To be diagnosed with Fibromyalgia, does it have to be by a Rheumatologist? My GP diagnosed me, would I still be able to get PIP?

[JessFM]

I was told (by a family friend who has FM) to be able to get PIP, I have to have been diagnosed by a Rheumatologist.

[CM1EDSUK]

Hi JessFM - PIP is not based on a diagnosis, rather your ability to do certain daily living activities &/mobility activities reliably. The following link will illustrate these: cambridgeshire.gov.uk/asset...

In the PIP claim form you do list your diagnoses, but it won't matter what type of Dr gave these. Your diagnosis will not be in dispute; as the claim pack says it's 'How your disability affects you.'

[JessFM in reply to CM1EDSUK]

Thankyou very much, I thought so

[aoifectcp in reply to JessFM]

I was asked on a capita assessment who diagnosed me with each particular ailment. I told the assessor they had permission to write to my gp for that information as I couldn't tell them. Fibro brain barely remembers day of week nevermind who or when diagnosed something 5 or 10 more years ago. I'm sorry I don't play those games. They have all the information they require on the form and if not then write back to gp or any specialist listed which at my stage is none as I'm off all their lists as chronic and just 'learn to live with it' type patient.

[onebigvoice]

Simply no, when you fill out the forms list the things in your medical history, and remember that some are undiagnosed, but can still be listed as an affect of what happens daily to you. It is only recently that DWP is excepting the de-habilitating conditions of FM, again I believe down to where you are, since if they need more information then let them write to the GP or people treating you.

[bunnygirly]

Hi my doctor diagnosed me and I get pip but I have epilepsy and asthma etc as well but someone I know off gets it for fm and her doctor diagnosed her x

[JessFM]

Thankyou, that is very reassuring. I have asthma, anxiety, depression and PTSD aswell as waiting for an Autism diagnosis x

[Ukulelelady1 in reply to JessFM]

I hope you do better than I, getting your autism diagnosis. I was referred to the clinic for a diagnosis and was told there was a five year waiting list, and because I wasn't working (due to health reasons), they wouldn't be able to put me on their list in any case, saying I had managed "all this time" (in my book, that depends on your definition of the word "managed", they don't know the problems I've gone through in the past because of it.)

Although, even though I couldn't get on the list, after we had spoken for a while, she did say I probably do have it. Not that it gets you the help that you need. I hope you have a better experience in getting diagnosed.

[JessFM in reply to Ukulelelady1]

Oh Blimey, 5years is a very long time especially when it affects your day to day life. Thankyou very much

[Ukulelelady1 in reply to JessFM]

I hope your waiting list isn't as long. The NHS is really strapped for cash when it comes to mental illness of any kind, they could do with more money, so I realise it's not their fault. I don't think a private diagnosis is accepted by doctors, from what I've read anyway.

[desquinn Partner Volunteer FMAUK Trustee]

I have heard this from people previously but also experience tells me it is not the case as per some comments on here. With it being so challenging to get PIP with invisible illnesses there will be people that will hang their success on a consultants letter. But realistically the opaque decision making system will have their own variables.

[Welshcatlady]

Hi JessFM as others have said PIP is awarded on 'how your disability affects you' not on diagnosis. I was diagnosed by my GP and get PIP.

[JessFM in reply to Welshcatlady]

Thankyou very much Welshcatlady , I feel more positive about it now. X

[Fudge57]

Just remember if refused, you can appeal. And if you have to see an assessor, then make sure you record it. As, many, many people have had issues of them not telling the truth or repeating, exacly what you have said. So, if recorded you have proof. You can look on the DWP website on what they accept the euipment it is recorded on. Good luck x

[cassduffy]

make sure you record all calls & keep duplicates of everything you send. try & get a welfare rights officer to help fill it in. remember its not designed to swing in your favour, so get help. this is a corrupt system who fight dirty. these companies are not here to help. they are there to trick people into complacency. im not trying to put you off, but its based on too many years of knowing this farcical and devastatingly appalling system & the countless i was helping with. gey as much help from your gp, but try physionor rheumatology referrals. Best of luck & dont be disheartened, just be thorough and remember how terrible this illness is. let no one diminish it who foesnt have it & probably will have no clue about it. it isnt specialists or doctors you deal with.

[JessFM in reply to cassduffy]

Thankyou very much, i used to claim PIP before just for my mental health but now I have FM Aswell. I photocopied everything i sent to them

[OldProgie]

PIP assessors will use any excuse to avoid a payout. On my last reassessment, they said I had not been properly diagnosed and therefore couldn't be suffering from any effects, but they also said I didn't have peripheral neuropathy which was clearly stated on my medical records. This was all overturned on appeal when I also had a diagnosis from a rheumatologist.

Basically, a doctor's assessment should be enough, but a rheumatologist's diagnosis will make it harder for them to lie about it.

Whatever you have, make sure you provide evidence and be prepared to appeal.

[JessFM in reply to OldProgie]

My Dr said to me when I mentioned about seeing a Rheumatologist that they are only interested in seeing patients if they have inflammation.

[Hazel_Angelstar Administrator FMA UK Staff in reply to JessFM]

That is true - many health board areas are now rejecting referrals for fibromyalgia from what I've heard

[JessFM in reply to Hazel_Angelstar]

Oh, I suppose that is ok-ish then. Part of me was thinking my Dr was just being a bit lazy or something.

[OldProgie in reply to JessFM]

I have no inflammation and had a referral last year. Tell your doctor you need it for a PIP claim. If they still won't refer you, ask for a second opinion. A physiotherapist may also be able to offer a diagnosis.

[JessFM in reply to OldProgie]

I have a telephone appointment with a physio on Wednesday so that I can start Hydrotherapy. I'll give it a mention to her. My Dr said to me that the summRy record I have of my health stating 'Active problems' is enough and if DWP want to know anything else that they will contact the GP office

[acrylicheaven]

Hi Jess, my GP diagnosed me too. This is the way some pathways are commissioned now. If your GP is prepared to write a letter backing you up, that's great. Some surgeries just won't do that though. And my GP letter didn't have the same depth as a rheumatology diagnosis letter,

If you think that you are short on medical evidence, something that's always valuable for the PIP process is an assessment by an occupational therapist. All local authorities must offer these free assessments for the elderly or disabled. The OT will work out which aids or supports you need to make your life easier. They can give you a letter or report confirming this. That provides incontrovertible proof of the help you need. In my case, it was things like a perching stool, a grabber, support rails etc.

You can find your own local authority's OT from this link:

nhs.uk/conditions/social-ca...

[JessFM in reply to acrylicheaven]

Hi acrylicheaven , My Dr said Rheumatologists only wants to see patients who have inflammation. My Dr actually diagnosed me with FM in November 2021 but never told me until the end of last month. It says it on my summary record. The Dr also said that if PIP want more information then they will ask for it because they have to pay. If i ask for a letter it will come at a cost also.

I haven't seen an OT before. I have a nearly 2 year old son and simple tasks like carrying him up the stairs and bathing him are a huge struggle. I don't drive either so its very stressful which equals pain going to and from doctors appointments or hospital appointments too. The physio is calling me today for hydrotherapy so i hope that will help.

Thankyou for your advice

[Ukulelelady1]

I was diagnosed with it via my doctor, but she did refer me to a rheumatologist and they also diagnosed me.