Learning to help patients with disabilities

When nurse Carol Edwards realised her autistic son had missed a hospital appointment because he could not read the letter he was sent, she knew that something had to change.

As the Norfolk and Norwich University Hospital's deputy director of nursing, she was in a position to improve the way the hospital cares for people with learning difficulties and embarked upon a six-year project which has just seen its team awarded one of the top nursing awards in the country.

Mrs Edwards and her husband adopted three children in 1993, including Tony, who is now 26 and who has autism and a low IQ.

She said: 'The sister in ENT [ear, nose and throat] called me and said that Tony hadn't arrived for his appointment. I said that he didn't have an appointment, and she showed me a copy of the letter which had gone out.

'Tony can't read, but he had recognised his name, and taken the letter up to his room.


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'I thought 'this is crazy, we are sending letters out to people who can't read and we're sending information to people that's inappropriate'.

'I walked around the hospital and looked at the signs as though I was looking through Tony's eyes and realised that something needed to be done.'

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Mrs Edwards, who lives in Little London, Corpusty, joined forces with About With Friends, a charity based in north Norfolk that gives support to people with learning difficulties, to help in forming an action plan alongside colleagues, including Stevie Read, a nurse qualified in working with people with learning difficulties.

About With Friends' members got involved in working groups and also made a video for people with learning difficulties, which is on the hospital's website, explaining what will happen on a hospital visit or stay.

The hospital has also introduced a champion on each ward to carefully monitor patients with learning disabilities and difficulties, and to offer extra support.

Every ward now has a resource pack, to help them understand different types of learning disabilities, and 1,000 staff are trained in this area each year.

Signs have been improved and patients have personal health information books to ensure their particular needs are met. This all leads to shorter stays in hospital, fewer complaints and better health outcomes.

The hospital has also employed Tristan Johnson, a dedicated liaison nurse to support patients with learning disabilities, and it has set up Project Search, a scheme to employ staff with learning difficulties.

This week the N&N team won the Nursing Times Patient Pathway Award for the work done to improve acute hospital services for people with learning difficulties.

The team was then chosen by NHS Chief Nursing Officer Dame Christine Beasley among the winners of the 14 other award categories for the prestigious Chief Nursing Officer's award as overall winner.

Mrs Edwards, who retired in September after 40 years in nursing and who is a governor of the Victory Academy in Costessey, said: 'We are delighted to have won these awards. A huge amount of work has gone on across our hospitals and has brought real benefits to patients with learning difficulties.

'We're very proud to have these achievements recognised in this way.'

Helen Dalton-Hare, chief executive of About With Friends, said: 'It's ground-breaking work that they have been doing. It's fantastic and we're really, really proud to be involved with it.'

She said one member had gone in for a bladder operation, and he was visited at home beforehand and talked through the whole hospital experience.

The visit was able to identify that he had particular fears that the tubes they would put into him would be permament, and so when he got to hospital the ward's learning disabilities champion and the hospital's special nurse were able to spend more time with him and to provide ongoing support to stop him from becoming anxious.

Ms Dalton-Hare said: 'Without a shadow of a doubt it has improved things. We hear good things all the time from our members and how it made their stay in hospital a positive experience.

'It's the little things that would probably have never been picked up on and which can make a stay in hospital a total failure and make it harder for the nurses and staff.'

David Prior, chairman of the hospital, said: 'Carol is a very exceptional and special person representing all that is best about the NHS and the N&N.

'She has dedicated her life to help and care for people and this award could not be more deserved'.

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