TRIGGER WARNINGS: abuse; mention of suïcide attempts.
Over the past few years and more recently the past few months I have been publishing my correspondence to the agencies & individuals who are supposed to help me. If interested in more detail and the actual correspondence referred to herein, do take a look at previous blog-posts. Not one even bothered to respond, let alone take any action. This blog-post summarises the past two to three years as best I can (given my physical & cognitive difficulties).
Carers?
Despite Trafford Re-ablement Team, Trafford ASS (Adult Social Services) and the CEO of Trafford Council being aware that my housemate, who had just lost his mother, suffers from deteriorating dementia, they left him to care for me without providing him with any support. In fact since 2006, they have expected him to be my carer, despite - since 2011 - his not wanting to be and insisting he does not want the care duties. To be clear, there is no legal obligation on him to care for me whatsoever and has not been since April 2011 when we separated. We are now simply tenants-in-common. There is a legal obligation (since at least the Care Act of 2014) upon councils to provide appropriate support to all primary carers by means of an assessment and so forth. Trafford has thus far failed for the past thirteen-to-eighteen years or so to support housemate (and also therefore myself).
Wheelchair
I requested a new wheelchair via my G.P. in 2019 as the model I had was too large for inside the house. My G.P. failed to pursue. Trafford Re-ablement point-blank refused to assist me in obtaining a new wheelchair. They also refused every request for assistance, e.g. a safe shower-stool. I have been left bedridden some 99% of the time. I could have been downstairs helping in the kitchen to prepare and cook meals. Letters to my G.P. in 2023 and 2024 have gone unanswered, so I am still without a wheelchair over five years later. Obviously in that extended time-period I have lost muscle-mass and stamina: due to my health these will never be regained.
Some Of Trafford Re-ablement Team’s Many Failures
Trafford Re-ablement cut the support they offered from a morning, afternoon and evening session, to only an afternoon and evening session with no explanation nor warning. Effectively I went without morning medications. Housemate’s dementia means he cannot recall to remind me to take my meds. My cognitive disabilities mean I also cannot recall. When the small amount and poor quality council support was removed (due to one alleged example of swearing in a two year or so period — yet they coped and dealt with a drunkard who swore at them every visit?), a long-term friend and an ex-boyfriend took shifts to prompt me to take my pills etc. There were health and well-being consequences detailed elsewhere added to the failure to fully and appropriately ensure I was medicated and in a timely fashion, appropriately fed & watered, etc.
Failures by the carers themselves and the managers meant I rarely received hygiene-support. Housemate permits me a weekly bath. But no support with quotidian hygiene - washing, teeth-cleaning, hair-care, etc.
When housemate was unable to make meals for me due to travelling one hundred miles round-trip to see his mother in hospital and then hospice-care, prior to her death, instead of being understanding and flexible, they objected to having to take on meals. He only normally gave and gives me one meal each day, mostly in the evening, any time between 18.00 - 23.00. They then tried to insist on microwaveable meals only - no sandwiches, stir-frys, salads, egg-dishes, etc. I have severe food-allergies and intolerances, of which they were made aware prior to commencing ‘caring’. It is very difficult to find ready-made meals that are safe for me to eat, and that is before insisting only on microwaveable meals. Trafford Re-ablement never offered to attempt to source the meals they required. They also refused to take account of NHS guidelines on a varied diët. Their rule-book constantly changed and seemed to be made up on the hoof to do anything but offer support.
After my G.P. wrote to Trafford pointing out I needed two meals per day, instead of re-instating a breakfast visit as my doctor had intended, Trafford Re-ablement Team decided I would be made a snack at the teatime call regularly rather than just occasionally Effectively my two meals per day were maximum four hours apart. My health-conditions require small meals and lots of liquids throughout the day, so this was contrary to good practice.
Continuing lack of Care & Carers
In the thirty-three days from November 29th to December 31st 2024, housemate forgot on eleven of those days to feed me. Also no drinks either. I saved up my energy and managed to cook a pre-planned, simplified Christmas-dinner on Christmas Day (knowing full well I should not be able to leave my bed afterwards for a couple of days at least). I cooked (with supervision from housemate &/or his brother) sufficient that housemate and his brother could reheat left-overs on Boxing Day and I had ordered other simple foodstuffs on-line for the holiday Friday. The foodstuffs ended up in the bin. It was especially galling that the men totally forgot about me for forty-eight hours. Not once did either of them check up on me. I could not even get to my en suite three metres from my bed to use the WC or fetch some water.
Hydration
I eventually was given a hydration-system by a charity after pleas from other disablies on Twitter (now X), with which yet again Trafford Re-ablement Team refused to assist in acquiring. It only needed them to send an email. I suppose it would have been an admission that they were not providing enough support had they helped me. Still, they agreed to fill it each day and clean once per week. Of course, housemate’s dementia means he does not and has not recalled to use the hydration-system, since all care was withdrawn.
Safeguarding & Police Failings
So for the past two plus years, I have been and still am at risk of dehydration and potentially malnutrition. There are other issues as well. My housemate cannot be blamed as he has deteriorating dementia. This, to most reasonably-minded folk, would appear to be an issue of safeguarding. I wrote several times to (inter alia) Greater Manchester Police (GMP), the CEO of Trafford and my then Conservative M.P. As far as I know they did nothing. They certainly did not write to me nor my advocate. Under the legislation at the time the police were meant to be the agency that ensures safeguarding.
What is one supposed to do when they fail to do so?
G.P. & Pharmacy Failures
Every four weeks, without fail, my advocate has to go into battle with my G.P. surgery and my pharmacy, whilst they argue over whose fault it is that I do not have my medications. EVERY four weeks it repeats in a Kafkaesque manner. She does her best to fit my needs into her very busy and hectic schedules. Every time we try to improve matters, we are stymied by the unnecessary bureaucracy of inflexible folk who cannot use a signed letter as authority - of itself such ought to be considered a legal document. Matters have to be completed as they say, but cannot because they cannot or will not provide the means to do what they want. Catch-22! According to the carers from Trafford Re-ablement Team, G.P.-pharmacy quotidian interactions are failing sick folk throughout Trafford. Interestingly for the months that the Team took over obtaining prescriptions, there were suddenly far fewer problems.
Other G.P. Failings
I saw my G.P. in late Spring 2023, who kindly made a home-visit due to my being bedridden & housebound. I then wrote over a period of several weeks my annual-review letter to my G.P. in the Summer of 2023, which included details of suïcidal ideätion. The current, published in late 2021, NICE guidelines (1.15) state that I ought to have a primary-care review at least once per year. No visit in 2024. It is now something like twenty months since my last annual review. With no response, I wrote again last Summer (2024) apprising my G.P of three suïcide attempts and additionally the need for a change to pain-management medication. It was acknowledged, because I had insisted, but there has been no responses to my queries, no change to my prescriptions, no support. Without the G.P.’s comments and support, I cannot go back to Trafford ASS to sort out a care-plan agreed by both my G.P. and whoever my social-worker currently might be.
Bedding Issues
Trafford Re-ablement Teams insist that changing bedding is a cleaning not a caring matter. This to someone who is and was 99% bedridden. At the time I went downstairs once per week or a fortnight, for two to three hours for a shared meal with housemate and a friend, my only in-person socialising. I also had a bath once each week or so. Hospitals consider bedding being regularly changed is a necessity and an issue of hygiene, so it is done routinely. I have extremely variable and fluctuating health-conditions. I cannot rise from my bed on command, so bedding needs to be changed on occasions when I am out of it, for example my weekly bathe (not at the same time or even day each week, but whenever I can cope). However, one might anticipate that an agency that rarely prompted me to wash etc., really could not give a damn about my environment.
I have not been able to change my bedding since prior to my birthday in September 2024, more than four months ago. So, some six months of being in the same bedding, gradually filling with food-debris, dead skin, etc. Housemate’s dementia means he no longer knows or is able to make a bed not even with instructions. Housemate sleeps on a bare mattress with dressing-gowns pulled over him. For his birthday I ordered on line a new light-weight blanket, which he does use now.
The beginning of 2015 saw me succumb to what we suspect was norovirus. For six days I lay in diarrhœa-stained bedding. From the photographs above one can see that it permeated sheets, mattress-protector and fleece. The smell was disgusting. Having to lie in my own filth was excruciating.
No Back-up For Housemate When Ill, No Respite.
It is at this point we reälised just how high & dry Trafford had left us. With Rico being ill as well, there was no-one who could physically support me, let alone him. There ought to be back-up carers for carers who fall ill in this day and age.
Care Quality Commission Failings
I have attempted contacting (again via twitter/X) local and national media, but they are uninterested. For one to two years prior to Trafford withdrawing care-support, I was regularly keeping the Care Quality Commission (CQC) apprised. They also took no pro-active action and made no known attempt to instigate safeguarding proceedings.
Legal Advice?
The person who was giving me advice died a few months prior to care being withdrawn. I attempted to get legal help via Twitter/X, as social-media are mostly my only means of communication. No responses.
English Infrastructure Is Broken
I do not consider that it is Colin versus the whole state & its agencies: it is quite simply that England’s infrastructure has fallen apart. The politicos who could do something about the plethora of failings are bubble-wrapped from perceiving the chaos and can thus deny that anything needs doing.
Yesterday I read that the CQC has been unable to deal with safeguarding complaints for months. Another failed agency of state.
What Suffering?
So far I am still alive. I wonder how many have needlessly suffered due to our failed state. I wonder how many have died needlessly, whether from hunger, illness, domestic-violence (from carers at breaking-point; 75,500 in y.e. March 2022 cases of such abuse) or suïcide.
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National & International Obligations of the UK
As far as I know the UK is still on annual-report by the United Nations due to widespread failings across the board in relation to disabled individuals, with multiple breaches of the UNCRPD treaty. It looks like the Country will remain on report. Labour, as neoliberal as the Conservatives, did have the opportunity to turn matters around and get the UN off the UK’s back. Instead it decided to start its governmental incumbency by yet again attacking disabled people, our support and our human-rights. It had continued right through into last weeK.) Due to these actions it is unlikely using the previous UKgov as an excuse will be given much credence by the designated UN Committee.
England in 2025: forsake all hope who dwell here! 😢
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