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Help in a crisis
James's story


 

NSFT works collaboratively and in partnership with service users who have a learning disability in order to learn from their expertise and lived experience about how services can be improved, a concept that was inconceivable as recently as 30 years ago. Below is a case study showing how service users help the Trust.

James Massey is an “expert by experience” who works closely with our Trust to help make improvements for patients with a learning disability.

And having spent 18 of his 38 years in a variety of hospitals, James, who has a diagnosis of learning disability and autism, has a wealth of experience to draw on and share.

Now living in supported accommodation in Lowestoft, he has for the past three years been a member of the Waveney Learning Disability Service Users and Carers Forum, and is its current Deputy Chair.

The Forum is an opportunity for service users to share their experiences, to be involved in the development of services and for healthcare professionals to seek views on topics like being in hospital or particular medications.

James, who cannot read well, is also a member of the Trust’s Easy Read Group. One of the projects he has been involved in is producing an Easy Read reminder card for service users to bring along to consultant appointments.

“Learning disability nurses are important because they believe in you and help you speak up, loud,” he said.

Sue Medley, Learning Disabilities Specialist Nurse, said: “When I qualified as a ‘Registered Nurse for the Mentally Handicapped’ in 1991, it was unthinkable that we would work closely with service users

“However, they have so much to offer and after almost 30 years I still often find they give a perspective I would never consider.

“I’ve known James for many years and we have a mutual respect for each other, in exactly the same way that I do for any other colleague.”

Sue added that James’s involvement in the Forum and EasyRead Group had helped to improve his mental health wellbeing.

To read more about learning disability nursing, click here.