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NHS Clinic Referral - Is this sensible?

Discussion in 'ME/CFS Doctors' started by youngscum, Sep 6, 2019.

  1. youngscum

    youngscum Established Member

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    I live in the UK and have had ME for over 20 years now, spending much of that time claiming disability benefits. A few years ago I came into some money which meant I didn't have to jump thru the hoops of the process for a while, the stress of which I find very difficult, so I have been living off of that since then. However, that is now running short and it seems I will soon have to reapply for ESA, and possibly PIP.

    I recently read a piece on PIP applications in a support group newsletter that stated that applicants find it very hard to get awards unless they have a support letter from a local NHS fatigue clinic. Is this true? I last had dealings with people from my local clinic over a decade ago (they were appalling) and have no intention of going back there, and my previous DLA applications have been supported with reports from my GP, who I saw regularly, and information that I'd had treatment which had failed in the past.

    It feels like a very odd requirement, given that so few patients would have passed thru them recently enough for the clinic to have good knowledge of their condition: my understanding of how they function is that, if a patient doesn't require "treatment", then they are discharged back into primary care, and that treatment programmes, such as they are, don't last very long anyway. So, would it be a sensible idea to get myself referred to one of these places if I had no intention of doing CBT or GET again? Is this just a wheeze to make sure as few people with ME get benefits as possible?

    I'm curious as to people's experience with these clinics, as to whether they ever just oversee patients without pushing them into treatment, and also whether the lack of their support has often been cited as a reason for turning down the claims of any UK forum members.
  2. Trish

    Trish Moderator Staff Member

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    My daughter and I both got PIP in the last couple of years with the only medical evidence we had being from our GP who wrote letters for us stating our diagnosis and how our lives are restricted by it. We had both last been in touch with our local ME clinic about 6 years earlier.
    I think in our case it was more important that we had help from the local Citizens Advice Bureau welfare worker filling in the forms for us, and the fact that I employ a care agency for some personal care. But most of all we were lucky to have an honest assessor who believed us.
  3. NelliePledge

    NelliePledge Moderator Staff Member

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    UK West Midlands
    Not sure what your circumstances are @youngscum cant see your original post. If you’re working or off sick you might find it helps with your employer taking the illness a bit more seriously if you get a referral from your GP. Don’t expect that much from the clinic you might well not get any help with Benefit claims as some don’t do this and make you go back to the GP.

    You’d be well advised to read up on CBT and GET (have a look at the information on ME Association website under what is ME) before signing up to any form of programme so you can decide for yourself in full knowledge of risks. If your ME is at the milder end and you decide to do any kind of programme understand they can’t actually force you to undertake any activity. And depending on how pushy the people you’re in contact with at the clinic are you might judge it’s better to just tell them what they want to hear rather than risking them perceiving you as a difficult patient.

    That sounds cynical but I think sometimes occupational health or benefits assessors will try to use the fact that people who are at the milder end of ME but haven’t gone through CFS clinic to say this person hasn’t tried all available “treatments”. It’s a bit of a dilemma really. I did a CFS management programme which didn’t help whatsoever but the fact I’d done it was noted by the medical adviser who assessed my ill health retirement application.
  4. hellytheelephant

    hellytheelephant Senior Member (Voting Rights)

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    Same goes for me except my assessor screwed me over and I had to go to appeal. I don't think it was anything to do with lack of evidence though. Citizens advice were amazing and will support you if you need to appeal later ( we had a retired solicitor who volunteered to come with us). I don't have any link with a 'fatigue clinic' and the waiting list in my area is super long anyway.

    One piece of evidence I did was a diary going through the day, showing activities and the result after activities ( it is not reasonable for them to expect you to do activities that will damage your health). There is a diary you can download on the CA website). The key words for answering PIP form are SAFELY, RELIABLY, REPEATEDLY.

    It is good to think of specific examples you can give of when you either did an action that made you worse ( walking, making a meal, showering yourself) or were not able to do an action at all without help.

    @youngscum - personally I would not sign up for a clinic plan as I know from bitter experience how much worse I can get from this kind of programme ( GET etc).

    Good luck!
  5. Annamaria

    Annamaria Senior Member (Voting Rights)

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    ...and in a timely manner.
  6. youngscum

    youngscum Established Member

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    Thanks for yr replies.

    @Trish, I have a local advice centre that I was thinking about consulting who have been helpful with other stuff in the past, so that sounds like a good idea, thank you.

    @NelliePledge, I had GET many years ago and it ended badly (I was unable to keep up with what I was being asked to do and was accused of playing games to spite the therapist). Tho I have improved a lot since then, I'm still limited, esp in terms of concentrating for long periods, coping in noisy public areas, heavier exertion, can't shop, clean up, travel, etc, and need assistance with a bunch of stuff. I'd say I was moderate rather than mild tho. I wouldn't go thru it again, I was more wondering if these clinics would oversee patients rather than pushing them into treatment programmes, in light of the importance that the article I read seemed to be placing on engagement with them. From what I've seen, and also read here, that doesn't seem to be the case tho and I think I'll just stick with my GP, who isn't as good as my last one but is still good and supportive from what I've seen so far.

    @hellytheelephant I worry about being screwed over too. I pulled out of a claim before because I was too ill to cope with the stress of it and, tho I'm better than that now, I wonder how well I would cope with an appeal, which I haven't had to do before. I did think that waiting lists would be a problem, but it's academic now, I feel comfortable in my decision not to engage with the fatigue clinic now, the piece I read made a big fuss about it but it felt like a dumb idea.


    Thanks for all yr help and advice.
  7. JemPD

    JemPD Senior Member (Voting Rights)

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    @youngscum I think essentially they will clutch at whatever straws they can to avoid paying out, so possibly they did use the "not under a fatigue clinic" thing, but that seems no reason to go to one, since they also find ways to deny those who do have the support of a clinic. And also if you happen to have a lucky break with a good assessor they give awards to those who have no support other than GP.

    But yes do get support & best of luck when the time comes.
  8. Wits_End

    Wits_End Senior Member (Voting Rights)

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    UK London
    I fear that depends on your location: mine told me they didn't get the funding to help with appeals :(
    hellytheelephant likes this.
  9. Kitty

    Kitty Senior Member (Voting Rights)

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    There are other services with extremely knowledgeable advisors, including Benefits & Work and Fightback4Justice.

    By the way, PIP isn't means tested, so you can claim even if you still have capital that would disqualify you for other benefits (£16k or more). It might be a good way to start, as being awarded PIP would to some extent support a later claim for ESA.

    It's best to have support from someone who's up-to-date on both the descriptors and the way they're applied, and recent case law. Maybe consider subscribing to Benefits & Work for an annual subscription of around £20, which includes access to guides and a forum where you can ask specific questions; or join Fightback's platform for a monthly subscription of about £11, which includes access to a bank of well-completed forms submitted by people who got an award, having an advisor review your form before you submit it, and a priority phone line to ask for specific advice (you can cancel the sub easily as soon as you've finished your claim). If you pay their travel expenses, Fightback can also provide you with someone to be present during a face-to-face assessment.

    Good luck with it. It's true that people have really poor experiences and struggle to get an award, but there are some decent assessors out there too.
    Wits_End, hellytheelephant and Trish like this.

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