Gp won't reffer me to rheumatology

[Milesy79]

Spoke to gp today, she refuses to send me to rheumatology as I don't have a rash!! Says it's requirement. I told her not everyone gets a rash she said 80% do I said what if I'm the 20%? Told her I'm fed up of this hurting everyday, just come out a 3 week bad flare of horrendous joint pain, mouth ulcers, sores in my nose, positive ana test.. Horrendous tiredness sleeping, I said I'm just supposed to feel like I'm dying everyday then? She said aww sorry 😞😞😣😩😩

[marypw]

That’s nonsense. Not all lupus patients have a rash and if you have a positive ANA, then you should have tests for more specific antibodies. Are there any other doctors at your surgery with whom you could get appointments?

Also it’s very helpful to keep a diary of your symptoms? Things like Raynauds or blotchy skin (livedo reticularis) or mouth sores can be really good evidence.

[Ajontheedge]

Ask for a second opinion. GPS are gatekeepers, if you have positive ana, it should be investigated.

I'm sure the NHS do have a system to ask for a second opinion, but it may depend on where you are, do look into it.

Good luck!

[Duchess1088]

Hi Milesy, see another GP my GP said they know nothing about lupus that's why we refer to a rheumatologist. Some get a rash some don't.

[Lizard28]

It’s so difficult to get a diagnosis it’s taken 10 years for me to get a diagnosis, I was diagnosed with MCTD but then I was in right place at right time when I started getting a horrible rash, the dermotologist asked if I would agree to getting it photographed which I did, what a job, he took pictures of ever bit of rash, even in my scalp. I thought then she must be onto something if she is doing this. I was biopsied and It was lupus. My bloods never showed anything other than a very high RF factor and inflammation markers over the years, I had all the symptoms but as my Rheumy went on bloods I was never diagnosed. Take pictures of anything strange and keep a diary. I had mouth ulcers, raynaulds, Sjögrens, even lymphoma and finally lupus. Don’t give up, my GP didn’t refer me, I was in hospital for breathing problems when the blood showed an extremely high RF factor and I was seen by a rheumatologist urgently. That’s probably the only way I would have got the referral. Years ago I was also diagnosed with GCA, I was referred to rheumatology urgently again. I have had a lot of weird illnesses over the years. Don’t give up.

[PMRpro]

What rubbish - whether it is lupus, whether you have a rash or not, you have symtoms that require investigation and that is outwith HER ability, that is clear. Only about half of lupus patients have a malar rash, just as the butterfly rash can appear in other disorders.

emedicinehealth.com/does_ev...

aad.org/public/diseases/a-z...

Indeed Lizard28 it takes an average of over 10 years to get an autoimmune diagnosis!

There is a clear process in England to complain to the NHS about poor service - you have already tried with the doctor. Next might be another doctor in the practice but then it is the Practice Manage. Then you go outside

ombudsman.org.uk/sites/defa...

[dg70]

There is always the private route, not ideal but all the GP has to do is ask which Rheumatologist you want to see and they write a letter of introduction. If you are paying the GP doesn't usually care about writing a letter. Someone may know but places like the London Lupus Centre may not need a GP letter, you may just be able to ring up. As long as you are in the UK. An initial appointment should be around £200 and bloods they usually ask the GP to do as then its free for you. Lab costs are extortionate. I agree though complain to the practice manager and go armed to see another GP with any info re. rashes, bloods etc.. that you can. I rarely have any kind of butterfly rash on my cheeks, it's very little, just a rash mainly my neck sometimes. Bloods apart from DSDNA are all negative. I have diagnosed Lupus though. Double stranded DNA blood test can only be ordered through a Rheumatologist as far as I know and that would be definitive. How do you get that test if you can't be referred? Don't give up, keep fighting on. We don't all fit the perfect mold of symptoms, we have to educate GPs to consider that.

[lupie46]

I paid and went to the hospital for rheumatic diseases in Bath. You might have to go that route.

[BrigidsFire]

If you decide to go privately, more often than not you don’t need a referral. And once you’ve had the initial consultation and follow up you can just be added to their NHS list for further appointments, that’s what my consultants did.

A cheaper route may be to pay for an online private GP appointment (I think they’re around £50) and they may be able to refer you to an NHS consultant. You can always check with them first if they refer solely to private or to NHS as well.

If there is another GP at your practice you might have better luck with them. Google stalk them and see if you can find professional listings they are on. Quite often this will list their interests (eg, I found out that one GP at my surgery has an interest in fertility, so when we wanted help with IVF he was the one I saw. Your surgery web site may have information like this on it.)

Another option is to contact PALS and see if you have any luck via them.

Changing surgery may be another option.

Lastly, and it’s not ideal but sometimes needs must and all that… you could go to A&E regarding the pain and when you are there say that you think you may have lupus but are struggling to see a rheumatologist for it. They may well contact one for you to authorise the blood tests there, arrange for one to come and see you in A&E of one is available, or you may strike lucky and have someone interested/qualified in autoimmune conditions who assesses you. I believe A&E can also refer you if you are particularly unwell on the day, or contact your GP requesting a referral (I think).

[StriatedCaracara]

I did not have health insurance but realised that NHS criteria and pathways did not work for just a strong positive ANA. I could not find evidence of NHS hospitals accepting patients like me i.e. lupus like symptoms but lack of positive specific immunological score - indicating possible Undifferentiated Connective Tissue Disorder. (Since then posted here and found there may be a few).

The Advanced Nurse Practitioner who referred me said that my NHS referral might not work because of mixed bag of blood results. The consultant I then saw said I did not have systemic autoimmume condition like Lupus or Sjogren's as I walked in the room🤷. This could have only been based on blood tests done by my GP practice which I had requested. The consultant did want to discuss symptoms even. They were not interested. The examination was brief and they actually hurt me.

After a while I settled ( it took a few weeks) and emailed the London Lupus Centre, London Bridge Hospital and asked if any of their specialists could help. I did not discuss what happened but just gave them blood results and listed symptoms. I said in my email I wanted to try hydroxchloroquine.

They returned my email listing three consultants. I then phoned and asked which NHS hospitals they each worked at and online technologies they each used. My first appointment used Zoom.

My GP now works very well doing bloods and telling me whenever I need to contact London Lupus Centre when he thinks I am flaring.

GP did say he would refer me anywhere in the country but I had already contacted London Bridge and organised things myself. Admin there have been brilliant.

The last three years things have turned around.

Hopefully at some stage the NHS will cater for those who seem to fall through the gaps.

Also care in the NHS needs to be available everywhere. I don't think people question the situatipn enough.

My Neutrophil to Lymphocyte ratio goes high when I flare.

As medication affects results this it not a measure some use. Most of their patients are being medicated, and using this only for the undiagnosed maybe is just too much for NHS processes 🤦.

For each full blood count I divide Neutrophils (which for me went up) by Lymphocytes (which for me go down) and record these figures. It was possible then to draw a graph, using the calculated ratio figures, with time along the bottom, and I saw the peaks.

Local consultant dismissed this - I believe though for an unmedicated patient this a useful measure.

When submitting bloods pre private appointment it is important to include FBC, eGFR and U&E - as well as the specific immunological testing you have had. I also forwarded ECG results.

[Jenfy34]

Have you had any blood tests?

[BeeManShrop]

Whenever I asked our GP about anything to do with AI diseases or SLE he used the term "that is beyond my pay grade" and he is a very good doctor. At one time my wife needed a blood test for another problem and I asked if he could also request a dsDNA test as I had been tracking the results for some months but there had been no tests for over 4 months. His answer --- "if I did ask for a dsDNA test I would not know what the result indicated" he then explained that of his surgery's 7000 patients (5 doctors) only 3 patients had SLE and therefore they, as a team, had very little experience of SLE.

Sounds like your GPs have the same problem.

[StriatedCaracara in reply to BeeManShrop]

In 2021 I was able to get ANA testing through my GP.

I recently requested ANCA and Antiphospholipid testing and they refused.

(A GP got back and said that they won't be able to interpret results and that they had tried to book them for other patients but system failed - they were not allowed.)

My concern generally, and wanting to help, has resulted in me joining the GP surgery patient group.

The background to this is I burst into tears having bloods done - one GP kept being very dismissive, saying I just had post-viral joint pain when I could not walk sometimes at work my knees so bad. The nurse taking the blood said I must speak to the practice manager and that she was in the office.

So the nurse got the practice manager, and I was still in tears - I don't normally cry.

So I discussed what happened and from then things improved. I joined the patient group too.

That was a few years ago. There is battle going on now, the situation is harder and more difficult - my feeling having been on the patient group is it helps practice admin and medical staff to feel patients understand and are behind them.

GPs now have patients that in the past would have been with a specialist, but who they can't refer succesfully as the system is broken. How can they be honest about it?

My personal view is referral pathways and criteria some NHS hospital departments adopt are not sufficient. They are sometimes aligned more to other things for example research needs, streamlining, costing and reporting targets. I feel this can limit care of some patients, particularly those with rare conditions and presentations, focusing on certain things and not others.

Also, we see things in tems of patient care but for some doctors it is not just about patient care. Specialists can vary in their interests, some wanting most of all to progress their careers, be recognised and maybe have time to write lots of papers and get on committees. They can then become the ones who decide the rules, the criteria etc, become famous, so you get a vicious cycle. They might not be the doctors who help lots of patuents, in fact they may be highly selective in who they see and not see so many. Some specialists though put patients first and are bright and can manage the politics and find a way of working through all this diplomatically. They too might also get onto the committees but also see lots of patients, and understand things maybe more clearly.

But going back to GPs whilst we have this restriction in hospital care, GPs are trying to fill gap when ill patients keep seeing them and they know the hospitals are discharging when they refer these patientd- as they don't meet the criteria.

The PPG is a good group. Meets quarterly usually online about half being at any meeting, including two staff reps.

I wish GPs could trial treatment with hydroxychloroquine..and refer when more treatment needed. It would reduce pressure on rheumatology who could focus on severe cases and when people are hospitalised.

Training and more resourcing are a prerequisite. It would also require Rheumatology bodies to reliquish a bit of power and want to enable others to extend the overall care available to patients and facilitate earlier interventions to reduce burden of symptoms and likelihood of organ damage.

[Stitchrunner1]

If you are in the UK you can change to another GP practice. You do not have to give a reason for wanting to change. Select the GP practice you think will best suit you. Go to that surgery and ask to join their practice. If they are accepting new patients, they will just put you onto their list. (They can't accept new patients if they have not slots. Otherwise it is as easy to change.) Also if you wish to stay at the GP practice you can request to see another Doctor.

I had a practitioner treat me poorly. I asked to make a complaint. You do this by going to your GP reception and ask to make a complaint. It seems a bit odd to ask if you can make a complaint but It only a request to start the process. When I asked, I was immediately able to speak to the practice manager. You may have to make an appointment. I just said that I didn't think I had received appropriate care and that my condition was not treated the way I would have liked. My practice then put me in touch with a senior nurse who went through everything with me. It was informal and very sympathetic. In the end it all boiled down to me not having a proper care plan. After that one was drawn up for me. I was able then to access my doctor immediately I had a flair up. They know exactly my background and we implemented the regime. Things have gone so much more smoothly.

I didn't get angry or accusative. I just put my point of view calmly. Once the senior nurse understood my complaint she absolutely agreed that things needed to change for me. I now have a really good relationship with my GP because we are both working on the plan. So try that and see how you get on. It doesn't have to be hostile and unpleasant. It is just asking for more formal care. Also if it doesn't get resolved and it does get hostile from the GP side, you can take your complaint further. Hopefully you won't have to. It worked out well too for the practice because it flagged up a flaw in the system that meant other people had not had the care plan they needed for the condition I was diagnosed with. No one else had realised you can get a plan.

[MdmButterfly]

Hi Milesy I can really appreciate how exhausting this especially when you are feeling so unwell. My GP wouldn’t do the relevant blood tests and when I had them ordered finally by dermatology he refused to send in a referral to rheumatologist even though I had positive AnA and very raised cardio lipoids, pronounced malar rash, joint pain, muscular skeletal issues with tendons extreme fatigue and bladder issues. In the end the musical skeletal specialist I was seeing sent in a referral for me November 2023.

I put in a complaint through the practice manager and requested another GP. It was a bit of a battle but I now have a much better GP. I’ve finally started treatment prescribed through dermatology but I’m still waiting to see a rheumatologist from the November 2023 referral.