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Health Care Advocates

Dawn

Has anyone had social services appoint an advocate to help with general medical care? What are your experiences? How did you manage to get an advocate and were they there when you needed them?

My sensory issues combine with my medical phobias to produce melt down or shut down in medical situations. At times in the past this has meant that I temporarily do not have mental capacity. It often means I am not taking in a word and leaves me in high anxiety states.

My GP referred to social services but social services are refusing. 

At present I simply cannot access any health care.

  • in reply to πŸ˜‚πŸ˜‚πŸ˜‚

    Hi Jamie,

    Thanks for replying. 

    This is getting so confusing. Prior to my diagnosis, I was under MH care for my medical phobias. I did for a short time have a 'co-ordinator'. She once volunteered to come to an appointment with me. She was then slapped down by her management and told that was NOT her role and that they are not allowed to support people in that way. In the end, I went through a major dental intervention which caused a severe crisis with no support. I was even deemed to have no "capacity" to consent to the procedure as I went into an extreme meltdown awaiting the procedure.

    Of course no one knew that I was autistic then.

    What's difficult is that autism, per se - even in meltdown isn't a mental health issue. The only mental health component is that the sensory issues, undiagnosed for 56 years caused a monumental medical phobia in childhood.

    I know MH won't take this on, but neither will social service...they would if I had difficulties communicating out and about, but not if the communication issue is in health care settings. I don't need help to get out and go places. I can do that all by myself and I have friends, but health care...even adjusting the appointment system to make it easier on me is something they just will NOT do.

    So, who is supposed to get me the support to access general health care. At the moment, I can't go to the doctor's. This is ridiculous. Do they want me to just go away and die in a corner, because only issue I need any support with is no one's responsibility. Certainly feels that way.

  • in reply to LucyLandRover

    Sadly, I have no support work and social services say it's mental health (which it isn't), and the social prescriber says I'll have to pay but even so the only places she can point me to don't actually do that.  The advocacy charity is being brilliant over my complaint issue but this isn't anything in their remit to take on long term.

    My GP says I should have an advocate, but the receptionists won't make an appointment which would make it possible to use one.  And all the responsibility or running around the different organisations is left with autistic person here who find this kind of thing majorly anxiety inducing and stressful (heavy sigh).

  • in reply to Desmond79

    :-) If only we had little virtual pop up selves we could all call on as and when we needed.  I'm sure I'd be a good advocate for others in some situations, but need one myself in others.

  • in reply to Dawn

    Hello,

    I had a support worker who applied to the local advocacy charity on my behalf. Is there such service in your area? I too have been passed around different services and it is not good. I do hope you are able to find support. 

  • in reply to LucyLandRover

    Brilliant. Exactly what I need. How did you get that? All the services seem to be passing me from pillar to post

  • Hello,

    I have had similar issues and managed to gain a autism advocate to help me communicate when attending any medical appointments. This is useful as well as he knows what the NHS should be providing such as more time and quite places to wait and has stood up for me to help me gain such support. Is there an advocacy service local to you?