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.

Judgmentalism of Invalids

Screaming. I awake to incessant screaming. But before I can work out the source, I am inundated by excruciating pain all over and throughout my whole body. It is then that it dawns upon me that it is me in agony and that the screams are mine. Except there is no external noise. Like the pain, the sound is internal. I open my eyes. It is still night-time: I can see the amber hue of the streetlight seeping around the edges of the window-blind. I try to lift my head to see the clock, but to no avail. I attempt to stretch out my arm and hand in order to bring the clock to my line of sight, but they will not move either. Gradually I try out various parts of my body to the accompaniment of rising panic, the never-ending pain and the continued screaming. I realise I am totally paralysed, save for my eyes. "So this is death", I think. I remain thus for a couple of days: occasionally lapsing into restless and fitful sleep; only aware of the passing of time due to the changing light conditions within my bedroom. Death. And I am in Hell, and hence the constant torture with no prospect of escape.

[Image description: photo of the manuscript image Hortus Deliciarum - Höhle (Hell) by Herrad von Lansberg, c.1180; folk being tortured in various manners by dæmons.]

It transpired I had caught a virus, a viral form of arthritis, giving me polyarthritis. Unfortunately, this proceeded to ignite my genetic disposition to osteoarthritis. In the fifteen years since that attack, arthritis of one kind or another now effects my left hip (with deferred pain into my right hip); lower spine; knees; ankles, feet and toes; wrists, hands and fingers. I am naturally of a fairly slim build, but there are days on which I swell up to look like a miniature version of the Michelin Man (inflated in all the wrong places!). However I can laugh about the effect these days with those that see me this way.

[Image description: black & white outline drawing of the Michelin man.]

I resumed my career for three months, before another bout saw me finish work permanently - although I did not know this at the time.

Since starting my last job, I had been constantly tired; but found that I did not recover at weekends or even after holidays. By the end of the week I would be limping and having to drag my leg. I was a tad scared, for I had known several folk up to that point who had experienced similar problems and they had all been diagnosed with Multiple Sclerosis (MS). After some tests I was relieved to discover I did not have MS. It transpired I have the neurological condition ME, or Myalgic Encephalomyelitis, sometimes inappropriately and incorrectly referred to as Chronic fatigue Syndrome/CFS.

All in all, I suffer from some eighty (not eighteen) conditions and/or serious symptoms. I have to keep a spreadsheet to keep track of them. These fluctuate: some with the time of year; some with the weather; some from doing activity; some from lack of activity. No two days are the same. I never know what admixture I will awaken to nor how any day will pan out.

The amount of sleep (and I am not talking about the kind of restful slumber that leaves one feeling refreshed; but rather the kind that is fitful and leaves one feeling drained); the amount of sleep I average each night has increased from twelve hours, ten years ago or so, to fourteen-and-a-half hours currently. Unfortunately, there is no pattern to my sleeping. I cannot even always predict when my body might decide it needs to rest. One specialist has described my need to sleep as “narcoleptic”.

My mobility over time has also reduced dramatically. Over sixty percent of the time I am bed-bound. On really good days I can walk with sticks and a companion. In-between times I sometimes can use a mobility-scooter and sometimes a wheelchair I propel myself, though more often I have to be pushed. I can rarely climb stairs, so more usually have to crawl up them.

My current main consultant has forbidden me from swimming and recently also from walking more than one hundred metres at a time. Furthermore I can no longer do yoga, tai chi, ærobics, cycling, gym, hiking and especially dance.

I have lost my ability to read for periods of between two months and a year. I have developed dyslexia. I have difficulties concentrating and frequently forget what I am doing. In my previous home I was advised to have the gas cooker cut off to prevent me from burning down the house! At the moment I have care-workers to supervise my culinary exploits.

Blood tests, x-rays, CT scans, MRI scans, monitors, examinations. Specialist to specialist. There is nothing much that can be done for me. Though my current GP and consultant are doing their best for me, I know, and I appreciate their efforts. I have tried all sorts of drugs off-licence and am willing to try others. I have offered to go on any trials or experimental treatments and have done so in writing not just orally. I should dearly love to retrieve my old life: to work again; to socialise whenever I wanted; to dance. To dance again.

Most days I have to decide between eating or washing as I do not have the energy for both. For someone who was very OCD, not cleaning is a personal nightmare. Not eating has worse ramifications.

Fourteen years ago I was retired on the advice of my then specialists and the occupational health team of my (large) employer. No-one in the know expects me to work again, well bar some miracle-cure or wonder-drug.

Apparently the Government thinks that only about thirty percent of those that were on incapacity benefit (IB) should actually be on it. So I and just about every other disabled person I know lives in constant dread of the brown envelope that advises us we are going to be re-assessed. I have no issue with the authorities checking that benefits are still needed. I have no issue with the Government trying to encourage folk to work if they can. Unfortunately the system they have is not fit for purpose. Their independent adviser publicly stated that the system is not working in all areas of the country. Tens of thousands of folk are having to appeal and many are winning. In the past, twice I gave up my right to some benefits because I was too unwell to appeal. When I finally did succeed I was awarded the highest of three rates, which rather demonstrates that I really ought to have been awarded the lowers rates previously, as my condition deteriorated gradually. I imagine that really sick folk are just giving up and so many do not bother to appeal.

There is also a separate benefit called disability living allowance. It is not an out-of-work benefit (although the right-wing media and even Government ministers conflate it with IB which is an out-of-work benefit), but rather is meant to compensate the disabled person for the extra costs involved in doing activities that non-disabled folk take for granted. For example, were I to meet a friend in the city centre it would cost me the best part of £30 in taxi fares rather than £5 to use the tram (inaccessible to me). Many disabled folk cannot prepare their own meals so have to purchase ready-made foodstuffs, which are more expensive. And so on...

[Image description: black cab or hackney carriage.]

So occupational health say I am incapable of work (not just the job I did). Various medical personnel, including doctors and specialist consultants say I am incapable of work (not just the job I did). Even the Government thinks large numbers of disabled folk will never work. Despite all this, with no medical expertise, with no occupational health expertise, with no evidence, without even knowledge of one’s personal circumstances, some of the public, and especially the right-wing media, insist that I am capable of doing some work. Those in this category always back up their assertions with everyone knows someone who is cheating the system. Well, if they do know someone, surely it is their civic duty, as they are so keen to save taxes, to report the alleged fraudster. There is a Government hotline for this very purpose. Interestingly some ninety-seven percent of the so-called cheats have been found to be genuine claimants.

I, along with many other disabled folk, have paid high levels of National Insurance (NI) in the past, along with our taxes. The State took the money promising to support us if one’s health deteriorated or one found oneself in straitened circumstances, i.e no money on which to survive. But even those who have not paid tax and/or NI, ought to receive assistance in a civilised society.

The politics of envy is divisive and cruel. It’s about time politicians grew up and behaved like the exemplars they are supposed to be. It’s about time individuals grew up and educated themselves. Judgmentalism is not pretty and it certainly is invalid.