Select Committee on Social Security Minutes of Evidence


Examination of witnesses (Questions 160 - 179)

WEDNESDAY 25 MARCH 1998

MRS LYNNE MALEKMIAN, MRS LESLEY BURTON and MR JAMES MCDONALD

  160.  If there are any difficulties do not worry, we can always temporarily adjourn and reconvene. Perhaps, Lesley, you could just start by saying a word to the Committee about your own experience?

  (Mrs Burton)  A word? I have got quite a few words, is that okay?

  161.  Yes, please.

  (Mrs Burton)  I have actually provided copies because it is tricky trying to read aloud.

  162.  Your statement is being circulated which is helpful. The shorthand writers will have the written statement so that is very helpful. Just take your time and tell us what you have to say to us. Thank you.

  (Mrs Burton)  I would like to thank you and your colleagues for the opportunity to talk about my experience of being BIPed. The main points I would like to cover are my disability, the Officer's visit and her completion of the DLA form, the outcome and the cost of disability to us. I have had Muscular Dystrophy—a progressive, muscle-wasting disease—for 35 years. There are no drugs, no remissions, the prognosis is poor. I will not get any better. I was phoned in November by the Visiting Officer from the Benefits Agency who asked if she could come round in 30 minutes. Having turned down an appointment for the end of October I wished to be helpful and so agreed. I do not remember much about the questions asked on the day, so when I heard I would be giving evidence to you I sent for a copy of my form, which the DLA has provided to me. I knew my form must have been completed incorrectly, as my benefit had been reduced, but I was unprepared for the level of incompetence displayed in the answers written down and the number of questions ignored. Until last Saturday I had never read a DLA form. Previous assessments were completed by doctors who understood the nature of my disability and questioned me carefully. I wish I could express to you my disbelief on reading page 24 which asks about the help I need at night. This was simply crossed through "not applicable". The questions were not asked. The last five pages she simply ignored. Nowhere on the form is there any mention of the suction equipment I could not live without. Questions regarding night-care confirm that I need someone with me all night. That I am dependent 24 hours a day. That without the ventilator at night I would die. To return to the visit, despite it being our lunchtime we asked the Officer if she would like to complete a form for my husband. It seemed silly when she was there already for someone else to make another visit and increase the cost to the Review. On 16 December I received notification from the Benefits Agency that the Adjudication Officer's decision was:   "that my medical condition was not so severe as to satisfy the condition for entitlement to the higher rate care component of DLA". I was outraged. It had simply never occurred to me that someone like me, physically dependent on people and machinery 24 hours a day, would have their benefit cut. As my GP commented, when she was told: "If Lesley doesn't qualify, who does?" In January more bad news arrived when we were notified that my husband John's benefit had also been cut. Neither of us had had any change for the better in our physical conditions since we were previously assessed. Barring miracles, neither of us can ever expect to see an improvement to our health. After review, John's benefit was reinstated at the end of February. On enquiring about the evidence used I was told that another Adjudication Officer had looked at his DLA form and decided John did qualify. The clerk I spoke to confirmed that decisions are down to personal interpretation by the Adjudication Officer. Serious errors were made when assessing my continued entitlement to benefit. It is only because I was able to speak up for myself that my benefit was reinstated. Life is expensive for us because of our physical problems. We cannot afford to lose money we are entitled to through an incompetent review procedure. John and I are lucky to live in a purpose built bungalow belonging to the Cheshire Foundation Housing Association. We manage between us and with 40 hours care a week. If I was on my own I would need care 24 hours a day. This was clearly stated in the DLA form. Our benefits pay for our considerable transport costs. We have a specially adapted car and two electric wheelchairs for me. These all have to be run and maintained. They also pay for some of our care and the many other extra expenses we have. For example, food bills are larger because of convenience meals and electricity and gas because of my equipment and the extra heating I need. I understand you invite recommendations from witnesses for consideration so I ask that, firstly, the Committee advises the immediate suspension of the Benefit Integrity Project. Secondly, all those already reviewed who have lost benefit should have their assessment checked. Thirdly, much more care must be taken to protect vulnerable people in any future reviews undertaken. John and I live an independent life, despite considerable problems. We, and others like us, need your help to ensure we can continue to do so. Thank you for listening to me.

  163.  Lesley, thank you very much for that very powerful statement. Lynne, would you like to make a contribution?

  (Mrs Malekmian)  Yes, obviously it will not be anywhere near as clear as Lesley has been able to show the incompetence we, the disabled, have experienced. I felt I had been a victim of a mugging. At the time I was also seeing statements that of course no genuine disabled person would have money taken away or their benefits would be cut. I was left at Christmas with nothing. I was living on handouts from people who were so disgusted and distressed on my behalf because, as Lesley said, if they can do it to someone like me or to Lesley, they can do it to anyone. They were very frightened and this Government does not do things like this. I felt I had been betrayed simply because I have an illness, I know it is going to get worse, I know it is getting worse, but I am dealing with it the best way I can. There is no "You are doing all right", it was "You do not need any help". I do; I cannot live without that help.

  164.  Can you tell us a wee bit about the chronology.

  (Mrs Malekmian)  The story? Yes I have multiple sclerosis. I was BIPped and I learn't that I am suffering from secondary progressive multiple sclerosis so, therefore I now know the prognosis. I was always advised "Do not think about it too much". Because of BIP I now know what I am dealing with.

  165.  Did you have the same kind of difficulty with very short notice of the arrival?

  (Mrs Malekmian)  No, I had a form and it was a very complicated form.

  166.  Did you undertake to complete that yourself?

  (Mrs Malekmian)  Yes.

  167.  Without advice?

  (Mrs Malekmian)  Yes, I did not think I would need advice. I think I am capable. My husband who is my carer is capable of filling out a form.

  168.  Was it the fact that the form was considered to be inadequately completed that led to your—

  (Mrs Malekmian)  No, I think it was someone who did not understand that multiple sclerosis was a progressive disease and the prognosis was—

  169.  You were interviewed by someone who you believe did not understand.

  (Mrs Malekmian)  I was not interviewed. No, I have never been interviewed. I have never been seen.

  170.  You have never been seen.

  (Mrs Malekmian)  I just had the form and the form asked for my GP, which I gave, and also I gave my neurologist's name and address and he was never contacted. He is most angry about it.

  171.  Did you get notice of the cut?

  (Mrs Malekmian)  I got notice that on 25 November DLA was being withdrawn. I was no longer entitled and I am afraid I laughed. It did not sink in until 28 November when standing in a queue at the post office my DLA book was snatched and I stood there saying: "My dear lady" and they said: "We are not paying people like you any more".

  172.  What did you do when that happened to you?

  (Mrs Malekmian)  I burst into tears and I got home and rang the Mail on Sunday who did an article because I was so desperate.

  173.  How did you put it back together again? Where are you now? Are you undergoing an appeal process?

  (Mrs Malekmian)  No. I put in for an appeal but then I got a phone call from the DLA to say "You do not have to get it in the paper any more, we are giving it back". To me that was "You can be quiet now". I thought this was so incompetent. It is so worrying that disabled people, people who can least deal with cloak and dagger stuff, are being put in that position. People are not well enough to deal with it.

Mr Wicks

  174.  Can I ask, did the newspaper do a story?

  (Mrs Malekmian)  Yes, they did.

  175.  Do you think that is why you got the money back?

  (Mrs Malekmian)  Yes, I am certain of it, unfortunately. I wanted to go to appeal because I thought there must have been a mistake somewhere. An error I can accept but it has never been admitted, "Yes, there were a lot of mistakes made". It was not handled correctly.

Chairman

  176.  Is it your assessment that this was some individual who got it wrong in your individual case or do you think it is the system that has failed you?

  (Mrs Malekmian)  I think the system failed me.

  177.  Lesley made some very powerful recommendations for us to consider as a Committee, would you endorse those or do you have any recommendations you would like us as a Committee to consider?

  (Mrs Malekmian)  I just really think the simple solution is to check out. Check. Make sure. My neurologist said "No-one ever contacted me", why did they not? I put the address. The neurologist knew about my illness, the progressiveness of it and the prognosis, why was he not contacted?

Mr Roy

  178.  How long did you go without money from the end of November to when?

  (Mrs Malekmian)  It started filtering back in the New Year. One book was returned, the Invalid Care Allowance Book followed afterwards.

  179.  Did you get it backdated?

  (Mrs Malekmian)  Yes, I did.


 
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