"My stay in ninewells"

About: Ninewells Hospital / General Medicine

(as a parent/guardian),

Was in for testing which was stressful but being autistic was more so. Had test which made me feel ill and migraine lasted 10 days during my 10 day stay I did not eat except for 4 grapes and lost 1 half stones due to the stress.

I was never challenged or encouraged to eat like I would be at home from my mum who cares for me. My concern for this is not for myself but for others who may have stay in longer or are sicker if there nutritional needs are not met they will not get better.

The last joke I complained of uti when I was in and was meant get test left with no results. On discharge went to my gp who did test and gave me antibiotics all within 48 hour leaving hospital. One note I must say nurses were lovely and doctors nice to me, did not make me feel uncomfortable regarding how I am due to autistic tendencies.

However I find it hard to communicate my needs and feel in all wards there should be someone who can help that has knowledge learning difficulties. They were told I had difficulties yet in my care plan nursing one said no in tick box. Why then does my mum have power attorney and has told you about my difficulties several times just because I can function and dress myself does not mean I do not need a bit of help and support.

On an other interesting note unexpected inspection for hospital was funny. The cleaners running. Around and staff checking everything is as should be and being offered handsome meal and pepper sauces yet previous week having not been was highly amusing more as because our ward did not get visited.

What do I want the to take from this? ? ?

1 if patient says have learning difficulty take time to see if need help I won't always ask as I don't want to bother anyone or I'm embarrassed

Just because I have autistic doesn't mean I want everyone to know

Check if people have or haven't eaten if not why not? ?

Question what can help

I can't eat food that touching each other so spilled soup on my tray will mean all food contaminated and I can't eat it. Awareness of these types issues in learning disabled would go long way in improving care.

Don't make me wait 4 hours just to get anti sick that will work and be annoyed as I refused take the one that I told you wasn't working.... to me it felt like you made me wait as a punishment for not taking one that didn't work

Would you take tablet that didn't work? ?

These are my daughter's feelings.

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Responses

Response from Margaret McGuire, Nurse Director, NHS Tayside

Thank you for getting in touch to share your recent experience. I am sorry to hear that you found being in hospital for tests a stressful experience and that your needs were not fully met. I apologise that you were not encouraged to eat and that you had to wait some time for the right medication. Without specific detail I would be unable to comment further however I can share what we would expect to happen.

Within NHS Tayside, arrangements are in place to enable hospital staff to contact the Learning Disability Liaison Nurse for advice and support in caring for patients with learning disabilities and we are sorry that this did not happen during your stay. I would expect all nurses and staff to listen to what families are telling them, record it in the case notes and to follow the right care pathway. Your feedback is really important to us as we use these important stories to help our staff learn about the impact of their actions and indeed inactions. We will use your story to teach staff about caring for people with learning disability to and encourage them to change behaviours and really get things right for the patients we care for.

I apologise that our expected standards are not what you experienced. If you would like to contact me through our feedback team at feedback.tayside@nhs.net we would be happy to explore why this did not happen this time.

Best wishes

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