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 😞😞😣😩😩
Gp won't reffer me to rheumatology : Spoke to gp... - LUPUS UK
Gp won't reffer me to rheumatology
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Milesy79
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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.
Hi they done a dsna and another but they were negative, my folate was low and platelets above ref range, they have been climbing over last year. I've took photos of ulcers, Dr didn't want to know.. I put a complaint in today they have just documented rheum concerns haven't even got back to me 😞😞 xx
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!
Thankyou I put complaint in this morning said I want happy and feel completely fobbed off. Said the duty of care is nil and I'm fed up of feeling like I'm dying nearly everyday, it's affecting my daily life massively xx
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.
Thankyou so much x complaint in this morning see if anything comes of it xx 🙏
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.
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
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.
I paid and went to the hospital for rheumatic diseases in Bath. You might have to go that route.
I'm considering it to be honest. Take me couple months to save but if it gets me somewhere it will definitely be worth it xx
I don't know if anyone said but you can have an initial appointment privately and transfer back to NHS. I did. I go to Bath as they are a Lupus centre of excellence. Have a look on Lupus UK website and they will have info on all the Lupus centres of excellence in the UK. There are only about 8 or 9. I am at Bath and get pretty good care there but I do live within an hour of Bath. Look up a Rheumatologist specialist in autoimmune near you on the Bupa website maybe and then email re. fees. They will transfer you back to the NHS after but you may not be able to choose a consultant once transferred back to NHS. Anyway save the pennies its worth every one if it gets you further down the road. Don't forget to take a diary of symptoms and pictures and any medical notes it helps a great deal. At least you may know or be closer to knowing what you have even if it isn't Lupus. xx
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).
Thankyou I nearly went to A&E last week because of the pain, I should have realy. If I no luck I'm going private x thankyou xx 🙏🙏
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 situation 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.
Thankyou. I've seen the London lupus centre somewhere else. I will look it up. Thankyou that's very informative 🙏🙏
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.
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 terms 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 patients, 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 patients, as they don't meet the criteria.
The patient group 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.
Maybe hospital departments could also have patient groups to give patient perspective more.
Absolutely that is a great idea!!! Well done for joining to 👍🙏 x
Wow that's a very truthful Dr! Those figures makes sense x
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.
I never knew that. I put a complaint in today. I will see where it gets me. I'm hoping someone will contact me. I said I felt I got no where and was fobbed off. I said when I asked her if I was to just except I feel like I'm dying everyday and that's OK is it she just said Awww sorry.. Just couldn't believe it honestly. Xx
Word of warning l! Stay calm. Before you have your meeting if you get one, prepare. Put aside your disgruntled feeling. Make a bullet point list and think things through carefully. It is very easy to fall into the trap of countering and ranting. It is too easy to let your anger and upset get the better of you. Remember the aim is to get a plan not to vent anger. By all means say you were angry but don't BE angry when you are putting your case. If you go in all guns blaising the surgery will just hunker down and treat you as a trouble maker. The important thing is to make sure you achieve your goal. To be heard and to express your needs. It's ok to feel dismissed and to feel you didn't get what you needed. It's quite another to be accusative and personal.How I approached it was to say I feel ill all the time and I don't think the practitioner realized just how ill I feel. I have been struggling day after day. I wasn't able to make them understand. Then I gave a couple of examples. I slotted in, I don't they listened quite well enough this time.
It seems as though I see one practitioner then another and my care isn't linked up.
( As an example I said, I think it would be helpful for me to have a plan so we all know where we stand. I need to know how many pain killers I should use and then I can have medication on repeat prescription and I can just access the service if I need my emergency meds and they can go directly to the pharmacy on request.)
It would help you a lot to have an idea of how they can help you. And unfortunately you will need to accept that there are things that they really can't do. I have had to learn to manage my pain, it sucks but it's the way it is.
If you complaint doesn't go the way you like, you can still change your GP.
I hope this is helpful. I am just trying to help you make it go well. You sound so fed up and angry, which trust me I get that. I did too. But you need to give them the responsibility and not get yourself in hot water by being angry and getting a nuisance patient label when you are clearly not.
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.
It's unreal isn't it.. Surely things need to change to help peoples suffering. I had 3 week horrendous joint pains even anti inflammatory and zapain I take for my 6 year back pain hardly touched it.. Felt like I was dying honestly.. If my memory wasn't so bad I'd look into training to help people with auto immune problems. Think it's lacking in it in the UK. Xx
Sorry you have had problems with your GP. I have had Lupus for 22 years and have never had a rash. I would suggest asking to see a different GP if possible.
This GP seems to be ignorant, arrogant and even too lazy to write a letter of referral to someone much better qualified than herself ie (a hospital consultant in rheumatology) in the COMPLEXITIES of lupus diagnosis and treatment.
This is well below standard.
Hopeless.
I’m extremely concerned for you.
A probably insincere apology is not good enough.
She needs retraining and/or reporting .
Not a single one of my many lupus conditions and manifestations has ever been diagnosed OR treated by a GP. GPs are simply untrained and unfit to diagnose lupus. No way!
Seek guidance from PALS!
Keep challenging!
I know how u feel. I had the rash and all the illness to match. Even when Arthritis wagon arrived in area, I asked for information on lupus back in the late 90’s. She looked at my face and asked “ y have u got it”. I hacked y and she replied because of the rash.
I was referred to hospital and I was 1 point out on test and was told I didn’t but have fibromyalgia. I gave up with asking since because u just hit that brick wall , and will do till u can see someone who works in that area and is very converse in this area.
Good luck. Keep trying.
That's terrible hun.. Just ignored aren't we xxx
time for new gp. Too many are stuck in the mode of not using their brain to help their patients find answers.
Yes she basicaly just left me hanging 😔😔 xx
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