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NHS Scotland

DaisyGirl

Hi,
I haven't been posting much lately because I have been completely crushed by an experience with the NHS in scotland.

Does anyone know if all NHS hospitals and staff are supposed to have autism awareness training? I have found that no staff at my health board area do. The consultants will not answer questions, they don't want me to have my Mum with me (I am an adult and have no learning disability, but my Asperger's autistic traits are very pronounced), they have no idea what autism is and despite us now having made a complaint about them and the health board apologising, I had another appointment and it seemed just the same with the doctors, althought the nurses were a lot better.

I just don't want any contact with any medical professional again. I am totally stressed out because I am still not better (they made lots of mistakes so everything I have gone through was for nothing and has to start from the beginning but I can't stand it). I just never want to see a GP or a doctor again and I don't know what to do if I get sick. I am totally terrified of the way they treat me, they just have NO IDEA about autism and they don't want to know what it is or what people like me need.

Anyone have any ideas? It seems there is no help for me. I am totally abandoned, I can't go back to these people.

Parents

  • I think your hypothesis about adults with autism is broadly correct. But these are things we have to try to change, so we don't just continue to be stuck with entrenched past misconceptions.

    We may have to do this without the help of NAS, which is a blow. But NAS is still primarily a parents' group. It may campaign for adults but I'm not sure if NAS is sufficiently committed to change for adults.

    One thing you can do now is write to this Jane Cantrell, pointing out what happened to you. But copy it to Scottish Ministers (scottish.ministers@scotland.gsi.gov.uk ) requesting at the start of your email that it be referred to both Alex Neil MSP (Minister for Health and Wellbeing), who looks after NHS, healthcare workers and their training, and Michael Matheson MSP who is Minister for Public Health, and looks after patient care. Copying in these ministers via the Scottish Ministers email address will, I assure you, make absolutely sure your concerns are addressed.

    For postal communications Scottish Ministers are at St Andrew's House, Regent Road, Edinburgh EH1 3DG. I've given you Jane Cantrell's postal address in my previous posting.

    Explain that you have autism, that you had someone present (your mother), and that your circumstances were made known, and demonstrate concisely how they let you down, both in terms of understanding autism, and the non-autism aspects of care you mention. 

    Backing up a complaint with referral to specific Scottish Ministers will usually get things moving. It may not get exactly what you want, but it will ensure a shake-up at Hanover House, Rose Street.  That in itself may be some satisfaction.

    That guide for patients with autism, while it had some good points, really isn't fit for purpose.

    I wish NAS Mods were listening, because really NAS should be protesting for you, but let's face it, apart from sending plastic cutlery sets to wind up MPs I'm not sure that NAS "has its eyes on the ball".

Reply

  • I think your hypothesis about adults with autism is broadly correct. But these are things we have to try to change, so we don't just continue to be stuck with entrenched past misconceptions.

    We may have to do this without the help of NAS, which is a blow. But NAS is still primarily a parents' group. It may campaign for adults but I'm not sure if NAS is sufficiently committed to change for adults.

    One thing you can do now is write to this Jane Cantrell, pointing out what happened to you. But copy it to Scottish Ministers (scottish.ministers@scotland.gsi.gov.uk ) requesting at the start of your email that it be referred to both Alex Neil MSP (Minister for Health and Wellbeing), who looks after NHS, healthcare workers and their training, and Michael Matheson MSP who is Minister for Public Health, and looks after patient care. Copying in these ministers via the Scottish Ministers email address will, I assure you, make absolutely sure your concerns are addressed.

    For postal communications Scottish Ministers are at St Andrew's House, Regent Road, Edinburgh EH1 3DG. I've given you Jane Cantrell's postal address in my previous posting.

    Explain that you have autism, that you had someone present (your mother), and that your circumstances were made known, and demonstrate concisely how they let you down, both in terms of understanding autism, and the non-autism aspects of care you mention. 

    Backing up a complaint with referral to specific Scottish Ministers will usually get things moving. It may not get exactly what you want, but it will ensure a shake-up at Hanover House, Rose Street.  That in itself may be some satisfaction.

    That guide for patients with autism, while it had some good points, really isn't fit for purpose.

    I wish NAS Mods were listening, because really NAS should be protesting for you, but let's face it, apart from sending plastic cutlery sets to wind up MPs I'm not sure that NAS "has its eyes on the ball".

Children
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