LUPUS UK
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Your rights as a Patient

I have been asked to make this very helpful link from Citizens Advice more readily available to everybody;

citizensadvice.org.uk/healt...

This link provides details about your rights as an NHS patient.

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Thanks Paul. And Keyes

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Many thanks for that. 'M'

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Thanks for this link Paul. I'm posting about the outcome of a formal complaint I made about a GP recently, in case it helps others here find the confidence to stand up for their rights as I've tried to do. .

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Thanks Twitchytoes. It's always helpful to hear about your experiences.

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Good of you to reassure me of this Paul - never quite sure if I'm just a seronegative nuisance!

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Absolutely not. I think it is reassuring for other people to read because many have been or are in similar situations where they are struggling for confirmed diagnoses.

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Yes I know many here struggle in the shadowlands Paul. Even with confirmed diagnoses they can be changed, lost along the way or ignored by busy doctors - especially if the GP or specialists (or both) are not the usual ones or a person has the misfortune to see a different doctor each time.

Twitchy

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Hello,

Can any-one please tell me if we have any rights to requset/demand a referal and monitering by a rheumatolgist?I have sjorgrens and anlupus oerlap , fybromyalgia and ehlers danlos. I was diagnosed a long time ago. I was on medication for years- I paid  to see a consultant privately.

Last year my doc refused to prescibe any meds, as he  said it was not good for me. I have got worse and worse , and despite seeing him, he will not prescribe for me or let me go back to see a rheumatologist. He says you have your diagnoses, there is no treatment.

Any-one else had this experience? Can we demand to see a rheumatologist or neurologist -or is it always at the doctors discrection. ?

Thank-you so much!

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You cannot receive NHS hospital treatment without being referred by your GP. I would suggest that you change your GP if you have a confirmed diagnosis of sjogrens, lupus and fibromyalgia and they are claiming that there is no treatment! Information about changing your GP can be found here - citizensadvice.org.uk/healt...

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Thank-you Paul so much for the advice. He says that everything is confirmed, so there is no point in me seeing a consultant again, as there is no cure.! what about monitoring and flare-ups etc? and the fact that he has stopped all my meds, and now , he wouldn't know which dosage to put me on as he isn't qualified as a consultant. He also stopped my drugs with no tapering off and I have been very ill as a result.

I am feeling that I need medication, as I am more unwell and unable to function. He is a brick wall.

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It is important for consultants to monitor your disease activity and make any necessary adjustments to treatment. It is incredibly dangerous that he has stopped all of your medications, especially without tapering. I have no idea how this person is practicing as a doctor! You need to change to a different GP and lodge a complaint.

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Thank-you Paul, for your kind and supportive words. I have booked a phone call with him tomorrow, and if he is still the same unbending and indifferent person-which I am sure he is.I have decided to find a new doc. I am not a neurotic or silly woman, I am sensible  coherent and can sarrticulatel, I do find him incredibly belittling and arrogant. Do I complain to the practice manager? I imagine they will be 100% behind him.

Thank-you so very much for taking the time and effort to help me. I am so grateful. If you don't mind I will let you know what transpires tomorrow, if anything.

warmest wishes,

Ann

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Hi Ann,

You could complain to the practice manager, or if you want assistance with your complaint from an independent organisation you could contact the NHS Complaints Advocacy Service - nhscomplaintsadvocacy.org/

Good luck tomorrow, let us know how you get on.

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in my experience the NHS has been a no help service.

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Hi Tara1_,

I'm sorry to hear that you have had a bad experience. I have read about your recent appointment in your comments on other posts. Have you spoken with the PALS team at the hospital to lodge a complaint?

It may be best to ask your GP to refer you to a different rheumatologist, perhaps one with a specialist interest in lupus? If you let me know what area you live in, I can provide you with information about any lupus specialists we know nearby.

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Does this apply in Scotland, please?

Or England & Wales only?

Thanks, Aileen.

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Hi AileenT,

Apologies, that link is for England. For Scotland, please go to citizensadvice.org.uk/scotl...

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Paul

I recently was given positive ANA results and GP said that this would be followed up, however a couple of weeks later he contacted me and told me they were acceptable tolerances and the Rheumatologist would not go any further. I feel that if I got to see a Rheumatologist and they could see my other symptoms they would be more likely to investigate further. Any suggestions on my next step.

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Hi stuart68,

I'm sorry to hear that your GP will not refer you to a rheumatologist. If they feel that your ANA result does not point towards the cause of your symptoms, have they suggested an alternative diagnosis and treatment plan?

If they are unable to offer a satisfactory diagnosis/treatment plan then a referral to a specialist is needed. You may want to consider looking at changing GP if they are resistant to this. You can find more information about doing this towards the end of our article here - lupusuk.org.uk/getting-the-...

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Paul

Thanks for the reply, I was seeing a dermatologist in relation to my scalp, face and hands but apart from finding multiple allergies they have not been able to stop the conditions and was signed off after two years and the closest they could come up with was stress related. I also have recently developed trigger finger. I was happy when my GP agreed to the blood tests so he is at the mercy of the Rheumatologist I guess. Would you think a private blood test would be the correct path.

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Going privately would be expensive. You would most likely still need to be referred by your GP, but then you'll be paying around £200 for a half-hour consultation with a rheumatologist and possibly at least £1,000 for the various tests. If you did get a diagnosis, you would still need to see your GP for prescriptions and monitoring so if that relationship is difficult it may be best finding a different doctor.

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Finally saw another GP who on seeing my symptoms has agreed to refer me to Rheumatologist. Hopefully closer to a diagnosis either way.

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That's great to hear! Good luck with the rheumatology appointment. If you need any tips on preparing for it, please take a look at our article here - lupusuk.org.uk/getting-the-...

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