Can rheumatology refuse referral for diagnosis from GP?

[Panacotts]

Having attended Bath clinic for therapy and advice and only managing to work part time due to pain and exhaustion I asked GP for a formal diagnosis she referred me to Rheumatology who refused the referral and suggested GP should make the diagnosis. I need to try and claim PIP as I don’t have sufficient funds to follow recommendations made by the Bath clinic ie diet and swimming. Will this be sufficient for PIP?

[Dizzytwo Moderator]

Hi there, good morning. PIP is based on how you feel and your capabilities to do things. So putting a name to your illness does not always make much difference.

You could have RA, Spinal problems or fibro for example. The questions on the form would be the same.

Its all about how it effects you not so much what you may or may not have been diagnosed with. I am not saying it doesnt look better when we can put a name to the problems. But it shouldnt stop you filling out a PIP form.

I have had fibro for over 40yrs. And when I applied way back in the day I had no diagnoses because there was none. I did get turned down.

Then some years later I did get diagnosed with fibro. And again got turned down.

Sorry not trying to be a downer. But I just want to show. You dont need to have a diagnoses for PIP. You have nothing to lose if you are in need of support. Good luck.

Momo

[Hazel_Angelstar Administrator FMA UK Staff]

Yes, it is becoming more common for rheumatology to refuse referrals for fibromyalgia diagnosis (unless there is a query over it being something else)

Your gp can make a diagnosis, and the royal college of physicians have diagnostic guidelines available on their website

[Panacotts in reply to Hazel_Angelstar]

Thankyou that reassures me !🙂

[Welshcatlady]

I was diagnosed by my GP and I get PIP. As Dizzytwo said it's not the diagnosis but the way your condition effects you. Good luck.

[Iamthemedicalmystery]

The same thing happened to me, but I now get enhanced on both. Its meant to be about how it affects you daily and not the diagnosis.

[Hoofprints]

As there is no definitive test for fibromyalgia, I would argue that this is all the more reason why a referral to a rheumatologist at the outset is needed to rule out other autoimmune conditions, including some other rarer ones. GPs are not specialists and cannot run all the blood tests that are available to a rheumatologist to run in a hospital setting.

Once you receive a diagnosis of fibromyalgia, in my experience virtually any symptom you have or develop becomes ascribed to it - rightly or wrongly. It's then even harder to get tests to check it's nothing else going on because you are labelled. This was my experience - even when the NHS was not on its knees as it is now.

I think there was a push in the NHS a few years ago for GPs to start making the diagnosis of fibromyalgia without referral to a rheumatologist. No doubt this is to save money and lighten the load on the NHS, rather than to benefit patient care as fibromyalgia is a diagnosis of exclusion - i.e. should only be made after other conditions have been properly ruled out.

Ask your GP what tests, blood tests especially, they have run on you so far. Get copies if you can.

Have your bloods been checked for rheumatoid factors, complement system been measured (C1, C2, C3, C4 - these can indicate autoimmunity where it fails to show in other tests), has your ANA, ANCA been tested? Your GP should be able to run some of these but not all .

For example, they won't be able to run the antiC1q antibody test. It was this blood test run after 20 years of being diagnosed with fibromyalgia that actually revealed I had a rare form of vasculitis that presents like Lupus but is negative on blood tests for ANCA & ANA. I had always believed the diagnosis of fibromyalgia was wrong and that I had an autoimmune condition going on.

Perhaps ask your GP to re-refer or alter the referral letter to request the hospital consultant run tests to rule out an underlining autoimmune or similar condition. Don't make the diagnosis of fibromyalgia sound a concrete one in the letter, but a tentative one alongside a suspicion that something autoimmune might be underlying it.

Goid luck 🍀

[Cat00]

Equally I have Fibro, Chronic Migraines, IBS Bladder Pain Syndrome, Hypermobility, Osteopenia, Chronic Insomnia, Panic Disorder, Raynauds and ADHD and I got turned down for PIP. I go to the gym and I have two young children so I was deemed "well". It's not about the hardship of having pain, it's about whether it interfers with your day to day functions. I cook dinner for my kids so that counts as cooking dinner, even though I'm often too tired to make my own. I can have a shower, so the fact that I don't have baths bc I find them too painful doesn't count. I go to the gym because that is what the pain clinic said I should do, so I have mobility even though the process wipes me out for a few hours.

If you are applying for PIP you need to convince them you cannot do fundamental things for yourself safety and regularly. My husband got cancer when he was 30 but bc he could still work, the fact that he was potentially dying didn't count.

It's all about the day to day.

[Farmerboy in reply to Cat00]

I hope you put in for an MR after your refusal of PIP. When applying you need to word your answers for each descriptor carefully giving examples of why you can’t the difficulties you encounter and the extra time it takes and and mishaps that have or do happen especially safety issues . Use extra pages if and when needed putting the question number plus you identify details on each page.

[Cat00 in reply to Farmerboy]

It's not for me I haven't got the energy. I used to get DLA but I had to go to tribunal for that even though I had people from the hospital speaking for me, and that was for the lowest rate. When it changed to PIP they brought me in for an interview and gave me no points. But to be fair I can dress myself, I can cook, I can drive and I can communicate so it's hard to argue. Plus even after tribunal you still have to fight again every year, I just can't cope with the stress. I don't work bc I can't cope with the stress as it is.

[Farmerboy]

good morning, to many people think or believe that they are or should be awarded PIP because they have a diagnosis or on the supposed list of medical conditions that are eligible for PIP. The benefit PIP is awarded on your inabilities to preform the PIP descriptors safely repeatedly and in a timely manner. People assume that once diagnosed they will or should be awarded PIP I know from my personal experience the problems that arise from claiming and hand on heart I have had 2 F2F assessments and one paper based change of circumstances which I did an MR. By doing a self test for PIP will give the person thinking of applying a very good insight to their chances of being awarded PIP.

[Midori]

It should be enough, I think your GP is being a bit overcautious, but, don't worry.

Cheers. Midori

[Vontrap]

Hi. My doctor doesn’t refer Fibro patients to rheumatologists

[Sallybones]

my GP surgery makes a point of not referring you for anything if they can avoid it and it will take 6 months for them to do so. Mind you they have bad press with most of our area hospitals now. This is since it was bought out by a big business group only interested in profit from the nhs.

My experience is once you have fibromyalgia / cfs / chronic fatigue on your record they will put everything down to that now even if you have other serious diganosed conditions.

[MaryBr3]

Is anyone else concerned that rheumatologists are the only referral avenue for fibromyalgia patients yet they have no time nor interest in us? We’re being failed over and over.

[Brigga]

Yes my referrals to rheumatologist was sent back twice. I’m now with the Chronic Pain Clinic who have tested me for everything anyway. I was upset at not seeing rheumatology at first but the Clinic I see now have more knowledge and expertise in Fibromyalgia.