Why did Ian Shaw not get the healthcare he needed?

Ian Shaw is a 34-year-old man who has autism and doesn’t use words to communicate.

Ian spent 9 years in secure hospitals before moving back into the community last year. His mum believed that ‘the secure units were the wrong places’ but they found it very difficult to get him out.

After he came out of hospital Ian was diagnosed with cancer and by this time it was too late to treat it. His parents had raised concerns about his health whilst he was in the hospitals but they were ignored.

We would encourage everyone to watch this video from BBC news. It is difficult but important to watch.

Ian Shaw was in a hospital for 9 years. It is inconceivable that he did not get the health care he needed despite being in hospital for so long.

People with learning disabilities already suffer health inequalities and do not always get the treatment they need from the NHS. Everybody with a learning disability should be getting screening for cancer, especially when people can’t communicate pain or discomfort easily.

Sir Stephen Bubb has told Theresa May that she should appoint a commissioner for learning disabled people’s rights.

LDE thinks that a learning disability commissioner could work if they have real power to change things and can hold local and central government to account, as well as other organisations that support people with learning disabilities.

We know that things can change for the better when you bring self-advocates, families and professionals together so we would want to see this in any leadership role/s the government introduces.

Our thoughts are with Ian, his parents, and all his family and friends.

Jenny Carter, a self-advocate and lifetime member of LDE, said:

“What happened to Ian is totally unacceptable – our physical health is just as important as our mental health.  Listen to my concerns, my pain. I have to rely on the people who look after me to help me to stay well and notice I have cancer.  Listen to my parents’ concerns too.  If I show behavior that challengers there is normally something wrong and that shouldn’t be managed by over medicating me.”

Vicki Raphael, a member of LDE’s Steering Group, said:

“Ian Shaw’s story is heartbreaking. It also makes me feel angry and frustrated.

As a mother of a young man who has complex learning disabilities and does not use words to communicate, I need to be able to trust services and supporters to understand and respond too his health needs in a timely way.

Our family supported my son through a diagnosis of testicular cancer 10 years ago. A close partnership between GP, a circle of support and family ensured prompt treatment, follow up and good recovery.

We should expect no less for everyone who has a learning disability. Not just good, sensitive preventative care but also a voice and some accountability when needs are not met and tragic circumstances ensue.”