Please can anyone suggest/ recommend a fibromyalgia specialist to write a review report for an appeal re ill health retirement pension? I am in the last stages of one Appeal and possible first stages of another. I am being refused as I ‘could get better before my pensionable age’ and in any case they consider my symptoms to be functional and not organic - and I have always worked before. I have until March to produce new medical evidence for the Appeal; and have until Feb 11 to accept the refusal of my application from my other Pension Fund.
Many thanks,
Maxine
Written by
Max3
To view profiles and participate in discussions please or .
When I needed a similar report, I asked my Hospital Consultant and he said it needed to be someone who had not treated me, if it was to be taken seriously. He recommended someone, I contacted him and we agreed a cost which I think was over £3,000. I got my pension and I asked them to meet the cost, as their first decision was unreasonable as they could have commissioned a report, rather than me. They paid up. The guy I saw has retired but your GP or Consultant should be able to help you find someone. Failing that, contact your local private hospital and ask if they have a Pain Management or Rheumatology Consultant who writes such reports. Tell the pension scheme who you are getting a report from and ask for an extension of time.
You do not say how old you are, but if you are under 50, it may well be an uphill battle as the cost of providing medical retirement is huge for younger people and they always argue that you could get better or improve.
Thank you. I am 59 in May. One of my pensions is due when I am 60; one when I am 67. 3k! I do not have that sort of money. And all of it is causing such a strain. Some of my symptoms are cognitive and I feel like I am in Looking Glass Land. It has got so that I implode at the simplest question because I have been put off for so long and it is triggering past health issues. And when I make contact they can barely understand my request because it is so complicated. My GP suggested Dr Jenner too as well as two people who have already seen me in a ‘one-shop’ Fibromyalgia meeting. I was put in contact with a community group to support the process but they cannot organise support in time to meet Pension Fund deadlines - just as the GPs could not organise referrals; or the specialists, treatment in time. This always puts me on the back foot. The pension fund people behave as if I am well enough to manage this process when I struggle to do anything.
You could try Dr Chris Jenner at the London Pain clinic. He’s very knowledgeable - and actually diagnosed my FM (NHS was not interested and kept telling me my symptoms were just part of having RA).
Obviously it will cost a fair bit to get such a report, though. Good luck!
Thank you. He is too busy.?I got in touch and sadly he says no: that ‘such cases take a lot of time’ and he ‘... is unable to assist with this case at this time...’ I have asked if he recommend anyone else. (My GP cannot refer me as in a different health authority).
A MRI scan has shown changes in my spine. Where nerve endings exit spine is narrowing and squeezes nerves so at least I know it is happening and is not my imagination. I always knew but I think that was what was being argued 😔 - Whatever happens that must have changed something. Hopefully it will change my medical treatment as I am still in pain. But without a report from an authority, the ill health/ deferred pension thing is not going to go any further and it is too little to late from the NHS. Pain management service wanted us to ‘learn to live with it’ and refused my request for a scan in 2017. I had only ever had one in 2013 although diagnosed in 2000/01. Just trying to get my head round this new development but I also need to focus on keeping warm and trying to get sleep. Not a good time for any of us ...
Hi when I needed a private report for my ill health retirement I looked up local private hospitals with Rheumatology departments and rang to book an appointment with one of their consultant rheumatologists. I was seen within a week and it cost around £250 for a twenty minute consultation and them to produce a note stating I had tried all relevant treatment and was unlikely to improve before retirement age (I am 49).
I was seen in a one-shop Fibromyalgia clinic at St Thomas which was in the Rhuematology department: they agreed that I probably shouldn’t work again (they were vague on that in the actual report so the Pension Funds are not buying it). The one-stop Fibromyalgia Unit focused on my local Heath Authority offering me community support especially mental health; said I’d have to look there for my mobility and transport issues, and said work obviously meant a lot to me so maybe I could do voluntary work at some point in the future. Not helpful as the local physio would not follow up on physio for chronic fatigue when they read this. No one will say they can’t do anything more because they haven’t really done much so don’t know.
I have just had an assessment fro a community physiotherapist who had no records so the retelling of medical history was hellish - writing this now I realised I’d forgotten about the chronic fatigue.
My scan result also today shows there is a neurological problem with my neck - nerve endings comping out of my spine are narrowed and narrowing. This may mean a referral to Neurology department but it is all too late for my ex-employers deadlines.
I have contacted Dr Chris Jenner’s clinic but they responded that I should come for treatment (and did not mention the situation and necessary report that I was outlining). If I could handle all this (and able to move without constant pain), I would still be working ... as it is I keep forgetting things and then they ignore what I do say.
Sorry you are having such difficulty. I had to go through two appeals and get two independent reports before I finally got awarded my civil service pension. They kept questioning whether I’d had all possible treatment and whether it really was likely to be permanent. I’d already tried pretty much every medication, physio, cognitive therapy etc (I’d done a pain management programme at a local hospital). And both private rheumatology reports stated my Fibromyalgia was severe, all appropriate treatments had been tried and it was unlikely to improve. In the end I got to the final stage of appeal, which was an independent panel. The panel meeting lasted about ten minutes and they told me they couldn’t understand why I hadn’t already been awarded full pension. The whole pension application process was one of the most stressful experiences of my life,
Thank you. Hearing everything helps. I am at my wits’ end. I cannot tell you some of the conclusions in the pension fund reports! Would have been funny if not so insulting. I was about to withdraw as so stressful. But have contacted a private pain clinic to review Pension Funds report. My Pain Management clinic experience, last in 2017, was dismal. Lost appointments, long waits sitting or even standing, really cold assessment areas and a sort of mild contempt that any of us mentioned pain ... unless there was a user survey to complete! Focus was on psychological support which meant CBT, requiring child-like replies or else you were off the programme. Eg ‘What would big Maxine say to little Maxine if she could speak to her now?’. Big Maxine promptly requested another MRI scan as she couldn’t hold up her neck and that was refused as “everyone asks for that and there’s never any difference, so ‘no’”. I need to add that my previous and only last scan had been in 2013. Today, 2021 scan results (ordered by a GP) show that changes in cervical spine where the nerve endings come out from meant they are being squeezed. Apparently it also effects nerves in legs which explains so much. Holding my breath that this makes physical what has been called purely psychological ‘catastrophising’ when I shy away from pain. My psychological symptoms are the depression, anxiety and self-doubt (which made me force my body to carry on in uncomfortable and then painful conditions) that this process has caused. I was diagnosed at 38, am now 58, worked so hard to keep up and missed the joy of most of my middle age as until 2020, I was being treated as if I was wrong, not wanting to work although I was pleading for help to retain my job, or at best as if I made this condition happen - and any co-existing ones that were found. So stressed that this is my last shot at both ill health claims.
Sorry to dwell on it but people may wish to see the experiences of others.- I am going to ‘let it all go now’ whatever the outcome (and am paying for private therapy to do that!) Go figure! 🤣
Don’t give up, it’s worth going through all possible stages and appeals. And definitely worth getting a private report to back you up. One of the private consultants I saw listed loads of evidence in his report which showed that people with fibromyalgia rarely improve over time, and linked that to the fact I had severe fibromyalgia going back many years. Also, during any private consultations make sure you tell them the criteria for your ill health pension (mine was something like ‘health renders incapable of doing my normal job and that is likely to continue to normal pension age’. Then they can directly address that point in any reports.
Trying to find a private specialist. Had always sent pension fund criteria to NHS staff but they did not really address it; and were reluctant to put in writing what they said to me.
Dr Jenner is busy currently (see reply above to LoneEra). Asked him to suggest anyone else.
Now MRI scan shows changes in my spine but it may be too late without a report from an authority the pension funds will accept.
Not sure where you’re based but I saw Rheumatologists at both Pall Mall and Spire hospitals, if either of those have a base near you, I just rang to say I wanted to book a private rheumatology consultant, then explained what I needed to the Rheumatologist during the consultation, Good luck, Tracy
Thank you! I am in London. Am at third stage of Appeal Refusal for one application and third stage of application for the other. MRI scan has shown it might be a neurological issue, so I might start there. Possibility that my GP might write a letter now that scan has come in.
I got a letter from my gp at the third stage of appeal as well as a letter from a second Rheumatologisf and was approved at that stage so certainly worth a go.
Thank you so much. Rheumatologist and physiotherapist wrote reports but did not want to say I will never work again - which is what is demanded by my pension funds. GP wants to try another neurological referral before writing letter. Deadline for one pension will be missed and I may not meet deadline for the other - end of March. Have been told by Dr Chris Jenner that it is hard to treat and so takes time; and, to forget Ill health application as ill health hard to win. His colleagues agreed. He won’t recommend anyone else either. I just want treatment but cannot afford to be treated at a private clinic without a pension. Or am overview. Needed to rest after each reply and am getting very depressed as well as physical symptoms.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Advice needed to appeal for early ill health retirement 
Undiagnosed Fibromyalgia
Diagnosis of fibromyalgia 
Fibromyalgia and PIP claim and appeal 
Has anyone been to see Dr Chris Jenner - Fibromyalgia Specialist in London?
