Over the next few days I am (hopefully, body-willing) going to post the correspondence with inter alia Greater Manchester Police about failings in caring for me by the authorities etc. To date neither my advocate nor myself have received responses to several letters and emails. My then M.P., Graham Brady, never responded to any correspondence from this point onwards, other than acknowledgments. He also could have requested a safe-guarding review.
*
Colin-Roy Hunter B.Ed.(Hons.) Esq.
[address redacted]
Chief Inspector of Greater Manchester Police
Cc. Graham Brady MP for Altrincham & Sale West
VIA Email
[Redacted, December 2022]
Dear Chief Inspector,
Breaches of Care Act, Assault & Trespass
On Friday [redacted], I was told that I should be receiving a letter from Trafford’s legal department. Thus far it has not materialised. Given my urgent care-needs, I cannot delay contacting you any longer.
Any kind of active and deep-thinking uses energy, and we people with Myalgic Encephalomyelitis (pwME) have a chronic lack of energy, especially so for me and many other pwME during the Winter months. For this reason most of this letter are pieces I have already written and then cut & pasted here. I am telephobic, i.e. do not speak on telephones, hence this letter.
HEALTH BACKGROUND
I have approximately [redacted, 100+] distinct conditions/symptoms, most of which are subsumed into the M.E. rubric. I have a spreadsheet (shared with my two HCPs - my G.P. & my NHS consultant) detailing them with notes, which I can forward as a pdf if required.
My main conditions are M.E., Fibromyalgia, Osteoarthritis & several other arthritides, Raynaud’s, Anxiety. Additionally, I have been suffering from Depression and Suïcidal Ideätion for most of this year. I suffer chronic pain constantly, ameliorated but never fully vanquished by some prescription and some non-prescription medications (of which my G.P. is aware).
I was retired on ill-health grounds in the late 1990s after developing these disabling conditions. The physiological maladies mostly have been on a deteriorating trajectory over the past two or so decades.
The Department for Work & Pensions (DWP) considers I am so chronically sick/disabled that they granted me a ten-year bye from annual reviews for social-security benefits.
DIFFICULTIES OBTAINING APPROPRIATE CARE-SUPPORT
Obtaining appropriate care-support from my local authority, Trafford, has been a constant battle. Social-services do not appear to learn from errors made nor do they appear to have full access to files/correspondence. This means a constant repeating of information/enquiries/investigations/etc.
One example of these issues is the repeated sending round of male carers despite explicit instructions not to do so, due to my sexual assault & rape issues. They investigate, apologise, promise it will not re-occur, and then it happens again and again. Each time igniting PTSD for several days or even weeks.
COGNITIVE ISSUES
I have various conditions/symptoms that militate against clear-thinking. In my FAQ document provided to both Trafford social-services and the Trafford Council-owned Re-ablement Team (my most recent care-provider), I provided the following information.
Under “Memory”:
“Colin generally has no issue with long-term memory, except when tired. However, his short-term memory can be exceptionally poor. For this reason, carers need to prompt with precise questions rather than generalised and open questioning. For example, “Do you need anything?” will never elicit a positive response. Ask, “Do you need to clean your teeth.” See also Dyscognition.”
Under “Dyscognition”:
“There are times when Colin is brain-fogged, which can cause dyslexia, dyspraxia and a loss of vocabulary for everyday items and names of even folk he knows well. This is a symptom of his conditions. Worry not!”
In short, I have severe issues with ‘active-memory’: if I am given meds to take, I need to be watched to ensure I take them and do not simply put them down. I do know that I need to take them, but in the moment I completely forget. It is well known that many if not most pwME suffer to varying degrees with this aspect of recall. I have severe M.E. (as defined by the NICE guidance, NG206 - section 1.17 details additional care-needs of those with Severe or Very Severe M.E.) and thus might be expected to have more severe problems in recalling actions etc. This issue of poor active-memory is the main reason why prompting devices are inappropriate - for they cannot ensure an action is taken! In other words, I need to be prompted by a person and checked upon to ensure that action has been taken.
Typically, although not invariably, over the past two decades plus, I am more cognitively aware approximately [redacted, evening period] depending on season, weather, etc. During this period I concentrate on eating my main meal of the day. I have difficulties in co-ordinating cutlery/vessels to my mouth, so dining of itself becomes an energy-taxing activity.
Generally after waking, whether after the night or a nap, I am very groggy for quite some time. Thus, a carer waking me at 16.00 (or previously at 11.00) is not going to obtain much sense from me until I have my bearings. This latter can take a couple of hours or so.
Trafford social-services have been made aware repeatedly. However, they insist on turning up when I am very unlikely to be in a position to know what they want and unable to remember much if anything of such encounters. The social-workers invariably think they know best and ignore this. In 2020, social-workers (SWs) turned up in the morning and I lodged a formal complaint. SWs ignored that, as a few months back, yet again, they turned up earlier in the day. I repeatedly had to ask them to leave, but they insisted on continuing to put question after question. This was harassing/bullying given the ignored NICE guidance on dealing with individuals with Severe ME.
On Wednesday this week, two SWs turned up at six in the evening, as agreed, and we were able to go through an assessment-process for about [redacted, time-frame], with my housemate serving as witness.
MENTAL HEALTH
Background
I have a personal history of mental-health issues including OCD, Anxiety, Social-Anxiety, Depression and multiple suicide-attempts - included on my conditions spreadsheet. I have a personal history of child-abuse, teenage-abuse, adult-abuse, sexual-assaults and rapes. At the end of the 1990s, after my last suïcide-attempt and a mental-breakdown, I was hospitalised to give me a space in which to recover. From this I was referred to [redacted] Mental-Health Trust (contracted at the time to deal with Trafford residents). A wonderfully supportive psychologist spent a year using CBT-techniques to help bring me back into the outside world.
Depression
Since 2000, I have only once been sufficiently depressed to request (prescription-medicine only) support from my G.P. This occurred after moving home, the third-most stressful type of event after separation/divorce & death of a loved-one. It lasted but a few months whilst I became comfortable in my new world. As soon as I felt able, I apprised my G.P. that I was reducing the depression meds in order to fully come off them.
Obviously with what has occurred since August 2020, I have gradually become depressed.
Anxiety
On the other hand, I have periodic prolonged anxiety, at which points I have contacted my G.P. to increase my anti-anxiety medication. Similarly, once I have felt more my normal self, I have then requested a reduction in the medication.
However, when I last wrote to the selfsame G.P., they advised me that we are all extra stressed at the moment and did nothing for me nor explain their rationale.
Suïcidal Ideation
In 2012, when I contacted SS for some support, as at that time I was residing alone, I was some 65% bedridden. Since [redacted] 2021 I have moved from being circa 85% bed-bound to some 99% bedridden.
In Autumn of 2019, my G.P. agreed to refer me for a new inside wheelchair. My current chair is too large and unwieldy for use inside. I am still waiting for said referral. Had I had a usable wheelchair during these past couple of years, I could have gone downstairs more frequently, even out into my disabled-friendly garden constructed to support my needs. Instead I am trapped in what I cutely call my “bed-cell”!
I have increasingly been plagued by intrusive thoughts about suïcide, dreams about my own or friends’ suïcides/deaths and a waxing-waning obsession with death.
As my own G.P. was reluctant to support me, I really felt hopeless about my situation going forward.
This is made worse by the fact I appear to be slipping into the “very severe M.E.” category. Individuals rarely recover and often die. The dread of this ineluctable slide hangs over me like the Sword of Damocles…
CHANGE IN CARE-AGENCIES
Background
Covid19 hit my previous (good) care-agency hard. [Redacted] found it impossible to cover nights due to a loss of staff under the pandemic.
“A new stressor for me to add to my anxiety: my carer agency has to give up my contract along with several others. This is due to lack of staff. Most folk do not want to work nights. I should suggest giving a premium for working these shifts, but local councils do not have the money in the massively underfunded social-care system. I feel really upset about losing carers who have become such good friends. This has been the best agency I have yet experienced. Fingers crossed that the next one is just as good - or even better!” (Redacted, 2020)
I went through four care-agencies in approximately eight months, from August 2020 to April 2021. For a person with social-anxiety & anxiety the never-ending revolving staff obviously caused a deterioration in my health, both mental & physical. I lodged several complaints with Trafford Council over the poor care from the carer-agencies, with issues which included carers not having sufficient proficiency in spoken English to be able to comprehend what was required of them and me having to revert to speaking French and even Italian (which I do not really speak) or to having to use Google images. Another issue was failing to turn up in a timely fashion (i.e. c. 21.00) to make & serve my evening hot meal. And so on.
Failures
Despite each agency and Trafford social-services being provided with detailed lists of duties & requirements (again, I can forward pdfs if required), none of the last three care-agencies (including the Trafford Council-owned Re-ablement Team) have followed the lists. The result is that: I am rarely reminded to wash; I am almost never reminded to clean teeth/mouth; I am often not reminded and helped to change clothing; I am often not fed in the afternoon (my first call of the day) unless I remember to ask. And so on.
CHANGES TO MY CARE REGIMEN
From [redacted] 2020 (without any consultation with myself) to the current date, the council-owned Re-ablement Team, with Trafford social-services’ backing, cancelled my morning-call at 11.00. From then until a week last Wednesday I only had calls at 16.00 and 20.00. Since the Re-ablement Team altered their care-provision, there have been multiple effects due to the removal of the 11.00 care-call.
Eating
Since the late 1990s I have not experienced hunger. No hunger-pangs. No physiological prompt to eat. If a person does not prompt me to do so, I fail to consume food. To make matters worse, on waking I generally suffer from nausea for a couple of hours.
From August 2021 until about August 2022 (after a complaint to the Trafford CEO) I mostly only ate one meal per day at 20.00 when my housemate cooked and brought up a hot-meal. When he was not here, carers took on the duty. I got a snack at 16.00 only if I recalled (I have memory problems remember!) to request and sometimes carers prompted, but not consistently. [Redacted, the good care-agency] managed to have me eating two or three times every day. I regularly, although not daily due to the nausea, ate breakfast. Additionally, a bowl of mainly fruit snacks on the bed, meant I was constantly reminded to eat. Most days I would finish the bowl. Now a bowl lasts several days due to the changes in care-regimen, failure to prompt and failure to check what I have eaten. In other words I was at risk of malnutrition. Indeed, I recorded & reported a large drop in weight (just over 10% of my body-mass) under the current regimen, but nought was done to ameliorate the matter.
Additionally due to the change in medicating caused by cancelling the morning-call - when the medications ought to be correctly taken - I have to wait a minimum of thirty minutes prior to eating any food. This rather obviously meant no hot-food at 16.00! However my cognitive issues and lack of any appetite for over two decades, meant I very often forgot to eat the snack until around 18.00 - 19.00 when I begin to be more cognitively aware of my surroundings, etc.
In other words, even when actually being given two meals, I was eating them within one to two hours of each other.
Water
For months I was left consuming only four cups (not mugs) of water per day, two of which were medicated. This is massively below the NHS recommended daily fluid-intake for adults. From 20.00 until the next call the following day at 16.00, i.e. some twenty hours I was left without hydration. Due to inter alia poor fine-motor skills, poor strength, poor co-ordination and so forth, I cannot use a jug, bottle or thermos. A charity heard of my plight and sent me a hydration-system. However, that still requires a person to fill it with water.
Furthermore, I always thought I did get thirsty, but it now appears that mostly I do not, unless ill or extra hot. It seems it was the prompting by carers and the routine that had me drinking. The routine has now long-since been broken. The current carers noted that I often hardly touched my water. None tried to encourage me to drink an extra cup of water whilst they were here.
I contacted my G.P., as obviously extended lack of water is bound to cause ill-health effects. They advised that the matter is NOT medical and as such washed their hands of the issue. I enquired as to why after several months they had not provided hydration-powders or similar, and response came their none other than to go to A&E if I felt I needed to. As a bedridden person this was laughable advice and really rather condescending.
Medications
G.P. Review
My G.P. reviewed and altered my prescription in [redacted] 2021. They did not contact to advise me that they were undertaking a review. They did not contact me for my input. They did not contact me to advise me they had altered the prescription. They did not even undertake to carry out blood-investigations prior to making any changes. I only discovered that changes had occurred when carers began to use the revised protocol. To this day I have still had no explanation as to what occurred and the reasoning behind doing a review without blood-tests and the patient’s in-put.
Effects
Taking medication at teatime that ought to be taken in the morning has had several effects.
Increased nausea, heart-burn and acid-reflux due to the relevant medication being taken too late in the day.
Almost constant sleep-disturbances at night as evidenced my my Fitbit records pre- & post-changes to the medicating programme. I now wake up almost every wee-small-hours. This is a known side-effect of moving my anti-anxiety med to later in the day instead of in the morning.
A massive reduction in the sleep I obtain, almost half of what I normally obtain at this time of year, which cumulatively is having an adverse effect on my mental-health and stress-levels.
My G.P. has not taken any blood for testing this year to check whether the medication-changes have had any effect on my hypophosphatæmia & hypocalcæmia.
Pharmacist
It should be noted that, despite pressure form the council-owned Re-ablement Team &/or social-services, my pharmacist has refused to move the medications from the morning section of the blister-packs to the teatime section, for, as they assert, the meds need to be taken in the mornings.
Migraines
I have had classic migraines since being an older child, about eleven or twelve. I have now developed almost daily migraines including classic, stomach & retinal. I wrote to my G.P. for support, but there has been no alteration to my current six tablets every four weeks. In other words, mostly I have to put up with the migraines and the ensuing vomiting etc.
The latter must also be contributing to my on-going levels of hydration etc.
Itching & Rashes
I have had an exponential increase in rashes & itching, which are probably related to stress.
Medicated-Water
The reduction in my medicated water, from thrice per day to twice (but - recall! - taken in a narrow time-frame), has resulted in an increase in muscle ticks, spasms, pins & needles and especially cramps. This med had all but controlled these symptoms whilst being administered three times daily spread throughout the day for the past decade or so.
I made my G.P. aware of the above, but they made no alteration to the prescription nor did they give me an explanation as to their reasoning.
Bedridden
I have gone from being bedridden some 85% of the time to about 95+% since the regimen-change. Prior to the reduction from three to two care-calls, I would get downstairs for 1-3 hours two to three times per week. Now it is roughly once every 10-14 days. I mostly stagger to my en suite (3m) or have to use a urine-bottle.
Relationship
My friendship with my housemate has been severely stressed. He has been thrust into a care-rôle he did not request nor has he elicited the responsibilities. Neither has Trafford social-services contacted him to discuss the matter - not once in something like a decade!
Typically, I only see and speak to him for around five to ten minutes in the evening, when he brings up my evening-meal. The strain is palpable. He has become moody, argumentative and unpredictable. It is additionally yet another stressor to add to my anxieties.
Complaints
I have made complaints to the care-agency, social-services and Trafford Council. As there has been no alteration nor amelioration in my situation, I must assume that they were not taken seriously enough.
ANALGESIA
Background
For my worst pain, in my lower spine caused by inter alia OA, M.E. & Fibromyalgia, I am prescribed pain-patches. I also take (with G.P. consent) over-the-counter painkillers and other prescription analgesics for other pain caused by inter alia several arthritides.
Pain-Patches
Due to sensitive skin and resultant adverse reäctions, my G.P. agreed to a shorter change-cycle in [redacted] 2021. Since then they have made no enquiries as to how I am faring under this changed regimen.
Controlled-Drugs
For my worst pain I am prescribed a controlled-drug, which is a pain in itself to source, whether it be the prescription off the G.P. or the pharmacist having issues obtaining the specific medicine. I advised my G.P. back in 2021 that due to various changes in care I was suffering and continue to suffer increased pain-levels. My G.P., despite a request to do so, has not increased my prescription nor apprised me as to the reasons therefor.
Physiotherapy
I suffer many skeletal and muscular issues due to many of my conditions and their interactions. I especially suffer from Costochondritis and this really impacts my ability to breathe comfortably and pain-free. Due to being being almost totally bedridden now, I have been unable to visit my private physiotherapist (agreed with my G.P. as the best option for my circumstances) for over two years. One of the more experienced carers advised me that G.P.s can arrange therapy at home. Despite writing to my G.P. about this matter, they have not arranged any support and thus relief.
Non-Medicinal Pain-Relief
For some two decades I have used a lightly-filled hot water-bottle (HWB) under my spine. I have almost no curvature of the spine (rather like our C19th ancestors) and as such the Re-ablement Team’s suggestion of a heated bean-bag is exceedingly uncomfortable to downright painful in itself, for I have almost no flesh in the area, after some two decades of lying flat. They provided no further advice.
I also used HWBs to alleviate the symptoms of IBS. Whilst it is true that heated bean-bags do give initial relief, this only lasts around thirty minutes, whereas a HWB lasts a couple of hours. The refusal to give HWBs means I am forced to take more medicines in an effort to reduce pain.
In 2021 I asked for advice from my G.P., but none has there come.
One of my carers advised a month or so ago of a type of microwaveable soft pad. I ordered one, but as the carers have been withdrawn, not only am I not taking my circulation medication, I am not being given heat-bags nor -pads to warm my extremities. As stated above I suffer from Raynaud’s which means blood does not flow properly into my toes, fingers, nose and other parts. I have been denied the means to keep myself sufficiently warm. This is true from August 2021, when I would go some 20 hrs without the additional heating I need, to now none whatsoever. In any case, most of the carers regularly forgot to enquire whether I needed the heat-bags. A couple were more on the ball, especially the lass who advised me about the heat-pad.
It is worth pointing out here, that in almost twenty-five years of being bedridden, neither my current G.P. (15+ years), nor my previous G.P. (10+ years), nor any of the NHS hospital consultants in the three/four hospitals I have attended have ever provided any advice on dealing with being bed-bound. Additionally neither Trafford’s Re-ablement Team (which I have had more than once) nor any of the care-agencies have ever suggested items that might improve my life. For example, I now lie on a sheepskin in order to reduce sensitivity and pain - I learned this tip from other chronically-ill folk. I have never had any diëtary advice on foods to consume or avoid in order to reduce auto-immune inflammation. Only two months or so ago, a friend advised me about his support-pillow. No-one and no body had ever suggested nor provided such. And so forth…
ACTIONS TAKEN
At this time of year, for the most part: I cannot watch television due to vision issues; I cannot listen to the radio or music due to hearing issues; I cannot think for extended periods due to cognitive issues; I cannot type more than a few sentences & cannot hand-write at all due to physical issues; I cannot read extended text (i.e. more than a short paragraph) due to cognitive &/or vision issues.
Any stress makes me sleepy &/or fall asleep, unless severe and then I suffer insomnia. I have to avoid angst whether in the news or in a drama. Almost anything at the moment can set off a panic-attack. I am doing my best to remain calm and avoid as many stressors as possible.
For months, when able, I have been tweeting the Care Quality Commission, which supposedly has oversight of care-workers, care-agencies and council social-services departments. (See here.)
I have kept Trafford Council included in many of the tweets. The relevant council-person who oversees adult-care in Trafford refuses to be tagged. Apparently she is aware of all issues: yet there has been no amelioration in my situation?
There is little, if any, effective communication between my G.P., Trafford social-services & the Trafford-owned Re-ablement Team.
INCIDENT 1
On [redacted] December, two of my regular carers walked out on me. Allegedly I swore at them. This seems unlikely to me as I should never go up to someone and swear at them. The carers could not find ingredients to make a sandwich (one might think that two carers could come up with a solution to no bread by using crackers or crispbread and looking to see what foodstuffs could be used rather than what could not!). So I went down two flights of stairs on my bottom (recall I suffer chronic & severe pain in my lower-spine!). My memory is I went straight to the refrigerator to check for food. I did not look at one carer at all because she stood behind me. The other I only regarded on showing her the tub of food that could be used. The carers stated prior to departing they would be back later. They did not return. Day one with no food, no hydration-system and no heat-support.
INCIDENT 2
The next day:
“A male carer has just gone shouting through the house and entered my room. You have repeatedly been told NOT to send male carers. trafford has twice (poss thrice) apologised in writing and averred it would not happen again. It happened earlier this year twice and the same man has once again entered without permission. Due to my abuse and rape issues this is effectively assault and as previously advised I shall lodge a complaint with the police.
You have now not provided me with food nor wm at 16.00. The urine-bottle needs enptying because I am now too ill to reach my en suite thanks to over-exertion yesterday. Meds have been missed.” (all sic)
INCIDENT 3
On [redacted] December, two folk entered my property using the key-safe on the pretext of it being a “Health & Wellbeing Check”. It was the liaison at the Re-ablement Team and her newly appointed senior manager.
The liaison “was reasonable and measured. The senior manager was highly emotional, aggressive and haranguing.” (from tweet to CQC straight after visitation, 15.58). I suffer from hyperacusis (this is detailed on the conditions spreadsheet), which means what might be quiët to a healthy person is loud to me. Similarly, if one speaks loudly, to me it is like being shouted at. Effectively the senior manager, standing 1-2m from my face, was shouting at me the whole time she was in my room.
“Apparently I have been abusive to staff over the past 21 months (…) But no-one told me. Saying I swore at carers on Wed, which I certainly do not recall.” (14.31, op. cit.)
“Apparently staff too scared to tell me I was being abusive. Wasnt aware I was being abusive - if I am not advised what I am doing wrong, how am I supposed to alter?” (14.33, op. cit.)
“Manager advised that she’d like to sue me for my abuse. I asked her to do so. At which point she said she would not waste her time!” (14.43, op. cit.)
“We have agreed to go #DirectPayments route as now #Trafford can run the system for those who cannot do it themselves.” (14.44, op. cit.)
“Apparently neither manager understands #SevereME, and believe I ought to be able to answer communications as quickly as possible. Tried to explain I answer emails in batches when clear-minded enough to do so. #pwME.” (14.50, op. cit.)
“No apology for sending male carers again, for causing #anxiety, #PanicAttacks and #PTSD! Still wanted to send round more men!” (15.04, op. cit.)
“I agreed to #SocialServices visiting between 18.00–21.00, but iterated and re-iterated that the #SW might need to come over several nights as I cannæ say what days I shall be well or ill. #FluctuatingConditions #pwME” (15.29, op. cit.)
“Also agreed to a further #FinancialAssessment because apparently I have had their #care gratis over past 21 months. I pointed out that just because something is free does not excuse poor quality.” (15.31, op cit.)
“Wondering if 2 managers turning up to a #bedridden chap who is chronically/severely ill is a form of #bullying, especially given them pressing me to accept male #carers. My refusal seen as a “choice” rather than need - rape/abuse not accepted reasons for declining.” (15.35, op. cit.)
“Apart from not proffering food nor water, they did not offer meds either!” (15.59, op. cit.)
To conclude I am uncertain which parts of the conversation or their actions were actually in respect to MY health & wellbeing. The false pretext fir entering is tantamount to trespass.
*
“@CareQualityComm cc. @TraffordCouncil
#Trafford withdrawn care-support on the basis I am abusive to staff over past 21 mths. Sounds unlikely as (1.) why didnt they apprise me of inappropriate behaviours (2.) why did they fail to support employees for so long? Gave no proof! 1/2” (tweet, 13.51 10.12.22)
And I did not add, but struck me later, (3.) why send in men if I am allegedly abusive?
“2/2 informed me “all” female carers are too scared to visit because of my alleged abuse - provided no evidence that all carers had been asked. No food, water provided since Tues., no meds since Wed. Friends stepping in temporarily for food.” (13.54, op. cit.)
Note, until I pointed out that I was going to make a complaint to the police, I had heard nothing of my alleged abusive behaviours.
“@CareQualityComm cc. @TraffordCouncil
I have gone from being very poorly cared for to now not at all. The biggest #abuse by those with power. Would the #Courts consider causing malnourishment & extended periods (months) of #dehydration worse than swearing?” ( tweet, 16.12 11.12.22)
“I made you aware [also in blog-post from April 2022 the link - https://crippledqueeranglo-europeanranter.blogspot.com/2022/04/crime-death-or-asylum.html - which was also sent to various bodies] in my updated conditions-list sent out earlier this year that I suffer suicidal tendencies [list also included “suicidal ideation”]. Historically attempted several times.
The mangers when they visited for my alleged “heath & wellbeing check” never even brought up the matter.
From a check of my social-media timelines one can see I was posting about suicide prior to Wednesday.
Given my health deteriorating, failings in my care, [Mother of housemate]’s stroke, my worsening affinity with housemate, double-visits without notice nor explanation and having to d/w two folk when one is often a great effort for me, trying to change to [redacted, D’s] requested régime change, etc. it is hardly surprising I am stressed. And that’s not taking into a/c the increased pain levels and deepening malaise I always suffer in colder months.
You have collectively not made one visible effort to support me. Hardly a shock to me. People that do not think it important to feed & water a caree, surely do not care a hoot about emotional, spiritual & mental distress!
My constructive-criticism here is that you:
(i) draw up standing instructions on how to d/w distressed &/or suïcidal folk;
(ii) this is widely & thoroughly disseminated not just among employees but councillors too;
(iii) get outside support from a #SuicidePrevention org to train staff & councillors.” (email, 10.12.22 to liaison, leader of Trafford Council, & my local councillor)
Do note that whilst the liaison has had the courtesy to respond, neither the leader of Trafford Council nor his wife/my local councillor have responded to any of several emails. None of them responded to the following email of the same date.
“As you know for many months your care-service were breaching the NHS guidelines in re ensuring my hydration and nutrition. Since Summer I have been regularly offered meals at both 16.00 & 20.00. Most folk with ME (pwME) are already at a fluid disadvantage as we have approx a pint less blood than healthy folk - one of the reasons blood-donations are not accepted from pwME.
Insisting on only cooking microwave meals per senior manager’s insistence (where is this rule written?) would be great if that were possible. Housemate scours the shelves for such that do not contain any of my known allergens or his (he has a peanut allergy). I am certain salads, cereals, sandwiches boiled eggs or soup ought to be perfectly acceptable. Gradually reduced ordering fresh veg, now mostly salad stuff - leaves, peppers, tommies, fennel, beetroot, etc. Ne exception has been baked potatoes, which the carers pop in oven at four so ready for eight.
If the carers had been asked by the managers, they would have known that most of the piled up boxes in my room are the ingredients for quick ready-meals like canned curry, canned soup, several bags of 15-20 min cook risotto mix, etc. I eat a lot of pasta mostly very quick-cook, some in as little as 2-3 mins, most c.5 mins. I thought (no longer certain whether their reäctions were genuine given the senior manager’s assertion that all the girls are petrified of me and have been for the whole of my time with you!) that the lasses were happy to use ready-made pasta-sauce/passata and add some chopped extras. Again a 2-3 min job, which can be done whilst water coming to boil. I have gradually been building up some supplies. I have done this from my bed by ordering online as I cannæ get to the shops.
The service has never come to me and suggested they go shopping for what they deem acceptable meals. However, as stated above, I suspect they would find it difficult to do so.
The service also needs to be mindful of the #NHS guidelines on variety etc. Herewith a link to NHS #EatWell:
https://www.nhs.uk/live-well/eat-well/how-to-eat-a-balanced-diet/eating-a-balanced-diet/
The service has de facto been my care-agency for 21 months. They cannot aver that they are not obliged to take a/c of #NHS guidelines for long-term carees.
Over the past couple of months, the managers should know if they speak to the carers, my housemate has been commuting to [redacted] hospital after his Mother had a severe stroke. Meals that he planned to cook, obviously have had to be taken over by carers. His & my relationship is more strained than ever - you were made aware of this.
As a person with #SevereME, changes take me a very long time to accommodate. I cannot just whip down to the shops, I cannæ always even order on-line - depending on cognitive-issues. However, under [redacted, D’s] request several weeks back, we have been prepping for dinner at the tea-call. This seems to have worked out on the whole.
The last few days I have been running on adrenaline, which is why I can suddenly do things like email. However, the result of this will inevitably be a relapse, a crash in my health-status.”
CARE ACT 2014
Due to all this I searched on-line to determine whether withholding food, water, heat, medications, etc. is criminal or not. I came across AgeUK’s factsheet #78 December 2022.
It would seem that various bodies have failed to ensure my heath & wellbeing, including:
- Trafford Re-ablement Team: who ought to have known I was not receiving sufficient food & water, and ignored the negative effects upon my health of their changed care-regimen; they did not review or if they did so they did not apprise me; they failed to appropriately respond to complaints.
- Individual carers (either via (i) or whistleblowing): several carers have repeatedly commented to me that they could not understand why I did not have a morning call and similarly when carers first commenced with me.
- (iii)My G.P. & admin-staff: by failing to take my concerns raised with them seriously and avowing that malnourishment & dehydration are not matters with which they need concern themselves; inappropriate advice to go to A&E, when they should have instigated a safeguarding-check.
- (iv)Care Quality Commission: I have been apprising them for months about lack of water, food, etc; at no point did they advise me to request a safeguarding-review; nor did they request that Trafford carry out such a review.
- Current & I think previous CEO of Trafford: I sent complaints to Trafford; nothing, as far as I know, was done to ameliorate my situation - excepting the possibility that from about August this year most carers mostly prompted me to eat something at the first care-call at 14.00
- (vi) Councillor with oversight of Trafford ASS: failed to take my concerns seriously; failed to take affirmative action to improve my situation; failed to instigate a safeguarding-review.
- (vii)Leader of Trafford Council: he has been kept in the loop; as far as I know he has never replied to me nor taken any action(s) on my behalf; failed to instigate a safeguarding-review.
- (viii)Various Broadheath ward councillors whom I contacted: any who did respond, merely advised to whom they had forwarded my concerns; none instigated a safeguarding review.
- (ix) Anyone or any body I contacted who/which also failed to act.
ASSAULT & TRESPASS
Separately I wish to lodge a complaint against:
- Re-ablement Team: for sending male carers into my house, knowing full well that that is explicitly against my wishes, previous agreement with Trafford Council, and knowing I have rape & abuse issues; for repeatedly doing so - three occasions in 2022; for causing shock, distress & instigating PTSD; furthermore for making a bad situation worse by insisting I must elect to have male carers ONLY or no care-support; insisting my need is a choice, thus further bullying me.
- Male carer S: upon his last visit he was expressly told NOT to come into this house; I reälise he was trying to follow the instructions of (i) and this may mean a “vicarious liability” element, but he ignored my wishes and therefore committed trespass; for causing shock, distress & instigating PTSD; he breached carer-caree trust by opening the key-safe and using the key to let himself in.
CURRENT SITUATION
I have had no medications for 10 days, including circulation and ulcer medications.
I have had one hydration-system refill in 10 days.
I have had only one meal per day on 8 of the last 10 days.
I have had no heat-pads for 10 days.
I went with no emptying/washing of urine-bottle for 4 consecutive days when I was unable to do so myself. Thankfully the dehydration meant not much pee!
So far my weight has dropped from 68.2kg to 65.0kg in 10 days due to lack of food & water.
Neither the Trafford Re-ablement Team nor the Trafford social-workers offered to do or actually did anything to physically support me during their respective visits.
Housemate is not, does not want to be, nor has any legal responsibility to care more than what he does do. He is out most of the time either due to work or visiting his severely ill mother in hospital in [redacted] or visiting his deeply distressed brother in [redacted].
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If you reply via letter, please use a sans-serif font, 16pts or above and if you use thin printer-paper only print on one side. Otherwise I can be contacted via email on [redacted].
Obviously, my health is deteriorating now rapidly and it is possible I shall not be able to respond.
On this occasion, my housemate, [redacted], has confirmed he may be telephoned on his personal mobile [redacted] if a matter is strictly urgent. Obviously he is still going backwards & forwards to [redacted] Hospital, so may be unreachable for lengthy periods either due to the former, working &/or travelling.
I hope you can assist me before I end up so ill that I have to be hospitalised.
Yours faithfully,
Colin-Roy Hunter
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