Multiple sclerosis sufferer waited more than a year to be diagnosed and suffered 'significant injustice'

B

bobbler

Senior Member (Voting Rights)
https://www.walesonline.co.uk/news/...ig6Y0hhC3SYsLOC_iXu3D4iSxmNyoMRKlJ9N2WbleYXpY

An article in a Welsh online.

I've put it here because even though it is a different illness in political terms this seems highly significant in thinking of current discussions of FND type things and neurologists but also the pattern of things many with ME/CFS find.

It is to be lauded this person followed their complaint up this far (must have been stressful). And very interesting to see the Ombudsman response unpicking these procedural things that happened (including before and then through the complaint process) and their view of it.

The local health board sent him to an English trust where he saw a neurologist. It is worth then unpicking what happened (the ombudsman says at first he noted 'indicative of a physical disease' then later attributed it first to a bad back then to psych).
 
That the Ombudsman wasn't swayed by what I assume might be the usual excuses re: what were misdiagnoses/fob offs and said this would have caused distress - ie cut through the 'banter' the BPS has inferred is fine to throw or use as if it is 'science' 'evidence' or even 'policy' (what's your problem with suggesting it is psych you must be anti-mental health - in reply to someone saying misdiagnosis is misdiagnosis) etc.

That feels significant for ME/CFS and what we all battle

Is this the sort of thing we need to look at re: formulating the attitude to our illness - in a macro sense where clinics with the old guidelines might even be entirely set-up to do this as process for the condition due to being therapy-based on old formats based on non-clinicians and not 'taking on patients' but doing an x sessions of teaching to 'self-manage' and then discharge?
 
https://www.ombudsman.wales/reports/betsi-cadwaladr-university-health-board-202102604/

"Mr A was awarded PIP (a benefit to help with extra living costs for people with a long-term health condition) following his diagnosis. The Ombudsman concluded, on balance, that he would have been awarded this had his condition been diagnosed earlier. She therefore calculated the payment Mr A would have received, together with interest at the rate of a County Court Judgment (8%)"
 
My experience with ME was even more extreme. It took me 3 years, 9 months to be diagnosed, and I missed out on over $70,000 in disability benefits. Fortunately, I applied for disability for autism in 2018, but was denied and never appealed. When I applied again in 2021, they determined their original decision was wrong, which entitled me to four years of backpay. There was an enormous sense of justice when $72,017.10 showed up in my bank account.

I know of pwME who have been sick over a decade without a formal diagnosis.
 
My onset was in 1987.
My diagnosis was in 2003.

In the late 80s/early 90s I was seeing doctors/consultants/neurologists/psychologists/psychiatrists, and attending hospital clinics, in the vain hope of finding out what was wrong with me.

The closest I got a being offered 'treatment' was a suggestion I try aromatherapy (or something of that ilk/very similar), as they couldn't find anything wrong with me, that made sense to them, so I must therefore be neurotic (however the psychiatrists both said that I had no MH issues).

I went through the NHS system 2 and a half times before I gave up on them providing any answers or treatment.

So, at least a year before diagnosis in my case, in the UK.
 
10 years this August, still counting, still can't get any diagnosis for what is wrong at all. Pretty classic ME/CFS presentation. Its why I laugh every time about the new NICE guidelines suggesting 3 months, its been 8 months with this new doctor and no progress so far.

I have been discharged without diagnosis from multiple NHS departments with no treatments suggested or diagnoses, they just don't know so discharge me without cause. I have complained 4 times about my treatment and found the NHS to cover up what it did and deny it everytime coming up with a story that directly contradicts the contents of the letters they sent me. I think perhaps I should take my entire case to the ombudsman really at this stage because I am getting no where. In total I have had 189 medical appointments with 106 different medical staff. Getting a diagnosis is not easy in the NHS!
 
BrightCandle said:
10 years this August, still counting, still can't get any diagnosis for what is wrong at all....In total I have had 189 medical appointments with 106 different medical staff.
Click to expand...
Oh my gosh. I've observed that your posts often express a cynical view of medicine...now I know why. I got diagnosed within 8-9 months of discovering ME (though I was sick for years previously), and the professionals I see regularly are on my side (my physician, sleep doctor, and counselor all see me as chronically ill). Consequently, I'm a lot less cynical. I know a lot of doctors here in the US are in denial...but I see a slow shift in perspective as inevitable.
 
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