21 Windows, 22 Counties

Hafal Chair Elin Jones and Ceredigion manager Julian John (acting up as lead mechanic)

Our client-led campaign "Taking the Wheel", which is empowering people with a serious mental illness in Wales to take control of their lives and the services they receive, is storming the Royal Welsh Show this week.

The campaign features a rally around Wales in a classic VW microbus with 22 weekly events taking place from May to September, one in each of the 22 counties. We have already had a fantastic turnout at our stops in places such as Cardiff, Aberystwyth, Carmarthen and Caernarfon. It has really captured the public's imagination.

Visitors to the Royal Welsh are literally taking the wheel as they race in a camper van rally simulator. The campaign camper itself - a 1964, 21-window Samba sourced from Colorado and fully reconditioned with authentic parts - has already gained a huge amount of attention on its travels and is a terrific draw for the tens of thousands attending Wales' premier show.

The campaign, which runs until September, is engaging people receiving secondary mental health services or who have serious mental illnesses such as schizophrenia, bipolar disorder and other diagnoses which typically require high levels of care. Service-user led organisations Hafal and MDF the Bipolar Organisation Cymru are working in partnership with the Mental Health Foundation to support the campaign which will empower people with serious mental illness to:

- Take the driving seat in managing their own recovery from serious mental illness

- Make use of their new rights under the Mental Health (Wales) Measure

- Make choices about the care and treatment they receive - and who provides them

- Develop and manage services themselves

- Engage with the providers of mental health services so that they can get involved in planning and commissioning mental health services

A word from our partners...

Sue Wigmore, Manager, MDF The Bipolar Organisation Cymru says: "MDF Bipolar is very excited to join forces on this user-led campaign which brings together the two mass membership organisations for patients with a serious mental illness in Wales, Hafal and MDF The Bipolar Organisation Cymru, along with our friends in the Foundation."

David Crepaz-Keay, Mental Health Foundation, says: "We are very pleased to be involved because we recognise how important it is that people with a serious mental illness take action to help themselves. We are delighted to support the campaign along with Hafal and MDF The Bipolar Organisation Cymru."

Constantinople?

My PC went on strike early last week (the chips got "chippy") but industrial relations have now been reestablished so I can catch up...

The "Taking the Wheel" campaign reached Gwynedd last week as the microbus and simulator van rolled up to lay siege to Caernarfon Castle. Hafal's Practice Leader Lesley Jones said: "We've had a good discussion on how people with a serious mental illness can take control of their lives." Some comments from clients who attended:-

"The most important factor in my recovery has been gaining independent housing. It has meant that I have been able to leave my parents' house and have more time for myself. I moved in just before Christmas. It's the first time I‘ve lived on my own since I was in college. I've learnt new housekeeping skills and I'm really enjoying it"

"The most empowering thing for me has been the friendship I have gained at Hafal's service. The feeling of community has saved my life a few times. Stigma and isolation have been a problem for me. Listening to and talking to the staff and meeting service users have helped me a lot"

"Learning IT and photography has helped me believe that I have the ability to do things I never thought I'd be able to do again"



Postscript:

Everybody is familiar with Edward I's most formidable castle in Wales. Its design - in particular the hexagonal walls and sandwiched layers of coloured stone - made a clear nod towards the legendary walls of Constantinople (previously Byzantium, latterly Istanbul). Respect is implied to the locals that keeping them in order required defences similar to those employed to defend the greatest city of the Middle Ages and the final flourishing of the Roman Empire whose walls were only finally breached in 1453 by the Ottomans - over 100 years after the Welsh castle was completed.

Elegiac

After a vigorous session on the running machine plus a less punishing swim in the unexpected sunshine I walk stiffly up to the ruins of Dryslwyn Castle.

There isn't much left of what was the most complex native-built castle in Wales. It was lost to the English in 1287 as a result of an unwise uprising by Rhys ap Maredudd which brought 11,000 of Edward I's troops down on him, though like many others the castle was taken by Glyndŵr over 100 years later and became a centre of his operations in South Wales for a while.

Today in warm sun the setting is lush and picturesque with stunning views east and west along the Towy Valley. I have also frequently climbed up here in winter when this is a gloomy and windswept spot, its crumbling remains an elegy to the ancient princedom of Deheubarth.



Standing on top of the ruins I also contemplate elegiacally the demise of the fairly ancient "News of the World", surely a great shame and completely out of proportion to the recent intrusions into people's lives (did anybody seriously imagine this didn't go on?).

We are moving into a period of oppression of press freedom to the delight of the rich and powerful and apparently with our acquiescence if not support. We should be careful. Press freedom should be preserved even at the risk of some distasteful activities by journalists. In fact the phone-hacking and alleged bribery of the police are already crimes - you don't need changes in regulations to deal with these matters.

We have recently found ourselves in the extraordinary position, as a consequence of rich and sometimes most unsavoury people using injunctions based on "rights to privacy" under European law, where it can be unlawful to tell the truth even though your information has been acquired legally. It isn't a defence to point out that the information might concern, for example, a powerful person routinely using prostitutes - people who are often seriously vulnerable owing to addiction to drugs, mental illness, control by violent pimps, or even people-trafficking (don't believe all that salacious bunk about posh tarts in control like "Belle de Jour").

With that sort of scandalous suppression of truth already going on are we seriously contemplating further protection of the "privacy" of politicians, rich celebrities and tycoons? Well, regardless of what we think, they are.



Postscript:

Lest you think me a tad prudish be assured that I'm not much bothered by less reprehensible, routine naughtiness, though I still don't think you need laws against publishing it. The late Alan Clark knew that the press couldn't hurt you (unless you'd done something really wicked) if you just laughed it off. He breezily survived this startling but entirely true revelation, for example...

Fearsome

The microbus continues the North Wales leg of its mighty 22 county odyssey, rolling up today at the Deeside Leisure Centre, Flintshire, along with our VW camper racing simulator which is so fearsome that it requires the Fire Brigade to stand by in case of emergency...



Hafal’s Family Liaison Co-ordinator Janet Fletcher reports that there was a good discussion on how carers can take control of their lives.

One carer who attended the event said: “Being a carer is extremely stressful and lonely at times. Having the opportunity to meet other carers at Hafal projects has enabled me to pursue different interests and develop new skills. It has given me the confidence to complete educational courses which broaden my horizons.

“Because of the training I have received, I now have the confidence to be fully involved with planning future services. I am now more aware of the influence my opinions have on service planners; one way I feel empowered is when I voice my views at carers’ strategy meetings.”

Janet added: “Carers are key supporters of the people they care for, people with a serious mental illness, as they work towards recovery.

“Hafal helped 1,400 mental health carers in Wales last year."

See Hafal's advice for carers here.

Great to see the Rt Hon David Hanson MP, a good friend of Hafal in North Wales, engaging enthusiastically with the simulator...

Defiance

Now an established fixture Hafal's Physical Health Awareness Day (universally known as "The Sports Day") has been an outstanding success with 250 attending the event at Neath Sports Centre today compared to last year's record-breaking 150. Once again we were especially delighted to welcome a large contingent of participants from three hospitals who enjoyed their active day out.

This partly reflects Hafal's recent spurt of growth in services but also the growing optimism of our clients who increasingly challenge the stereotyping of people with a serious mental illness as passive and sedentary.

You can still find people who should know better - including mental health professionals - saying things like "There's no point in trying to persuade people with schizophrenia to stop smoking - it's the least of their worries!" etc. It's that stereotyping which leads to people with a serious mental illness having a life expectancy 10 or 20 years below the average.

Fortunately many patients know that it is in their power to defy those glum statistics and enjoy life more in their defiance through anything from gentle walking through to five-a-side soccer.

You have nothing to lose except perhaps a little of your dignity as Hafal Chair Elin Jones sportingly illustrates...

Could Do Better

No great surprises in the Wales Audit Office's "school report" on mental health services in Wales released today (see here for the full report). "Could do better" is the predictable message.

The recommendations in the report are fair enough as far as they go but they don't recognise sufficiently that the "only show in town" for making decisive progress in mental health services is the Mental Health Measure. This has the potential to give much better focus not only on individuals' pathways to recovery but also on the planning and commissioning of mental health services generally.

In a nutshell around 80% of mental health resources are presently spent - and will continue to need to be spent - on secondary mental health services. The Measure means that all the patients receiving secondary services will have a standard-format Care and Treament Plan setting out their goals and the services required to achieve them, whether those services are a £300,000 a year high secure bed or a £3,000 a year, light-touch, community-based or peripatetic service.

Now if I was an LHB Director of Finance (or local authority equivalent) I'd be demanding that all spending on secondary mental health services must in future be justified squarely - and exclusively - on delivering those Care and Treatment Plans. On what other basis could any spending be justified? In saying this the DoF would have the support of patients who are fed up with being told "These are the services we provide - we must see how we fit you into them". The money should follow patients' Plans not the other way round.

My impression is that services have so far not sufficiently grasped the legal duty coming their way next year to negotiate the new Plans with individual patients. Still less have senior planners worked out the great opportunity which the Measure offers for them to focus secondary services efficiently and systematically where they are needed.

The Measure can truly be "win-win" for patients, their families, practitioners and senior planners but that will require getting on the front foot, not waiting for the legal duties to roll over them and then whinging about "additional workloads".

For our part Hafal means to help patients and their families to get on the front foot, embrace the Measure, and help the people helping them to make the most of the great opportunities which the Measure presents. The Welsh Government needs to awaken the NHS and social services not just to their new duties but also to those wider opportunities.

The other clear message from the report is that the evidence for protection of mental health resources through the "ring fence" isn't really there. We badly need consistent and transparent audit of NHS spending - too much discretion and opportunities for obfuscation are accorded to the LHBs' finance departments: now that's an area where the Directors of Finance won't have the support and confidence of patients until they clean up their act!

Let's hope mental health services pay attention to the report...

Slippery Freudian

It is very hot but I have enjoyed my week's holiday. Walking, fishing, and cycling have been the pattern, though today my plan to do the British Heart Foundation bike ride in Swansea is thwarted as the event is axed owing to the tyre fire which is still burning in Fforestfach after three weeks. I suppose this cancellation was absolutely necessary.

So instead I wander up the Towy, slowly as the afternoon sun is quite oppressive, noting the familiar pair of swans who patrol the mouth of the Breinant tributary and, for the first time, a large number of eels (Anguilla anguilla), some 2 ft long, evidently on their way back to the Sargasso sea to spawn.

Actually nobody is quite sure what eels get up to over their life-cycle. Aristotle decided they must be a mutation of earthworms which themselves must have just sprung from the mud. Nobody seriously challenged the Greek polymath until two hundred years ago but there are still lots of unanswered questions about these curious fish (including "Why do people eat jellied eels?" - even Aristotle would have struggled with that one).

But there is no doubt that the common eel played an important - no, vital - role in the development of psychiatry. Sigmund Freud's very first project as a student was to dissect hundreds of eels in a search for their sexual organs. He never found them and so, in disgust, turned his attention to other matters, namely the treatment of neurosis, the study of the unconscious mind, etc. The rest is history.

You have to wonder if Freud's painstaking but fruitless search for the eels' private parts might have caused him to focus obsessively on these matters when he changed over to psychiatry - I mean as a sort of transference or compensation for his earlier failure? Consider this: if his early project had instead involved him looking for the eel's nose then we might today believe that smell rather than sex was the driver at the root of our unconscious mind (forgive the simplistic if not parodic exegesis of the great man's theories). Not a wholly outlandish possibility as the aroma of roast chicken stuffed with whole cloves of garlic wafts up from the kitchen. I'm on my way, unable to restrain my nasal urges.