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Speaking up for people with learning disabilities and autism

John with his Leaders List Certificate

Each month we feature an inspirational individual or team who overcome barriers to make a real difference in their communities.  This month we see how John Keaveny, Expert by Experience at Certitude, uses his own personal experience to inform the training he delivers.

Over the last ten years John Keaveny has campaigned tirelessly to improve healthcare services for people with learning disabilities. He has Downs Syndrome and uses his personal experience to inform the training he delivers to healthcare professionals.

As recognition of his work, John has been named on the first ever Learning Disabilities and Autism Leaders List which was recently published by The Guardian. He was chosen from over 600 entries to be included in this register which celebrates people determined to bring about social change.

John and Rupa Huq MP

John’s drive to make a difference was born out of his own experience over ten years ago, when he collapsed at home and was rushed into hospital with breathing difficulties. He remained there for four weeks and found the experience difficult and confusing.

“When I was in hospital I felt that people working there made the mistake of thinking that I couldn’t understand what was being said or done,” explains John.  They talked about me, my health and my treatment without explaining to me what was happening. It was a horrible and frightening experience and afterwards I wanted to make sure no one else would have to put up with the same treatment.”

In 2008, John combined forces with Certitude – the social care organisation which provides his supported housing – to launch Treat Me Right! Working with Certitude’s experts in learning disability and autism training, Treat Me Right! was set up to train healthcare professionals to work with, and make reasonable adjustments for, people with learning disabilities and autism.

Treat Me Right! has opened doors for me to be able to reach out to healthcare professionals,’ says John. “I can use my personal experiences to show the challenges people with learning disabilities face – and to explain how things can be done differently.”

Over the last ten years John has trained thousands of doctors, surgeons, nurses, public health and community teams in learning disability and autism awareness. When he’s delivering training, John’s enthusiasm is infectious. Speaking from the heart, participants always remember his message which includes candid descriptions of his life growing up with a disability. Without exception, John’s insightful training receives excellent feedback as Irene Panther, a Clinical Nurse Manager in Ealing testifies:

“One of the things I found most useful when I attended the Treat Me Right! training was meeting John. He was able to make us understand the needs that people with learning disabilities have to face and it was really powerful for him to be amongst the team who were teaching us.”

In 2014 John was nominated for a National Learning Disability Award and last year the Treat Me Right! team were recommended for a NHS 70 Parliamentary Award. In the last few months John was invited to be part of an event at the Houses of Parliament to explain to MPs why learning disability and autism training for healthcare professionals should be mandatory.

Not only does John provide this training, but he also speaks about his work at local and national events, to ensure that his message is spread far and wide.

“I believe that every single person with a learning disability or autism deserves to live a long, happy and healthy life but at the moment people with learning disabilities die of preventable conditions so much earlier that the rest of the population. Treat Me Right! is making a difference but there is still a long way to go,” he says.

“I would like to see everyone who works in a healthcare setting – from security guards to consultants – to get training and that people with learning disabilities and autism should be given a greater say in their own treatment. We need more Easy Read information, more widespread use of Health Passports and for people with learning disabilities and autism to be involved in making decisions about the laws and NHS policies which might affect them.”

You can find out more about Treat Me Right! Training and how it might benefit you and your staff at









Edel Harris





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