Communities which really care – guest blog

I’m very grateful to Paul Jenkins (@PaulJRethink), CEO of Rethink Mental Illness for this blog about visiting Geel which was the birthplace of Shared Lives –  600 years ago! You can sponsor Paul’s ride here. Paul writes:

Last month I cycled round Belgium to raise money for Rethink Mental Illness.  A highlight of my journey was a pilgrimage to the town Geel.  For those, like me, who have studied the history of the care and treatment of people with mental health problems this is a very special place.

In the Middle Ages Geel and its church dedicated to the Irish saint St Dymphna became a centre of pilgrimage for those afflicted by mental illness.  St Dymphna, according to the story was killed by her own father tortured by the symptoms of his own mental illness.

From this an incredible system of support for people with mental illness evolved with those affected boarded out with families in the town.  This was originally facilitated by the church but by the 18^th century placements were arranged directly.  At its peak, just before the Second World War, nearly 4000 individuals were placed in this way.  Even today there are 500 individuals placed.

Others tried to imitate the model at Geel but, in general, without success.  Now across Europe the old asylums have closed and community care is the established system of support but where are the communities which have embraced people with mental illness, without stigma in the way in which Geel has done?

It is interesting to see that there is beginning to some interest in looking again at the principles of support which Geel pioneered all those centuries ago.  I was excited to be briefed recently on the award winning Host Families scheme developed by Hertfordshire Partnership Trust, drawing on the Shared Lives model, where people experiencing crisis are offered a placement with a local family as an alternative to inpatient care, while also being provided with support from the Trust’s Crisis Assessment and Treatment Teams.  The Trust and service users see real benefits in support being provided in a family setting and where individuals can continue to take part in a daily routine. 

This approach clearly works for many other groups and offers a positive alternative to residential models of care.  There are already 10,000 Shared Lives carers across the country and the evidence is building that this model can not only better meet the needs of individuals but also be just as good as traditional models of care in meeting the quality standards laid down by CQC.  On top of that this model of care offers the potential for making significant savings.  

The reasons for why this approach might be attractive in the area of mental health are not rocket science.  Stigma and social isolation are some of the most devastating consequences of living with a mental illness and sadly some of the experiences which people have had of care in the community have done little to reduce either.  Family-based placements offer the chance to provide individuals, on either a short or long term basis, with the love, acceptance and routine which comes from being part of a family.  These can be remarkably powerful ingredients on the road to recovery.

Such an approach is not without challenges.  Placements need to be carefully selected so that they work for both parties.  There may be needs for training and support from clinical services so the carers are best able to help the person who is matched with them.  This will not be the best approach for everyone and the Shared Lives model needs to exist as part of a spectrum of provision, including hospital care for those for whom that is a necessary option.

Having said that, there seems to be significant potential to develop this model further in mental health.  We at Rethink Mental Illness are beginning to look at how we can develop this approach to offer short breaks to carers of people with severe and enduring mental illness.

Geel set an example which previous generations of mental health reformers admired.  Shared lives offers a chance to copy its example and build a model of care in which the community really cares.