Thursday, 22 March 2012

The personalisation agenda

In my review of the year 2010 in this blog I wrote about the crucial importance of the personalisation agenda.  Participants in twenty pilot schemes that took place around the UK have been video-documented  on the NMHDU (National Mental Health Development Unit) under personalisation stories.

The testimonies by service users, carers and family members are very powerful.  They provide formidable evidence of the effectiveness of direct payments for people who happen to have long-term mental health conditions.  Through these individual budgets, the evidence shows individuals getting back control of their lives and making their own choices.  A wide spectrum of individual progress is shown in the videos, with people accessing mainstream routes that lead to a much fuller participation in mainstream living. These pathways can include training, employment,  education, creative arts, volunteering and many others.

What the testimonies show is that the road back to any kind of mainstream life can be a long and demanding one.  Before major steps such as education, training and employment can take place there often need to be baby steps to support the process.  Baby steps which are effectively giant steps. With the help of her  care coordinator Stella wrote her own support plan based on the proposition 'what would you like to be different about your life?'.With Stella's clear plan, her care coordinator told her that 'yes, some of this may well be possible'.  As a result, Stella has progressed to far greater independence and confidence levels, managing her home life, using a computer and getting out and about on her new bicycle.  These small steps are testimony to how mainstream life and recovery can take place - with support, with a budget and by looking at the whole person and her individual choices and plans.

From the vantage point of 2011 and this year, it is clear that the personalisation agenda has pretty much been scrapped.  The enlightened key workers who helped enable this to  happen for service users are probably still able to continue the support.  For new service user applicants, it is unlikely that direct payments will be an option.  This may not be true in all parts of the UK, but from my experience it is unfortunately the case.  In many areas personalisation for mental health is completely misunderstood.

In the south London borough of Merton for example, direct payments for mental health service users has only happened in a few individual cases for people who were historically fortunate enough to have an enlightened key worker.

Contacing the direct payments' users group in Merton will shockingly reveal that the entire lobbying process revolves around individual budgets for people with physical needs.  The idea that direct payments can be used to enable independence and access to mainstream life for people with mental health needs is entirely off the radar.

In the meantime, new mental health applicants for incapacity benefit or its equivalent are routinely turned down and categorised as fit for work.  It's a game.  You get turned down and then you appeal where you may just as routinely get the the decision reversed.  Your file may have been sent on to any number of offices, often in other regions of the UK far from where you happen to reside.  Divide and rule.

What the personalisation stories show is that the journey back to mainstream activities has to be done holistically.  The road back to employment for example may take months and years in many cases.  It needs to start with small steps - participation in a creative activity, sport, exercise, I.T. training, volunteering, returning to a church, mosque or temple, meeting people, getting out and about.

The blunt instrument of assessing people with mental health conditions as fit or unfit for work would be funny if it wasn't so tragically grotesque.  As Christian testifies: sitting in the day centre for seventeen years meant that I had 'no interaction with the outside world.  I was so isolated'.  Like Della, Christian wrote down his goals which included things like 'going shopping on my own', 'studying maths' and 'doing cooking, ironing and cleaning'.  It took Christian around ten months to  get direct payments with the help and support of his mum.  As a result, he has a personal assistant Denise who is there to support with his road to independence.  At the time of filming, Christian felt that he had achieved more in the last two years than in the previous seventeen.

Individual  budgets for people with long-term mental health conditions does not always require the involvement of a personal assistant.  Many service users can access a mainstream activity of their own choice simply with the help of a bridge builder or someone who can signpost the individual to an appropriate mainstream venue.  As a bridge builder myself I have done it many times.  Often the client  only requires that initial introduction and then chooses to run with it him or herself.  The beauty of the direct mainstream approach is that it allows anyone who chooses to access their right to a niche in mainstream.  All service providers, whether commercial, retail, community or statutory-based, must under the law extend their contract of duty to everyone who wishes to access their services or products.  This most certainly includes people who may happen to have long-term mental health conditions.

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