Medical Support for the House-bound

Last week I was reminded that Trafford Healthwatch are running a survey:

Healthwatch Trafford have today launched a survey to look at how people with ME /CFS experience health services in the area.

[undated, from April 2015]

According to MeManchester:

WHO IS IT FOR?

 For anyone in England with ME or CFS, even though it says Trafford.

Please complete this questionnaire, if you are able; for, the more responses, the more the likelihood that Healthwatch can and will take action.

I fought for two years, backed by my G.P. and my hospital consultant, to get a support package off ‪Trafford‬ PCT - who did everything they could to impede my success. As I understand it I was only the second person ever to succeed with them.

The now defunct Manchester community nursing ‪ME/CFS‬ support team (sorry - cannot recall their actual name) visited my home, as I was and am classed as "severe" under the ‪‎NICE‬ guidelines and by my hospital consultant. They helped me audit my energy usage and suggested actions I could do to help myself. For example, I still have a chair on the stairs landing so as to take a rest part way down, rather than trying to do in one go. I still have slogans mounted in my bedroom to remind me of various actions that due to dyscognition and memory issues I frequently forget.

My consultant runs specialist ‪ME‬ support clinics at the hospital I attend annually. Alas, due to the severity of my condition - I am for the most part housebound with occasional supported outings - I am unable to access those clinics. I am not in the "most severe" category of those on drips and so forth.

I do think more needs to be done for housebound sufferers, not just of‪ Myalgic Encephalomyelitis‬ but also ‪Lupus‬, ‪Fibromyalgia‬, ‪Arthritis‬, etc.

"This is the face" of M.E.

This is the face

This is the face of someone who is too sick to take her child to school each day.

This is the face of someone who has spent the last 5 hours lying in bed.

This is the face of someone who spent those 5 hours asleep, in tears, in pain.

This is the face of someone who can't have a wash without help.

This is the face of someone who was ignored by doctors for 6 years.

This is the face of someone who is often disbelieved.

This is the face of someone who is having a good day if she can make it downstairs by herself.

This is the face of someone who can't leave her house without a wheelchair.

This is the face of someone who has learnt how to apply makeup lying down.

This is the face of someone who is 80% housebound.

This is the face of someone with Myalgic Encephalomyelitis.

This is the face of someone with a chronic illness.

This is the face of someone with an invisible illness.

This is the face of just one of hundreds of thousands of people with chronic, invisible, life changing, debilitating and disabling illnesses.

This is the face of someone who wants the world to know about invisible illnesses.

This is the face of someone who lives in pain all day, every day.

This is the face of someone who wants awareness.

This is the face of someone who wants a cure.

This is the face of me & of M.E.

[Image description: see text above; courtesy & © Sophie Turner]

This superb poem with accompanying photo was published on instagram where Sophie is known as bambimax. She also has a blog, Nonsense from my 'home office' (sofa), as well as a twitter account. Sophie has given me permission to re-blog this as part of M.E. Awareness Month.

Monday 12th May is International M.E. Awareness Day, and I hope to post a personal account on the day or as near as possible as I am able.

DWP Aggro & Clairvoyant Nurse

Regular readers will know of my own personal struggles with DWP which is a mere reflection of what is happening to millions of disabled and/or chronically sick folk throughout the UK.

In March I wrote about my personal ongoing torment of DWP's ESA50 form.

In April I wondered whether I actually had an agreed settlement in ESA50 Resolution? As I stated at the time I wrote a detailed letter with several queries in order that I could determine my position, as the DWP's communications are far from elucidatory. They did not bother to respond, not even a holding letter.

Earlier in November, I received a further DWP letter advising me that I would be required to attend a work-related interview. In my post Is DWP Harassing ESA Support Group Claimants? I included the text of my last letter.

Today I received the following, with no covering letter and certainly no answers to my queries. The third print-out has a printed date of 21st November 2013.

It would probably also be useful for the reader to see my letter of 10th to 27th April 2013 to DWP.

re award of employment & support allowance

With reference to your letter of 4th April (received 10th inst.), confirming the award of ESA, I note that there is no information to enlighten me as to how the DWP reached the decision. However, your letter does state I am permitted to:

" •     ask for an explanation

  •     ask for a written statement of reasons for our decision "

I think it is in my best interests that I do so, as one never knows what future changes are up the politicians' sleeves; so I really do need to know on what basis the decisions were reached. Please therefore provide me with a full explanation and full written statement of the reasons for the DWP decision.

Furthermore, the contents advise me that I am "entitled to contribution-based Employment and Support Allowance"; but oddly enough there is no explanation as to what this is or what the ramifications are, if any. I should appreciate some clarification.

Additionally, the letter states I "have been placed in the support group because [my] illness or disability restricts the possibility of working." Again no elucidation. Can you explain what this support group actually is. I know the current Government has repeatedly stated that those disabled folk who need extra support will receive it. Is this the support group? What extra support am I or shall I be receiving?

Apparently I am also going to get a '"top-up" payment; but I am uncertain why it is needed or what it is. Or is this the extra support referred to in my paragraph above?

As you are no doubt aware, many of my conditions are untreatable currently, and unlikely to be within at least the next fifteen years if ever, and some are simply degenerative. In addition, I have now been transferred to an “indefinite” award in respect to my DLA. I note there appears to be no reference in the letter to when I might be assessed again. Could you please provide an estimate. I need this re-assurance so that I can consider (assuming I am not to be re-assessed imminently) coming off anti-anxiety medication which I have had to take since the current welfare reforms began some two-to-three years ago (due to the immense worry created in the media and on social networks, including by ministerial and DWP statements and press releases). May I also remind you that my conditions tend to ameliorate in the summer months (typically May to August) and so it is better for my health if claim forms were to be issued during these months. I would consider this a reasonable adjustment to make to take account of my disabilities and so trust you can accommodate.

I think that is everything I need to ask at this juncture; but obviously I may need to come back to you, depending on the contents of your response.

I look forward to your reply in due course.

Yours sincerely,

It is quite clear that my queries have not really been answered. Furthermore, I now have more queries.

Page 1 of my ten page list of illnesses and conditions states I suffer from anxiety and depression; page 9 that I have made several suicide attempts. The list quite clearly reveals mental health, neurological and progressive issues. As I understand it, nurses are not qualified to review cases such as my own, so I have to wonder who permitted Ms Emma Roberts (Registered Nurse) to do so. Also why did she not refer my case to a properly qualified medical expert?

It is also interesting to note that Ms Roberts also felt able to judge that "work could be considered in 18 months." There is only anecdotal evidence that folk suffering from the severe form (as diagnosed by my hospital specialist consultant in line with the NICE guidelines) of ME/CFS ever recover and certainly no mainstream medical evidence. On what basis therefore has Ms Roberts come to such a judgement?

Additionally, whilst admitting I did submit a hundred pages of evidence, my submission contains information pointing to deterioration not amelioration in my condition. If Ms Roberts had looked at the information submitted to DWP over some fifteen years, she would have also realised that this has been a gradual but continuing trend.

My health is so complicated that I have joint lead healthcare professionals, not a single lead HCP as is the norm. Neither my consultant, who specialises in ME/CFS treatment nor my GP feel they can offer me hope of recovery sufficient to be able to look after myself let alone work. How is it that Ms Roberts is able to do so?

My application also quoted the as were Reg. 29 & Reg. 35 clauses that enable one to remain in the "support group" rather than the WRAG when such work would be detrimental to one's health. How could Ms Roberts ignore them?

I wonder whether the Bolton office realised something might be awry and hence decided not to respond to my letter from late April. Or is all just cock-up, bureaucratic inefficiency!

It certainly feels like torture. I am still calming down from my panic-attack on reading the latest communication from DWP. Surely the officials must know they are complicit in mental torture, shouldn't they?

I'll give the DWP a few days to get a follow-up letter to me; then it will be all guns blazing. Time to get my MP involved. Oh, and Ms Roberts RN, I'll be lodging a complaint against you with your medical body.