Philosophy of The Big Society

David Cameron gets to be God!

Monday 29 June 2009

Making progress with the cards

This is the latest batch



Have had my first overseas order which, considering I don't have a website and big promo going on, is pretty good.

I still haven't heard back from the local festival organisers. I rang twice and asked if I could book a stall and was told someone would get back to me. Got a bit paranoid that it was a closed shop affair. You know the sort of event that revolves around a church community (If your name's not down you're not coming in). Will see. It could be a case of they haven't thought that far ahead but whatever....not going to get knickers in a twist over it. Their loss!!!!

Am going to stay with friends in Derbyshire soon and they have asked me to take a box of my cards with me because they have a market stall and want to sell them for me. I thought that was mega kind. Am a bit spooked that demands might outweigh my capacity to deliver (that is if people actually like the cards) but will cross that bridge when I come to it.

For now am happy to keep making them and access appropriate opportunities as and when.

Saturday 27 June 2009

Labrynthitis and the dizzy wizzy woo woos

Am now heading towards 3rd week with the Labrynthitis. Am really sussy about it...as in questioning whether it is Labrynthitis. Think my concern was prompted by total lack of concern or useful information provided me by GP. She said it was a case of a virus going when it goes and more or less putting up with it until such time as it does. Easy for her to say!!!

In attempt to try and get my head round (and then deal with) what it all means, I joined a network specifically for people with this and other vertigo related illnesses. It could, if I let it, make me more paranoid because there seems to be a variety of inner ear/neurological disorders that people have there. Some suffering similar symptoms to me.

I hadn't been associating my migraine attacks with the recent symptoms but there is a daily headache which veers (if not controlled by self medicating) into migraine territory. I know, I am dancing with the devil by using lorazepam as a cover all ailments drug but it works the best. Perhaps it causes rebound when it wears off but in the absence of (as is the usual case), it is my 'wooby blanket'.

It is the dizzyness that is the worst symptom of all. Worse than the swooshy liquidy feeling around my right ear, worse than the intermittent buzzing, the feelings that there is some heavy pressure that often makes it hard to concentrate or the threatening headaches because it is a bugger to negotiate around.

Bit of a swine really because I had been, sort of, making progress with agoraphobia. Had managed to walk to town a couple of times and was doing bi-daily, sometimes daily, walks to local shops. Now I feel that I am back to square one...not just because I am getting dizzy and that is restricting what I do but because there is no real timescale on when the Labrynthitis will abate. From reading other postings and information about other people's experiences it can take months or even years for things to settle. Something to do with the brain having to learn to compensate...readjust.

The concensus seems to be that if the symptoms haven't abated by week 8 then is time to go back to GP and ask for referral to a specialist clinic (where professionals help people to learn the art of retraining the brain). Is weird that...am laughing because my brain is definately beyond re-training when it comes to dealing with the bipolar. Or maybe it isn't so much beyond it but more a white flag waving part of me. HMMMM!

Actually for all my 'self victimisation' have been fighting back. I only give in and go to bed when the dizzyness is overpowering (room spinning continually). With the aid of friend, got to town to do some essentials and have been making cards. Even walked Dad to the shops midweek, although the stress of that bought on bad dizzy attack.

Good news to start wrapping this blog post up on is that Dad seems to be in a more positive state. Went round last night with Em and he asked me if he could come to mine and watch the Andy Murray match today. For sure. I will be watching it anyway...am really into Wimbledon even though Rafa isn't playing. Rafa is the don of the tennis court and a bit scummy. .... Also after I told him about the Age Concern ad in the local magazine, he spoke with his support worker and it looks like he is willing to get some support with walking about outside. Hopefully, that is because he has a desire to walk about outside.

My aim (either because dizzyness has eased or I have medicated myself beyond it) is to get to 'The Elvis Night' next Friday. Was never big on Elvis but I really could do with some fun.

Thursday 25 June 2009

Letter in the Guardian today

Simon Jenkins calls for a revival of the spirit of the left. We can begin it by changing the welfare reform bill which is completing the committee stage in the House of Lords. A small group of Independent and Liberal Democrat peers are trying to amend the legislation in order to protect people with severe mental illness. People with mental illness want to contribute to society and to have their dignity. We need a system in which people suffering fluctuating conditions are able to move in and out of work without fear of punishment or loss of income. It will require flexibility in a properly funded system, government support for employers, and it will mean an integration of non-coercive support, therapy and care for people with mental illness. Instead of the bill contributing to the problem of mental illness in Britain, it could become part of the solution.

Neal Lawson Compass, Caroline Lucas MEP, Jonathan Rutherford Middlesex University, Prof Ruth Lister Loughborough University, Jon Cruddas MP, Leanne Wood AM National Assembly for Wales, Oliver James, Sebastian Saville Release, Mark Thomas, Sam Tarry Young Labour, Frances Kelly and Rosemary O'Neill CarerWatch

Tuesday 23 June 2009

Frustrations around blogging

I deleted this blog and then restarted it. Wasn't exactly what I was aiming for.

I wanted to change it but so be it. Will be as is until such time as I can get the sort of blog I really want. Am working, at present, without success to develop a website purely for my cards. This is where I could do with some of that 'training for the mentally ill' (there's plenty of organisations funded with the remit of developing us into 'useful human beings')...a few focused hours my way wouldn't damage their budgets..surely? I really need some 1:1 support in website development inluding how to get paypal to work on it. Spent hours, last night, following the easy to use instructions .....hmmmm! So that is in pending file..pending whatever, whenever.

Have been following neuroskeptics blog. Is a fav. Tried to reply on there but ended up on someone's elses blog. DOH! Was my typical '"where's the fucking research to substantiate anything?' response. Can't be arsed to repost it there and the above statement covers nearly all of what I wrote anyway.

So many things are going on in the great outside. Too many to go into any depth about but have a couple of grouches (surprise, surprise) such as SO MUCH FOR THE REFORMING NEW BRUSH SPEAKER IN THE HOUSE OF COMMONS and £9 MILLION FOR THE RSB OVERLORD. Another case of all change and nothing changes at all!!!

Some bloke at the Guardian has written an article on Welfare Reform. Bless them for showing signs of empathy, the HO Lords and Lib Dems are trying to get a clause into the bill excempting the severely mentally ill from being herded off to the job centre and then penalised if they aren't actively seeking work. Wouldn't take bets on that clause being accepted...even in these 'Let's play spot the job' times. What we need is another £1 million pound anti stigma campaign that will make employers more willing and able to employ those of us with 'out there disabilities'.

For anyone interested, the outcomes of recent 'welfare reform' debates will be on Hansard from Friday night. Have been given this link http://www.parliament.uk/. Personally, I think that whatever the powers that be decide won't make much difference to employers' perspetives on the employablity of people with mental ilness nor will it affect people's capacity or incapacity. Still got to ask the question, Whatever happened to the 'flexible work' debate?

And so to some relatively good news. Awfully nice shrink doesn't want me to go on Lithium until Labrythnitis has subsided. He thinks it is best, that if and when I start it, I start it on a level playing field. Oh! for a level playing field. Certainly adding another layer into the physical effects of the virus (still questioning whether it is a virus or something else like Menieres...or hypochondriacal problem solving of something that will abate when my immune system feels up to the task to start kicking back)...never worked before so doubt it will now).

And if that was the good news better to end this blog post here!!!!

Sunday 21 June 2009

The jumble sale that is my brain and things being what they are

Slumping and thumping is too simplistic a term for where I am at but is close enough.

The infernal fight with the self/selves to make sense of it all (external and internal madness)...and to carry on living with it. Takes it out of a person. Namely me!!!!

I haven't been posting much because it takes such an effort and uses energy that is better used surviving.

The one shining moment in an otherwise frustrating week was going back to the zoo. Comparing that day to this, well I don't know how I managed it but it was an uppy day. I saw Azizah and her remaining offspring. Sadly, 2 of the baby elephants died recently due to a virus.

VIRUSES. All I have to write about them is ARRRRGH!

My heart lifted because they were playing together, locking trunks and Euan (her son) kept nudging her up to the BTM. Teasing her and they would then have another round of nudging and fussing each other. I was so pleased that their grief had been replaced by the joy of being together. Today, that is making me cry a bit because when I look at Dad and me there is no human equivalent of trunk locking. But, the brutal reality is things are what they are and although it hurts like hell, all I can do is try to live through this.

Anyway, there is too much grief and often I can no longer see it for what it is because am busy with the business of existing (sometimes never really sure why).

Another mega moment at the zoo was feeding the rhinos. That was a first for me and what a first. My friend has a friend who looks after them and I got to stroke them and feed them bananas (which they accepting with gusto). Was blown away by the fact that these powerful creatures were comfortable with me and vise versa. I know they are captive. Am not that muppety but still they didn't have to let me fuss them. The baby actually talked away to me in rhino talk. Think that translated to "Ere missus give us some more of them yummy yellow things".

So that was the highlight of my week.

The rest of it has been pretty grim. My new acting care co-ordinator wants me to focus on one thing ...a mini goal... to achieve. Totally get why she is doing it. I know target setting of old. Only every time I try to focus...I get a rush of too much of everything demanding attention. I am finding it impossible to focus on one thing that doesn't come attached to lots of other things. Ho hum.

The Labrynthitis (if that is what it actually is) is adding another layer of useless articles into the jumble and making lone trips to the shop difficult. Have managed it..just the once but was petrified. I can never tell when the dizzy spells are going to come but they are deffo much worse when stress levels are rising. Catch 22s abound.

Paranoia has also been prevalent. After the event...the event of tying myself up in conspiracy theory knots, I can see it for what it is but during...well during I have thought that a friend was trying to poison me, that government agency spies have been parked up the road monitoring me and checking my phone calls and that my father is doing what he does to deliberately drive me to kill myself because secretly he hates me so much. At one point I thought there was some master-plan with everyone involved to make my life so unbareable I couldn't carry on living BUT it is me. I just can't cope and I have to try. It is that simple and that complex.

The let out clause is going to see the extremely sympathetic (with hands tied behind his back) shrink tomorrow and accepting Lithium. Only it doesn't seem much of a let out clause to me. More another load of toxins to send what little of my brain isn't twisted into a heavily drunken state of detachment....my capacity to logic retracts whilst my midrif expands. Doesn't seem like a fair deal to me but I don't think there is one to be had. You take the meds and the side effects (and hope upon hope there are some positive ones in there) or you don't and carry on with the chaos that you know (which is apt to be your destruction anyway).

ending on some kind of pozzie. I checked my answerphone. Have been avoiding the phone (part of conspiracy theory) and got a message from ex care co-ordinator. A very honest description of how things are for her in her new job plus her wishes that my will keeps me going and that she was missing me. Missing me. Hmmm. I was touched by that. I am touched by anyone who shows something like real care or interest in me. Particulary as I struggle to find anything worth hanging onto in here.

Okay so it's a gloomy post (with intermittent sunny spells) but if i am going to write. Make the effort...it has to be about how it really is.

Oh there is another pozzie. The chap I knew from respite care who had gone missing, was found by the police in another county. Officials are putting it down to him not taking his medication. Yes, quite possibly and the fact that nobody was giving much of a stuff about him till he disappeared. He is safe for the time being and that is something.

And just because I am paranoid it doesn't mean there aren't iffy things going on . Orwell wasn't so far out when he wrote 1984. The public gets what it tolerates.

Saturday 20 June 2009

Sainsbury Centre for MH to lose its funding

The respected Sainsbury Centre for Mental Health is to cease working as an independent charity, after the Gatsby Charitable Foundation, which funds it, gave notice of its intention to wind down support.

The foundation, one of the charitable trusts set up by the Sainsbury supermarket family, will support the centre for the rest of this financial year to the tune of £2m, and will continue some backing for two years thereafter.

Leaders of the centre have told staff they should not expect it to remain in its present form after 2010. It is hoped the charity will merge with another organisation, aided by the rest of the Gatsby money.

The centre was set up in 1985 and quickly became a leading player in the mental-health sector, focusing on research, analysis and policy development.

In 2006, Gatsby cut its funding, and forced the centre to shed two-thirds of its staff and concentrate work on two areas affecting people with mental-health problems: employment issues and criminal justice. Now the foundation is withdrawing altogether.

The centre employs 20 core staff and a further 10 associates on contract. They have been assured their jobs are not at risk "in the near future".

Gatsby disclosed its intention after Angela Greatley, the centre's chief executive since 2004, announced she wished to retire later this year. The foundation told the centre it should not move to replace her.

Until the hoped-for merger, the centre will be run jointly by Bob Grove and Sean Duggan, who at present head up the two work streams.

Chris Foy, chair of the centre's trustees, said they and the directors would be "exploring new institutional arrangements and transitional financial support in order to safeguard the quality and impact of the core programmes".

News of the centre's plight comes just two months after another prominent mental health organisation, Mental Health Media, merged with the sector's leading charity, Mind.

guardian.co.uk © Guardian News and Media 2009

Saturday 13 June 2009

Good Friday

After a week in Never Never Land (not the nice kind either more the kind where it never gets any better) things shifted on Friday. I think the shift was more in me than anything else. I made a conscious decision to make the most of things and avoid hyping up my neurosis.

Having read that the medication prescribed me for symptoms of Labrythnitis was an anti psychotic I saw red. Do people know they are prescribed anti psychotics for other pyshical ailments? Maybe they don't care if they work....and I don't blame the locum doctor for prescribing the drug to me...because he wouldn't know I am bipolar or that my track record with anti psychotics is dismal...but certainly by Wednesday it was clear that it was adding another nasty layer into the proceedings. For sure it helped with the vertigo but it was twisting my mind at the same time. It really doesn't need any more twisting..ta muchly!

Anyway...I stopped taking it and my brain stopped feeling like it was on fire. The dizziness has returned but is sporadic. I can live with that.

And so to yesterday. My friend Hayley came round to make cards with me. She still has no car and isn't likely to get one so we do alternate weeks. Sometimes, I feel so poorly that just making the effort to not look and act poorly is too much. I hate that sense of performing. I know most people have to put on a performance through life..depending on where they are and who they are with but when it comes to illness and doing the 'smiley smiley Carol Smiley' act, I can't sustain.

I didn't have to....we had a good time. Music, food, easy chats and cutty outy bits. Might stick up piccies of the 4 cards I made later.

After that I was a bit tired so planned to have an hour's kip before Em turned up with her fella. She came earlier than expected but was fine. We went to Dad's, ordered a Chinese meal and played Scrabble. I saw glimpses of old Dad back. He made with the funnies and was like all 4 of us were actually on the same planet at the same time. Novel!

When they dropped me home, I really thought I could sleep for England and then suddenly I was wide awake. I contemplated doing a loz but decided to role with it. Ended up watching first night of the Isle of Wight Festival. It was okay...thankfully The Prodigy were the final act and they really left the best till last.

I had to take 3 quarters of a loz to sleep but have managed to cut back from 3 a day.

Compared to what Lareve is going through it really does make my pre-occupation with loz intake and need for assurance that i can take what I need when I need it rather lame....but everything is relative as in to where an individual is at. And I am at the point where I want to shout "Just give me the lozzies and stop trying to sell me other crap".

As a by line, I got the local magazine and a festival has been organised (with stalls) for September. Have contacted someone to see if I can have a stall for my cards. Oh and the new Jo Brand book arrived, so will be reading that in the garden later.

Thursday 11 June 2009

Palliative Psychopharmacology - The insider's take on it

Written by Bruce G Charlton - psychopharmacologist

Making people feel better,given the limitations of the psychiatric perspective and the fact that many psychological problems are chronic, it seems legitimate to develop specialist expertise in using psychopharmacology to make patients feel better. But the idea of a speciality focused on enhancing subjective psychological states is one that is prone to raise suspicions among the medical profession. Perhaps from fear of creating addiction and dependence, doctors often display a reflex aversion to drugs that make patients feel better. Indeed, doctors seem more comfortable when persuading patients to take treatment that makes them feel worse. The general feeling is that ‘medicine is nasty’, and patients should need heavy encouragement to take what is good for them. If someone actually *wants*to take a drug, the suspicion is that they are probably abusing it.

But the experience of palliative medicine demonstrates that such attitudes have probably been responsible for needless suffering. Fear of addiction to opiates often led to preventable agony. It may be assumed that something similar will apply to the relief of other unpleasant psychological symptoms.

Palliation does not, of course, imply that people should be encouraged to‘get high’ on drugs: there is a world of difference between crack cocaine and Prozac. Palliation is about removing painful or unpleasant symptoms, not about inducing euphoria. Drug misuse seeks chemical ecstasy, palliation aims to remove psychological obstacles to fulfilment. Palliative psychopharmacology would seek to make people feel better in the way that analgesics make people feel better [5]. Nobody would call paracetamol a 'happy pill', but it is easier to enjoy life without a headache than with one. In this sense, paracetamol makes a vast contribution to human well-being, quality of life and happiness. The same applies to the treatment
of psychological symptoms.

PP patientsA new speciality will arise only in response to demand, so we need to ask which groups of people might benefit from a palliative approach to using psychopharmacology. The answer, in a nutshell, is those patients in whom alleviation of unpleasant psychological symptoms is more important than control of disease or public safety.

Firstly, there are people with significant psychological symptoms such as
depression, anxiety, panic, phobias or insomnia but who fall outside psychiatric diagnostic categories. The subjective ‘significance’ of psychological symptoms and the decision to explore pharmacological treatments are matters for individual judgement. Even ‘mildly’ ill patients may nonetheless experience significantly impaired quality of life, and may benefit from treatment [6]. Such patients fall outside the current medical framework, and would typically be direct self-referrals.

Secondly, there are people who do fit within the prevailing psychiatric diagnostic categories but would prefer a quality of life-centred approach to their management. Psychiatric disease categories are expanding and multiplying all the time. There has been at least a 1000 fold increase in the number of people diagnosed as suffering from depression over the past forty years [3], and since 1980 there have been many newly recognised psychological disease categories such as panic disorder, social phobia and most recently) female sexual dysfunction. Many people would fit one (or more) of these categories, but may nevertheless see themselves as suffering from unpleasant symptoms, rather than from formal ‘diseases’. For instance, the people who currently self-treat their own ‘depressive’ symptoms with St John’s Wort purchased from the pharmacist, rather than using a prescription of Prozac which comes only with the stigmatising diagnostic label of Major Depressive Disorder [3].

Thirdly, there are chronic psychiatric patients carrying diagnoses such as
schizophrenia, but in whom the public health considerations (such as violence and suicide risk) are minimal. Such people may be faced with long-term psychopharmacological treatment, and may prefer their management to be based on a principle of optimising the patient’s subjective well-being, rather than have this potentially confused with the conflicting duty to maximise public safety.

A fourth group might include people who seek to explore a range of potentially beneficial pharmacological interventions to alleviate ‘lifestyle’ problems such as sexual dysfunction, cognitive impairments (eg.poor memory or concentration), or the psychological problems of old age. In other words, this is the point at which palliative psychopharmacology overlaps with pharmacological ‘enhancement’ technologies, including the ‘smart drugs’. Given the under-developed state of knowledge in these areas, such management might be considered a form of expert-supervised self-experimentation.

Palliative psychopharmacologists, if they existed, would be specialists whose focus was the palliation of psychological symptoms, principally by psychopharmacological means but also using whatever other methods may be effective - perhaps cognitive-behavioural therapy, for instance. PPs would develop expertise in detailed history taking concerning subjective states (phenomenology), and would be knowledgeable about drugs and their side effects. This combination would be expected to generate a new kind of understanding of a currently neglected area concerning the psychological
effects of drugs - the question of ‘how drugs make you feel’.

If the patients subjective well being were to become the focus of management, this would imply that the patient must have a decisive role - since each patient is the unchallenged expert in their own state of well-being. Again there is an analogy with palliative medicine, in which one of the breakthroughs in the treatment of pain has been patient-controlled analgesia. In the end, the patient must be the arbiter of success or failure of a management strategy. The role of the physician is to inform, advise,and guard against potential disaster (eg. drug contraindications, dangerous
interactions, dependence and addiction).

When psychological palliation is the aim, it is likely that longer and more frequent consultations will be necessary than for psychiatry. It takes time to find the right drug for each person, even longer to find the minimum effective dose which offers the best balance of benefits to risk, and longer still to reach a judgement concerning the overall benefit versus harm.

The ultimate decision to be made is whether life is better on the drug, or off it. Establishing this with confidence may require several ‘on-off’ trials, using placebo controls when necessary.


Logistics Whether or not PP becomes a medical speciality depends on whether enough people want it to happen. But the logistics of getting a new medical speciality off the ground are complex. What seems to have happened in the past is that doctors with relevant training, experience and interest began to specialise in their practice, to advertise this specialisation (to colleagues, and the general public), and take referrals.

Once a critical mass of specialists has been attained, then such practitioners communicate and collaborate, have meetings, start journals, raise awareness, and set-up certificated training programs until eventually the process leads-up to formal ‘collegial’ recognition as a fully-fledged medical speciality. All this requires resources. In the case of PP supportive funding may come initially from patient fees, then charities and corporations, and eventually from the health service and health insurance payers.

Palliative psychopharmacology is an activity which is implicitly performed by many doctors already, especially in US private practice [9,10]. But specialisation has a considerable contribution to make. Specialist status would consolidate existing knowledge, contribute to scientific research and technical development, enable individuals to build-up and pass-on experience and expertise, stimulate broader education and serve as a focus for referral.

Currently, we have pharmacological experts to palliate death, but none to palliate life. It is time for that situation to change.

Waking up with my head on fire

I knew it was too good to be true. As in the Stemetil, which I am taking for Labrynthitis) was having a very positive effect on my mood.

Tuesday afternoon was pretty grim. What with the earache, dizziness and an ensuing migraine was heading in downward spiral but after taking combo of wafer thingy, stemetil and lozzie I picked up. Enough to get to the doctor's. She was okay..good even..but doctor's don't really understand mental illness. It is something quite alien and scary to them. Hell, it is often quite alien and too scary for me. Actually, it is more like a phantom that roams the corridors of my psyche and will suddenly and for no apparent reason take control of the helm.

Anyway, from Tuesday through till this morning I was starting to think that Stemetil might be a tablet that could help with some of my mental issues (states). I seemed to be on the up...the problem is, I kept going up and i could sense it getting to point where it would get out of hand.

Some might argue that was nothing at all to do with Stemetil but the cyclical nature of my illness. Fair comment but I don't know. I really don't.

All I do know is that I can't hack waking up at 4.30 (having had 4 hours sleep), feeling like my head is about to explode.

The only course of action, that made any bloody difference, to me was to take a whole lorazepam. The issue of tolerance is one of great concern for my GP. I understand her moral and ethical stance but she isn't on the receiving end of mental distress. She is an observer (educated to medical standards) who, and I sincerely hope so, will never have to be in the predicament I am in.

You know I have even toyed with the idea of buying Lorazepam over the internet. 1)to cut out all the guilt that I feel when I get the pep talks from medical experts 2) so that I can manage myself. Okay, so it is not in line with the self management courses being pumped out by the government or charities...but in the absence of (sanity that is achievable through usual means)...access to something that can get me through each day without 'exploding head' syndrome will do for me.

The problems, the only 2 I care about, in regards to buying lorazepam over the internet are that I might not get actual lorazepam and might be swallowing a combination of talcum and washing powder. Who can tell, when it is not done through 'official' channels and secondly...it means I am going to have to use my DLA on self medicating. Still everything has a price and it is a case of weighing things up till I get to a point where I can do what I have to do to survive...and not just survive but survive with some basic level of stability and deffo not by being monged out to the max on anti psychotics.

Is always a tight rope walk to find anything like a happy medium and much more like the tightrope is swinging trying to maintain that.

Ho hum!

Wednesday 10 June 2009

9 months overdue but better late than never

Am up late, so the following photos are bought to you courtesy of Stemetil (that warrants a blog post in it's own right... so will do that another day)

SOME NEW FOREST PONIES



MARGARET AND ME OUTSIDE A PUB



LYDLINGTON HIGH STREET



A TREE



ANOTHER PONY



OUR HOTEL (AS IN WE WOULD LIKE TO OWN IT)



MY NO 1 FAN (random photo from Yarmouth trip that snuck on the film)

Monday 8 June 2009

So much for democracy

I know, in a democracy you have to go with majority votes BUT not one UK Green politician in Europe. What is all that about? Particularly, now the BNP have 2.

What is that saying... "All it takes is for good people to do nothing for evil to prosper"?...well it is something like that.

I didn't expect much from these elections but I did expect something a bit more positive (outside of the historical ping pong voting between Labour and Tory).

Ah well, I did me bit. It equated to fekk all but I tried.

I bow to the majority, actually I don't because the majority stayed home and didn't bother voting at all. I bow to the minority that voted for the Tories but I am as disillusioned with the public as I am the politicians.

So it will be back to more of the same old same as....possibly some tweaking around with policies but not enough to change things for the better.

Will it stop me voting in future? No! In fact, I am more likely to vote as an act of defiance rather than anything else.

Here's one for the political status quo:

Thursday 4 June 2009

A New Set of PPeyes

http://www.ppeyes.org.uk/

Apart from it being great to have it back in action, anything that promotes 'Whistleblowing' is alright by me.

A Chance for Some Accountability..well maybe

This arrived in my inbox today:

Patient & Public Involvement in Health & Social Care

Health Minister confirms door is open to Public Inquiry following tragic Stafford Hospital deaths.

NALM today welcomed a promise by Health Minister Ben Bradshaw that the government is open to persuasion for a Public Inquiry into the tragic deaths, and grossly inadequate patient care, at Mid Stafford Foundation Hospital. The pledge made to a parliamentary Health Committee follows demands by distraught relatives, for a full investigation into the collapse of care and treatment at the Hospital.

But campaigners were stunned and shocked when MPs questioned Dr Peter Daggett, Consultant Physician from Mid-Staffordshire Foundation Hospital, who refused to apologise on behalf of doctors, for the appalling failures at Mid- Stafford Hospital. Dr Daggett responding to MP Sandra Gidley’s question replied: “the doctors have nothing to apologise for”. Dr Daggett also rejected reports from relatives and local campaigners from the ‘Cure the NHS’, of appalling and grossly inadequate care on Mid Stafford Hospital Wards.

Challenged on the culture of secrecy and poor complaints investigation at the hospital, Ben Bradshaw agreed that Foundation Hospital Board meeting should be held in public and agreed that the Hospital ‘completely failed to deal with complaints’.

Malcolm Alexander, Chair of NALM, said: “NALM welcomes the commitment by Minister Ben Bradshaw to look again at the demand by ‘Cure the NHS’ (patients and families campaign set up by those affected by failings at Stafford Hospital) for a full public inquiry. There were failures at Stafford Hospital at every level, the senior managers, the Board, nurses and doctors. The PCT and Monitor failed local people focussing on becoming a Foundation Trust instead of patients care. A public inquiry would unearth how the events at Stafford were allowed to happen and what must be done to prevent such tragedies from happening again. The public must have their confidence restored in the NHS.

The Government has systematically undermined public involvement in the NHS and must wake up to the consequence. Local Involvement Networks (LINks), the new public involvement watchdogs must be given real independence, sufficient resources and a commitment to a long term role in the NHS. Effective patient and public inspection and monitoring is essential to ensure safe health and social care services.”

Malcolm Alexander,
Chair, NALM


The statement that the government is open to persuasion in regards to a public inquiry is a bit lame. As in should anyone have to be persuaded?

Oh! For a new democracy in which public organisations (particularly those who manage them) have to be accountable to the public and YES I went and voted. I think it was more a protest vote than anything else because the party I would have liked to vote for didn't put forward candidates for the local elections. At least I got to vote for the party I really wanted to in the European elections.

My daughter voted for the first time too. Good on her!!!

Wednesday 3 June 2009

Personality Disorder Spectrum Survey

The UK wide Personality Disorder Spectrum Survey to capture what's happeningin the UK at various NHS Trust areas has been launched, and Mental Health Users are already inputing into it . Its a democratic service user's action

The exercise was inspired by PD and Borderline PD Mental Health Services Users after services have been seen to be failing people. It was felt this needed to be surveyed for how wide it might be happening and indeed where were the strong points for current service delivery as well as weak ones.

The survey was designed by Users after conversations and finally hosted on "Survey Monkey" which is a site for instance that PCT's have used to collect data . Its based on "indicative data capture" - so further work can follow - questions etc.

The link to the survey is below :

http://my.nowpublic.com/health/launch-users-personality-disorder-uk-survey-r-i-p-kate

The results we hope in a few months will be made publicly available -provided the input is significant and justifies work on a report stage

None of this exercise was entramelled in "process" - it was, and is simply part of proper us of democratic freedom and an exercise in responsibility .

At least two more underlying aims of the exercise is to raise Mental Health User-confidence in the internet model of data capture and create a sense of more direct patient and public liaision with bodies like the Care Quality Commission and National Association For LINks Members, as well as opening up the Online process of health democratics so patients and public can also start to own the right to measure the services and own the results too* .

The internet makes this possible .

The cost implications of all this have been* zero*, apart from voluntary input .

A survey method like this quite clearly can be duplicated and or re-formatted for data-capture in other ways for other types of health population.

That's is a point that must interest all .

Its not a pancea format but its a real tool and services users can develop it and gain expertise to create accountability


A promotion-launch film for the PD Spectrum survey was also hosted at YOUTUBE

http://www.youtube.com/watch?v=8bXko4NFieo


Paul Brian Tovey .

An Independent Mental Health Monitor

Monday 1 June 2009

Bit annoying being miceless. 3 days, No migraine - utterly priceless

Had decided to give the computer a break...mostly in attempt to cut as many aggrevations to migraine out as possible. My arm was forced more by the fact that my mouse went and died (RIP). It was a blessing because it meant I couldn't use computer and I most probably would have if I could (whatever resolution I made). I'm too damn contrary for my own good.

So's I haven't been about and it hasn't done me any harm. I have missed keeping up with people's blogs but it made me focus on other stuff.

Has been a good weekend for me. Headache was still loitering but I thought "Knickers to that, gotta keep on".

Friday night was first time I have felt anything more than foul for over a week. Em and her fella came over. Rob mowed my front lawn while I caught up on Em's goss. Then we went and got chips and took them to Dad's. We played a different version of Scrabble...the one where you can add words that sound like real words (whatever the spelling). Scrabble can be such a serious game and for someone like me (who bores easy) it can become a chore. Anyway, fun was had by all and even Dad joined in the spirit of the game. He's usually a stickler for rules.


Saturday, I was all ants in my pants. Got up feeling I had to do something but wasn't sure what. So I headed off to the garden with radio and book ('If You Could See Me Now' by Cecilia Ahern). Suki followed, not long after. I decided to do some DIY reflexology with a mix of almond oil and jasmine (I read somewhere that foot massages are good for migraine)...it certainly helped relax me.

I rang Dad and invited him round to watch the FA cup final at mine but he was 'having a lazy day'. Dr J turned up around 1 ish. I went and got some munchies in for the match and cake for the Sunday ritual. Match was okay. When Everton scored that was the highlight...for me. I wanted them to win but was not to be.

Dr J wanted to watch 'Britain's Got Talent' final. I agreed. Normally, he has to watch it On Demand when I have gone to bed but I wasn't bothered about watching it. I have got past the 'all these programmes should be sent to the dumpster' attitude. If people wanna watch it, then fair enough. I don't have to. There are other things to watch, listen to or do instead. I get quite pissed off by Matthew Wright on his programme. He constantly makes jibes about it and quotes "Just because something is popular it doesn't mean it's right".. I think as a quote it is fair enough (remember the Natzis) but he isn't the God of TV and people do have choices about what they watch (well, to a certain degree). Nothing on TV is compulsory viewing. anyway, I watched it with Dr J. It was okay-ish. I wasn't blown away by any of the finalists. I had a bit of a laugh at 'Stavros Flatley' but more because of the name and I thought 'Diversity' were the best act but not because the competition was that hot. They were good (even had some humour in their act) but I can't say I would want to watch them that much and then all the fuss was over and done and the insides of my tummy were still on the inside. Bonus and I didn't feel like an hour of my life had been robbed. :>) Can't remember much else of Saturday so will move on to Sunday.

I got up early and spent an hour reading my book and then got the washing on. Dr J arose around 10 ish and was watching a Sunday news programme. Our prime minister non elect was prattling on about the need to do something about the corruption in parliament. I thought "Erm yeah..good idea...like when are you actually going to start!" It hasn't become boring (it should never be a bore to know how corrupt our politicians are) but more a case of procrastination prevents change and leaves me wondering why we have a government at all right now. Actually, I think we have a government in name only.

So I did some channel hopping and found a Bob Marley concert via the On Demand menu. Am really liking the On Demand menu!!!!

Whilst the concert was on got ready and then we walked to town. Dr J was going to buy me a new mouse and we had planned a Chinese meal at one of the buffet restaurants.

It was blinding hot and after getting Dad's shopping and new (shiny shiny) mouse we were flaking so popped into the pub. I don't much like town pubs but was relieved to have an ice cold lemonade whilst Dr J knocked back a pint.

Was too hot for a Chinese meal...so we went to a cafe where we could sit outside. I had a feck off all day veggie breakfast and Dr J had sausages and mash....washed down with more cold drinks. Then we taxi'd. home.

Had a bit of a rest and then went round Dad's for cake and Scrabble. Dad was quite upbeat, which made up for me (I was pretty knackered out). I rallied and enjoyed the game but was glad to get home and doss out.

So that was my weekend and it went alot better than it could have and for that I am grateful (not sure to what or whom..simply grateful).