the role of a care co-ordinator is because from where I was sitting it was to pass the problem back to the patient (who was then passing the problem on to me). They were indirectly saying that they didn't actually want to get involved. Nothing new there then!

Cutting to the chase Dad rang his GP practise and got very confused and was told a GP would ring back in an hour or so??? I advised him to ring his care-coordinator back and she relented and sorted the problem out.

All that shenanigans when she could have just sorted it out in the first place. I have been advised to invoice the Trust for my time and inconvenience. I could do a retrospective invoice for the many previous times when I have done MH professionals jobs for them but I don't want the money, I just want them to do their jobs properly. Fat fucking chance!

Anyway, that was the blip. Most of the rest of the time has been good. I have been walking to the local shops (with no freaky moments), and getting Dad's shopping. Walked to town with STR worker and thoroughly enjoyed that and the time we spent talking together. Stayed over at friend's and cooked a (veg) sausage casserole and when at home been listening to the radio (Beeb 4 has interesting selection) sorting bits about the house and making cards.

Was told the psychiatrist's letter and test results were sent to GPs on Tuesday but am in no hurry to put another lot of meds in my system...and certainly not Lithium. Have gone from being concerned about side effects to very anti.

Am coping, pretty well, with the lozees (back to taking 1.5mg per day) and that, for now, is as good as it gets for me.

4 Psychiatric Patients Die Each Day in NHS Care

http://www.guardian.co.uk/society/2009/apr/12/mental-health-patient-safety

Denis Campbell, health correspondent
The Observer, Sunday 12 April 2009


The NHS is today castigated for providing "inadequate" psychiatric help to vulnerable mental health patients, as new figures reveal an average of four deaths a day among those in its care.

Data collected by the National Patient Safety Agency (NPSA) shows that 1,282 people in England died in what it calls "patient safety incidents in mental health settings" in the period 2007-08.

Another 913 patients - more than two a day - suffered what is termed severe harm, or permanent injuries, in such incidents.

The figures include patients who died as a result of self-harming behaviour, including suicide, disruptive or aggressive behaviour, medication safety errors and accidents, although it is not specified how many deaths fell into each category.

Campaigners claimed last night that the high death rates showed that many of the hundreds of thousands of mentally ill people who seek help each year receive a second-class service.

"These figures are shocking. It's a scandal that four people a day are dying while under the care of the NHS, and nearly three a day are ending up seriously harmed. It's an appalling indictment of NHS psychiatric care," said Norman Lamb, the Liberal Democrat health spokesman. The party unearthed the statistics by analysing reports sent by every hospital trust in England to the NPSA.

"These deaths are the result of inadequate attention and resources being given to mental health, despite the patients being among the most vulnerable and needy in the whole health system.

"There's discrimination in the system that disadvantages the mentally ill. The NHS is falling down too often in its responsibility to do whatever it can to protect such patients," he added.

Paul Corry of the mental health charity Rethink was equally critical: "These figures are very disturbing and unacceptably high. Almost 1,300 deaths in a year is far too many. The NPSA data tell us that too often NHS care for mental health patients is poor."

The NHS has reduced the number of suicides in psychiatric hospitals in recent years, said Corry, but guidelines intended to help another vulnerable group - mentally ill people who have recently returned home from care, among whom suicides are common - are widely ignored. "Every mental patient who returns home is supposed to be visited within seven days to check on their mental state and see if they are feeling suicidal," he said. "In places where it's done it helps to stop people taking their own lives. But very often it doesn't happen."

The NPSA figures do not specify causes of death, but Corry said the majority were likely to be suicides. Poor treatment of the mentally ill by the NHS also meant that those with underlying physical health problems such as heart disease and breathing difficulties often had their conditions undiagnosed, which sometimes led to death from natural causes, he added.

A recent NPSA report on patient safety incidents during April-September 2008 shows that 627 people died in 64,353 mental health-related patient safety incidents, though it does not state how many of them were being treated as inpatients on psychiatric wards.

The Kent and Medway NHS and Social Care Partnership Trust had the largest number of deaths - 57 - during those six months. The Northumberland Tyne and Wear NHS Trust reported 49 fatalities, while the Hertfordshire Partnership NHS Foundation Trust had 36.

A Department of Health spokeswoman said: "It would be irresponsible to draw conclusions from this data without knowing the details of each case. But we do know that safety on mental health wards is improving. Suicides have been radically reduced, from 215 in 1997 to under 150 now."

She cited £130m spent in the past two years on acute psychiatric wards to reduce the risk of suicide.

Beds and Luton Partnership Trust Up For Grabs

East of England trust offered up for merger
8 April, 2009 | By Dave West

NHS organisations are being invited to bid to merge with a trust in the East of England.

NHS East of England said the decision to offer Bedfordshire and Luton Mental Health and Social Care Partnership trust up for merger was a first for the health service.

The strategic health authority wants a merger to be under way by the end of the year and hopes to establish a model for handling trusts not expected to make foundation status.

The trust’s chair and non-executive directors announced in February that they would step down to make way for a merger, after accepting it would not become a foundation in its present form.

NHS organisations have been askedUp for Grabs to submit expressions of interest, which will be assessed by the SHA.

Innovative proposals
Director of strategy Stephen Dunn said it had discussed the process with the Department of Health, Monitor and the competition and collaboration panel.

“We would like to establish this as an exemplar of how these transactions happen in future,” he said.

“We are really keen to encourage innovative proposals, for example including joint ventures.”

The process is open to non-foundations but Mr Dunn said: “The key criteria will be ability to deliver a successful foundation trust model.”

The portrayal of the mentally ill on tv - Steriotypes are us

Due to having one of those days where I feel totally crap, both physically and mentally, I spent yesterday slumped on my bed with the tv pretty much talking away to itself.

Had managed to hang on in there, whilst watching a programme about Ramesis and the story of Moses (on Discovery Knowledge channel). The purists could argue that a scientifically based programme would wish to disregard and try and undermine bible stories but I think it was an interesting reflection of views towards religeon at the time (Ramesis reverting Egypt to a multi god faith in complete contrast to his predecessor), in addition to looking at the 'iconic' happenings such as the plagues and the deaths of the first born sons (no evidence to show that first born sons were killed by wrath of God).... Seems more likely (on evidence shown) that Ramesis' first born son died in battle. However, I retain my view that history changes (as in how it is portrayed) after the event and dependant on who is giving the account.

I sort of zombied out (thanks to extra lorazepam use) for most of the afternoon and zoomed back in when 'Doc Martin' came on. Hadn't seen it before. Don't think I will be watching it again. Apart from the main character who is a single minded, misery guts with the bedside manner of a Koala (yeah, they look great but you wouldn't want to be messing with one) the sub plot involved a character with Bipolar Disorder. You think Doc Martin is a sterio-type!!!

I hold my hand up to having my own pre-set biased (based on previous viewings of tv characters with mental illness) on how the mentally ill are portrayed but this programme did nothing to dispel my view that we are either there to add comic value or to reinforce images those without illness have of us.

The character, who was the friend of a nare do well and wrapped up in some scam, hadn't been taking their medication (naughty naughty)and ended up holding several key members of the cast hostage...on the grounds that they were part of some big conspiracy against them.

Where was the counter balance? I didn't see one. Several comments such as them being 'barking', 'bonkers' were made by the Doc and overall I think the person with the illness was made to look like a total tosspot only fit to be treated like the village idiot (which they duly were).

I wouldn't have minded so much if there had been anything remotely relevant to looking at providing the right treatment for the person, rather than them being presribed a medication without any medical evidence that that was the medication they had previously been on...as in no checking up by the Doc.

All in all it was pretty shite. Doc Martin lovers will most probably think it is power for the cause, although as the Doc is portrayed as a stoic stickler to the science (rather than showing any empathy towards the interpersonal side of providing care) the writer/s made it a pretty contradictatory story line.

Nope! I won't be watching any more of that twaddle!

As some reward for following the story line to the bitter end, I was rewarded with a film about Cole Porter. Knowing so little about him, it was an eye opener. The relationship with his wife (tested by his external marital relationships with other men) was the core of the film. People will think of him what they will but his wife stood by him (not without trying to make a stand for herself) until she died. In his own way, Cole Porter stuck by her.

Don't think the film would be everyone's glass of champers but, as a brief look into his life and marital relationship, it was good enough for me and the 'cameos' from singers such as Alanis Morrisette and Robbie Williams were an added bonus.

Today, I will be trying to avoid feeling as cruddy as I did yesterday. Not sure how but it may well involve keeping the hot water bottle topped up with hot water, serious comfort eating and additional sedation.

The DVDS I ordered have arrived so am looking forward to watching 'The Dark Knight' and 'Music and Lyrics'.

Blood Test Results, Discussions with Medical Persons and the Peri Menopause

The psychiatrist received my blood test results yesterday and rang me back to discuss them with me.

Overall blood is functioning okay, as are organs in my body. However, there are a couple of 'concerns' (psychiatrist's terminology) in regards to an on-going potassium deficiency which might lead to complications when taking Lithium. For that he has advised I take a potassium supplement. The other concern is to do with my thyroid activity. It is the lowest end of 'healthy functioning'. This threw up 2 further concerns for him. Firstly, that Lithium can affect thyroid activity. Big hmmm! Secondly, it is an indicator that I am peri menopausal.

Whilst we were on that subject, I broached a conversation I had had, a week previously, with a nurse (having rung NHS Direct about my continual use of migraine wafer thingy). That was the main reason I rang but the nurse (who was male) said that because the migraines seem to be clustering around my period, I could be peri menopausal and it was something that I should discuss with my GP. The psychiatrist was in full agreement and said it is quite likely that I am peri menopausal and there is a simple blood test that the GP can do to find that out.

Now, many moons ago, I wrote a post on the Lifeboat about my own view that I thought I had 'hormonal' probbies but when I went and spoke to the GP they pretty much pooh-pooh'd my suggestion and said there was no such test available.

It now seems there is and it isn't that complicated to carry out. I have to wonder at why the GP was so negative about it all. Is it that GP's consider hormone balance testing as hocus pocus? Or because I am officially a loony, any notion that I might understand anything about my physical being (changes to it) is deemed beyond me? Or it is a matter of finance?

Whatever, I think there is more than enough hocus pocus and skull duggery going on in the NHS already so won't be put off by some lame excuse of 'non relevance' and loony I may be but thick as the Minutes from a Trust Board meeting I am not. If it is the money, then I am prepared to pay for the test to be done. It is that important to me.

Not just because I would like to know for sure what is going on with my hormones..and in relation to thyroid activity and cluster migraines....but if the medics want me to try the Lithium then I need to be clear how much of what is going on is down to hormone activity and what the 'danger areas' are in regards to my physical state when I go on it.

At this point in time, Lithium (although quite possibly the most tried and tested of all mood stabilisers) is not looking like a good option for me.

Granted, I can take potassium supplemens and Thyroxin if the thyroid gets weaker but to start on a medication apt to mess about with salt levels and thyroids, with things not particularly okay, doesn't bode well.

Seeing GP tomorrow, so will discuss all the angles then.

I did speak to my care co-ordinator about it yesterday and.... in spite of the fact that she had rung me and told me I wasn't answering the door (when she was actually knocking at a house 4 doors down from where I live) and me having to walk up my road to stop her driving away.....was rather worried about me taking Lithium and wondered if there wasn't a more suitable alternative for me.

She said she had been to a conference, about Abilify, and set up by the company reps and the professor there was waxing lyrical about the wonders of Abilify in treating Bipolar. Having tried the drug last year (without positive outcomes) am not inclined to try it again. Whatever the professor said, any conference paid for by drug companies has to be biased....Well, I think so.

So, tomorrow could be quite an important day. It could be a day where I do get the okay for hormone level blood testing. If not, I will have to seek further guidance on that. Depending on that and discussions around supplements, thyroid activity and how closely my blood is going to be monitored along the way, depends on whether or not I agree to take Lithium, although I might actually put myself on a potassium supplement anyway.

And it could be time to buy another T Shirt. "I MAY ONLY BE PERI MENOPAUSAL BUT I STILL BITE LIKE A BANSHEE"

Over medication in care homes during the 70's and 80's.

From Virgin Media News

Ten girls who were heavily sedated while living at a care home during the 1970s and 1980s went on to have children with a range of birth defects, a BBC investigation has revealed.

As teenagers at the Church of England-run Kendall House home in Gravesend, Kent, the 10 were restrained with huge doses of tranquillisers and other drugs, according to Radio 4's Today programme.

It is feared hundreds of other girls who were in UK care homes during the same period and suffered the same mistreatment may also be at risk of having children with birth defects.

In a statement issued through the Church of England, the Diocese of Rochester told the programme it was unable to discuss individual circumstances for legal reasons but would co-operate with any future inquiry.

"However, if the police, social services or appropriate legal body initiates an investigation, the Diocese will co-operate fully with them," the statement said.

"It would be inappropriate for the Diocese to initiate any internal inquiries since we are not qualified to do this. In any event, it would be essential for any investigation to be conducted both professionally and impartially."

According to files from Kendall House, which is no longer a children's home, girls were given massive doses of a number of drugs over long periods of time.

Former resident Teresa Cooper's three children all have birth defects. Her eldest son was born with respiratory difficulties, her second son is blind and has learning difficulties, and her daughter was born with a cleft palate and a short lower jaw.

Ms Cooper, who left the home in 1984 at 16, was given medication at least 1,248 times over a 32-month period. This included three major tranquillisers, drugs to counter side-effects and anti-depressants, including up to 10 times the current recommended dose of Valium.

Nine other former residents of Kendall House, who all underwent similar drugging, have also gone on to have children with a range of birth defects, including brain tumours, learning difficulties and cleft palate, the BBC reported

Gotta hope, with a certain amount of scepticism around modern monitoring processes, that things have changed for the better. Ho hum!

The Art of Compromise and where Love fits in (a ramble)

This has been prompted by Panic Room's posting.

Alot of the time, for me, Love is just a four letter word. Vastly over-used and too complicated for me. Sure I hanker for something pure and heart filling (with plenty of fluffy fluffy) but it has never worked out that way.

Being of old enough years to have experienced the highs (but mostly the lows of affairs of the heart)and more so dealing with the demise of 2 of the people who are part of my core, I can say, with enough experience, that love comes at a very high price. It is tested to the max...to breaking point...but it does still prevail in some perverse way.

I think love is, fundamentally, a very selfish feeling. Certainly the search for it is in order to improve one's state of being...to fulfil of the self (through or with someone else). The best deal is when it is 2 way traffic with both people helping fulfil each other. To me that is Disney though. In practise it tends to be one person doing alot more giving than the other...or some very heavy compromise on both sides.

I can and do compromise but I often feel that I have been compromised too far and that is more down to me than anyone else. Either through feelings of insecurity or of trying to hold on to something (a dream), a relationship that has changed beyond recognition... even to try and hold on to someone who was dying (not easy when the biggest part of you knows they are dying).

That is not to say I don't believe in love. I do. Perhaps part of me is still sentimental and romantic (am still partial to a soppy film) although I think the reality is more to do with family history, bonds and duty.

What struck me about Panic Room's post was the need for some attention and affection ( a pretty basic human need), that was lacking. I can relate to that (but for different reasons). Dad (as only remaining parent) is very distant from me. Mostly not his fault. His illness has robbed me of any of the comfort I used to get from him. Actually, it has robbed me of most of anything remotely like a parent/daughter relationship.

I have had to compromise my way through a very different relationship. I now accept, although not without having to struggle with my own needs, that things will never be the same and that, for the most part of any interaction with him, I am playing 'mummy'. I am not up to it. I do the best I can for him but I cannot (either practically or emotionally) stay in Mother mode. Perhaps I should be able to but I can't.

The reason I have written this is because there are often some very serious unmet needs in us and that can lead us to dangerous liaisons/places trying to get those needs met. Not only have I done more damage to myself in that pursuit but am sure I have hurt others along the way.

At least I have got to the point where I see that in myself and although I now spend my time doing more damage limitation than anything else, for now, it is the best place to be. I have enough on my plate without CBT'ing myself into the emotional equivalent of the bionic woman.

Maybe there will be time...in the not too distant future...for me to be me for myself and for others to accept that (because it is easier for others to accept you when you accept yourself..or so they say).

All I can say is that hugs (the ones that are given without false/dubious purpose) are wonderful things and I am lucky to have someone who hugs me when it is most needed and vice versa. Well, actually not everytime it is most needed (cos I could do with alot of hugging) but enough!

The Underdogs Have Their Day

A much maligned and unjustly punished football team got their vengeance yesterday. In spite of being deducted 30 points at the start of the season (Thanks to some b'stardy boardroom managers and an unfair system) they have fought hard and although it is still likely that they will be relegated out of the league they won the Johnstone's League Cup (the equivalent of FA cup for Leagues 1 and 2).

I listened to the match with Dad. It should have been put on one of the main tv channels (I don't subscribe to Sky Sports on grounds that I am only really interested in my home town and they are rarely given viewing space).

Was edge of seat stuff. Scunthorpe drawing first blood and my heart sank but I kept on yelling at the radio...cheering like I was there, for my town.

Luton rallied and got a goal back and in the second half, we scored first. The, slightly rough around the edges, dudey Tom Craddock. I thought it was all over. It wasn't yet!! With 4 minutes left before the final whistle Scunthorpe got a goal back.

I had to leave the room and let out a string of prophanities before returning to listen to the extra time commentary.

Mick Harford, who has done a pretty good job of keeping morale up this season, made a game winning decision because Scunthorpe had used all their subs and he had kept Luton's back (just in case). Clever bunny. Used to full effect in extra time as it was the Luton sub who scored the winning goal for us.

I don't remember being that excited about anything since the last time I was excited about anything (and i can't remember when that was).

I didn't listen to the post match, post mortum, cos Luton won and that is as good as it gets.

Emanuel was my man of the match cos he played a blinding defence game and I could tell, from the commentary, he was doing great work getting the ball back where it needed to be (out of Luton end of pitch).

And as I have wanted to do all season, I have stuck 2 fingers up at the FA and their suits (fekkin bourjois wankers that they are). Kick Luton when they are down but they come back and show what they are made of.......and if the team get relegated, they will be promoted again.

BRING ON THE TOWN!

So Did Darwin actually kill God then?

Have been avoiding tv alot lately. As someone who thinks that people only really need to see the news once a day (and for those who can't get enough of the stuff there is a channel dedicated to it)...and I really don't need news hourly or regular updates throughout my viewing (particularly as the last few months have revolved around the demise and death of a reality tv celeb). I never had anything against Ms Goody, but I didn't need daily updates on whatever was going on there. Anyway, being mostly the depressive end of my illness of late, news stories are not likely to help any move to 'positive thinking'.

Is not just the news, being someone who is home alone alot...the tv could be a source of real entertainment and some education along the way. Mostly, it is not. Endless programmes about making money from your junk, cooking, cooking and more cooking, finding the ideal home, people being jilted at/or killed close to the alter in soaps and then there's the other extremes...exteme fishing, lorry driving, face lifting and the piece de resistance..an opportunity to become Paris Hilton's new bezzie mate (for as long as that series lasts).

Anyway..to the real plot. Yesterday afternoon brain was hammered by a combo of 4 days of migraines (wafer thingees being put to the real test) and then adding another layer of 'numbness in' after going to GPs for blood tests and and ECG. The nurse kindly told me my heart is still working. Hoorah!

Monged out on sofa and left the tv chattering away to itself but brain zoomed back in when the programme about Darwin came on. I understand there is a series. The question was Did Darwin Kill God? Well, am no expert but would assume the answer is no. The religeous people, I guess, would say God is bigger than any one man/woman/anything else and people seem to need their faith..be there a theory of evolution or not.

It was interesting..although it didn't throw up anything that new. The stories of certain people/groups were interesting or novel. Like the right wing Christian, in 1920's USA, who was also a socialist and viewed Darwin's theories as 'anti humanitarian'. Later, circa 1960, the right wing Christian backlash to what they saw as the crude and lascivious moral breakdown of society. This, so the presenter reckons, led to a new breed of Christian. The Creationists. Following Genesis to the letter and showing off a museum of waxwork humans and electronically activated dinosaurs, living side by side. I kept thinking "Why isn't that dinosausar eating that human?". Would have made it a bit more life like to me!!!!

For some balance, the presenter (who was a Christian) went to see a Darwin fundamentalist. The least time of all spent with him and his view was that there is no such thing as intelligent design. It boils down to a selfish instinct to procreate. I can dig that...in its simplicity (particularly as I find alot of things very complex)... but I am not sure that is what Darwin's view was.

I understand Darwin lost his faith when his daughter died. Not surprising that. A relationship with 'the divine' is usually challenged by seeing and experiencing the ultimate suffering in life. Then again some people see 'the divine' as the only way through it and beyond death. Fair enough.

I haven't got enough faith, or evidence, to have a totally pro or anti (some super power out there) view but is more interesting to see how other people and groups have to have absolutes. Even if those absolutes come across as'iffy' to me.

What I can say is that I think Darwin did some awesome work, tracking and monitoring how animals mutated to survive. Not sure humans will be able to put any of that into practise in time to save the world (particularly as it is more about adapting our behaviour in a way we are not used to). Cue debate as to whether other animals are more intelligent because they have had the capacity to change.....or whether our 'selfish gene' keeps malfunctioning.

Anyway, whose to say that if human existance ends on this planet other life forms will? I do not believe the world needs humans to have a bio-balance that works. You only have to look back at the dinosaurs for that..and the world carried on nicely, thank you very much, after they disappeared.


Blimey, that programme got the grey cells working. In spite of all the hammerings. There is some semblance of intelligent life rattling around in me. Well sometimes!!!!!