I’ve been back and forth to the GPs and consultants for nigh on 20 years. Referral requests have either been declined or basic bloods taken resulting in me being pushed back to the GP and back to square one.
Many on here if not all will relate!!!
As my condition has deteriated dramatically these last few years I now feel I need to get my struggles on file.
I’m in the process of drafting a mail inclusive of a spreadsheet of symptoms which now number around 100 obviously some are quite minor though abnormal but quite a few have been and are destructive/life changing. Part of the draft is to ask for more investigatins to be carried out and for more support to be provided. I’ve stated that I’ve been left to fight this alone except for basic CBT sessions which are useless against such a disease and that CBT is common sense ‘ide already adopted such practices years ago’
I’ve included one or two scientific papers to corroborate my symptom list and to back up the existence of PFS.
My intention is to not only see what can be offered via the practice but to push PFS through the NHS tiered system and to hopefully get it recognised more widely.
Has anyone got any suggestions of what I should include to help push this forward/add weight to the case.
Additionally im not aware of anyone getting a legal case off the ground in the UK. To push this door open I’m going to contact the law society for advice on a joint law suit. Most of us have had kick back from the no win no fee law firms.
There is also a journalist who I’ve been in recent contact with who seems very keen to get our story out there, Hopefully it will cover the true horrors of PFS. I will keep you posted.
Any suggestions/ inclusions for the GP mail would be appreciated.
Regards