Memorandum submitted by Multiple
Chemical Sensitivity sufferer (DM 10)
· I have
suffered from Multiple Chemical Sensitivity
(MCS) since the early 1990s. MCS
is not well understood by the NHS and appears to be even more poorly understood
by the DWP
· I was able to
work until September 2004. My employer's
sick leave covered me for 6 months and then I went on to Incapacity
Benefit. After a medical assessment in
September 2005 my Incapacity Benefit was refused.
· I appealed and
advised the appeals service that they needed to accommodate my disability. Despite my efforts to cooperate with the
appeals service they would not accommodate my disability and they went ahead
with the appeal without me.
· I appealed
again on the grounds that I had not been able to attend the appeal hearing and
was granted another appeal, however by this time, due to a treatment that I was
taking, I was having a lot of problems with side effects and so I was not able
to pursue the appeal.
· I assume that
the appeals service have once again held a hearing without me and rejected my
appeal. As I am able to manage without
the Incapacity Benefit, at the moment it is far better for me to concentrate on
getting better and returning to work rather than battling with a system that
seems intent on making my life as hard as possible.
· On the basis
of my experience the decision making process is flawed as it failed to properly
consider all the factors that affect my ability to work. The appeals system is also flawed since in my
experience it actively worked to stop me from putting my case at the appeals
hearing. I have included some
recommendations on how to improve these problems.
1.1 I have suffered from Multiple Chemical
Sensitivity (MCS) since the early
1990s. For a number of years, thanks to
the efforts of my private doctors, I was able to manage my condition using a
number of vitamin, mineral and amino acid supplements. These worked by helping me to cope with the
compounds that my body couldn't breakdown without assistance. However, my condition gradually worsened and
in September 2004 I had to stop working.
This was partially because it was impossible for me to function in a
work environment due to all the fragrances and other chemicals (e.g. the
chemicals released from carpets, paints, furniture and electrical equipment)
that are present in a modern office environment, but in hindsight, mostly
because the underlying cause of my MCS
was overwhelming my body's natural processes.
1.2 In 2004 it was still unclear what was
actually causing my problems. However,
since then, thanks to some innovative medical testing that I have been able to
do privately, it appears that my problems were due to cadmium and nickel
poisoning. In my case, the cadmium and
nickel appear to have been stored in the bones in my legs, and this has caused
my body to produce toxins which have overwhelmed my natural ability to
breakdown the chemicals that are now common in the environment. I say "it appears" because, due to my limited
resources, I have focused on testing enough to convince me and my doctor of a
course of action, rather than testing sufficiently to confirm the actual
problem. As I have been unable to get
any support from the NHS, this seems to be the best approach, and since the
treatments that we have pursued have produced good results, I am satisfied with
this as my main aim is to be able to start working again. However, it does have the downside that it
will be difficult to convince anyone who is sceptical about my problems that I
was actually suffering from a serious problem.
1.3 I can understand that in a situation like
this, where there is no clear diagnosis and hence no clear prognosis, I might
be subject to some extra scrutiny from the DWP.
However, I don't believe that it should have been too difficult to
assess my case and reach the conclusion that I was not able to work. Given that this wasn't the case, it looks
like, since I didn't fit into any of the DWP's or the appeals services "boxes",
that they just decided that it was easiest to deny my claim.
2 Decision Making
2.1 The decision making process didn't work at
all effectively in my case.
2.2 In the first instance, this is because the
Incapacity Benefit application forms and the standard Incapacity Benefit
assessment process were not designed to properly assess MCS
and similar problems. As I result, I
provided a lot of additional information about how MCS
affected me plus the reports from my NHS GP and the contact details for my
private doctor, but it is not clear to me that this was accepted as relevant to
2.3 I also believe that there were problems
with the medical assessment carried out by Atos Origin in September 2005. In the first instance I was required to
attend an assessment centre in Cambridge
rather than in my home town. I agree to
this because I had to attend an appointment at Addenbrookes
Hospital, and so had to go to Cambridge anyway, but
later found out from my GP that I there was an assessment centre in my home
town. It would have been much easier for
me if I had had the assessment there. I
now suspect that I was sent to medical examination in Cambridge rather than in my home town, in
some sort of implicit test of my ability to work.
2.4 The medical assessment itself was a bit of
a joke. Once again I provided additional
information on how MCS affected me
but this did not seem to be taken into account by the doctor when making his
report. I also advised the doctor that I
was undertaking a treatment at that time and suggested that I should be allowed
to complete the treatment before any final decision was made. Also, the assessment centre had been recently
refurbished and so was not a safe environment for me to be in. As a result my ability to respond to the
doctor's questions deteriorated during the interview, though it appears that the
doctor did not notice this, or if he did, he didn't take it into account in his
assessment of my condition. As a result,
I don't think that the doctor carrying out the medical assessment was
appropriately trained to assess someone with MCS
and that therefore the report that he prepared was flawed. Due to the effort of attending the
examination and my Addenbrookes appointment in Cambridge I was extremely ill
for over a week afterwards, though I acknowledge that attending the appointment
at Addenbrookes on its own would have had the a similar effect.
2.5 I think that I asked for a review of my
case when my claim was rejected but from memory there was some complication
here and I had to appeal against the decision to get a review. It is not clear to me how the review was
carried out and whether the people doing the review had any knowledge of MCS and so were qualified to make a decision in my
2.6 I thought that my case was, although
complicated, relatively clear cut given my medical history and the support that
I had from my doctors and as a result I did not get any professional advice
when making my claim. I now think that
this was a mistake, though I think that it is entirely inappropriate for a welfare
system to be set up so that the only way to get treated properly is to apply
with the professional assistance.
2.7 The overall impression
that I got from the DWP was that they were treating me as a cheat and a liar
who was running some sort of scam.
However, I think that even a moment's consideration would show how
ridiculous this was. If I was trying to
cheat the system:
· would I have spent
as much money as I had on private medical treatment in an attempt to keep on
· would I have come up with a condition that was so likely to fail the
DWP's assessment process?
2.8 Further, would I be likely to be willing
to give up a good income in favour of the very basic income that Incapacity
2.9 The fact that these questions don't seem
to have occurred to the DWP assessors seems to show how they prefer to blindly
apply a set of rules rather than properly assess each case on its merits.
3 Appeals Process
3.1 The appeals system did not work at all in
my case and it appears that the service was actively working to try and exclude
me from the process.
3.2 When I applied for an appeal I advised the
appeals service that I needed the appeal to be held in a location where I would
not be affected by my MCS. Despite this I was given an appeal date and
location and there was no reference to accommodating my MCS. The appeal date was in January or February
3.3 As a result, I contacted the appeals
service to ask what they had done to make sure that the location was
suitable. As they hadn't done anything,
I agreed that I would check the location myself and advise them whether it was
suitable. Unfortunately, the location
made me ill and so I advised that it was not appropriate as I would not be able
to represent myself properly. Despite
doing this well before the appeal date, the appeals service decided to go ahead
with the appeal and consequently I was unable to attend. I believe that this was an active decision by
the head of the service, rather than something that happened by default, and
given that the appeal service wasn't even prepared to accommodate my MCS, I have to question whether my appeal actually
had any chance.
3.4 As the appeal went ahead without me being
able to put my case it was rejected. When
I was informed of this I appealed on the grounds that I had been prevented from
attending the appeal hearing by the appeals service and was granted a second
appeal. I informed them that this would
have to be at a suitable location.
However, at about this time I was undertaking another treatment that was
giving me a lot of side effects and despite explaining this to the appeals
service, I believe that they eventually went ahead and held another appeal
without me being able to attend, this time because I was too ill to do so. At this stage I decided that it was not worth
pursuing the appeal until I was well enough to do so and that it was far better
for me to concentrate on getting better so that I could start working
again. I have made significant progress
in this area, but have still not been able to start working again. When I am able to work again, due to the long
term damage that the cadmium and nickel poisoning has done to my body I will, however,
have to work from home, so that I can have full control over my working
3.5 Based on my experience I think that the
appeals system is not something that can be negotiated without getting professional
advice. I think that this is
4.1 The DWP needs to be
better at dealing with people whose problems are difficult to diagnose and
focus on the implications of a person's problems rather than the diagnosis
(or lack thereof).
4.2 While a welfare system needs to be able to
deal with a large number of people, it also needs to be able to deal with those
people as individuals, rather than by trying to fit them into a predefined box.
4.3 Any system should be designed so that it
can be negotiated by an ordinary individual without the need for professional
4.4 The doctors who do the medical assessments
for the DWP should be required to have a significant level of experience in the
4.5 The appeals service should be required to
accommodate conditions like MCS by
holding hearings in environments that are safe for the appellant.
4.6 The medical advisor to an appeal hearing
should be required to have a significant level of experience in the applicant's
4.7 The NHS should be required to work
actively on helping people get healthy enough to return to work. At the moment the NHS seems to see people on
disability benefits as unworthy of any significant attention.
 A medical condition manifested by recurrent symptomatic responses
to chemical exposures at levels lower than previously or commonly tolerated.
Symptoms occur at levels of exposure below those generally known to cause
adverse human effects.
This means that individuals with MCS have an acute hypersensitivity to the chemicals
in everyday substances, including household cleaning agents, pesticides, fresh
paint, new carpeting, building materials, newsprint, perfume, and numerous
other petrochemical-based products. Individuals with MCS
may experience headaches, burning eyes, asthma symptoms, stomach
distress/nausea, lethargy, dizziness, loss of mental concentration, and muscle
pain. Some individuals also suffer fever or even loss of consciousness.