When systems make life challenging – the responsibility of providers

Life can be complicated. It has its highs and lows prompted by things we can control and things we can’t. There are key times for most of us in our life that make things even more complicated – becoming an adult, leaving school, starting  work, leaving home and becoming independent – or staying at home and learning to live with your family as adults together. Relationship break ups and make ups, bereavement, job changes, becoming a parent and being responsible –and with that the full range of emotions – joy, sorrow, anger, acceptance, love…

If we know that life can be complex and ever changing and that all of us at times can find this challenging, why is it still so hard to accept that for people who have learning disabilities and autism, life with its changes, its ups and downs can often be even more challenging, more frightening?  Why is it still so hard to accept that when life doesn’t make sense for people who have learning disabilities and autism, the answer isn’t to remove their choice and control, the answer isn’t to remove any last feelings of safety, of love and of belonging.

Channel 4’s Dispatches programme “Under Lock and Key” on the 1st March, focused on what can happen to people and their families when life gets challenging. Despite the Transforming Care agenda, people with learning disabilities are still at times of acute distress finding themselves in hospital settings, sometimes hundreds of miles away from their loved ones, from all that is familiar to them. Their families  torn apart – siblings unable to see each other, parents in continuing anguish that their child is struggling and suffering.

There are countless people across the country trying to find the answer – health professionals, social care professionals, provider organisations, campaigning organisations, advocates and people and their families themselves. And yet, still there are thousands of people who remain locked up in hospital settings away from their home and family – often for years. So many young people who have lost years of their lives and for what?  As one relative in last nights programme said “She’s not a criminal, she’s a young person with autism”.

We don’t claim to have the answer – there isn’t one answer to anything in life. Instead, every day we are supporting people who at times can find life really challenging, who can find it difficult to understand what is happening to and around them and why; and every day we are learning with people about what  their answers are. What works for them and their family.

In supporting people who have experienced hospital admissions or at times in their life when they are at risk of hospital admission, we have become clear on our responsibilities as a provider of support:

  • We are never responsible to and for the person in isolation. Our support extends to their family. Too often, families have been let down, judged and even blamed for what they and their loved ones have been through. It is our responsibility to listen, to understand, to respect and to learn from families, to help them recover and re-establish their lives in ways that work for them.
  • People in our lives help us in different ways and it is all the more important that when life is challenging, we have the right people in our lives to help us through it. As a provider we work together with others – the best support, the right support is never provided alone. We work in partnership with others – starting with the person themselves and their family. In building a circle of support around them, it is our responsibility to build effective relationships so that we are collectively working together.
  • We are honest and truthful and in turn expect the same from those we work together with. This means being open and honest when we think clinicians or other professionals have not got things right. Equally, being open and honest when we as a provider need more support or indeed that we might not be the best organisation to support someone – that we might not have the right skills or people or capacity to serve the person in the way they need and deserve.
  • We have a responsibility, alongside people and families to speak up for and fight for what people want and need – most especially when what they want and need isn’t easy to achieve. We keep at the very heart of what we do, that everyone has the right to a good life.

Going forward, the challenge is in changing the system not people themselves.  If you are affected by any of the issues raised in the Dispatches programme “Under Lock and Key” or would like to talk to us about support options, please do get in touch.

Marianne Selby-Boothroyd, Director of Development


020 8772 6222