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Not ideal for Patients on the Autistic Spectrum

Story from nhs.uk

"Not ideal for Patients on the Autistic Spectrum"

About: Stoke Mandeville Hospital / Accident and emergency

I am a person with Autism, I also have a job, and a degree. Autism is a spectrum.I had arm pain so I went to A&E because 111 told me to. In A&E I waited hours, and the doctor told me it was a sprain. I told the doctor it was not a sprain, because it felt worse and he told me if it was broken I would be in more pain. I said I was in pain, but because I am Autistic I am not good at non verbal communication, I verbally said I am in pain, I am sorry if I can't show pain like neurotypical people. Another annoying thing is soon is not a time, I asked for an estimate about how long I would have to wait and I was told I would be seen as soon as possible, I would rather have had a definitive block of time (eg: we usually see most patients within 10 hours).This place seems to have no Autism awareness.

I told the nurse in charge that she should google how to talk to Autistic people and they said I should phone PALs. I said I could not, they said everyone could. That is mute people do not talk, and people under 1 probably cant use a phone, and if you have no access to a phone you can't make a phone call so not everyone can call PALs.Autistic people may not want to talk to a stranger on the phone,why was I not given alternative ways to contact PALs. A few days later my GP sent me for an x-ray, and my arm was broken. The x-ray and fracture clinic met my needs and made me feel better.

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Responses

Response from Anthony Banton, Patient Relations Manager, Buckinghamshire Healthcare NHS Trust 4 years ago
Anthony Banton
Patient Relations Manager,
Buckinghamshire Healthcare NHS Trust

Submitted on 02/05/2019 at 11:54
Published on Care Opinion at 12:29

Dear Sir/Madam

Thank you for taking the time to leave your comments on this website.

I am sorry to read of the problems you have written about and the episode of care that you have described in our A&E department. I do feel that this is an area our trust would be willing to learn from and improve. Much of what you explain makes me sad to read and in the first instance I feel our front line staff may need a higher level of awareness relating to all aspects of autism, including high functioning autism HFA. As I read your account I suspected you had a broken bone because some of the traits of HFA can be a decreased awareness of danger and a higher tolerance for pain which can result in understating symptoms.

if you would like to help us in a more detailed way to improve the way we interact with our autistic patients. I would like to invite you to consider joining our patient membership list which would give you a platform to represent care from an autistic perspective. You can contact me through the Patient Advice & Liaison Service (PALS) by emailing them on bht.pals@nhs.net to share your concern and discuss whether joining our membership is something you would be interested in. When you contact the PALS you can also explore with them if you would like to formally complain about what happened to you.

I have sent your comments to the A&E Matron so she is aware of the concern you have raised.

Kind regards

Anthony Banton

bht.pals@nhs.net

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