"My experience with the referral process"

Back in April this year I was seen regarding my left hand (I have arthrogryposis and it is now affected by severe contractures). Unfortunately, the registrar was very discouraging about my condition and didn’t seem optimistic about treatment options. They told me there was only one consultant in Scotland with relevant experience – a plastic surgeon who is nearing retirement – and said he would refer me, though he doubted they could help.

Fast forward five months: I had heard absolutely nothing. I got in contact myself with the secretary and was shocked to be told that no referral had ever been made, and that no notes had even been written up from my appointment.

I then phoned the referring service, and found them to be quite rude and dismissive. They offered no apology and simply told me the consultant would put in an urgent referral.

It’s now been another two weeks and still nothing has happened. The whole situation makes me feel like my case has just been brushed aside, and the staff I spoke to seemed like they couldn’t care less.

For a patient with a rare condition and worsening symptoms, being left in limbo like this is incredibly disheartening.