1. About me:
I am a 63-year-old male and I live alone in a one-bedroom flat which I have occupied since 2001.
I have two recognised forms of disability: the first is “cyclical depression”, a form of bipolar depression. I have lived with this condition since I was a teenager and apart from a three-month stay in a residential community in 1987 I have not missed work because of it.
The second and most disabling condition led to my enforced retirement from work in 2004. “Degenerative Disc Disease” is a condition similar to osteoporosis. It is gradually destroying discs in the lumbar region of my spine causing the spine to “crumble”. Arthritis occupies the spaces left by destroyed discs and puts pressure on various nerves and, to some extent, on the spinal-cord. In addition to affecting my mobility this second condition means I live with continuous chronic back pain and Sciatica, and, because the degenerative nature of the condition means I wake with a different “disability” each morning, I experience occasional bouts of encopresis and/or enuresis.
Because of my inability to adjust to the requirements of formal education – caused by what I now realise were early symptoms of my developing mental illness – I left school in 1965 when I was 15 years old and embarked on a journey which led to me achieving my true academic potential when I was 40 years old.
In a nutshell, during my teens and early twenties I made and mended things, in my twenties I sold things. Through my thirties I managed departments and staff engaged in retail activities, and the advancing new technologies, all the while becoming increasingly involved in voluntary work (mainly with people coming to terms with, and learning to manage, symptoms of psychiatric illness’) within my local community. My increasing involvement in the voluntary sector culminated in me taking a full time social work post when I was 38 years old.
Two years later I was seconded to Reading University where I obtained the Certificate of Qualification in Social Work. This facilitated my involvement in the statutory elements of social work. Eight years later I was an area manager of a Child Protection social work team when the first three lumbar discs “burst”; causing a lengthy period of inactivity whilst my condition was diagnosed, a prognosis decided upon. This period culminated with my “medical retirement” from Social Work.
The prognosis was/is total loss of mobility at some unidentifiable point in the future with probable paraplegia depending on where pressure is applied to my spinal-cord. At that point I will require an operation which itself carries such a high risk of causing paraplegia that my consultant will not perform the operation until I loose mobility.
At that time I was advised not to attempt the rigours of paid employment and I was “medically retired” from Social Work. I considered myself too young, (at 48 years old), to enter into a life of total inactivity so, after identifying occupations which I could continue in when I require a wheelchair, I invested my retirement lump sum payment in obtaining Further Education Teaching Qualifications; culminating with the “Cert Ed” from Greenwich University.
I had obtained a course leader and lecturer post at a further education college during my training. The post involved commuting over 100 miles each day which led to further degeneration of my spine. I began to purchase the flat I now live in because it is local to the
college at which I worked. I was granted the mobility component of DLA because medical personnel involved in my treatment recommended that I should not use public transport as the degeneration of my spine was being accelerated by the stop start nature of such transport. The dangers of sometimes being unable to sit whilst the transport was in motion, in addition to aggravating skeletal and nerve damage, carries an immediate risk of paralysis.
Because relocation nearer to my workplace meant I would be living alone I was also assessed as qualifying for the lower rate of DLA with which to employ a Homecare Agency to carry out those aspects of domestic activity – cleaning, ironing etc – that were considered “dangerous” for me to undertake.
That remained the status quo until further deterioration of my spine led to intolerable levels of pain which, in turn, led to my “managed” depression becoming chronic once more. During the summer of 2004 I experienced a total mental breakdown requiring daily attendance and treatment at the day hospital attached to my local Psychiatric Illness Unit. During this period the specialists involved in both my physical and my psychiatric treatment opined that I now faced a future in which my chronic back pain and my chronic depression would continuously impact upon one another. I was again “medically retired” from paid employment.
The accuracy of that prognosis was proved in 2007 when, of my own volition, I embarked on a few hours of voluntary work at a local day centre each week teaching computer skills to older persons. Within two months several aspects of my illness’: the levels of pain I was experiencing; the recognition of my loss of further “life skills”; and the realisation that my working life – and in my opinion my usefulness – was really over; overwhelmed me to such an extent that I once again required assistance from the psychiatric day hospital, some of which is still in place to this day.
Because I was in “salaried” occupations with good fringe benefits I made no demands on the National Benefit Agencies until my enforced full-time retirement in 2005.
2. My current circumstances.
The deterioration of my spine continues to such an extent that there are days on which I am unable to stand for long enough to complete simple tasks such as washing up or cooking a basic meal. I am dictating this document through speech recognition software because “today” pain while typing is of such intensity that I am unable to concentrate on what I write. There is a continuous need to readjust my position so I spend each day moving between sitting, laying, standing, crouching, or pacing up and down while attempting to find a position that affords some relief from the pain or the strange sensations that move up and down the nerves in my legs, my buttocks, or my lower back.
My lower rate DLA became insufficient to employ a cleaner for even a few hours a week some years ago. It is now almost completely swallowed up by the cost of cleaning materials and equipment, or the cost of fuel required to source these things. My family provide physical assistance when and where they are able to but they are also of advancing years, and need to travel great distances, (while managing increasing fuel prices), to visit and assist me. As my entire DLA mobility funding is paid directly to Motability to lease a car the rising cost of fuel means I am no longer able to visit them.
I am currently on high levels of antidepressant medication which I am told would have required my admission to a psychiatric hospital in the past, this is no longer the case as the facilities no longer exist.
I am fortunate that I have a GP who takes an active interest in “pain relief”, – not all GP’s do, – and we have worked together at managing my back pain. This mainly takes the form of changing the types and strengths of my medication, while ensuring I gain the maximum usage of each type before it is no longer sufficiently effective. I am currently taking an opiate which has some negative affects on my cognitive functioning, but which does facilitate a degree of relief from the continuous pain. At this time we have almost run out of options and the probability of me requiring the high risk surgery before I lose my mobility (see above) is increasing.
As a consequence of the two major conditions described above, and the inactivity caused by them, I now also require treatment for Type II Diabetes, for Hypertension, for Chronic Obstructive Airways Disease, and for Osteo-Arthritis in other joints stemming from “Compensatory” Injuries and Mild Obesity.
I am fortunate if I sleep for more than four or five hours on any night and occasionally I am unable to sleep at all because of back pain, nerve sensations, or both. Lack of sleep has been identified as a major “trigger” and “indicator” of an impending chronic depressive episode. This causes me to continuously fight an exhausting cognitive battle during which I have to reinforce acknowledgement that it is for physical, and not psychiatric, reasons that the lack of sleep is occurring.
My savings were exhausted by the end of 2010. Since that time firstly the DSS, and currently the Pension Credit Service, have provided Housing Benefit to the equivalent of approximately half of my monthly mortgage costs. They do not contribute the full amount because I receive a small occupational pension as a result of the 10 years I spent as a social worker. I do not yet receive the state retirement pension because that will only become available when I am 65 years old. My benefits are subject to income tax because I receive my occupational pension.
In December 2014 the state pension will replace the laughably named “Employment Support Allowance” which I currently receive and which is also capped because of my occupational pension.
I was transferred from Incapacity Benefit to the ESA in February 2012 without any assessment taking place. With the assistance of the professionals involved in my care I appealed against that decision, asking for my medical needs to be taken into account. At the time of writing, January 2013, whilst my request was acknowledged last March, I have still not been offered an opportunity to argue my case. In the meantime I was required to “earn” my ESA by attending regular “work focused” interviews at my local Jobcentre Plus. My allocated worker acknowledged the futility of these interviews after three months so we both await the outcome of my appeal before making further decisions. I suspect I have been “parked” until I become eligible for a state pension.
As I have stated above I still receive both the full mobility component; and the lower rate “living component” of the DLA. It is of relevance here to mention that for the past two years the professionals involved with both my medical and psychiatric needs have acknowledged that I should be entitled to at least the medium, and probably the full, DLA. These professionals are reluctant to encourage me to apply for an increase because their own caseloads are full of individuals who have, with justification and professional support, applied for an increase in DLA only to lose the DLA they were already receiving for spurious reasons linked to advances made by those individuals because of the possibilities afforded through their receipt of DLA.
I believe that the information I have provided above clearly demonstrates that if no Cumulative Assessment of my circumstances is carried out when single payment PIP is implemented I am at great risk of becoming both disadvantaged and disenfranchised at that time.
I will be at high risk of losing my independence as changes to the DLA, which are already affecting Motability, could lead to the loss of my car and with that my ability to shop or to attend the plethora of meetings, checkups etc relevant to my various physical, psychiatric, or medical conditions, these average out to at least one a week.
I am already “fighting off” opinions of family, friends, and professionals, that I should seek some form of “sheltered accommodation” now, but it is my wish to remain as independent as it is possible for me to be, for as long as that is an option.
It is the housing benefit I receive which makes it possible for me to maintain my basic human right to retain my liberty and my independence because over half of my ESA, and almost my entire occupational pension, are taken up by my half of the mortgage payment and household utility bills; I am left with approximately £7.50 a day with which to purchase food, toiletries, petrol, and cleaning materials.
In common with the majority of benefit claimants it is evident that my independence is supported by an extremely fragile network of benefits, and that the removal of any one component of this network would bring the network down, and with it the eradication of my independence, and, the reasons for my continuing existence. In my own case, and those of the many other benefit claimants I meet in GP and hospital waiting rooms, a Cumulative Assessment of the ways in which separate benefits combine to support us is a necessity before changes are made to any one of those benefits.
Apart from the labels of convenience attached to us by those who treat and care for our infirmities, no two persons will experience the same illness or disability; this is especially the case for those living with Psychiatric Illness. It has taken the Medical Professions my entire lifetime to recognise the damage and mistreatment of individuals perpetrated through ignorance of, or failure to acknowledge, this fundamental aspect of human existence. Any failure to acknowledge the same on the part of those currently restructuring the benefit system will result in unprecedented levels of suicide.
I am extremely fearful because those implementing the policies of this government have already demonstrated complete disregard of me as an individual through their transfer of my benefit from one based upon my medical needs to one, the ESA, which, by its very name, exists to facilitate the return of this 63-year-old, physically disabled, mentally and physically ill, individual, who takes prescribed medications at levels which would once have required hospitalisation, to the world of paid employment. A world from which he has already been twice retired by medical professionals against his own wishes, and one within which he is at extreme risk of suffering severe physical repercussions that would immediately facilitate his removal from that paid employment: and: on that occasion without the ability to function as an independent person.
3. Specifically addressed to Liam Byrne MP. A personal plea.
Dear Mr Byrne,
I am a lifelong socialist who, when I could afford to be, was a paid-up member of both the Labour Party and my Trade Union. I think the time has come for Labour politicians to stop skulking away red-faced whenever this unelected government of Conservative and Liberal Democrat politicians say “it was your policy” when attempts are made to confront them with the consequences of what they are doing.
You certainly did, for sound reasons supported by the other parties at the time, begin these processes, but that was for a trial period. Chris Grayling threw out the “trial” before its completion and for ideological reasons turned an idea into a policy. He did that without consideration of the consequences, the checks and balances which the Labour Party had put in place to monitor the results of the Pilot Project before implementation of any permanent changes were made.
Whilst it is possible that the Labour Party would have continued along the lines Grayling did none of us can know but I do not think it would have. You might have chosen to disengage from the war on capitalism before the ’97 election but that doesn’t mean you have to quietly accept the consequences for the most vulnerable in society of the extremes of capitalist ideology, just as “Old Labour” never accepted or implemented the extremes of Socialism as practised by Joseph Stalin.
The same argument can be applied to the continuing employment of Atos to carry out an assessment for eligibility to ESA regardless of the plethora of evidence that their methods have harmed many of those subjected to them, and have contributed to the death of others. Yes, the Labour Party might well have employed Atos at the beginning of a journey which, at the time of it’s implementation, had no destination, but would Atos still be there if Labour had control of this policy? I do not think so, at least, I do not want to think so, as if that were the case Labour Party members would no longer be entitled to call themselves socialists.
The constituency I live in has a conservative MP who is so disinterested in these matters that she ignores my e-mails on the subject. It says everything about this government that when I wrote to her on a subject of a capitalistic nature, that is, concerns about the government’s planned abolishment of some “alternative” medications, she replied almost immediately.
Although Labour’s voice regarding the implementation of ESA and PPI, and the effects of these things on the disabled and mentally ill communities in the United Kingdom is becoming stronger, it is still so quiet that it can barely be heard, and sadly it still fades to almost whisper whenever the government or its politicians point the finger and lay responsibility for what has happened to Invalidity Benefit at Labour’s door.
We, the members of disabled society and cultures are very clear about where the responsibility lies for what is happening to us right now, and what ideology underpins the treatment we are being subjected to. We are aware of the origins of the policies which are subjecting us to abuse levels we have not experienced for over 30 years, and we are very clear that what is being done to us now is not what the socialist government who began these processes intended. I wish some Labour and Lib. Dem. Politicians were as convinced of this as we are.
I would like to thank anyone who reads what is written above and takes some time to consider what the consequences will be for me and other members of both the disabled and the mentally ill communities if a cumulative assessment of each individual’s circumstances is not undertaken before decisions regarding levels of assistance are made.