Refused Specialist referral

[rosserk]

Hi all, any advice would be appreciated.

I have Hashimoto’s, Ehlers-danlos and Sjögren’s all of which have connective tissue connection.

I’ve posted here as well as on the Sjogrens forum because my question isn’t specific to a particular disease and there aren’t many people on the Sjogrens forum.

I’m currently under a Rheumatologist who unfortunately doesn’t have much knowledge of Sjogrens. In fact there’s no one at my local hospital who specialises in Sjogrens. I asked for a referral to a Specialist in Sjogrens and was refused. I’ve looked on line and from what I’ve read I can request a referral but the Doctor can refuse. I think this is wrong particularly when my symptoms aren’t being well managed under the current treatment plan.

I’d be grateful for any advice, if anyone has any knowledge. I’m really desperate my symptoms indicate I’m having problems with internal organs affecting my liver and kidneys and lungs.

[Fruitandnutcase]

The only thing I can think of is to see if you could get your optometrist - some can do direct referrals - to refer you to a eye specialist who deals with Sjorgen’s because it affects your eyes - that might be a way to get to see a specialist. Other than that I would do some research and find myself someone who actually specialises in Sjorgens and ask to be referred to them and be prepared to travel.

[rosserk in reply to Fruitandnutcase]

Thanks Fruitandnutcase. Didn’t think of asking the opticians it’s worth a try.

I’ve found the best Sjogrens specialist but the Doctor wouldn’t consider it ! 😭

[Fruitandnutcase in reply to rosserk]

Good luck.

[Jazzw in reply to rosserk]

If another of your symptoms is dry mouth, your dentist also might be able to refer you.

So sorry you’re having to fight for help x

[JMo1]

You can ask for the decision to be reviewed and then follow the GP’s complaints process. If you exhaust that and are still unsuccessful you can then go to the Ombudsman to complain about the refusal. You need to have sufficient evidence of course to prove the GP is being unreasonable etc. It is a long exhausting process but sometimes the right thing to do. I hope you manage to get the referral you need! I went through a really complex process to get my daughter an appt with an NHS endo and only eventually got one after a successful Ombudsman complaint.