Hafal's large-scale conference last week gave us a chance to step back from the immediate campaigning concerns (about Measure regulations and the like) and consider the wider priorities of our mass membership. 200 attended the conference and we held forums for both clients and carers which, together with much informal networking, will help to guide Hafal’s campaigning up to the Assembly elections in May 2011 and beyond.
Distilling all that we heard I have identified 5 big themes, all overlapping and interconnected...
(1) Let’s call this one the “respect and rights” agenda. Clients are plain angry and fed up with disrespectful services which say “You’ve got such–and–such illness and this is the medicine you need to take. Oh, and here’s some desultory drop-in you can go to if you feel like it". Dress it up how you will this is still a typical experience of many mental health patients. No holistic approach, no mention of recovery, no empowerment offered, no choice. There is growing realisation that, whatever we do to improve the sensitivity of services to the needs of clients, in reality there will never be a first-class service until clients take control over their own recovery - by which we mean not just being consulted but making decisions about the use of funds available for their health and social care. Of course respect also means not facing discrimination and we need to help clients and families to achieve equality and fair play from the community at large.
(2) Protection of resources for mental health services. Until clients do have the control they need over resources they remain beholden to global NHS and social care budgets and we need to understand and influence those. At present a shaky ring-fence is supposed to protect NHS mental health funding but everywhere we go NHS insiders talk of the limitless "discretion" of LHB finance departments to assign costs as they see fit when reporting on expenditure. Further, some LHBs seem to be snaffling savings made from Continuing Health Care funding as if this wasn’t a part of the mental health budget. Ring fences aren't a great way to manage resources but it’s almost all we’ve got for now so Hafal must help clients and families fight back and support mental health managers to get the resources they need.
(3) Though it links to (1) and (2) above you can’t not have a priority theme about people struggling is the murkiest depths of mental health services, in particular in-patients and those enmeshed in the criminal justice system (especially those in prison who should be in hospital). The public would be amazed if they knew more about the experience of people in hospital – not only the lack of care, especially the minimal personal contact with staff let alone access to talking therapies, but the fear and real danger of neglect and abuse. For prisoners with a serious mental illness the position is dire: it beggars belief that the most vulnerable patients with florid psychotic symptoms and in a desperate state can be left to deteriorate and face real danger in an environment which is almost calculated to make people worse not better.
(4) Benefits are high on the list of concerns for both clients and families. The changes made by the last government and those planned now by the new government are both objects of considerable suspicion and fear. In theory those genuinely unable to work should be protected but Hafal knows otherwise - mistakes are being made and vulnerable people exposed to anxieties which can severely damage their health. It is hard to deny that the remarkable increase over a generation in the number of people assessed as unable to work through disability needed to be challenged (as both governments have agreed) but the targeted decrease in that number is so very bold. Can we believe that the right decisions will be made?
(5) Carers and families continue to get a bad deal for themselves and this results in a bad deal for clients and for the rest of us – because supporting and training families to do a good job (where it is fair to ask them to do so ) can help clients get better quicker and conserve precious resources. Some of the right noises are made by the Welsh Assembly Government but we are a long way from integrating families into the care planning process and respecting them properly for their essential input. The Carers Measure shows willing but actually offers little beyond a right to information.
In the next few weeks Hafal will be putting together its campaigning strategy for next year. No doubt we will address the issues set out above but my sense is that to do justice to the mood of our members we should not just be making demands of mental health services but inviting patients and families to take matters into their own more capable hands - not perhaps by storming the hospitals Bastille-style (happy thought!) but, to give some examples, by exploiting new rights under the Measure to take control of their recovery plans, by seeking Direct Payments, by exercising their right to change care providers, by expanding the range of services which can be managed by client-led organisations, by taking up appointments to management groups or indeed LHBs, by taking legal action on inadequate services and discrimination, etc. The old saying about inmates "taking over the asylum" (suggested to us recently as an edgy slogan - I like it) does not describe such a bad policy...
