Cure Or No Cure

If you haven't seen it already take a look at Hafal Expert Patient Trainer Dave Smith's recent article in the Western Mail concerning finding a cure for mental illness (the on-line version can be read here).

Though it's his own view I for one don't have any quarrel with Dave's opinion on this important subject. But it is a matter which many are reluctant to discuss and I'd like to consider why. I think that there are a set of reasons as follows with my comments appended:

People are reluctant to raise people's hopes too much - yes, that is a fair consideration, but we must surely be brave enough to discuss the possibilities with people who have experience of mental illness and with their families. Apart from anything else the people doing the science need the active cooperation of patients for research purposes.

Mental illness has been around for years and yet nothing you could call a cure in clinical terms has been identified for the key mental illnesses - true, but then nobody expected the recent exponential advances in understanding genetics: as Dave says discovery of decisive genetic treatments is getting more and more credible.

Mental illness isn't just a question of genetics or brain chemistry ("nature") but also of life experiences ("nurture")so "cure" is an inappropriate term - there are a few hard-line exponents of antipsychiatry who think it's all nurture not nature but most of us are honest enough to acknowledge that we aren't sure but it's probably a mixture, varies a lot between illnesses and individual patients, and frankly we don't yet know enough about this. But it is surely right to look at the biochemistry for cure so long as we also give appropriate weight to the psychodynamic therapies which (and here I'm generalising quite a bit) best address the "life experiences" side of things.

Tricky stuff this both scientifically and politically but let's at least discuss it openly and not hide away in the cop-out which says recovery or cure isn't about real health gain but rather just some woolly ideas about coping and adjustment. Good for you, Dave.

Hedd, Perffaith Hedd

To my cousin-once-removed David's funeral out west today, preceded by lunch with my brother and cousin and his wife at Ultracomeda, a deli on Narberth's High Street with a little restaurant attached. The sardines cured in vinegar are very good. We are tentatively approached by other diners we've never met but who turn out to be attending the ceremony and we can share reminiscences from very different perspectives.

Funerals are obviously reminders of mortality but they also have that unique facility of bringing you back in contact in my case with relatives I haven't seen for over 25 years although I had knocked about with them in my teens - it doesn't seem so long ago but suddenly we are all much older! This accentuates the sensation of how fleeting life is but I do not myself find this unpleasant or alarming but rather curiously soothing - you can't really take life too seriously when you realise it's gone in a flash.

But, as Marvell said To His Coy Mistress (circa 1652),

...at my back I always hear
Time's wingèd chariot hurrying near;
And yonder all before us lie
Deserts of vast eternity

- and so you've got to get on with life while you've got the opportunity. This is often called a metaphysical poem but the writer clearly had his mind on the most physical of matters.




Postscript:

As you can see I have two new tom-cats who are so far nameless: any ideas welcome because it would be a shame if they were for ever to be known as the "little b*st*rds" (as in "Hoy there, stop tearing up the furniture you little b*st*rds!").

A Tale From 1796

Mary and Charles Lamb

Following my post on Edward Oxford (see here) Hafal's Gail Silver, who is presently moving on from the criminal justice team to join our Time to Change anti-stigma initiative, reminds me that there is another startling historical example of a more civilised attitude to mental illness compared to today...

Mary Lamb, who with her brother Charles published many works but is best known today for their Tales from Shakespeare which is still in print (a snip at £1.99), famously killed her mother while severely disturbed. The legal system in 1796 was not sophisticated about mental illness but it was anything but brutal or thoughtless in this case. Common sense won the day as it was swiftly concluded that Mary should not be punished because she was clearly seriously ill but it was determined reasonably enough that a proportionate degree of security needed to be put in place while she remained a risk. After she had spent three years in a small "madhouse" (not a place of punishment) Charles, who incidentally experienced serious mental illness himself, persuaded the authorities to place her in his care and he successfully supported her thereafter.

There is another point with a modern resonance in this story. Charles certainly paid a price as his sister's carer, sacrificing the potential for his own family life in order to look after her. Now you might hope that modern society would have done a better job for him but some carers today would doubt that as many still have to give up the most basic ambitions for life which the rest of us would see as a right.

Nobody is saying that things were generally better for people coping with mental illness in past times but these stories do give the lie to the idea that society in all respects becomes more caring or compassionate as time goes on. There is definitely an ugliness in our modern legal system which says that somebody must be made to suffer when tragedy strikes even when nobody, if the matter is looked at rationally, can fairly be held responsible.

And, let's be quite clear, this modern approach does not make anybody safer. On the contrary people with a mental illness are made more wary of seeking help if they believe they will be treated unfairly - and that increases risk.

The English Patient

Interesting bit of news today that the Royal College of Nursing has come out against the UK Coalition Government’s reforms of the English NHS (see the story here). It seems likely that this will not prevent the legislation proceeding and the changes are already substantially in hand - but it must be worrying for the Government that its plans are still unpopular with health professionals even after the legislation was substantially watered down last year. English Health Secretary Andrew Lansley (above) can't be sleeping very well and must be a candidate for the chop if the Prime Minister reshuffles.

It might be tempting for the Welsh Government to feel a bit smug about all this. In a sense the last Welsh Government went in the opposite direction to the prevailing English approach (which was certainly cross-party - the last UK Labour government was also very firmly committed to the same kind of reforms) by dismantling the last vestiges of the commissioner/provider split which never really got going in Wales both because the old LHBs were absurdly small and also because none of the successive devolved governments have really had their heart in that approach.

But there is a need for some hard thinking about this in Wales. Rightly or wrongly the prevailing model for public services in the EU and more widely in the Western democracies is moving away from top-down delivery and towards a flexible approach in which consumers can exercise significant choice and control. What is Wales’ answer to this? Can the Welsh NHS hold out with a mid 20th Century model as others develop a 21st Century model? I doubt it: we need to heed the winds of change.

However, that is not an argument for aping the changes being made in England where, arguably, the watering down of the legislation removed the opportunities for cost-efficient use of market forces but will still cause huge disruption. Further, the English plan does not really empower patients but rather GPs - and large groups of them not individual practices - so the idea that the GP can order up the English patient's choice of care package is not really a credible vision in the near future.

It would be good to see the Welsh Government open a conversation with consumers of health and social services about finding a Welsh solution to this matter - and I don't mean some kind of nebulous commitment to "listening to patients" which all governments have always pledged to do.

Interestingly the new mental health legislation in Wales could put consumers of mental health services in a good position to take more control. The universal, holistic Care and Treatment Plans which will be rolled out from June would make an excellent platform for giving patients control and choice over their care in the future.

We are a long way from handing control of the budget for delivery of those Plans to patients or their doctors or Care Coordinators (though people already have significant theoretical legal rights over their choice of social care) but in the shorter term it is vital that the NHS and local authorities start to use the Plans as the single means of justifying all secondary mental health services.

If you could match the funding to individual Plans (and I mean all the funding for secondary mental health services - about 80% of all mental health funding - not just some small change) then you would immediately have a transparent means of ensuring cost-efficiency and, in the future, you would have the means to hand over some control. However, I haven’t yet detected any sign of that kind of joined-up thinking - it's not really even on the agenda in Wales - so we’ll need to work hard to get the message across.

Horse Pills

Last chance to influence the Code of Practice for Parts 2 and 3 of the Mental Health Measure! Honestly this is more important than it sounds so follow this link and get an email off to the Government before Monday...

It's been a torrid week. On Monday my cat Dusty finally succumbed to old age and Blog Towers is consequently desolate without her friendly and reassuring presence. I particularly miss the way I could go about my business around the house and the cat did likewise without mutual interference - unlike a dog whose needy gaze follows you around intrusively. We will get a replacement soon, or more likely a pair.

Meanwhile, and possibly connected, I have been afflicted by gout in my big toe throughout the week. On this occasion the horse pills prescribed for it (a ferocious anti-inflammatory called Indomethacin) don't provide instant relief but I am banking on a peaceful weekend plus application of a bag of frozen peas (prescribed by Hafal Deputy Chief Exec Alun Thomas) to see it off.

I have previously remarked that the two epicentres for gout in the UK are affluent Surrey and somewhat less affluent Merthyr Tydfil. I have also recently read that the only other beast known to have suffered from gout apart from humans was the biggest Tyrannosaurus Rex ever found. She is called Sue and can be seen in the Natural History Museum in Chicago (picture below). Trust me, you really would not have wanted to run into her when her toe was playing up.

Zealous Newshounds

After a few days back in the office this seems a good moment to reflect on what the coming year holds for people with a serious mental illness and their families. Fortunately I don't need to work all that out for myself because those zealous newshounds of our very own Grub Street, aka Mental Health Wales, have done the work for me...

Clearly the biggest milestone of 2012 will be the implementation of the Mental Health (Wales) Measure. The Measure gives vital new rights to service users which could greatly enhance their opportunities for recovery. At the heart of the Measure is a significant new right for users of secondary mental health services to a comprehensive Care and Treatment Plan covering: accommodation; education and training; finance and money; medical and other forms of treatment, including psychological interventions; parenting or caring relationships; personal care and physical well-being; social, cultural and spiritual; and work and occupation. This means that service users will now have the opportunity to take a holistic approach to their recovery and set goals in all areas of their lives.

This key new right is backed up by new rights to advocacy for all in-patients, not just those subject to the Mental Health Act; a right for those discharged from services to reaccess services in a timely way; and by a requirement for Health and Social Services to agree a standard for services at primary care.

Mental Health Wales asks rhetorically whether mental health services will simply pay lip service to the new law or will there be a sea change in service delivery, with a new focus on delivering individuals’ care plans.

I don't know the answer to that but it's a fair guess that we won't see big changes if we sit back and see what happens. There are many skilled and committed managers in our mental health services but they won't be able to revolutionise services without the encouragement and active engagement of the consumers of those services. That's why the key mass membership consumer organisations Hafal and Bipolar UK (formerly MDF) are committed to working with our friends in the Mental Health Foundation on a campaign to promote positive delivery of the Measure. This will certainly be the major focus of our campaigning in 2012 - so watch this space!

Other key issues which Mental Health Wales has highlighted are...

· The Welsh Government will be consulting on its new Strategy for mental health early in the year.

· Claimants in receipt of Incapacity Benefit will continue to be migrated to the new Employment Support Allowance benefit – a process which began in spring 2011 and is due to be completed in 2014.

· "Time to Change", a three-year anti-discrimination campaign run in partnership by mental health charities Gofal, Hafal and Mind Cymru, will be launched.

· A study published in 2011 found that only 1 in 10 prisoners with psychosis are receiving treatment for their illnesses in prison, suggesting that the UK Government’s plans to divert people with mental health problems away from the criminal justice system are not working. We will have to get stuck into this worrying issue.



Postscript:

Driving to work this morning I gain a little insight into the psychology of the Prime Minister. In an interview on Radio 4 he is asked which actor he thinks might play him in a future film with the teasing suggestion of Malcolm McDowell reprising his role as Flashman. Cameron refers instead, and approvingly, to the obscure Lindsay Anderson film "If" (1968) in which McDowell plays a rebellious public schoolboy acting out a fantasy about machine-gunning the teaching staff and assorted big-wigs on Speech Day. In case you are worried about the mental stability of the PM you may be reassured to know that this is something which many or most public schoolboys have fantasised about.

Eloquent

Congratulations to Kyle Thomas at Hafal Swansea for his eloquent interview on young people's problems following publication of the Prince's Trust's Youth Index 2012.

See the ITV news item here and link to the report via Hafal's Young People's Information Hub here.