"Adults with a learning disability"

About: Royal Infirmary of Edinburgh at Little France

(as a friend),

I am an adult with a Learning disability and I am telling you my story with the help of a friend and my self-advocacy group co-ordinator.

A few months ago I was transferred from my local hospital to the Transplant ward at the Royal Infirmary Edinburgh. When I am in my local hospital I have my friends and family near and the nurses speak to me, which helps me cope being in hospital.

Edinburgh is a long way from my home, family and friends and I feel very lonely and worried. I feel the staff did not have time for me, I had to wait a long time for pain killers and they were always busy with other patients. They said they did not hear me when I spoke to them. They never came to check on me. I feel they do not understand people with learning disabilities.

My local hospital are busy too but they tell me what they are doing and will come back to me later.

I asked if the learning disability nurse would come to see me. I asked the learning disability nurse to speak to the nurses on the ward, but nothing changed.

Another problem I had was the food, I did not like it and was not allowed to ask for something else. There was no one living nearby who could bring me something I liked to eat. I need to eat to get better.

I know nurses and doctors are busy but I want you to understand how I feel and help me and other patients with learning disabilities when they come to the hospital. I do not want to come back but know I may have to one day.

When a patient with a learning disability is admitted they should be seen by a learning disability nurse or learning disability champion as soon as they go in and not a few days later or if there is a problem. If my special needs can be discussed and written in my nursing notes when I am admitted it will help all the staff understand me better and make my time in hospital much better.

Please talk to people with learning disabilities, We would like to know what is going on and get to know the people who care for us. Please tell me your name.

If you can work to do this it would help me and many others with a learning disability feel cared for and treated the same as everyone else

Thank you for reading my story

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Update posted by Unhappy and hungry’ (a friend)

It is 3 weeks since I submitted a story on behalf of an adult with a learning disability. I doubt if many people appreciate how difficult it was for this person to sit down and explain how they felt about their experiences.

To date 2077 members of the public have read this story and it appears that only 1 person at NHS Lothian has read it. I accept other staff members may have read it through a non work e-mail account.

I recommended this person submitted their story this way rather than carers and family submit a formal complaint. Is it disappointing that this persons story did not appear to be worthy of any form of acknowledgment. This feeling of being ignored is the scenario that makes patients with learning disabilities feel disenfranchised.

Friend of Unhappy and hungry

Response from Jeannette Morrison, Head of Patient Experience, NHS Lothian

Hi there

I am so sorry that l have not responded before now and wanted to let you that I have passed your feedback to the Transplant Team who were responsible for your care while you were in hospital. Most of the feedback the team receive is positive so they were very disappointed and wanted to apologise. They were particularly concerned to read of your experiences. They were though, pleased to see that the Learning Disability Nurse was involved in your stay, but disappointed that your experience did not get better once they were involved supporting you through your hospital stay.

The Transplant Team would like to look into your experiences further if you don’t mind. Would you and your friend and self-advocacy group coordinator like to get in touch with me? I can then arrange for you to speak with the team and the Learning Disability Nurse so they can learn more about your experience and prevent something like this happening to you or anyone else again You can get in touch with me on 0131 536 3370 or via email at Feedback@nhslothian.scot.nhs.uk. Thank you

Kind regards

Jeannette Morrison

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