Well I put a post on here a while back after a bad experience at Genetic Medicine at St Marys.
I contacted PALS regarding my experience. They were most unhelpful and I received a curt, dismissive letter saying they won't see me again. I asked my GP to refer me again and he said 'no point' as this is only place he can refer me to. I feel very badly let down.
I don't ahve he money but even if I did I couldn't see anyone privately as they want a GP referral. It's hopeless. I wouldn't mind it was a consultant who told me I 'almost certainly' had EDS. Now I'm the one treated as a liar. I am just treated really badly.
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Have you contacted your local Healthwatch? Some of them will support patients to bring formal complaints, but even if they don't, they still need to know about this.
The other thing you could do is try to get advice from the Patients Association who might be able to support you in this.
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