Don't disabled people have a right to treatment and care anymore?

7 months ago
25

Lucy Meszaros was diagnosed with MS in 2004. After the first few years it settled and was less debilitating. But then she developed stomach ulcers, kidney stones, faecal impaction, and sporadic faecal leakage from her vaginal area (medically documented and believed to be a fistula).
My wife had urosepsis at least 35 times within nine years.
Lucy did not present as clinicians expected. She was asymptomatic, blood infection markers often not overly concerning, but disorientation, confusion, slurred speech, weakness, fluctuating temperature and chills, discoloured and foul-smelling urine, combined with the faecal leakage.
These were confirmed urosepsis indicators for Lucy and had never proven to be requiring anything less than urgent medical intervention.
GP’s, community nurses and hospital doctors acknowledged that Lucy was asymptomatic.
They also agreed that the vaginal faecal leakage and kidney stones were causal factors.
Yet treatment for recurring urosepsis was always delayed and symptoms incorrectly attributed to MS.
Oral antibiotics were systematically thrown like sweets at Lucy, sometimes slightly lessening symptoms, but did not eradicate infections.
Clinicians subsequently acknowledged that she had developed “extremely high resistance” yet inconceivably increased the frequency of prescribing of them.
Urosepsis was rarely treated with intravenous antibiotics until Lucy suffered from numerous infection-induced seizures resulting in several strokes, several heart attacks, and even a cardiac arrest.
Many of these life-threatening incidents happened in hospital when doctors had ignored and refuted my concerns.
Resolve of the causal factors was consistently spurned, based on judgmental opinions of “She has MS, she must have a poor quality of life”, “she wouldn't ‘tolerate’ surgical procedures”.
Yet she had recovered from this chain of serious events time after time, albeit her dementia-like cognitive function deteriorated a little each time.
I was labelled as “argumentative”, “refusing to accept and questioning medical decisions”, they began referring to me as “ex-husband”. (Lucy and I were married. Professionals were cognizant of that).
Each and every request for access to Lucy's medical records was refused.
My requests for urine cultures confirming whether infection was present before processing discharge were usually denied, yet had proven to be incontestable confirmation of infection, as opposed to blood test markers.
Over nine years there was a plethora of unsafe discharges and dismissals of urosepsis.
Here are just two examples of many:
(1) 2018 During a nine-week admission, declared ‘medically fit for discharge’ several times, yet in fact was clearly unwell. I objected each time, requesting urine samples, saying they are the definitive test for Lucy. Discharges were delayed because urine samples did evidence infection, and intravenous antibiotics were reluctantly re-administered.
Increased antagonism from senior staff became unmanageable, and although Lucy wasn’t well, I stopped objecting. Whilst waiting for patient transport Lucy suffered a heart attack. Doctors conceded that she ‘still had urosepsis, that this was in-fact the cause’ of it, and re-administered intravenous antibiotics. (This was when the first (of four) covert DNACPR’s were authorised without our knowledge and without discussion. It was revoked when I began recording doctors with my phone).
(2) 2020 Lucy had arrived home with patient transport, unsafely discharged again, and totally unresponsive. A district nurse was here as witness. Lucy still had urosepsis.
Incredulously, there was no end to unsafe discharges, failures and mistakes, they continued.
Frequently, and sometimes within hours or days of ‘medically fit’ discharges, Lucy required GP visits, emergency ambulances and Rapid Response call-outs because infections often were not resolved.
Each time clinicians dismissed concerns, I pleaded for them to look at, and to acknowledge the years of documented medical history, because that evidenced how often repeated incorrect diagnosis had resulted in multiple life-threatening events, and that subsequent to their dismissals, urine cultures had indubitably shown urine tests to be Lucy’s definitive infection confirmation as opposed to blood tests.
When I spoke to GP's they regularly voiced their frustration at the hospitals but nothing changed.
NHS legal department and safeguarding then intensified their false allegations to label me as “intimidating”, “aggressive” and “condescending”.
There were years of blatant disregard for my Lasting Power of Attorney for Health and Welfare and several covert DNACPR authorisations without our knowledge, specifically at such times when Lucy was at her worst with urosepsis.
There were also several covertly and improperly implemented Deprivation of Liberty and Respect forms without our knowledge. Lucy's MS consultant was opposed to it and revoked the DNACPR, saying "she has a reasonable quality of life".
It was a vicious circle.
I have videos to evidence years of horrific hospital neglect, left in soiled and wet continence pads for up to twelve hours, pressure ulcers, dressings so small that the adhesive border would stick to the open wound, not sitting Lucy up to feed her (when they bothered) and causing her to aspirate and develop chest infections,.
Other videos and audio recordings of conversations evidencing my objections of the covert authorisations, made when Lucy was at her worst specifically with escalated infections that were trivialised, mocked and disregarded with raised voices from staff who became annoyed if I even dared to question their medical opinion.
From sheer desperation and in public interest, because so many others experience the same, I aired our grievances on social media. I hoped that doctors would accept the severity of this risk to Lucy’s life.
But Gloucestershire NHS became increasingly intent on silencing and discrediting me for exposing the neglect and abuse.
After giving twenty years of impeccable, extremely complex person-centred care, keeping Lucy safe, and actually saving her life on many occasions, the hospital fabricated an even more severe false allegation of providing ‘inappropriate’ personal care to my wife.
August 4th 2023, I was arrested and prevented from providing care for Lucy.
(1) They allege this to have happened on 17th July. Why didn't they escalate this then?
(2) Why would staff have allowed me to continue, unsupervised, to provide Lucy's personal care in their hospital for from 17th July for the remainder of the admission which was on 26th July?
(3) If they genuinely thought my wife was being inappropriately treated or abused why didn't they either prevent me, or place a staff member in there to supervise?
(4) Why would they have discharged my wife into my care, in our own home (26th July) and leave her unsupervised in my care if this was a genuine allegation?
(5) Why would they even risk something like this behind closed doors with no safeguarding preventative method in place?
(6) Why didn't the police arrest me until 20 days later 4th August?
(7) Our formal carer (Sarah) was with Lucy all that day (17th) as she was for many of the other admission days, to avoid the usual staff neglect on Lucy. She has made a statement flatly refuting the 'allegation'.
What a coincidence! This is apparently 'supposed' to have occurred on the same day that I had threatened them with legal action over MORE, all covertly authorised DNACPR's (three) ReSPECT (two) & several DOLS behind our back. (I am LPA H/W).
I was prevented from continuing my caring role, which would have ensured that Lucy received medical attention quite likely to have saved her life.
December 2nd 2023 Lucy died at home from unnoticed and untreated infection.
March 14th 2024 Gloucestershire NHS fabricated another false allegation in a further attempt to avoid further exposure. I was arrested again, this time for “harassment”, “malicious communications” and “potentially voyeurism” whilst peacefully protesting outside the hospital in public interest whilst an executive board members meeting was taking place.
Will Gloucestershire NHS forever be protected by the 'questionable' reluctance of Gloucestershire Constabulary, and never to be held accountable for their wrong-doings and illegitimate covert behaviour?

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