Fluctuating conditions & GP letter. Plse help.

Hi, hoping for a bit of advice.

I am currently in the SG (IR ESA), first placed in that group after a MR following ESA50 form submission and F2F.
3+ years ago I was reassessed (on paper) and kept in the SG. Due to be reassessed a year or so ago, I think. I don't doubt they'll be in touch when they're ready.

I do have a supportive GP but she's leaving. The GP I migrate to may not be so supportive (won't know me apart from info on screen). My GP's told me she will give me a letter of support before she goes in anticipation of DWP contacting me. Her letter is crucial as, after diagnoses by specialists a long time ago, I was handed over solely to the care of my GP. She is my only medical 'voice'. I am eager that her letter will be as relevant and helpful as poss. Am I allowed to discuss possible content, areas covered with her beforehand? Also, for how long would her letter remain valid?

My diagnosis is Fibromyalgia and CFS (F first, then CFS). In the GP's last letter that I sent along with my ESA50 (no f2f)), my GP didn't write how I am most of the time eg she wrote 'on worst days S can walk much less than 50 metres'. She didn't mention inability to mobilise in a wheelchair. On that ESA50, I ticked 'varies' mostly and elaborated. I was , to my surprise and relief, kept in the SG... *Is it a good idea to tick 'it varies'? It does...but can the DWP take that to mean what they choose it to mean? What is the answer for fluctuating conditions?

I feel that, this time, if my GP writes 'on her worst days' (despite being kept in the SG last time), that could be interpreted however the DWP wishes and likely not in my favour. And, I guess that alone would be enough alone to lose my place in SG.

Generally, if able to walk 50 metres (all but worst days), I'm only able to do so slowly and am likely not to able to repeat the exercise in a reasonable length of time, without increasing fatigue and pain significantly (need rest periods). Usually, on better days - few and far between - where I sometimes choose to push my boundaries and walk further, albeit slowly and with pain, I generally suffer post-exertional malaise (worsening of symptoms/ fatigue) for days after.
Re mobilising, then, what can I fairly expect my GP to write?
And, do I also need to ask her to say that mobilising a wheelchair for 50 metres would be too exhausting for me due to Fibro upper body pain, arm weakness and increased pain and fatigue afterwards?
I understand that I should remain in the SG because I cannot reliably, repeatedly, in a reasonable timescale, walk or mobilise 50 metres. Same for reaching, lifting, bending etc...not rel/ rep/ in reasonable time.
I have to pace to cope (physically and mentally), avoid situations I know will make feel worse... I need help with such things as hair washing (can't keep arms up). Aside from pain and fatigue, I also have issues with concentration so do not cook (chopping, using oven, heating things up etc).

Last time the GP did not mention PEM (post-exertional malaise) or the importance of pacing in order not to dramatically exacerbate symptoms.There is also inherent uncertainty with both conditions so I may wake one day feeling utterly dreadful even though I've stayed within my boundaries (another issue is unrefreshing sleep).Should I ask her to cover these areas? Also, meds help a little but there are limits to what I can take and they come with their own side-effects

The days I go out, a family friend takes me to their house - no stairs - in their car, and I am always accompanied (the furthest I have been alone in a long time is to the corner with mum's dog!) I get anxious about being alone outdoors and don't cope with social situations well. I rarely see family due to not being able to cope.

Last time, my GP wrote that I have some allergies which can be problematic but they can be disabling! I can be very environmentally sensitive and also suffer with sensory overload... ie bright light, hot temperatures, noise....doesn't even have to be loud, hustle and bustle, places that are newly painted, have been cleaned with strong detergent, strong fragrances etc can increase malaise, headaches, eye pain, dizziness, nausea etc, and cause a worsening of symptoms, especially if I don't remove myself.
One of the reasons I fear the WRAG is that I'd have no control over the environment and JC+ last time I went was a horribly lit, windowless, dingy place heaving with people & noise. I really suffered afterwards so I worry about extended periods in places that make me feel worse, not being able to escape etc.
I am also concerned if placed in WRAG that I'll get sanctioned if I can't make the appt. (a strong possibility)... What happens if you are just too ill to go?

I also have horrible anxiety and depression too because of the impact of these conditions on me. I have not tried to claim PIP (can barely cope with ESA) but am fortunate to have good support from mum and friend)

Anyway, I'd really appreciate some input as to what things I should reasonably ask my doctor to put in a letter to achieve the best possible outcome.

Also, perhaps one for the mods: I'll have to ask my friend to help fill the ESA50 when it comes. Do I need to say which parts I / they filled for me (words from me)? I don't have a PC so am not sure about the ESA50 pdf method. Can they do it for me from their email/ or one I get for the purpose if I tell them what I want to say?
Sorry for all the questions.
Thanks.

Thank you Gordon for the information .

I understand the advice not to guide my GP but can I ask her to quote DWP's own words back at them: 'reliably, repeatedly and in a reasonable length of time' in a letter (because with fluctuating conditions that is sort of the point)? Or might that look a bit strange to the DWP?

Also, can you advise, Gordon or anyone else, whether ticking 'it varies' would more or less preclude me from remaining in the SG? It's hard to tick one box with variable conditions but I generally need to pace (have rest periods) between activities/ tasks. I don't know how true it is but have read somewhere that it's not a good idea to tick 'it varies'...

Also, the ESA50 is pretty black and white... I'm not sure where to mention difficulty with environments or whether to ask my GP to address that in a letter. Would they even take that into account?
Sorry to ask more questions but I'm very aware that my long-term doctor is leaving the surgery very soon and getting as supportive a letter as possible is key (I've no idea how supportive the next doctor will be, who won't know me at all).

Lastly, if I attempt some of the form myself and ask a friend to take over, do we both sign and explain who did what in the additional box? Or is better for only one person to be responsible? I only ask as my friend is great but I don't want to trouble them too much if I can help it.

Thanks so much, and I understand if there are parts of this you can't answer, Gordon...but I would also appreciate info from anyone else out there with Fibro/ CFS or other fluctuating conditions?

Thanks again Gordon.

Thanks, Gordon

That's weird - unless the ESA50 has changed - because on the last ESA50 I had to return (end of 2014), on p7 Part 1: Physical functions, there is a box above 1. Moving around and using steps with the following guidance:

To answer Yes to any of the following questions, you must be able to do the activity safely, to an acceptable standard, as often as you need to and in a reasonable length of time.

As the 1. Moving around and using steps section says: How far can you move safely and repeatedly on level ground without needing to stop? For example, because of tiredness, pain, breathlessness or lack of balance, I naturally interpreted the above guidance to mean that the ESA50 wants to know what you can do without ill effects...reliably (ie safely and to an acceptable standard), repeatedly (as often as you need to) and in a reasonable length of time...

Am I missing something, Gordon? Has the form changed in this regard? Can you or anyone confirm if this guidance has been removed from the form?

I have no idea what to ask my doctor to write... Last time she wrote 'at worst' but I don't know if that's good enough to keep my place in the SG...

I am not sure what you mean about different elements to the descriptors... Will I find that in the guide here?

Re the environmental stuff. I just mean that being in certain conditions/ environments, especially for prolonged periods, can make me feel much worse in various ways (eg high temperatures, strong chemical odours, harsh lighting etc...) This is, together with pain and fatigue variability, why I worry about being in the WRAG and having to attend JC+ . I mean, what happens if you just can't go? Sanction? Surely even the despicable DWP must realise those in WRAG can't predict with any certainty when they will feel too ill to attend and cope with WRA.
Thanks for the form-filling with friend info.

Thanks, Gordon, for all your advice so far. I appreciate it.