My Personal Social-Care Crisis

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.

*

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! 😢 

*

Unanswered letters to G.P. after 17 & 6 months

 

TRIGGER WARNINGS: attempted suïcide, suïcidal ideätion

•

In July 2023 I emailed a long letter, my annual review for 2022/3, to my G.P. covering various subjects including suïcidal ideätion, safeguarding and pain-managment. I received no response. No assistance. No change in drug regimen.

I have severe M.E. This means it usually takes me weeks or months to write a letter of any length.

I wrote a second letter to my G.P., covering my annual review of 2023/4 as well as that of 2022/3. This time my advocate arranged for it to be printed and hand-delivered to the surgery. I insisted upon an acknowledgment. That is all the response I received.

Below are the contents of the two letters, redacted to hide identifiers.

•

Colin-Roy Hunter Esq. B.Ed. (Hons.)

[redacted]

Advocate:

[redacted]

Private & Confidential

For the Personal Attention of

Dr. [redacted]

[redacted] Medical Centre

By Hand

[redacted] July 2024

Dear Dr. [redacted],

1. I have been writing this letter over the past six months. As you no doubt recall, it takes me a long time to type and thinking clearly is often impossible or very difficult. My cognitive abilities have perorated quite significantly over the past year. 

2. Neither myself nor more importantly my advocate received a response to my letter of “[redacted] July 2023”, which, given you are not the type of person to ignore correspondence, must have either been lost in your electronic æther or possibly withheld from you. In the circumstances, my advocate has arranged for this missive to be hand-delivered.

3. I shall quote the totality of my previous letter (in italics), in the order raised therein, and then comment further as needed.

4. DREAMS

“I am in a dark, cold, damp, steep-sided valley. My companion and myself are traipsing slowly along its course.

I turn round to see my friend has stopped. He is a couple of hundred metres behind me. Suddenly an inferno, like a pyroclastic-flow, shoots down the valley. I call out to my friend to take cover or aim for higher ground. He turns to glance at the impending doom. He looks back at me and stands his ground. I repeatedly plea for him to move to safety. I watch as he is immolated.

At this point another friend appears in a truck and goes shooting past me along the gravel track. I follow as the vehicle speeds down-valley. I note that the trackway veers sharply, almost perpendicular, from the valley-floor and thus away from the impending hellfire. However, my friend does not take the safe pass. Instead he drives his truck over the cliff-edge at the end of the valley. He is killed in the resulting explosion.

The fiery doom follows, sweeping over the cliff.

Then darkness. And cold that chills to the bone. Drizzle soaks through my clothes. And I am alone in the silence.”

*

This is typical of the vivid dreams I experience almost daily. I awaken drained and shaken.

5. In the early months of 2024 I was still dreaming nightly about death, but more recently such dreams have become more sporadic, typically 1-2X/week.

6. SUICIDAL IDEATION

I am plagued throughout each and every day with thoughts of suïcide &/or of friends’ deaths (both loved ones who have actually died and those who are very much alive) &/or my own dying experience. My suïcidal ideätion has not been this bad since the late 1990s. Indeed, prior to the Trafford Re-ablement Team taking over my care, I have this century rarely thought about suïcide other than for end-of-life/living-will purposes. I did warn that I feared my state-of-mind would pejorate if not dealt with.

7. I ended up attempting suïcide 3X in 2023. The first and third attempts were unplanned and were moments of deep despair and despondency. These were overdoses with whatever was to hand.

8. The first attempt was [redacted] 2023, after your visit and whilst awaiting very much delayed pharmaceutical support. I took an overdose of mixed painkillers. The result, thankfully, was a prolonged, uninterrupted slumber with no noticeable ill-effects.

9. The third attempt was [redacted] October 2023. I used to keep a large number of unwanted medications in a bowl on my bedside-table. I just swallowed a handful. Only deleterious effect appears to have been prolonged vomiting and retching. [redacted - housemate] has since taken all excess medications to the pharmacy for disposal.

10. The second attempt, is/was perhaps more significant as it was a planned attempt. In September I suffered a severe infection (more below, q.v.) which meant I could not eat for just under a fortnight. I had understood that death via starvation is painful; however, I noted no pain other than my customary ones. I decided to extend the food-free period, with no noticeable extra symptoms. I did however sip water. The extended fast was brought to a close by [redacted - housemate] purposefully bringing home a selection of McD’s breakfast foodstuffs. My failure to see through my plan partially led to attempt 3.

11. With the arrival of 2024, I have thus far not felt the nadirs of 2023. 2-3X/month I still ponder suïcide, but have been able to ignore the sirenic calls.

12. I suspect being able to leave the house more frequently has been contributing to a reduction in stress-levels.

13. SAFEGUARDING

Despite apprising yourself, my G.P., Dr. [redacted], my consultant, the Re-ablement Team, Trafford ASS, the CEO of Trafford, the Leader of Trafford Council, and all three Broadheath local councillors about my suïcidal thoughts, none of you took any action. This added to the individual & collective failures to act to ensure I was appropriately fed, watered & medicated, has left me untrusting of those who ought to be safeguarding me. I contacted the police. They also failed to act until an anonymous member of the public contacted them. They visited once. I have heard nothing since.

14. The position appears unchanged.

15. HOUSEMATE & FOOD

My housemate is unable to remind me to take medications and 2-3 times each month omits to feed me my one meal per day. Indeed, he is now struggling to even prepare & cook meals.

16. Due to [redacted - housemate’s] deteriorating dementia, he is struggling even more with prepping, cooking and even serving my 1X meal/day.

17. He has still not been offered carer support from Trafford Social Services. So since 2006 they have given him zero help and support despite expecting him to care for me. This is in breach of legal requirements.

18. HYDRATION

I rarely get adequate hydration. (The hydration-system has not been used since your visit in May - as I cannot fill it and no-one else recalls to do so - nor from December 2022 to March 2023 incl.).

19. The hydration-system is still not in usage as [redacted - housemate] cannot recall to use and I cannot recall to prompt him. It is especially needed during the night/morning when my body is unable to raise a cup nor to co-ordinate to my lips without spillage.

20. I am actually managing some more liquids this year over all, due to an “improvement” in my physical abilities (more below, q.v.).

21. MEDICATION & AFFINITIES

[redacted], my advocate, & [redacted] (my friend & ex-boyfriend) have admirably and reliably video-called each weekday & weekend morning respectively. However there was a fortnight’s delay in supplying the prescriptions as the surgery & pharmacy bounced the prescription from one to the other, neither treating the matter with any sense of urgency.

22. It was during this time I made my first suïcide attempt of 2023 (see above).

23. I only take one dose of the phosphate as I should require to be reminded in the evening to take the second dose. Because [redacted - housemate] never knows when he is going to be at home, mealtime is any time between 18.00 - 21.30, no-one would know when to call to prompt me to take the med. In any case, I am causing my good friends sufficient trouble without adding further obligations. Furthermore, such would deleteriously affect the dynamic of my affinities.

24. The situation is unchanged. Having fresh blood-tests might determine whether the Sandoz-Phosphate is still required.

25. SYMPTOM IMPROVEMENTS

Benefits of taking the meds include the ending of body-jolts during sleep, a massive reduction in visible body tremors/shaking and a reduction in low-grade fevers & drenching sweats. Now the tremors/shakes only occur when I am excessively tired mentally/emotionally/physically.

26. As 2024 has elapsed, I have found I have been able to do more this year but this has paired with a consequential increase in hours of sleep and a massive increase in migraines/cluster-headaches, neuralgia and other pains (more below, q.v.).

27.

In 2022 I left the house 5X.

In 2023 I left the house 9X.

In 2024 I left the house 13X (thus far i.e. 28 weeks).

28. Not only have I left the house more frequently, but I have been able to go further afield, occasionally without the dilapidated wheelchair. This has included visits to my optician (after 2 years without new, much-needed specs), local supermarkets and my new dentist (more below, q.v.).

29. MIGRAINES

I did not have a single migraine from [redacted] inclusive. This is the longest migraine-free period since early 2020. I had five migraines over the period [redacted] July, but none since - that’s tempting them! Ha ha  One of those migraines was the third or fourth time I have had to take a second tablet, but then it slowly resolved.

30. After the Trafford carers stopped attending, I experienced a massive drop in migraines in late 2022 and throughout 2023.

31. I have had three sets of cluster migraines so far in 2024.

3 weeks in January.

3 weeks in April.

5 weeks in June-July.

31. The Rizatriptan are a real g*dsend, although because some of the generics do not dissolve but form a strongly-minty paste in the mouth, occasionally I vomit/retch simply from attempting to take the medicine.

32. During this past few weeks I found that I have been having an exceedingly dry-throat, which I put down to having to take a dose of Rizatriptan almost daily. I have also suffered other throat issues (more below, q.v.).

33. My explanation for the huge increase in migraines is my increased activity levels in addition to the stresses of dealing with [redacted - housemate] worsening dementia and his own suïcidal ideation. With regards the latter issue, with his knowledge, I emailed his brother and also his best friend to apprise them. (They both were already aware of his cognitive difficulties.) Since they have chatted with him, [redacted - housemate] seems to have calmed. Furthermore, I suspect neuralgia is also linked somehow to my migraines (see below).

34. HR & BREATHING

My resting heart-rate has dropped from high 60s/low 70s to typically 60-65 bpm. This is closer to where it was a couple of years ago per the Fitbit records. My heart-rate variability remains unchanged within the range 8 - 14 ms, with one exception. My breathing-rate has increased from 8-20 to 7-24 breaths-per-minute since medication recommenced.

35. My FitBit died in May this year, 4 years, 1 month after I commenced using it. I do not intend to replace it, as I consider 4 years of data ought to be sufficient for anyone’s needs.

36. SLEEP

My sleep pattern is still non-existent, but I am gradually cumulatively slumbering for longer each day (in a directional perspective - day by day is still totally erratic).

37. As stated above, with my increased activity-levels has come increased hours of sleep, on average 2 hours/night. I am additionally resting more frequently, lying still with my eyes closed and without stimulations, for periods of between 30-90 minutes.

38. SYMPTOM DETERIORATIONS

The muscle-ticks, spasms & pulses have increased frequency and duration. Oddly, cramping has also increased. I have mouth-ulcers most of the time now. I feel really run-down. The M.E./F.M. “poisoning” sensation is more acute. I have constant toothache - in different places in my jaw. Previously my dentist advised this was related to the M.E./F.M. (I remind you that I have not seen a dentist since becoming so badly bedridden and that arrangements need to be made for a home inspection.) There has also been an increase in neuralgia in my cheek/jaw, again not in the same spot each time. Paracetamol has been sufficient to deal with, so I do not consider these attacks are migraine-related. Additionally, this year my hay-fever cum perennial rhinitis has been at its worst since the early 1980s. Whilst I generally have throat issues during Autumn/Winter, these have continued which means sore throats, swollen & hardened glands, hoarseness and voice-loss. Previously these latter would be “morning” phenomena, but they are now occurring towards the end of the day as well.

39. I still suffer a lot from mouth-ulcers and the level of cramps, ticks, etc. seems unchanged.

40. The dental issues have been part resolved (see below).

41. Whilst still suffering most days from some kind of neuralgia, the pain-levels are much lower than previously - that is, since my dental treatment in April 2024.

42. Yet again, my hay-fever/perennial-rhinitis symptoms have deteriorated, worse than 2023, possibly due to leaving the house more frequently.

43. My voice issues have remained about the same as 2023.

44. CBT

I no longer have a “happy place” to take myself to in a meditative manner. If I ponder on happy events from the past, I quickly recall the negative consequences or subsequent events or how an affinity ended. The CBT techniques I was taught and have implemented since the late nineties, no longer work for me.

45. Following on from my comments above, I have now cut myself off from almost all social-media (SM), as reading about others’ difficulties upsets and drains me. Similarly I am down to only regularly playing one online game from about a dozen, as I was finding almost all would trigger me. The current game is fantasy, but on stressed-out days I just log in and out, to earn my daily points and nothing else.

46. PROGNOSIS

My present feels hellish as I am all but trapped the vast majority of the time in my bed-cell and can no longer participate in my hobbies (until the change in regimen in August 2021 I was still regularly doing genealogy, learning Portuguese [my 5th language], creätive-writing, cooking, etc.). I no longer can see a future for myself. My condition has, despite shorter periods of amelioration, been following a constant deteriorating, downwards projection. From Severe ME the route can thus only be Very Severe ME. I cannot imagine anything more horrific! Whatever option to improve my situation that I creäte in my mind’s-eye rapidly degenerates into impracticality and impossibility.

47. I see nothing, despite trying to keep up with advances in research, that currently indicates a more positive possible future for myself.

48. DESPAIR 

Even the little things that used to give me joy such as birdsong, the pattering of rain or children playing, all now jar: the avian chorus pierces my ears due to a worsening of the hyperacusis; the dampness aggravates the arthritides; the children’s screams cause my heart to jolt and panic.

49. I suspect now I am more despondent than despairing. As I am more physically able, I close the windows to shut out sounds, so my ear’s do not hurt for extended periods as much and nor do I get emotionally upset upon hearing the children crying.

50. Also being able to occasionally leave the house cheers me up no end.

51. INFECTION

In September 2023 I was brought down by a massive infection with included cold fevers with profuse sweating, excessive shivering & teeth-chattering, sleeplessness, vomiting initially and then dry-retching, all-over body arthralgia/myalgia and some of the most agonising head-pain I have ever experienced (only 2-3X previously in my whole life). This lasted just under a fortnight.

52. The focal-point for the head-pain was the arachnid-cyst. I am assuming, as it is  benign, the cyst is some kind of neural weakness and hence why the pains concentrated there.

53. DENTIST

In April 2024 a tooth dropped out of my mouth in several pieces. There was no toothache above my usual daily levels (due to daily neuralgia).

54. There is a relatively new dentist by Waitrose, called “My New Smile” (Altrincham - https://mynewsmilealtrincham.co.uk/). It is disabled-accessible, even in the wheelchair. However, I have been able to enter on foot with walking-sticks, having been dropped off two metres from the entrance. I doubt there are many such accessible dentists in Trafford. I have signed up as a private patient as the pricing is comparable with the NHS, and significantly less than BUPA.

55. The broken tooth has been replaced with a beautiful white filling and there have been no ill-effects.

56. Indeed, in June, I returned for a general inspection. My jaw was x-rayed and the dentist determined that I have no tooth-decay at all, despite not being able to clean my teeth. A relief to be sure. I discussed my inability to visit during the cooler/colder months, so we agreed my next visit will be some time in April 2025, at my discretion.

57. If you have made attempts for the peripatetic dental team to visit, please cancel them, as I have no doubt others are in desperate need of their home services.

58. THROAT & OTHER LYMPH-NODES

I have had an increase in swollen throats and hardening/swelling of the RHS lymph-nodes. There has not been an increase in lymph-gland swelling in my RHS armpit nor my RHS thigh, my usual culprits.

59. However, there has been an increase in acrid sweat from my RHS armpit. On a day-to-day basis it is almost always the LHS axial that emits the acrid odour. I am supposing that the increased activity-levels and the worsening hay-fever/perennial-rhinitis are to blame.

60. NEURALGIA

I do not know whether it is the cause of my migraines or v.v. However, during the migraine clusters sleeping on my side or back causes localised neuralgia in cheek/jaw/teeth/ear/eye/neck. Switching position simply initiates neuralgia in the areas being pressured.

61. Effectively I have to sit upright, and, due to OI/equilibrioception issues means I have to lean slightly forwards with my head and neck cushioned to prevent movement (which leads to => dizziness => nausea => vomiting). This position then aggravates my lower-spine and may be the reason for increased pelvic pain (see below).

62. PELVIC, HIP PAIN & LOWER-SPINE

Increased frequency and intensity of pelvic, hip & lower-spine pains seem to correspond with the cluster migraines, but may also be adversely effected by my increased mobility &/or increased hypersomnia. 

63. ECZEMA

Since last Summer (2023) I have experienced incessant itchy ears and sporadic itchy eyelids.

64. I try my best not to let water into my ears, but it does happen, and then the itchiness becomes intolerable. I am assuming it is the eczema. This irritation has been a daily occurrence for about a year now. Last time it flared up, you prescribed something, but I cannot recall what.

65. Similarly the upper edge of my lower-eyelids have become very irritated. It may correspond with what I can only describe as acidic tears. Possibly related to hay-fever/perennial-rhinitis?

66. PAINKILLERS

I suspect due to my increased mobility in conjunction with this year’s rather damp weather, I have experienced several episodes of extreme pain, which neither the pain-patches nor paracetamol nor codeine alleviate.

67. I have not requested them for several years, as I have not needed them; however, I do now need a prescription for Tapentadol.

68. WHEELCHAIR/S

My wheelchair is over a decade old and dilapidated (due to failures by the NHS to maintain), with a couple of parts broken and rusted. Even for Rico, it is now difficult to push.

69. I have been requesting a replacement wheelchair for several years now. WTMC do not appear to have taken pro-active action. Trafford Re-Ablement Team refused point-blank to assist (in the same way they refused to help with a shower-seat, hydration-system, etc.). Trafford ASS have taken no pro-active steps either.

70. I have been forced to remain bedridden far more than necessary, since at least 2019, because no agency has or will take the lead.

71. I still require a small, light-weight chair that I can manœuvre myself on the ground-floor and in the garden.

72. I now also need a more robust chair for out & about. To give me some independence I am going to need something that is self-powered, as (due to atrophy from being inactive over the past five years) I no longer have the muscles nor stamina to self-propel for longer periods or on uneven ground.

73. I am hoping that you could now take the lead in procuring these vital accommodations or press whichever agency ought to do so, in line with 1.17.1 of NG206 (https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#care-for-people-with-severe-or-very-severe-mecfs).

74. BED & MATTRESS

My mattress is now 25 years old and I need to replace. However before I do so, I need any advice as to what especially I ought to be looking for given:

* hours of being bedridden;

* need to be able to self-rotate (to prevent pressure-sores);

* need for firmness, as I have had orthopædic mattresses since 1982;

* general comfort;

* possible future-proofing.

75. Perhaps, even prior to considering the mattress, I ought to consider do I need to change my bed. For example, would I be better off with an electric bed that allows changes in position? I do not know how far into the future I ought to consider…

76. BATHING

Since the removal of council support, my personal hygiene, which they were not good at looking after, has deteriorated. [redacted - housemate] permits me a weekly bath, and during the hot weather he supported 3X showers.

77. I note there is some research to suggest that hot-baths ameliorate the symptoms of arthritides. This I have found to be so. Usually [redacted - housemate] adds salts to the water. I have found soaking for up to an hour reduces both arthralgic and myalgic pains for up to 3 hours. To be pain-free even for a short time is a total blessing.

78. If I take a bath, I have no difficulties in entering, but about 1:5 baths I have trouble exiting without assistance from [redacted - housemate].

79. Would you be willing to support some kind of bathing accommodation?

80. RESIDENTIAL ACCOMMODATION

I have (hopefully) appended a spreadsheet of 7 possible options for my future accommodation: 4 that would mean I could remain in my own home; 3 that require that I move home.

81. Would you please consider what options you might be able to support and advise my advocate.

82. CARE & SUPPORT PLAN

Please will you press for the “care & support plan” to which I am entitled under 2021’s NG206 1.5. If this has already been requested, please forward a copy of the relevant correspondence to my advocate.

83. Per op. cit. 1.15.1 primary-care is expected to,

Offer adults with ME/CFS a review of their care and support plan in primary care at least once a year.

84. FINAL REMARKS

So, in short, I am no calmer and my mental/emotional/spiritual states are on a downward trajectory. I hope this report of the past six weeks or so is what you are after. I am sending it to you via [redacted - advocate]. Let her know if you need any other info from myself.

85. I reälise this is an extremely long and involved missive that will require some time to fully respond to; however, given the failure to respond to last year’s letter, please kindly confirm receipt to my advocate, so we know that the matters are in hand.

86. Once my advocate & myself are able to ponder and query as necessary your responses, [redacted - advocate] will try to organise for us all to meet with Trafford ASS and thrash out an action-plan.

I hope all goes well with you & yours.

Sincerely,

Colin

[Not] Appended:

* Spreadsheet of possible residential accommodations.