Today is 8th August. Each year this marks the international-day for Severe M.E.-awareness. Inter alia I suffer myself from Severe M.E. My condition has been deteriorating for over two decades.
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[Image description: Facebook screenshot of post from August 2017, when I was being appropriately cared for.]
Five years ago I received care-calls at 11.00 (brunch), 16.00 (shower) & 20.00 (dinner). A year ago Trafford Council cut back my calls to just 16.00 & 20.00. Apart from failures to prompt me and care for me across the board, specifically it has resulted in mostly one meal per day at 20.00 and (until a charity heard about my plight and sent me a hydration-system) I was only receiving four cups (not beakers/mugs) of water each day, two of which were medicated. Despite repeated complaints I am now at the juncture where legal-action looks like the only means to obtain appropriate care.
Having finally lodged a formal complaint with the CEO of Trafford Council about their failure to adequately or appropriately care for me, I turned to revising my carer-duties list in order to be as explicit as I possibly can about my needs. I do not consider that they are outlandish. Rather, they are the basics that ensure I have a quality-of-life instead of an inadequacy-of-life.
It took the CEO’s PA just over three weeks to send a holding-response, to which I have replied.
Does anyone consider anything on my list as outlandish or unreasonable? Trafford Council considers that the vast majority of this list is not appropriate, otherwise they would have ensured that I was receiving the support requested. Recall, I have dire active-memory. Yes, I can remember items when expending a great deal of energy that causes me pain and excessive & exhausting fatigue; but I can only do so in short bouts before needing a few days to recover.
[Image description: Fitbit heart-rate read-out for the day I wrote to the council. The peak just after three a.m. is a nocturnal visit to the w.c. - a return hobble of 6 metres. The peak at nine p.m. is me trying to concentrate on writing an email - something I am finding increasingly difficult to do.]
Oh, and I do not take delivery of three lots of shopping in a week, except at Christmas, Easter and special personal celebrations; so the carers usually only have to deal with one lot of shopping.
Whilst compiling this list, I reälised that in over a decade of being under the care of Trafford Council, not once has any carer asked me:
if I want to comb my hair or need assistance therewith;
if I want to brush my beard & moustache or need assistance therewith;
if I want to trim my beard & moustache or need assistance therewith;
if I want to shave or need assistance therewith; or
if I want to moisturise my skin or need assistance therewith.
I cannot tell whether all clients are thusly failed or whether it is a case of sexism rearing its ugly head.
Would you the reader be happy not being groomed on a daily basis?
Please feel free to comment and give your opinions as to whether or not I am being unreasonable in my requests.
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Most folk with Severe M.E. are similarly failed by the NHS - including G.P.s , by LEA Social-Services departments, by the DWP, by society at large and even by families who only see the caricatures of the illness propagated by the UK’s mostly ultra-right-wing media.
| Action | Location | Notes | M | Tu | W | Th | F | Sa | Su | |
|---|---|---|---|---|---|---|---|---|---|---|
| Prepare phosphate-water - use water from utility-room right tap. | Utility-room | Beakers & tabs in RH cupboard above main surface. | ||||||||
| Last call: prepare fresh water-bottle for hydration-system. | Utility-room | |||||||||
| Collect blister-pack & take to Colin along with phosphate-water. | Hall | Ought to be on carer-station. | ||||||||
| Supervise & ensure Colin takes meds. | Bedroom | |||||||||
| Remind Colin to do physio stretches of hands & feet whilst lying. | Bedroom | |||||||||
| Supervise Colin doing physio stretches of neck & torso whilst sitting on bed-edge. | Bedroom | If Colin wobbles, tell him to stop. | ||||||||
| Check how Colin is, how he slept. | Bedroom | |||||||||
| Check if urine-bottle needs emptying: flush down wc; wash with soapy water. | Bedroom/en suite | |||||||||
| Check whether heated bean-bag/hot-water bottle(s) [HWBs] needed. | Bedroom | |||||||||
| Check how much water/liquid, if anything, Colin has drunk. | Bedroom | |||||||||
| Check whether water-cup needs refilling - use en suite right tap. | Bedroom/en suite | |||||||||
| Prompt Colin to drink by suggesting a juice/coffee/tea/milk/can of pop/COMPLAN if off food or ill/etc. | Bedroom | |||||||||
| Check what, if anything, Colin has eaten. | Bedroom | |||||||||
| First call: Prompt Colin to eat by suggesting some cereal/toast/sandwich/salad/cheese & crackers/boiled-egg/etc. | Bedroom | |||||||||
| Check whether T-shirt needs changing and assist if necessary. | Bedroom | |||||||||
| Remind Colin to use a face-wipe if he cannot use bathroom. | Bedroom | |||||||||
| Remind Colin to wash if he can use bathroom, but cannot shower. | En suite | |||||||||
| Check whether Colin wants to trim beard or shave. | En suite | |||||||||
| Supervise shower by listening out for fall or call for assistance. | Various | |||||||||
| Prepare food-tray, as required + paper-towel/serviette/napkin. | Kitchen | |||||||||
| Last call: prepare bowl of fruit (see FAQs) & snacks + paper-towel/serviette/napkin. | Kitchen/hall | |||||||||
| Last call: If housemate unavailable, prepare, cook & serve hot meal. | Kitchen | A selection of ambient foods is in green tub in bedroom. | ||||||||
| Prepare heated bean-bag/HWBs as needed. | Kitchen | |||||||||
| Remind Colin to turn off shower's power-supply. | En suite | |||||||||
| Remind Colin to moisturise. | En suite | |||||||||
| Use squeegy to wipe shower door & use daily-spray to clean shower, if Colin unable. | En suite | |||||||||
| Remind Colin to use deodorant. | En suite | |||||||||
| Remind Colin to clean teeth or mouth-wash if unable to brush & then supervise. | En suite | If Colin wobbles, tell him to stop. | ||||||||
| If Colin is bedridden, proffer bowl & mouth-wash. | Bedroom | |||||||||
| Check whether Colin wants to comb hair & support if necessary. | Bedroom | |||||||||
| Check whether Colin wants to brush beard & support if necessary. | Bedroom | |||||||||
| If Colin is out of bed, check he is wearing pendant-alarm. | Various | |||||||||
| Last call: check whether Colin needs circulation tablet. | Bedroom | |||||||||
| EXTRA DUTIES | ||||||||||
| Monday: Get dustbins from garage & place by hedge at front of house, if housemate unavailable. | ||||||||||
| Tuesday 1st call: Return dustbins to garage, if housemate unavailable. | ||||||||||
| Tuesday last call: Sterilise hydration-system with mild Milton & drain in utility-room. | ||||||||||
| Wednesday 1st call: Bring in Able & Cole food-shop from garden; wash fruit/veg to drain in kitchen; put away chilled food; leave ambient for housemate to d/w. | ||||||||||
| Thursday 1st call: Bring in Riverford food-shop from garden; wash fruit/veg to drain in kitchen; put away chilled food; leave ambient for housemate to d/w. | ||||||||||
| Friday 1st call: Collect shopping from Waitrose (16.00-18.00 slot); bring back; wash fruit/veg to drain in kitchen; put away chilled food; leave ambient for housemate to d/w. | ||||||||||
| Saturday: Change bed-linens. | ||||||||||
| Sunday: X | ||||||||||
