Edel Harris
Royal Mencap Society was founded by families, to campaign for the support and inclusion of people with a learning disability within society, and we continue that mission today, as a campaigning organisation and as a provider of social care and housing to thousands of people with a learning disability across England, Wales and Northern Ireland.
Our work is all about people and there is one story in particular, about a man that Mencap has the privilege of supporting. that for me is indicative of the challenges all of us must address, and his life now is a good example of the destination we must strive to reach for everyone.
Stuey spent almost 10 years of his life living in various secure hospitals and units. He experienced seclusion. He describes the secure unit as ‘having a bad atmosphere’, with ‘a lot of fighting and aggression’. He told us that he felt scared most of the time and didn’t know who he could trust. He didn’t want to be there and didn’t feel good about himself or his life. 10 years of feeling frightened; 10 years of feeling isolated, feeling worthless and that his life wasn’t worth living.
In 2014 he moved to one of Mencap’s supported living services which has given him greater independence and he’s now planning to live on his own, with support available when he needs it. Stuey has a paid job with Mencap, working as an Inclusion Consultant. He has taken up a role as a co-chair of a local forum of disabled people, and has joined one of Mencap’s groups working on Positive Behaviour Support. Last year he won an award for his activism.
These successes have been achieved through Stuey, and Mencap, working in close partnership with the local forensic health and social work team.
Good, genuinely personalised care and support for people with a learning disability doesn’t have to be complicated.
Stuey’s story just goes to show that with the right support being available in the community, and with close collaborative working between health and social care services, people with a learning disability can flourish and live their lives to the full.
But what is the right support? Often this will involve a physical space – a good environment – a home the person can call their own. Many of those people still living in secure settings are there because there is not a positive housing solution available to them. We need our health and social care colleagues to be working far more closely and in a more strategic way with their counterparts in housing departments across the country. Homes can be designed and built where a homely environment is balanced nicely with the need for safety.
Since the Winterbourne View abuse scandal was exposed in 2011, Mencap has been campaigning for change, both to re-settle people like Stuey, who have spent years living in units - and to prevent further admissions.
Our vision is shared both by government, and by NHS England, but frustratingly this vision isn’t being delivered fast enough and over 2,000 children and adults remain locked away. We find ourselves, in March 2020, with the deadline looming for a 35% reduction of in-patient beds to have been closed, and yet still that target will be missed, and by a very significant margin, people trapped in unsuitable environments, often one that exacerbates the challenging nature of some of the behaviours we see. That the Secretary of State for Health and Social Care is having to account to the Equality and Human Rights Commission for this failure, is an indication of the profound seriousness of the situation and the extent of the human rights violations that are continuing to take place.
Six weeks into this new job and I have to say that I am deeply worried by the calls from some parts of the care sector for the CQC to relax its statutory guidance on the size of care services. We have not been through the closure of Long Stay Hospitals, the closure of NHS Campuses and the last near decade of work on closing in-patient settings, only to replicate them within our communities.
People with a learning disability, like all of us, have the right to live in an ordinary house on an ordinary street, with the highly skilled support teams they need to be safe.
The recent narrative around the post Brexit immigration plans which talk about an “unskilled” workforce made me really cross. But as tempting as it is to run through a social care equivalent of ‘There’s a hole in my bucket’ – a funding conversation right now misses the point.
The Government classified social care workers as unskilled – Unskilled? My colleagues are trusted every day with people’s lives! They are trained to provide medication, to undertake peg feeding, to deal with seizures and administer first aid. They help people manage their finances, their health, their wellbeing and they provide emotional support. They operate in a highly regulated sector and have to understand health and safety, mental capacity and deprivation of liberty law, safeguarding and often how to positively manage challenging behaviour.
After the Whorlton Hall abuse scandal, Mencap looks forward to seeing a cross-government plan on Transforming Care to deliver the long-promised change and we pray that any reference to the workforce does not continue to reinforce the low skill, low pay narrative. This is a convenient narrative when funding is tight.
People with a learning disability and/or autism must be at the heart of the Long Term Plan, addressing both the unacceptable use of in-patient settings, and the shocking levels of premature mortality.
The vision set out in NHS England’s ‘Building the Right Support’ strategy, its Service Model, and CQC’s Registering the Right Support policy make clear what we all want to see happen.
So let’s take this opportunity, to turn all these strategies and policies into action and maybe then we will be in a position to tell more stories like Stuey’s.