Here is the second letter (see the previous post for letter #1) to Greater Manchester Police (G.M.P.), along with various other relevant persons/agencies. Again, neither my advocate nor myself received any responses.
*
Colin-Roy Hunter B.Ed.(Hons.) Esq.
[redacted]
Chief Inspector of Greater Manchester Police
Cc. Graham Brady MP for Altrincham & Sale West
Cc. Sara Todd, CEO Trafford Council
Cc. Dr. [redacted], Consultant at [redacted, hospital]
Cc. Dr. [redacted], G.P. at [redacted, medical practice]
Cc. [Redacted], housemate
VIA Email
[Redacted] December 2021
Dear Chief Inspector,
Breaches of Care Act, Assault & Trespass
Further to my letter to you dated per letter as [redacted] December 2022 and emailed on [redacted] inst., entitled “Urgent Safeguarding Needs”, I note I have not had the courtesy of a response.
CURRENT SITUATION
I have had no medications since [redacted] December, i.e. for 25 days, including circulation and ulcer medications.
I have had 3 hydration-system refills in 25 days, each time during a visit by my ex-boyf; thus effectively 22 days without the hydration-system. In that time it has not been washed nor sanitised.
I have had no meals on 2 out of the past 25 days; only one meal per day on 19 of the last 25 days (usually after 21.00 when housemate returns from work &/or hospital visits); two meals on 3 out of the past 25 days; three meals on 1 out of the past 25 days (Christmas Day).
I have had no snack-bowl (fruit & cereal-bars) for the past 25 days.
I have had to survive on a single cup of water for some 20-22 hours/day over the majority of the past 25 days.
I have had no heat-pads for 25 days, which combined with no circulation meds, means I have been and am suffering from cold in my extremities.
I have had no face-wipes over the past 25 days; no washes over past 25 days; no showers over past 25 days; but I have had 4 baths (3 supervised by housemate; 1 by ex-boyf - I usually average one bathe each week).
I have not brushed my teeth for 25 days. I have mouth-washed on 4 or 5 occasions in 25 days.
Etc., etc.
My weight dropped from 68.2kg to 65.0kg in 10 days due to lack of food & water. However, due to Yuletide, housemate gave me lots of confectionery, cakes, pastries, bread, cheese, etc., I am currently 68.0kg. This kind of diët is not sustainable as it is too high in sugar & fats, and lacks fruit & veggies, so can only be viewed as a short-term stop-gap.
NOURISHMENT & NUTRITION
I remind you that the NICE guideline, NG206, at 1.17.2 states, that a person with severe M.E. “may need support with hydration and nutrition.”
The British Dietetic Association (BDA) in “Myalgic Encephalomyelitis (or Encephalopathy) / Chronic Fatigue Syndrome (ME/CFS): Food Fact Sheet” ( https://www.bda.uk.com/resource/chronic-fatigue-syndrome-diet.html ) state the following - the bold highlighting is mine.
Can diet help with ME/CFS?
If you suspect or have a diagnosis of ME/CFS, it is important to maintain a healthy, balanced diet with adequate fluid intake. This will aid energy management and help manage your symptoms. The NHS Eatwell Guide shows how much of what we eat overall should come from each food group to achieve this. You do not need to achieve this balance with every meal, but try to get the balance right over a day or even a week.
Drink plenty of fluids – water, milk and sugar-free drinks all count. Fruit juice and smoothies also count, but limit these to 150ml per day.
Weight loss
This can occur if you are restricting your diet, have a reduced appetite (for example due to taste changes or nausea)… If you become malnourished, this could make you more vulnerable to illness. It may help to eat little and often, choose softer foods that are easier to eat, and have nourishing snacks and drinks between meals.
Nausea
If you are experiencing nausea, make sure you keep up adequate fluid intake and eat regularly, having small amounts often. Not eating or drinking may increase your nausea.
Seeing a dietitian
Your GP should refer you to a dietitian with a special interest in ME/CFS if you are:
- Losing or gaining weight unintentionally
- …
- Living with severe or very severe ME/CFS
NAUSEA
“Chronic Nausea” is listed on my spreadsheet of “[redacted]” at item [redacted], along with links to relevant information from the NHS, Wikipedia & ME-pedia. The NHS advice includes: “take regular sips of a cold drink” & “eat smaller, more frequent meals”.
In my document “Carer FAQs” at item [redacted] is “Nausea” with the note: “Colin experiences nausea for two to three hours after waking up. For this reason he will often refuse breakfast. Very occasionally, if bad, he will refuse also to take medications.”
Both aforesaid documents were supplied to inter alia Trafford’s Re-ablement Team & Trafford Social-Workers. One carer (M.) had access to the FAQ doc (but the other carers averred they were not given a copy) so this must have been passed to her by a manager.
Neither my G.P. nor my NHS hospital consultant referred me to a diëtician, as far as I am aware. Given the reduction in feeding/watering in [redacted] 2020, one or the other might have been expected to take action to rectify. As far as I am aware, they did not. Nor, as far as I know, did they instigate a safeguarding-review.
Social Services &/or the Trafford Re-ablement Team did not take account of my conditions, nor the necessity of frequent beverages & small meals. Rather than reducing the number of care-calls from 3 to 2, they ought to have increased the number of visits to every couple of hours. Recall, I have to be prompted to eat & drink and watched to ensure I partake.
RE-ABLEMENT
With regards the appropriateness of using re-ablement for those with severe M.E., Action for M.E. (the largest UK M.E. charity) published “M.E. and social care” ( https://www.actionforme.org.uk/support-others/social-care-professionals/ ) stating the following - highlighting is my own.
Reablement (sic) and M.E.
Reablement is provided by community-based services and intends to help people recover skills and to maximise their independence. The post-exertional malaise experienced by people with M.E. means that this approach can worsen their symptoms. In our 2015 survey, one person told us:
“My social worker believes that with a short-term care package (four to six months) there should be ‘noticeable improvement’ in my level of independence. If there isn’t when my care is reviewed she said they will remove my carers as ‘their goal is to promote independence and not dependence.’ I’ve tried to explain that severe M.E. doesn’t work like that, I often have paralysis, I’ve orthostatic intolerance, physically can’t turn in bed etc. Managing personal care and giving me meal replacements isn’t promoting dependence as there are things I physically cannot do. She replied, ‘Well that’s the way our care system works.’”
Based on evidence from people with M.E., it is clear that:
- reablement is not appropriate for people with M.E., particularly the one in four of those with the condition who are severely affected
- offering reablement as a first option to people being considered for homecare will lead to adverse outcomes for people with M.E.
- research on the efficacy of reablement does not differentiate between condition groups and does not represent the experiences of people with M.E.
The Social Care Institute for Excellence (SCIE) in its post “Roles and Principles of Reablement” (sic) ( https://www.scie.org.uk/reablement/what-is/principles-of-reablement ) envisages that clients become more independent. In my case I have gone from 85% to 99% bedbound and instead of being able to descend to the kitchen 2-3 times/week now only make it once every 10-12 days. I used to help prep meals in the kitchen, but prior to the carers leaving mostly had to do so from my bed. For other failings in respect to health & wellbeing, refer back to my original letter.
The advocacy group Doctors with M.E. in their post “Rights and Obligations in ME/CFS: Overcoming normalised disregard for standards” ( https://doctorswith.me/rights-and-obligations-in-me-cfs-overcoming-normalised-disregard-for-standards/ ) “fully supports and is contributing to this work looking at attitudes, medical education and service areas (including health, welfare, social care and education) in ME/CFS.” The title of their post clearly implies that many if not all of the bodies referenced disregard usual standards when dealing with folk with M.E./C.F.S.
Presumably, had I been suffering from Multiple Sclerosis, Parkinson’s, Cancer, etc. I might have been treated better. And if not, then the various bodies are not simply failing myself as an individual, but systemically across the board.
LEGAL LETTER
I have still not received the letter from Trafford Council’s legal department, promised by the manager of Trafford’s Re-ablement Team - see previous letter for details.
SAFEGUARDING
A safeguarding-review ought to have been carried out after each complaint to Trafford Council/Trafford Re-ablement Team/Trafford social-workers/Trafford Councillors/etc. Instead my complaints about failings were not acted upon - had they been, my health may not have deteriorated so drastically! Obviously, we are well past Trafford Council acting with regards any safeguarding-review. Furthermore I should not trust them to act objectively at this point based on their in/actions thus far.
I have lodged complaints with you, Chief Inspector, and thus should appreciate you taking action to safeguard my health & wellbeing, as bodies & individuals that/who ought to have done so have failed and continue to do so.
Yours
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