Whilst this blog-post can be read without reading my previous post, “Crime, Death or Asylum”, the reader may wish to read it for background. This previous posting details some of my health conditions and the ramifications of the change in care-provider including loss of weight, severe dehydration, some quite severe reäctions to change in medication and care, and the over-all deterioration in my health since the council-owned care-agency took over in April 2021 and changed my care-regimen in August 2021.
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For some nine weeks I have been resident in my home’s guest-room. It is by far the snuggest room in the house, for some reason we have never quite figured out.
Normally I work my way through at least one whole box of mansize-tissues per week; but since the change of room I have only used up two boxes. I am allergic to dust - something which is rather difficult to avoid. My usual bedroom must have been extremely dusty and hence my constant sneezing and running-nose!
Normally we clear me out of the bedroom once per year so that it can be deep-cleaned. Alas, last year I was just not well enough to leave my room for any useful length of time. Indeed, this year, simply moving to the guest-room caused me to be almost totally bedridden for some three weeks, excepting using the lavatory for defecating and the occasional urination.
When I was finally able to rise from my bed to attend to practical chores in my usual bedroom, I discovered as I picked up objects, books, etc. just how dusty the room had become. Dust-balls rolled across the hard floor-surface like tumbleweed! The tops of books had the finest dust-coatings I have probably ever seen. However, when one reälises that there were five tubs-worth of books in my room, that adds up to a heck of a lot of contaminants!
My housemate has nearly completed the deep-cleansing. Most of the room plus its en suite have been vacuum-cleaned, mopped and hard-surfaces disinfected. There are just a couple of chores remaining. Then I may start moving some of my things back into my personal bed-cell.
Carer Duties
I have to say that the standard of care since my move, some nine weeks ago, has probably deteriorated. Remember: whilst mostly my long-term memory is fine, my active-memory is shockingly poor (and this is typical of someone with my chronic-illnesses); I have to be prompted with precise, closed-questions (to which a yes/no response can be given).
Personal Hygiene:
Number of times carers prompted me to shower - ZERO
Number of times carers prompted me to brush my teeth - ZERO
Number of times carers prompted me to mouthwash - ZERO
Number of times carers prompted a change of bedding - ONCE (M)
Number of times carers prompted to use a face-wipe - ONLY J1
Number of times carers prompted a change of clothing - ONLY J1, J3 & M
Food & Drink:
Number of times carers enquired as to what, if anything, I had eaten - ZERO
Number of times carers enquired as to what, if anything, I had drunk - ZERO
Number of times carers checked on water-consumption (water-cup & hydration-system) - DAILY
Number of times carers failed to fill water-cup - J2, J3 & J4 usually forget
Number of times carers failed to replace snacks - J3 & J4 usually forget
Number of times carers failed to enquire whether I wanted something to eat - most of the time, all carers forget.
Medication & Support:
Number of times carers failed to provide medication - ONCE.
Number of times carers enquired whether I needed a heat-bag - ONCE (M)
Trafford Adult Social Services (Trafford ASS) have been over the years repeatedly provided with detailed lists of carer duties, as has the Trafford Council-owned care-agency (or previous care-agencies) and as has my social-worker (and previous social-workers - yes, they are constantly changed). None of these agencies has ensured these lists are actually used, despite reminders and complaints from myself.
After more than a year of being under this selfsame care-agency I only recently discovered that nothing is provided in my file as to what duties are required of carers. Carers have been relying on my housemate (not always at home and anyways gets really annoyed at being constantly asked for the same information over and over) or myself - a person with appalling active-memory.
One carer advised me that due to the care-agency usually only retaining clients for circa three weeks, they have never bothered with duty-lists. However, I have been with this council-owned provider for some fourteen months. This is indicative of a failing to ensure continuity of care and appropriate care. How many other Trafford residents are being failed or have been failed by this deliberate recklessness?
Over a ten-day period I had six visits from a new carer. Trafford ASS etc are well aware that I will not undress with newbie carers until I have developed trust. Put yourself in my position by asking yourself how comfortable or not would you be with undressing or being undressed by a total stranger? Apart from the fact this newbie (J4) had not been mentored through what is needed here, her unwillingness to read through the file to find out her duties and thus her consequent failures in care, there was her lying in the notes after her very first visit. This really does not help me trust someone.
On J4’s first visit the care-agency did not notify me that a new carer would be attending, so I could not ensure housemate was at home. On this occasion he was out. J4 arrived extremely late for a 16.00 first call of the day at 18.09. Apparently she had been training. This meant I had not been fed, watered or medicated for twenty-two hours. There was also a knock-on effect: one of my medications has to have a minimum four hours between doses. Taking this medication at 18.26 would have meant the next dose could not have been taken prior to 22.26. The carers official finish-time is 21.00. One can immediately see the issue. J4 tried to press me to take the medication earlier, but I quite correctly refused as the minimum elapsed time had not passed. J4 noted that this was an outright refusal to take medication. J1 the next day, added an addendum to confirm the facts.
Effectively this was a failure by the care-agency to medicate me. Furthermore, this has not been the first time this year. There have been at least three other occasions in 2022 when the agency has failed to give me my medications. This is a repeated failure to medicate and thus fulfil their contract. Recall this is the council-owned care-agency not some penny-pinching private-enterprise. Imagine how those with private companies are fairing!
Update on my previous blog-post
Despite sending the link to the blog-post to various bodies and organisations, including Nicola Sturgeon in Scotland, I did not receive one single response. I could have committed suïcide. I could be dead from dehydration.
As I commented on Twitter, once one becomes disabled &/or chronically ill in the UK, one become to all intents and purposes invisible and uncared for. The United Nations (they also failed to respond) has repeatedly condemned the UK’s treatment of its disabled population - some eleven million individuals. However, the ultra-right-wing ruling-party and indeed the neoliberal alleged Opposition, do absolutely nothing to ameliorate the on-going situation. Nor will they.
No-one actually genuinely cares…
