“Every path has its puddles” – helping Learning Disability Nursing to know how to get better

The growing recruitment gap for specialist learning disability nurses is well reported. In conjunction with the Royal College of Nurses and the NHS Chief Nursing officer, Nursing Now England is running a series of listening events, ultimately aiming to improve the reputation, quality and availability of specialist learning disability nursing skills across the NHS.

Dimensions’ family consultant Barbara Beaman recently attended an event, bringing with her a collection of good and questionable practice experienced by various people supported by Dimensions.

We’re drawing no direct conclusions from these snippets – that’s for the NHS to do – but they paint an eloquent picture of some great practice mixed with poor and risky experiences. Of a good path with some puddles along the way. Stories of poor support are, of course, also more memorable than times when support has been perfectly ok.

What’s your own experience?

The Good

  • Day surgery for dental work went well. I and two members of staff were able to stay with him until he went under and then we were with him when he came round.
  • We rang A&E and warned them we were coming and please to allow us a side room to wait in. They did provide this.
  • The hospital team were respectful to him and support team, but there wasn’t any obvious sign of them being learning disability trained. We didn’t feel rushed or that we were being a nuisance.
  • The care, understanding and patience at my son’s operation were all very good and the nurses were keen to accommodate me, him and his support worker.
  • Before surgery my son had to have a blood test. The nurse was happy for me to have one first so he could see it was no big deal.
  • I was allowed to go to the theatre with him until he was unconscious and they fetched me immediately he started coming round.
  • Dimensions #MyGPandMe campaign has had some impact on my son’s practice manager – when she is reminded of it!

The Bad

  • They try hard and are very kind but they have no signing skills whatsoever.
  • The Doctor is a pleasant man but has no signing skills. I haven’t really noticed any specific adjustments.
  • There was no one with an understanding of signing.
  • We took his hospital passport but none of the staff knew what it was or what to do with it.
  • When my son had an operation no one had read his hospital passport.
  • After an operation, staff said he couldn’t leave until he had eaten a cheese sandwich. He would still have been there today! We gave him a Kit-Kat but had to sign a disclaimer.
  • Staff wanted him to urinate in a bottle. He is autistic and you don’t wee in a bottle! We felt there was no understanding of autism at all.
  • The GP is refusing to check to see whether there are any lumps in my son’s testicles saying we have to teach him to feel for himself. He wouldn’t have a clue. What good are annual health checks?
  • Lack of reasonable adjustments about appointment and waiting times are endemic!

Find out more

If you are a GP and would like to know more about how you can be more accessible visit this page.

If you have learning disability or autism and want to see your doctor, visit this page for advice and information on what might happen when you arrive at the doctors. 

If you support someone with learning disabilities or autism to visit the doctors, please visit this page for some useful resources and real life examples.

Share praise and best practice from your GP

We want to hear examples of best practice to help us inspire GPs and show them the difference they can make.

Complete the form on this page or tweet using #MyGPandMe to share examples of best practice.