Right to see a specialist that i choose

I am an unpaid carer with a very rare illness, i have heard there is a clinic that deals with my illness but have been refused a referral to this clinic.

As is the usual case i cannot self refer.

The GP seems to prefer that this be dealt with in house and using the local hospital.

I have been in touch with this clinic and most of what the GP is advising reference treatment is just completely wrong.

But the GP insists they know best even though they have never heard of this illness.

I don’t understand the system how it works, does the GP have to pay to get this referral.

I understand that nowadays that Gp Surgeries are in charge of their own budget, too many referrals and they go bankrupt?

I am suffering this very rare illness AND being an unpaid carer and am having to fight to get the right treatment.

Very difficult, very frustrating.

I can’t find information on how to appeal the GPs decision. All I can think is to ask for a second opinion. Is there a society or organisation for this rare condition? They often have a wealth of advice on how to get the right treatment. Also, you could email/ print out peer reviewed research papers about the condition for your GP.


The GP has a duty of care towards you.
If you have a rare illness, you need to see a SPECIALIST with appropriate knowledge.
Failing to refer you to someone who has that special knowledge is surely negligent?

Have you spoken to the CCG?

Hello, Londonbound. You say that you are using the local hospital.

Has the GP referred you to a consultant there?

If so, I would have thought it was up to the consultant to onward refer you to the specialist clinic, if appropriate.

Thank you for your replies.

There is a support group set up by parents and sufferers as there just was so little information advice and support on this condition.
That’s how i learned about this specialist clinic.

I had been seeing a consultant but really i think they were just going through the motions.

The consultant didn’t know about the specialist clinic i don’t think.

Does the medical world talk to each other, surely someone through the NHS should have told me about this clinic?

I have been ill over the last year due to this condition so barely been able to do anything.

Contact the CCG , i did a while ago about unpaid caring but just got nowhere.

To try and battle people when you are exhausted just impossible.

I have been trying to get advocacy but it seems it is only available for social care.

It is very difficult for me to confront a doctor and tell them they are wrong and what they are doing is negligent.

The doctor insists they are right and that’s it. Even though they are NOT.

I have now been referred to Social Services but I need medical treatment advice and support.

It is just ignorance and the stubborn pig headed attitude of the GP.


Has the consultant discharged you? You could pass the info on the specialist to him/ her and ask them to refer you.


I am not sure if the consultant has discharged me, the Corona has messed everything up.

I really don’t like the medical profession, I know my condition but the doctors think they know better.

I am ill and exhausted and fed up of arguing with the NHS and social Services.

Two further suggestions, Londonbound.

  1. Find out whether the consultant has discharged you or not. He should not have done so if your illness persists. Say to him that since you still have the illness, you would like a further opinion. Could he kindly refer you to the specialist clinic? If he won’t, why not?

  2. Since you are dissatisfied with your GP, see if you can move to a different practice. It is not obliged to accept you if you are already registered locally, but it is worth a try.