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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