Totally P***ed off at my Shrink

[DNE92]

HI Peeps

So I got a re-assessment letter from the DWP about my ESA. I duly replied including very recent documentation I had showing my conditions and worsening of my FND. I asked my private therapist (yeah thanks for nothing NHS) for a letter before the deadline. She did an excellent and timeous response. Asked my NHS shrink. Nothing before the deadline. Then he phoned me and said he would do a letter. No problems I'd just submit it separately. Has he done it? Has he f**k. I was in intensive care only last month with it being touch and go with complications related to one of my FND symptoms. Family assembled, hysterical, at my possible departure (and they tell us that FND can't kill us. Bollocks!) Do health professionals understand. Like a lot of us I lost a highly paying job and am reduced to really depending on my benefits. Is asking for a letter really too much? I gave plenty of time for him to do it and he even phones. Do they think oh you've got mental health problems along with FND so you're a dummy with limited intelligence and you are right at the bottom of their priority list.

Sorry for the rant - I just needed to get things off my chest with people who understand and to avoid stressing my family further (which includes 2 kids) after the hospital incident.

Sorry.

Lou

[Renwick1]

Hi Louise I can see how frustrated you must feel. After I was hospitalised and in wheelchair for 4 weeks I asked them for a covering letter for benefits etc they give me such a glowing report you’d think a miracle had happened,what a pile of crap and so detrimental towards supporting a claim,it just made them sound good forget the patient.

[Katherinedeane]

many hugs - so sorry they are being crap - really get the stress - just redone my PIP - anxiety levels through the roof. IF you ever need help with these damned application forms I can highly recommend these guys fightback4justice.co.uk/ Hope your application goes well with or without that letter

[tabey]

Dear Lou

Hugs sent and im so so sorry your having all this crap.

its not fair that people with a long term condition are hunted in this way by the department of works and pensions.

they really need to figure this "FND".

It does harm them body in many many ways. you can rant away all you like

we are hear to listern and surport

Tabe x

[RobertWT]

Oh boy, Louyse

That sounds so familiar. My original, neurologist in Ireland never arrived at a firm diagnosis, a prognosis or a plan of action abandoned me (by telling my GP (but not me). Later having referred me on to Mark Edwards in St George's, he could not bring himself to endorse the application form from my health insurance co, already completed in detail by Prof Edwards. All I needed was a signature of an Irish neurologist. I wrote 3 times, my GP twice. My wife telephoned his clinic at least a half dozen times. No response. Nothing.

Result? Absent signature, the insurers declined to pay for travel and treatment and I had to self-fund. So I had to endure a further delay in getting necessary, effective and timely treatment.

But there ARE some truly great, compassionate and caring psychs and neuros, GPs and other medics out there. They may seem to be as common as hen's teeth, but, by gum, they do exist.

Please keep on fighting and writing. It is a fact that only if each of us does this, bringing attention to the inadequacy of the 'service', the general pool of knowledge and the underlying effects of this dis-order may we see a vrryvpositive change for the better for all sufferers with FND. It may seem like a Herculean task at times but by giving in to "them", the "what's in it for me?" brigade, we lose. We all do.

So polish your armour and cry "For God, England and Saint George's!" (or whatever the quotation from Henry V says) and fight on. Even if just to spite them! Oops, did I say St George's? Freudian slip?

Well done for articulating your own personal circumstances and for your amazing fortitude in facing life with such utter bravery. You are an inspiration in a world where super-heros are portrayed as extraordinary but true heroism comes with each fresh day, every step forward. You have my complete respect and great admiration. Words cannot express this adequately.

Keep safe. Virtual hugs on their way to you. Nihil illegitima carborundum -never let the bastards grind you down. They only think that they have a monopoly on knowledge. Our paths and stories are as much a part of the dis-order as their BMJ articles (which have their place). We have direct knowledge and experience which needs to be heard. Only with knowledge will we lead the blind to a place of enlightenment and understanding and then to forment a groundswell of activity towards a cure. Simples?

Robert WT