Looking for a GP with experience of autoimmune rheumatic diseases

[MarB]

I am desperate to find somebody who has experience of autoimmune rheumatic diseases, who really understand the chronic clinical framework.

I had found one doctor very good at this: for some years things went on smoothly,  until administrative changes or just his different agenda and priorities messed up totally my care. For about one year I did not receive the diagnosis of a comorbidity.  I had to go privately and discover that with a very cheap medication and in few days I would sort out awful pain and risk of further complications.

After that episode,  I decided to change practice.  I did not feel comfortable anymore going back there. But things went even worse. Within the new surgery the first GP that saw me insisted to change a repeated prescription. I had to file a yellow card for such very idiot error because I had an allergic reaction. The second GP denied other prescriptions that I have on my list with the consequence I ended up in A&E. I was  referred to a hospital clinic for further assessment. It is really tiring to deal with these incompetent doctors! They may be junior but ... isn't that a reason more to listen to patients and trust what they say, instead of expecting the other way around?  I am feeling constantly dismissed,  if not even intentionally bullied.   

I manage my condition very well but any little issue I have (and I have many, to be honest) requires to be considered in the context of  autoimmunity and allergies, for which I cannot always rely on self-care. If I need to speak with a doctor I expect a minimal degree of understanding of rheumatic diseases that change many assumption for non specific symptoms. 

Also referral to specialists for the purpose of monitoring a number of risks associated with autoimmunity  have been mismanaged  with appalling waste of resources: it makes no sense to  refer me for a  wrong  issue or to the wrong clinic.  My new GP (that saw me just once in six months) told me I have health anxiety that I absolutely do not have. He ordered tons of blood test (who is anxious?)  totally useless,  instead of studying my condition and trying to understand from my record how to deal with a certain issue. There are clinical recommendations for my condition so why not follow the advice?  I had to go to  another private GP. In conclusion I feel  I do  have health needs unrecognised   so I want to change GP surgery again.   

Does anybody have recommendations of local surgeries registering new patients with the NHS that have  doctors with some  expertise in autoimmune rheumatic diseases?

Marbeya

Edited April 8 by MarB
improve readibility - shortening the text

[Azalea]

I wish you luck in finding this GP.  Which surgeries have been unsatisfactory?

[MarB]

From the number of replies I had and the question asked by Azalea here  I conclude there is either considerable fear to speak out publicly about GPs or there is a level of dissatisfaction about doctors expertise in rheumatic chronic disease in our local area that is higher than I was expecting.

Both things seem to me no good at all, especially if confronted with the number of people with rheumatic conditions living in Dulwich and surrounding areas - I see so many relying on pseudo scientific therapies, falling into a downward  spiral and then with  diabetes, obesity and various other manifestations of poor health  such alleged dementia or autism. 

What to conclude? Best of luck to everybody who cannot afford private consultations and does not have the skills for self-care! 

[gabys1st]

I wouldn't bother with DMC Chadwick Rd.

[Sue]

This is probably a stupid question, sorry.

Could you contact all the surgeries whose catchment area you are in (and haven't already found wanting) and ask them directly if they have any GPs with the specific  knowledge and experience relating to rheumatic issues which you need?

Because I imagine there are not many people using this forum who can help, though I may be wrong.

Edited April 11 by Sue

[MarB]

  On 09/04/2025 at 11:35, Sue said:

This is probably a stupid question, sorry.

Could you contact all the surgeries whose catchment area you are in (and haven't already found wanting) and ask them directly if they have any GPs with the specific  knowledge and experience relating to rheumatic issues which you need?

Because I imagine there are not many people using this forum who can help, though I may be wrong.

Expand  

I don't think there are stupid questions Sue.  There are informative questions, policy questions, normative questions.... You suggest to do a sort of survey! Interesting idea but not for me as I have other priorities and if I do not address these with NHS doctors I will go, once again, privately.  In any case as many people using this forum know, GP surgeries in England offer at present services that in most cases do not and cannot cover matters that are under the remit of secondary care - for instance rheumatologists clinics in hospitals.

If the dismantlement of NHS England will bring possible positive changes also in primary care with more choices for people  I do not know but I would really hope so because at the moment lot of people with chronic rheumatic conditions  fall into the cracks  of he system, that means are not seen by NHS rheumatologists that have long queues and cannot be cured by GPs neither in most cases, even when (I am sure about this and I would like to know more) there are physicians and local GPs fully qualified and experts to do such jobs even if they are not rheumatologists!   

Thank you for your time Sue and by the way  if you do any survey like the one you mentioned please let us know. 

[Soylent Green]

GPs are general practitioners, hence the name; they are not specialists.  Specialist doctors only work in hospitals.  Each GP surgery has a catchment area; you cannot just choose a GP because you think they are the best match for your health condition, you have to be in their catchment.  If you are not happy with the one you are currently with, ring round the others nearby and find an alternative who is able to take you.  Then, work with your hospital clinic and the GP together to maintain your health.

As an aside, I have a chronic autoimmune condition and have had no problems with the shared care of my GP (The Gardens) and hospital consultant ( I am under Prof Heneghan).  I visit the clinic twice a year, they advise my GP of any changes and the GP does my prescriptions (which include a controlled drug) and my blood tests in between.  When there has been any queries about compatibility or suitability of a treatment, the GP contacts the team at Kings for advice.  The system works perfectly.  

Good luck with your change of GP and give them any hospital letters when you sign up.  A GP along cannot manage your condition, so you will need to ask your hospital specialists to set up a new shared care agreement with your new GP (this has to be done this way; a GP cannot set that up). 

 

 

[Sue]

  On 13/04/2025 at 14:27, MarB said:

I don't think there are stupid questions Sue.  There are informative questions, policy questions, normative questions.... You suggest to do a sort of survey! Interesting idea but not for me as I have other priorities and if I do not address these with NHS doctors I will go, once again, privately.  

Thank you for your time Sue and by the way  if you do any survey like the one you mentioned please let us know. 

Expand  

I wasn't suggesting doing a survey, with all that entails!

I was suggesting you phoned (or emailed or otherwise messaged, as appropriate) the surgeries of which you are in their catchment area, and asked them directly.

I wouldn't have thought there could be that many of them.

I have known of hospital specialists who later  became GPs.

But Soylent Green's advice above seems like your best option.

Edited Tuesday at 22:14 by Sue