Responses to DLA questionnaires - sample
A. P Leic's.
May 1994. Was visited by a Dr who was very pleasant and knowledgeable re: ME. Was told I did not qualify. I asked for a review- decision remained unchanged.
My condition deteriorated and I reapplied Nov 1995. Was Visited by the same Dr, who told me (unofficially) that there was 'room for optimism this time' and that if I was turned down I should appeal. I was awarded the lowest Care Component but, emboldened by the Dr's remarks, I asked them to review their decision re : the Mobility Component. I was awarded the higher Mobility Component subsequently. This had taken from early November until late February during which time I was feeling traumatised by the whole long drawn out business.
My husband works but is low paid and though we have enough income for normal living, there is not sufficient for paid domestic help, so he was trying to pull in his work, the shopping and trying to keep the home running at the same time. I was desperately trying to do as much as I could to help him out in the home.
I did not qualify for Incapacity Benefit because I had not paid N. I contributions. I had applied for SDA July 1995, had been turned down and was at that time appealing. I attended a Tribunal January 1996, They upheld the original SDA decision. So when I was finally awarded DLA for 1 year I automatically qualified for SDA. I was hugely relieved and immediately took on a Domestic help which made an enormous difference to the quality of life of both myself and my husband.
My relief did not last long. In May 1996, less than 3 months after the reviewed decision, it all began again. A claim for arrived to reapply for the DLA that would come to an end in early November 1996. All the uncertainty, pressure and trauma came back again, tension, worry and despair. The forms were completed- DECISION- lowest Care Component only, which would mean loss of SDA- not sufficient to keep my domestic help. I requested a Review. Again a long wait filled with despair. At last the reviewed decision- Higher Mobility Component restored- relief once more but this time not so complete- only 1 year again. THIS IS MENTAL TORMENT. I really wish I had a terminal illness, at least then I would know where I stood. I feel as if someone is playing with me, like a boy pulling legs off a spider and watching it wriggle!!!
May 1997 it began again- a reapplication form arrived- my health was unchanged, or perhaps a little worse. I was now taking anti-depressants. The same lovely, cheerful Dr came again. She carefully measured my walking distance (90 yards) and hinted that she felt that they would move me up to the Middle Care Component. THE DECISION.- NO, DLA WHATSOEVER- I qualified for NOTHING. In November it would stop altogether. I asked them to review the decision- NO CHANGE. In November 1997 my income became nil again. I lost my entitlement to SDA after being reassessed. I have been judged 'Incapable of all work' and am still getting N. I credits, but no benefit. When the money I put aside for the purpose runs out, my Domestic Help will have to go. My GP is horrified by the situation and cannot understand why I have been treated this way. I have appealed, the appeal has been accepted, I have legal aid and am enduring the waiting game again. The little boy has pulled off another of my legs- waiting for the Tribunal. Why do I have to go through all this? For the first 50 years of my life I claimed nothing from the system. If I was a fraudster, why would I wait all those years before I started? Why do they treat me as if it is all lies? We are back to square one and it really would have been better for them not to have given me any help to start with , than to have put me on this emotional Roller-Coaster.
I find it utterly bewildering. My health doesn't go up and down. I am ill all the time. If I am not entitled to help now, why was I previously entitled to it? But if I was entitled to it previously, why am I not now? Why do I have to fight when I need help, not a battle?
We have enough to live on, it is just the cost of the extra help that we cannot manage, and the upkeep and maintenance of my electric scooter that gets me out of the house locally and gives me a measure of independence.
M. T Lanc's
October 1993. Become ill.
August 1994. Diagnosed ME.
August 1994. Applied for DLA.
Refused, Appealed, Tribunal, Refused.
December 1995. Diagnosed non specific myopathy. (muscle disease) + ME.
Reapplied for DLA. Refused, Appealed, Tribunal. Awarded. Back dated 13/12/95 to be paid until December 1998. To be reapplied for.
This is the short and sweet version, the first application was made alone. When refused I took advice from CAB. Unfortunately he was not sympathetic to my illness or very helpful.
My second application I was assisted by someone from Community Advice Centre. This lady really did her homework, she was interested and supportive. Without her her I know I would not have been awarded DLA.
Unfortunately I was not awarded DLA as an ME sufferer that is no consolation for others.
I found the whole process debilitating and degrading, especially the Tribunal. For people in our position the process is akin to climbing a mountain. As things stand I see no future in the Benefits system for ME sufferers.
I have been awarded Mobility only. This enabled me to exchange my manual car for an automatic, which is great help. I cannot be awarded the Care Component, as I have no carer. I am sure there is sense in that decision somewhere.
S. W Derby
I became ill in 1988 and received SSP initially then automatically was transferred to Invalidity Benefit. I was severely disabled by my symptoms, and my mum was missing a lot of work looking after me, so we were told to apply for Attendance Allowance.
89-90 1 year of Attendance Allowance following DSS medical at home.
I applied for a renewal, but the attending DSS doctor advised I would not be
successful and should try for Mobility Allowance.
90-92 2 years of Mobility Allowance following DSS medical at home.
92-93 1 year DLA granted highest mobility/ lowest care.
93 DLA renewal refused. DLA reinstated following review. 2 years DLA granted
highest mobility/ lowest care.
95 DLA renewal refused. Review refused. Appeal started, and only continued with
advice and support of MEND and a Welfare Rights Officer, who arranged a
private medical to support my claim. (It Cost £250)
96 Appeal hearing held at my home - I was too ill to travel.
DLA reinstated and back dated for 18 months for a total of 3 years. High
Mobility/ Low Care.
DSS doctor attended my home for Incapacity Benefit medical.
Transferred onto Incapacity Benefit indefinitely.
98 DLA renewal granted 1 year. Highest Mobility/ Lowest Care.
I was amazed this year to have my DLA renewed so easily - maybe those months of hell going through the Appeal were worth it. Although I have been successful, I dread and fear those DLA forms - it was much easier to explain to a visiting DSS doctor than tick boxes that don't quite fit my illness.
S. H Swansea.
There are many flaws in the current system operated by the Benefits Agency. My own views are as follows:
1. Forms are long and do not account for all types of illness/diseases which occur at this moment in time.
2. The Benefits agency DO NOT take into account that those who are claiming are actually UNWELL!! To fill out the forms take a lot of energy and has to be done over a period of days.
3. The forms are ambiguous. They frighten people and do not really reflect what the Agency needs to know for their decision to award benefits for ill people.
4. I cannot fathom how a clerk behind a desk can decipher how ill a person is. Surely your own GP should have a greater say. To send out a doctor who does not know you is an insult to your doctor's ability to assess your needs.
With an illness such as ME the forms are inappropriate and unless you have information and help regarding how to fill in these forms, you would fail every time. The forms do not take into account the basic symptom of energy level. Without energy, you are limited to how much you can do within a given day. I dread the day where I recover enough to cope quite well with each day, but not enough to cope with employment. With an illness like ME, to be sent back to work before you are well enough could jeopardise your recovery process and set you back months. The current BA system does not accommodate enough information from your own GP and so not enough advice is given regarding the person's ability to do things/work/walk etc. Unless the BA is given more information regarding this illness, claims from people like myself will be turned down.
There is also a major problem at present with NHS accommodating ME. My own doctor relies on me to educate him on ME which I have had to learn by joining ME groups (which costs money) reading up as much information as possible (which costs more money) and having to pay privately for help as the NHS in South Wales has no facilities except in Cardiff. (This is unfair to us as we are having to rely on State Benefits that provide basic money for basic living, i.e. no extras are allowed such as paying for clinics/medication etc.)
Regarding the NHS, I was on the waiting list for the ME clinic in Cardiff for one year before they decided to cross my name off because the hospital in question could not meet the criteria of the Patients Charter. Having waited one year and then being thrown back to square one was heartbreaking. If it wasn't for my initiative in finding some help, I would today still be deteriorating. Thanks to the Westcare Clinic in Bristol (a voluntary organisation) their basic advice halted my deterioration and I am now beginning to gain a little more energy. If the BMA started listening to the cries of people instead of trying to rely on technology, maybe this basic information would have been passed onto GP's 5-10 years ago! Not all illnesses need technical intervention.
From where I am standing, both the Benefits Agency and the NHS fail to accommodate people with ME. Not enough information is available to our GP's for them to help us. As I said earlier, I am instructing my own GP with all that I learn so that he can help his other patients who also suffer from this debilitating illness.
Regarding my own application for financial help, it took 2 turns before I was accepted for DLA (Lower Rate Care & Higher Rate Mobility). There was little difference among the 2 time periods regarding my ability to walk far, do things. The first doctor understood ME and just took a record of all that I said - which was really what I had already written in the DLA forms!! (What a waste of a doctor's time and government funds!) The second doctor I saw told me that he had to ask his colleagues about ME because he knew little about it. Where is the BMA!! Are they awake or still struggling as to whether it is a physical or mental illness? Who cares!! All I know is that ME causes me to suffer physically and mentally with variable degrees.
P. A Leeds.
I was a teacher for fifteen years, given total responsibility for up to thirty-six pupils in my care all day from 9am to 4pm. My views were listened to. I was respected for my professionalism, my commitment to work was total. I was believed when I discussed my pupil's progress or behaviour, I had status, I could hold my head high and be counted.
I had raised my own children, taking time out to be with them for the first five years of their lives and then returned to my profession. My career was beginning to take off again and I was excited at the prospect of being solvent financially at last and looking forward to the growing freedom of having older children.
Then suddenly, in the classroom I lost my balance. My head started to spin as if I had drunk alcohol, my eyes suddenly jerked either vertically or horizontally (mystagmus). I had to be taken home and that was when the nightmare began.
Each day saw me less able to manage the stairs (holding on firmly) less able to eat because of the nausea. I spoke on the phone to the doctor several times, who reassured me that I was not seriously ill. A few days later when I could not control a whole body tremor and the room was spinning whether I lay still or not. I phoned the doctor again and confessed that I was very frightened. Eventually my GP attended, she was clearly appalled, I could scarcely stand, I could not control the shaking and was near sickness all the time. A Neurologist came straight out to the house and I was admitted for neurology tests.
It seems that initially nothing showed on the tests and I was told I would make a full recovery. I did improve a lot, I got control of the sickness, my mystagmus diminished but I never got back more than fifteen per cent of my former energy. I am four years into this now.
Since then I feel I have been doubted in every possible way. Even friends who could see no visible signs said I was just frightened to go back to work. My neurologist said every three months when I saw him, 'Well are you better yet'? Doctors stared at me, told me to take anti-depressants and go away and get better.
Not to be believed is the most intolerable feeling ever. I had been respected for a lifetime's honesty before. Then the money ran out, so unwillingly I applied for another benefit (to bring up my children in less than total poverty). This was Disability Living Allowance, the experience of a form so complicated (a degree is of no help) so long and so important to me is just daunting. Will I be believed this time? The uncertainty, the waiting, the physical and mental exhaustion getting it filled in by someone else because I couldn't write much at that stage, and I still cant write for hours each day. Then, joy, I am granted it for two years - what heaven. Only eighteen months on, it is back again, only a new re-vamped form this time, less understandable and so much more important now all the other money has gone. This time I am still granted it, but only for one year; as with chronic fatigue syndrome I could completely recover in a year? An appeal is rejected. So now I await my forms again for re-application - the treadmill of feeling like a beggar with a bowl begins again.
When you read this, please, do me a favour, just imagine that this is the last time you will ever feel believed by anyone. That is how it feels to have Chronic Fatigue Syndrome.
N. D Norfolk.
It is the first application that is the most crucial from the patient's points of view and proves to be the most degrading and stressful. This is because the patient is painfully aware of the disabling effects of the illness and assumes by reading the claim papers that he/she qualifies for benefit. After all, most sufferers at the time of application, long term sick, unable to work at anything. After consultation with my doctor and local helpers at the H.A.N.D. Charity, I could in complete honesty answer the question "Will you be sick for at least six months?" with a clear YES. That six months has turned out now to be five years.
I was therefore astounded to be refused the mobility component of DLA and wrote back to query whether they had included information that I had submitted separately. They maintained their position and so I had to go to appeal.
This was particularly stressful as in the early stages of CFS I had great difficulty converting thoughts into the spoken word, a problem that has persisted although to a lesser degree now. I therefore had to be represented at the hearing as I was almost unable to respond to any question put to me. Had my wife and my helper not advised me throughout, I would have lost the appeal simply because I either misunderstood completely the questions asked, or I could not formulate an answer.
I feel therefore that the whole idea of an appeal tribunal is wrong because:
1. The patient is often so ill he/she cannot represent themselves correctly.
2. The idea of a tribunal seeks to side-step the experienced and qualified opinion of the family GP and/or consultant.
3. The doctor on the appeal panel often has little experience in ME/CFS or is unable to get the necessary guidance from the DSS rules as these do not give guidelines for ME/CFS patients.
Information now reaching me regarding the present governments approach as it relates to renewals of the DLA would seem to indicate that very little has changed since my first unpleasant dealing with the procedure and in fact may have worsened with a concerted effort being mounted by the government to reduce the numbers of those receiving these benefits, by whatever means they can devise. This as usual leaves the patient right in the middle, being subjected to wholly unnecessary and humiliating distress.
This illness has all but destroyed my life. I have lost my work, my ability to work, my savings, my pension and self esteem. Were it not for the support of my family and friends I would be a desperate man.
J. H Glasgow.
I was diagnosed in October 1995 after not making a good recovery from Glandular Fever. I also have Fibromyalgia. On advice from my specialist I was sent to local hospital for physiotherapy to help chronic pain all down my back/shoulders/neck. Unfortunately pain still persisted thus I now try acupuncture that gives intermittent relief.
I applied for DLA in December 1995 and a Benefits Agency doctor visited my home. I was not bed bound that particular day. He was a local GP, this was in January 1996. He came over as reasonably sympathetic but he did me no favours and I don't think he realised how ill you can be. Four weeks later I got a letter to say I didn't qualify.
I then wrote asking for an appeal on any grounds. This took approximately 12-14 weeks. We are now into April 1996. By now I was bed bound for days at a time unable to bathe, attempt to cook a meal and into the bargain was now intermittent Self Catheterisation that I found unable to do. I asked for help from my GP as I was very low physically and mentally. So I now have a home help one hour three times a week to help with bathing, light housework and shopping. I have to take a taxi anywhere that's further than ten minutes walking on a better day. On a bad day, I am bed bound.
My mood became so low and management of the illness hadn't stabilised to any great degree. I then made contact with a Welfare Rights Officer who requested an Oral hearing. That was May 1997 and I am still waiting for my case to be heard.
I have written to my MP on this very subject and he wrote to the Independent Tribunal Service in Glasgow who wrote to him saying, as my papers were not received till November 27 1997 from DLA H.Q. and backlog was six months or more. My case will not be heard until at least the middle of 1998.
I require Care and Mobility Components to enable me to get better and live as an independent life as possible.
I had to give up my job but I am optimistic that I will get better one day and perhaps attain 60-70% of my old life, to enable me at best hold down a part time job. After all I am only 46 years old.
I fear DLA are not interested in our illness unless you are bed bound constantly and have a person or carer who lives with you who can prove your incapability's. Even so this is not always the case either.
J. B Staffs
I first became ill in December 1991 after a bad attack of flu. Initially I was diagnosed by my doctor as having depression. I steadily became worse but still struggled on to go to work until September 1992 when my husband requested an appointment with a Neurologist. I was immediately taken into hospital and diagnosed has having CFS/ME. I was told to give up my job immediately, which was a very good one, and have complete rest, which I found very hard to do, as it's not in my nature to rest and I fought the condition for a long time.
I was advised to approach the SDA and the DLA. The DLA turned me down and the SDA passed me as being 50% disabled. I appealed to the DLA again and requested to be examined, which they did and was passed for full mobility and low care allowance. I then automatically became eligible for SDA. Over the next couple of years I deteriorated and I advised the DLA accordingly. I was immediately given full mobility as before and this time full care allowance that was to run until November 1997.
Over those 3 years I deteriorated even more and on renewal I completed the forms with more or less the same answers as before, because there had certainly been no improvement. They requested a report from my doctor which indicated that I was only able to walk a few yards with crutches and another person with me. Any further I had a wheelchair. I was unable to cook, clean or do personal tasks without assistance, could not get out of bed during the night to get to the bathroom. In short I needed help all the time. The next thing I received a letter saying that all my allowance had been stopped, stating that I didn't need help either to walk or being cared for. I couldn't believe this.
I requested help from the Social Services to go for Review. They threw it out. We have gone for a second review, this time backed by a report from an Orthopaedic Consultant and also a medical report from the SDA (medical was carried out 15 December 1997) who passed me as being 90% disabled and I was advised on Saturday last (21/03/98) that they have thrown it out again.
I have now requested a further review and written them a very personal letter. I am not expecting it to achieve much but it was something that I had to do. If this doesn't get through to them, I am planning with the help of Social Services to go to Tribunal.
Somebody has got to listen to us, nobody in their right mind would want to feel as we do and live the king of existence we have to. We need financial help, how else are we supposed to manage. There are different degrees of disability for this condition and they should be assessed accordingly, not all of us just swept under the carpet as though we don't exist. On instructions from the government to sort out the Benefits System, the DLA are obviously targeting people with this debilitating condition because we have no medical evidence to back us up.
S. C Notts.
My first claim for DLA was turned down because they said I was a Hypochondriac. I could not speak for 2 days as I was devastated. I had sixty foster children, visited three children every Thursday with Muscular Dystrophy, looked after my father for 17 years with Alzheimer's, looked after my Uncle who had Cancer, was the Treasurer of the local ME group and ran my husband's business for 15 years. DO I SOUND LIKE A HYPOCHONDRIAC.
The second time I was turned down was because "I did not qualify".
On the third attempt, I was awarded it albeit at the Low rate.
Although I have had ME since 1973 when I had a Hysterectomy plus four infections. I have also got Thrombosis, IBS, Spondolosis, Osteoarthiritis and had a cancerous melanoma removed. I am only granted it for two years at a time. As my doctor says, if I was going to get better I would have done so by now (after 25 years) and every 2 years I have to fill in the dreaded 50 page form, which not only causes me stress, but I am terrified of it being taken away from me, as I cannot manage without a car (a 9 year old one).
I have periods when I am in bed for days because of this debilitating condition. My ME has deteriorated terribly over the past two years, caused by a lot of stress and personal problems.
I am now married to a fellow ME sufferer who incidentally has been turned down four times for DLA. He was totally bed bound for 3 years and in a wheelchair for 2 years but the doctor who examined him said that he should be entitled to DLA, but he wouldn't get it because the form did not seem designed for ME sufferers.
My next renewal is in March 1999. Already I have started to worry about it. Without it I shall be destitute as we are living on my husbands Incapacity Benefit and my Low rate DLA. I have just had 2 calls off sufferers saying that their DLA has been stopped with immediate effect.
M. T Lancs.
I applied for DLA July 1995, having suffered from Cervical Spondolosis for 25 years. At this time my GP was also aware that I suffered much distress with my muscles being tender all the time and the tiredness that went with it plus all the other things associated with this debilitating illness. These problems were listed in my claim for DLA, however, I was turned down. I immediately appealed, they then sent out an independent doctor who asked me to do certain things and walk for her. Although I told her that I needed someone with me when out walking, because my legs frequently went like jelly and my balance wasn't too good. She thought that this was unnecessary.
However, this time I received Lower Rate Care Component so that I could have a main meal, in other words I got this for the Spondolosis, they did not accept anything else. I then appealed once more, for this I had to go to a Tribunal. I can only describe this as degrading and very upsetting. The person representing the Social Security after having heard what I had to say, asked if I had ever seen a Psychologist. This was the last straw for me and I decided no matter what, I would keep on fighting, for once again the decision wasn't altered. I again appealed, wrote a strong letter that I took to my GP, who read and signed it. Again another Tribunal. This time they asked if I used a stick. When I said no because I preferred to hold on to someone's arm. They kept on repeating, but do you need a stick? Again I was told, if your condition gets worse, you may put in for more money. I again asked for this to go to the Commissioner on a point of law and this was granted.
My husband wrote and told the DLA, that after the Tribunal we had spoken on this matter and it was decided that although I do not use a stick, it would be a good idea to help with my balance and the shakiness in my legs. Consequently, I acquired a stick from Physio and I used it for a while, but still preferred to hold someone's arm. This took twelve months for a decision and again was turned down.
It is now coming up to three years. I have now asked for a Review for which they have sent a form to my GP, who is very sympathetic to this problem. He asked me to go to the surgery to help with the form. Maybe, fingers crossed, this time it will come to a satisfactory conclusion, but whatever the outcome, if I lose I will definitely see my local MP. These people make you feel as if you are malingerers. I am 52 years old. Until I was 49 years of age, I not only worked but looked after my husband, who is ill and raised a family.
I really do hope that they never have to put up with this illness, it is the most debilitating thing I have ever known.
If we all fight together, who knows? We must not give in to the system or the illness.
P. D W.Yorks.
My application was in the early 90's it was then the Mobility Allowance. I had been diagnosed with ME in 1987. I could walk on a good day 50 yards or so, but on a bad day one or two yards was enough. I applied and was asked to go to GP's surgery 8 miles from my home. The receptionist showed my wife and I into a room that had no heating and was very cold. The doctor told me to strip off and lie on the bed. He didn't know much about ME. He examined me and had me walking inside and out. He asked me questions and walked us to our car. A week later I received a letter from the DSS saying I would receive the Mobility Allowance immediately. I have had no problems at all.
R. H Notts.
Daunting and overlong. Some questions call for repetitive answers. Why bother with sections on Specialists that have treated you, and people that know you well, when in my experience the DSS never bothered to contact these people.
The idea of trying to establish a full picture of our disability with a half hour 'examination' is preposterous. ME/CFS sufferers have repetitive exercise intolerance, which in my case has not been tested. Two doctors have examined me; The first one knew nothing about ME/CFS and put all my symptoms down to a 'personality disorder'. People with this attitude should be struck off immediately. The second GP made a stressful period more tolerant, had a limited knowledge of ME/CFS, but not enough to be of much use. Much more training and improvement are needed.
Reviews, Appeals and Tribunals
Terminology confusing, a potential minefield for those 'going it alone'. Independent Tribunals I have attended once, but never, ever again. I can only match it with the Gestapo. If you attend alone it is a total waste of time. Personally I am on my third claim and from experience I halt my claim after Review and file a fresh one. Waiting time for decisions is at best poor and at worst unacceptable. My current claim, I have had to ring DLA four times for my case papers and then they only posted half the material I submitted.
To Sum Up
Incompetence from beginning to end. Delays of months for decisions. Totally unsympathetic to ME/CFS patients. Examining doctors seem to know little or nothing. On my three claims for DLA I supplied names and addresses of my GP, Cardiologist and Physiotherapist. On all three claims the DLA has NOT contacted them at all, much to my anger and frustration. Yet the Specialists will not supply me with information to give to the DLA.
P. B W.Mids.
I first claimed DLA in October 1996. I had been ill for two years but didn't realise I would be eligible for this benefit. I was seen by a doctor who understood ME/CFS. I was awarded Low rate care and High rate mobility in February 1997. This was to continue till 30/10/97.
In April 1997 I was sent another DLA claim form as the allowance ran out in October 1997. This was only about four months after I filled in my first form. On 30/05/97 I sent the completed form back. It was almost identical to my first one.
On 10/06/97 I had a letter from the Adjudication Officer stating that I was no longer eligible. I did not satisfy the conditions. No doctor had been to examine me this time. On 14/06/97 I asked for a Review. On 11/09/97 I received the Review results that incensed me. I experience much pain/weakness in my hands and arms, but the Review said "In the absence of any upper limb impairment". They also say I only cook for one person so I should be able to manage if I use lighter pans. Again I did not satisfy conditions.
On 11/09/97 I asked for an Appeal. I have rung the ITS but they told me it would be several months before I get a date. They also said they have outstanding Appeals from 1995!
H. S S.Glam.
The trouble with this persisting illness is that sometimes we are like a car, but not with visible rust and wheels missing but often maybe looking shiny on the outside, but with that vital component missing under the bonnet!! But no one is quite sure what bit!!
That simple fact gives us the biggest problem when it comes to applying for DLA.
One minute I am getting High rate mobility and Middle rate care and the next... ABSOLUTELY NOTHING! I am still house bound most days and needing at least eleven hours sleep. The DAT seemed to ignore the fact that the DLA rules accommodate feeling ill after exercise and not just during it, which is an important point.
The Tribunal didn't seem to understand the nature of the illness and how my health fluctuates greatly depending on factors such as diet, stress(mental and physical) etc. It seemed they were trying to find things to pick on rather than take an overall view instead of a 'snapshot' one that you cannot do with ME.
My fluctuating state of health is shown by varying care needs as noted in my claim packs, as I have tried to be as honest as possible. One month can be 'chronic' and the next 'reasonable' (if you class reasonable as being house bound for days on end).
The DAT Chairman mentioned that some doctors do not even 'believe' in ME. Surely the DAT's job is not to include scepticism into their deliberations of an illness recognised by The World Health Organisation and The DSS Disability Handbook.
The DAT at no time seemed to consider my "Disability Diary" that was a carefully and accurately written report of my day to day health, which fluctuates quite dramatically.
I had to save myself for the hearing so that I had enough energy to attend as not attending would be frowned upon. A sort of Catch 22 situation for the sick and disabled.
The DAT said that I did not "look fatigued" which I felt was quite insulting as typical with ME. You can feel lousy but look OK and seems to imply that I was "faking". I WISH I WAS!
As I write this, my head has an expanding pressure, my hand is incredibly tired with my mind and body feeling very fatigued. In fact, this is the first occasion in a whole week I have had enough energy to even write!
The DAT seemed to have taken a half hour glimpse at my illness and influenced by how I looked on the day of the hearing.
I think I have been treated unfairly and unkindly and get the impression that the Tribunals attitude and views did not seem as independent as they might. The doctor on the panel for example looked extremely stern and sceptical and we found that they were trying to "catch us out" rather than consider all the evidence. They seemed to ignore the case histories and the fact that my health deteriorates somewhat after mental or physical exertion. Also the fact that I need my wife's company for reassurance and to head off any suicidal thoughts or depressive episodes and to make sure my blood sugar is regulated should I become hypoglycaemic, seemed to be ignored.
J. L Tyneside
I am a 51 year old female and I have suffered from ME for 5 years. I have only recently been granted DLA. High Mobility and Low Care.
My story is a familiar one, it having taken me nearly three years to get a correct diagnosis, eventually being referred to a specialist 80 miles away.
I first became aware that I might be entitled to DLA in January 1997 whilst reading literature for an elderly relative - no one in the medical profession or from my workplace had thought to inform me.
The actual completion of the form took days and many rewrites to complete. The illness obviously hindering me both physically and mentally. I found it extremely difficult to answer many of the questions due to the changing nature of ME. The pattern of my symptoms vary from almost hour to hour. Also because of the diversity of symptoms I ended up having to virtually answer every section, very few do not apply.
My application was refused! Although I had been warned to expect this I was still extremely upset and frustrated.
In April 1997 I was visited at home by an elderly doctor who obviously had little or no understanding of how debilitating ME is. I found it extremely difficult to answer his questions, my answers were continually interrupted and felt that the answers that he wrote down were his own views and not mine. I was not allowed to answer the questions as I wished. The whole episode was extremely unsatisfactory and left me feeling very drained and upset. His lack of understanding showed throughout and my husband was horrified at certain of his conclusions. e.g. Do you get confused/disorientated? When I explained I had quite severe problems and gave instances he then asked if I could tell which way was left and right when I stood by my front door. I answered YES. Conclusion - NO disorientation. At the end of the meeting he asked me if I wanted to read what he had written. By this time I was so tired and I was incapable of this but still had to sign.
This Review was refused. The written explanation sent to me was insulting.
She tires easily but has full function of all limbs.
She PREFERS to be accompanied when out of doors.
She PREFERS to have company through the day.
It was also stated that because of no deterioration of muscle or physical cause could be seen that I was able to walk normally although this was totally contradicted in his observation. "Observed her walking indoors about 16 yards. She had a slow shuffling gait and leaned to left. It took 90 seconds, with a halt of 45 seconds, to cover this distance". I was extremely upset by this experience. To me it showed complete and utter lack of any understanding of ME. It increased my stress levels and my feelings of worthlessness. I was back to the beginning feeling as if no one understood, or even believed how ill I was or even cared. It was very difficult not to take this all personally
Although I was feeling extremely ill I was determined to continue the fight and was told of the local Welfare Rights Organisation whom I contacted. A gentleman visited me at home and effectively took over my fight. Without his assistance I do not think I would have succeeded. Ironically I worked as a researcher for many years for the Government Dept responsible for evolving the DLA forms and although I consider myself to be reasonably articulate and intelligent, I felt completely out of my depth and did not have the energy to fight the system, without outside help.
There was a long wait for the Tribunal. Finally the date arrived, 5 February 1998. I found the Tribunal very stressful not helped by the practical problems involved. I can no longer drive and walk only with crutches. The building used is in the middle of a town, 22 miles from my home and NO parking facilities. My appointment was for 3pm but I was not seen until 4pm. My welfare Rights Officer actually negotiated my Mobility Award before I went before the panel. The Care component was awarded after lengthy questioning. By this time I was utterly exhausted and in a lot of pain. I again felt that I had to justify my every action and felt that the severity of ME and its uncharacteristic characteristics were not understood. The dependency of my husband was definitely not fully realised nor did they understand how much I have changed from being an extremely independent person used to living on my own.
My overall feelings are that if I had known how much energy, stress and frustration was going to be required from the beginning, I'm not sure if I would have started it. I absolutely dread another Review even though I now know the procedure.
What I fail to understand is that the letter written by my Specialist seems to have been completely ignored. I doubt whether what I had first written had ever been read until the Tribunal stage. Throughout the whole 12 months I was made to feel that I was being uneconomical with the truth.
Six weeks after the Tribunal I have just received my back dated money but still no notification of when my allowance will be paid or how much I will receive.
S. M B'ham.
It took about 2 years before I received any financial help. My claim was lodged on 26/08/92 and it was refused. I asked for a Review and that was refused. It took till 24/03/94 for it to get to the Appeals Tribunal. I was awarded Low Rate Mobility.
It took another 4 months before I actually received any money. Much of the blame lay with the inefficient Tribunal service who took a long time to notify the DLA about the Tribunal decision. My MP wrote to a judge with responsibility for the Tribunal service which is a legal body to complain about its delays. I also have a friend who has experienced much worse problems with the DLA system.
P. N Leics.
I have been ill with ME since June 1994. I first applied for DLA in October 1994 and was turned down after a visit by a BAMS doctor. I requested a Review and sent further evidence to back up my claim. I was immediately awarded High Rate of both components. I reapplied in 1995 and was awarded these rates again with no visit from a doctor.
I reapplied in 1996 and was turned down after a very unsatisfactory visit by a BAMS doctor. (I complained about this). I requested a Review and included a supporting from my Social Worker. I was awarded Low Rate Care only. I have sent for my case papers which I have not yet received and I intend to appeal. In the meantime I have had to move in with my parents because I am unable to look after myself and my son. I could not afford to pay for help anymore.
This may all sound fairly straightforward but has been a nightmare of letters, phone calls, form filling and chasing statements by other people. My worst experience was with the DLA doctor who misled me and got me to sign the form saying that the paper had been read back to me and that it was correct. Despite the fact that my doctor, social worker, family and friends have supported my claim, I have been treated as exaggerating my needs and problems. I'm tempted not to appeal because of the stress, work and effort involved, but am appalled at being taken off essential benefits.
S. A Lancs.
I am writing on behalf of my son who suffers from ME, and is too ill to write this letter himself.
He first became ill in the Summer of 1993 when he was 18 years old and studying to take 4 "A" level examinations. Up to this point, he had been a normal active teenager and a keen hill walker. The illness became progressively worse until November when he was not able to attend college anymore. In January 1994, he was forced to go to bed and stay there. Since that time, now over 4 years, he has got up and got dressed only to go for treatment administered by an acupuncturist and to make three monthly visits to his Consultant at hospital.
He first claimed DLA in August 1994 but was told that he did not qualify for the allowance. His appeal against this decision was rejected. My husband and I took the case before a Tribunal which took place in November 1995. We were supported by a member of the Welfare Rights Service. It was decided that he was entitled to Low Rate Care on the grounds that he was unable to prepare a meal for himself. This was granted for 3 years From August 1994 to August 1997. We could not understand why he was not awarded the Mobility Component since, because walking produces severe discomfort and would lead to a serious deterioration in his health, he is clearly virtually unable to walk.
We understood that the Tribunal would be independent but they seemed to be determined to award as little money as possible by refusing to accept the facts. They said that they were satisfied that he could "physically manage to walk a useful distance at a slow and steady pace". I would have thought that spending over 4 years in bed for 99% of each day clearly demonstrates his inability to walk a "useful" distance.
He was physically quite unable to attend the Tribunal since he could sit up, at the time, for only 10 minutes without having to lie down again and rest. (He now manages to sit up for 20 minutes to eat.) Even though I wrote to explain why he could not attend, they still expected him to be there. They were annoyed and his absence seemed to go against us. (They were, incidentally, well over 1 hour late in hearing our case.)
They suggested that he might prepare and cook a main meal in stages throughout the day. He could peel and cut up some potatoes at 10 a.m. and then the carrots at 2 p.m. - this to someone who just manages to walk downstairs to eat the first course of his evening meal at the table. If there is a sweet course, I have to take this up to him to eat in bed after he has rested, lying down, for at least half an hour. (Usually, now, he is able to get a bowl of cereals for breakfast himself but some days, he is so tired that I take this upstairs to him, and I always make his sandwich for lunch which he eats in bed.)
My husband and I both found the experience of the Tribunal humiliating and degrading. The worst part was their final suggestion that I, as a mother, had just got what I wanted in having my son at home where I could look after him, and that he had really got me exactly where he wanted me - running after him attending to his every need.
In August 1997, we had to claim DLA again because his condition had not improved. This claim was rejected even though the case had been previously brought before a Tribunal. We have appealed against the decision again and we are still waiting to hear, so my son has been without this money for eight months.
H. H N.Wales.
I applied for DLA on 10/03/96. On 16/05/96 I received a Doctors visit. On 30/05/96 I received a letter from them stating that my claim had been refused. On 11/06/96 I requested a Review and a copy of the doctors report. No doctors report was received so I telephoned them 4 times over the next month to ask for the report and the reason for the delay. By 30/07/96 I still hadn't received anything, so I sent a letter of complaint threatening to contact my MP if the doctors report did not arrive within seven days. A photocopy of the report arrived and a phone call of apology within 2 days of sending the letter of complaint. I sent additional information to the Adjudication Officer and on 05/09/96 I was granted High Rate Mobility and Low Rate Care for 2 years.
I applied for a renewal of DLA on 30/11/97 and returned Section 1. I received acknowledgement of this and a reminder to send Sections 2/3. These were returned 31/12/97. I received a letter in late January to say that Section 1 had not been received by them. My husband then sent a copy of their letter to them acknowledging receipt of Section 1. One week later my DLA was awarded for a further 2 years.
We have noted that the DSS do not log telephone calls efficiently and often fail to take any action requested by the claimant over the phone. Therefore it is necessary to write clear, precise letters and inform them that you are keeping photocopies of all correspondence and be prepared to deal quickly and firmly with any problems due to DSS inefficiencies that may arise, including threatening to contact one's MP if necessary.
B. W Ireland.
I first applied for DLA on 13/01/97. I had an immediate confirmation of receipt of my claim. On 28/02/97 they informed me that they had not yet made a decision. I then had a phone call from a doctor who arranged to see me at home. She duly came, examined me, questioned me etc. I had confirmation by post on 12/03/97 that I had been awarded High Rate Mobility but was not entitled to help with personal care.
Put like that it all sounds so quick and easy but I found it anything but such. I recall that it took several days to complete the form because it is so complex. So many of the questions could not be given a straight forward answer but required further explanation. I needed my daughter and husband to help with the wording (even though I was an English teacher.) and ended up needing to have the actual writing done as well.
The doctor who came to the house was pleasant and about as sympathetic as most doctors can be of a condition they have little understanding of. She did as so many questions and being on my own I felt so confused and weak. I even had to show her how well I could manage the stairs- a really difficult thing at that stage as by then I was thoroughly mentally fatigued with the questioning and also physically exhausted too.
I was granted DLA for 2 years when presumably I will have to face the whole nightmare again. What these doctors and officials don't realise is that ME sufferers make such an effort to 'hold it all together' during these examinations etc. because we want to try to present our case as clearly as possible. What they do not realise is that when the interview is over we flop totally and feel rotten for days afterwards. Because of poor concentration and memory loss I know I was tormented afterwards as I remembered things I should have mentioned.
M. S Lancs.
I applied for DLA over a year ago and am now at the stage of an appeal Tribunal. I have the feeling that I will not be successful as the impression I get is that if you have two arms and two legs and some level of mental competence you are not deemed disabled.
I have kept a diary of the last six months because I cannot think of any other way of getting this dreadful illness across. I am dreading the hearing because from past experience pushing myself to do anything, either mental or physical, results in weeks or months of increased suffering.
J. B Leeds.
Anyone thinking of completing these forms should keep a day and night diary of how many times each day or night various tasks had to be done. Can you remember how many times you went to the toilet last month? This is what they want to know. I also found the visit by the doctor completely useless. She asked me a few questions, placed her hands on my abdomen and told me to sit up and touch my toes. She then wrote a few notes and left.
I finally in despair went to DIAL who helped me finish completing the forms and took photocopies. . Never the less my claim was rejected. So I went back to DIAL and they appealed for me. Finally I was awarded Low level Care, which is extremely useful.
I feel that many people will just give up at the mere sight of these forms, but they should seek advice from an organisation who can help them.
H. L Surrey.
1992 - I first applied for DLA. I was claiming in respect of chronic back pain and CFS. I think I put more emphasis on the back problem than CFS. Anyway I didn't get it.
I then forgot all about DLA until a nurse friend of mine told me that I should re-apply as I should be entitled to it.
1993/4 - I applied again for DLA, my symptoms were much the same, very debilitating. This time I put more emphasis on CFS than chronic back pain, and I listed all the symptoms I could think of that were affecting me emphasising their debilitating nature. I made doubly sure not to omit information that would support my claim. Above all I emphasised how debilitated I was and how different I was from being healthy.
I was given DLA for one year. High Rate Mobility and Low Rate Care.
1995 - I reapplied for DLA and got it easily again for one year at the same levels. I think part of the reason for getting DLA was I went into great detail about how symptoms affected me physically.
1996 - I reapplied for DLA and got it this time for two years again at the same levels.
All in all except for my first application which I should have been given, I have been happy with how I have been treated and think the award fair.
I feel you have to lay it on thick to get it. If you read your claim form and feel depressed about how little you can do, then you have filled it in right.
M. P S.Wales.
My daughter first became ill 5 years ago at the age of 11 after having Glandular Fever. About 18 months later I applied for DLA. We were visited by a doctor at our home. My daughter was almost completely bedridden at the time, but with my help got downstairs to see the doctor. I explained all her difficulties and how dependant she was on help from me. A couple of weeks later we were refused help and even after a review we were still refused. This was difficult as I am widowed and could not work.
Recently, I was persuaded to try again as my daughter has been very ill again this last year and needing much support. I spent quite a time filling out the forms, which contain a maze of repetitive questions. I did this with another adult ME sufferer who knows my daughter well. Another lady doctor visited, but this time I asked if she was used to patients with ME. She replied, yes. I did not want to put my daughter through unnecessary misery as she is so ill, she is mostly in bed.
This doctor saw her in bed, as my daughter could not get up. However, she still had to prove this to the doctor, who poked and prodded and asked her to sit up, then the final straw - to stand. My daughter broke down before this, as she felt so ill. I intervened and said 'enough was enough'. After all, we had given two references from doctors who had given the diagnosis, besides our own GP, which should have been enough.
We are hoping, my daughters Social Worker will be able to help us with an appeal this time. Sick people should not have to go through all of this.
C. B Leics.
I have had ME for 14 years and have claimed DLA three times. The first time was several years ago and I have no real recollection of the facts except to say that it was refused and I neither the support or the strength to fight the decision.
My marriage broke up in 1993 and I again claimed DLA as this was my only means of support other than Income Support. A doctor was sent out to see me. He was sceptical throughout and proceeded to tell me about 'real illnesses' like arthritis. I knew that I would be disallowed as soon as he left the house. I appealed against the inevitable disallowance that followed. My appeal was again refused. As I knew that I fulfilled the conditions for DLA and was too ill to support myself and my son any other way, I took my appeal to a Tribunal. I had to hire a solicitor and spent many arduous hours myself collecting medical evidence and letters from Doctors and Consultants. I even travelled to Leeds to get a report from ME Specialist, Dr L M Swinburne. By the date of the appeal I was so physically and emotionally drained that I had difficulty even sitting up in my wheelchair. This must have been obvious to the Tribunal members as they gave me my DLA with High Rate Mobility and Low Rate Care for a period of two years.
I had to re-apply in August 1997 and it was disallowed outright, even without a doctors visit. My friend helped me to compile my appeal evidence. This time they accepted my appeal and granted my DLA for a further 3 years at the same levels.
As you can see it has been a constant battle to obtain my DLA. My friend has had identical problems and we have just sent in her appeal.
A. W B'ham.
My son had ME for 2 years. He had to re-take a year at school, to get the GCSE's he wanted to get to University. This meant he was 19 years old before he finished his 'A' levels. Being a single parent on Income Support life became very difficult as all money for him stopped. I had never been told I could claim any DLA for him during the illness, so I never applied. They knew from his records he had been ill and put down a year because of this, but it was a hole in the net and no cover was available. I was told by one DHSS person that he should leave doing his 'A' levels. After all his struggles he was not going to let this happen. I applied for help from the Money Advisory Service and luckily got a grant. He got his 'A' levels and his degree.
Six years after he was ill, my daughter had a virus infection and didn't recover afterwards. She showed many of the same symptoms her brother had. This was October 1995, by Christmas she was very ill. She was always tired, lost weight, was cold most of the time, her sleep patterns were disturbed, she had terrible nightmares, headaches and pain all over her body. She had a couple of good hours during the day, at other times she wouldn't even be able to talk to you. She was by now unable to attend school. Her doctor had diagnosed depression after doing tests which proved negative. I insisted that she was not depressed but was ill. He was urging her to do more and get back to school. One bright suggestion to cure her nightmares was to read the bible before she went to sleep. I think he was baffled. I suggested ME to my daughters Schoolteacher who had also suffered from the illness and she told me, looking at my daughter was like looking back at herself when she was ill.
In May 96 we got to see a Paediatrician who ran tests and said that if nothing showed she was prepared to consider that she was suffering from ME. We got this diagnosis in August 96. By then I had heard that we may be entitled to DLA, so I got the forms and filled them in. By the time the decision was made, we were refused, my daughter was 16 years old and she had to apply for an Appeal. The CAB helped us with this and we also had letters from our GP and Consultant. Months went by and my daughter was slowly improving. By the time they sent a doctor to see her she was much improved, so the decision was a refusal again.
I am pleased to say that my daughter is now 90% improved and for this I am very happy. I do feel however that when a child is unable to go to school through illness and has home tutoring and half days at a special unit, then surely some help should be made available to parents and the child.
The claim forms are so complicated to fill in and because of the varying nature of the symptoms of ME, it is difficult to explain yourself.
After my daughter was 16 years old, I was taken off Income Support and put on Job Seekers Allowance. My daughter was too ill to leave alone but as she did not get DLA I was being pulled two ways. The stress of looking after a sick child as a single parent is hard enough, this searching for work added to it. This has had an effect on my health as well, I ended up on Prozac myself.
ME is a hard illness to cope with for the sufferer and the carer. Someone said it is rather like being alive and dead at the same time. Children suffering from ME tend to lose touch with their peer group and get very lonely. The only way a sick child can keep in touch, is by phone. I always had to be so careful not to run up a large phone bill, so she had to limit her calls. Having no transport I couldn't take her out to visit friends or even to give her a change of scenery. A bus journey tired her out for days.
My daughter lost two and a half years and I know she was lucky. If I had taken the doctors advice it might have been much longer.
Some financial help would have taken a little of the strain off both of us, as my daughter was aware that heating bills etc. were high, and this worried her.