Memorandum submitted by Multiple Chemical Sensitivity sufferer (DM 10)

 

1 Summary

I have suffered from Multiple Chemical Sensitivity[1] (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.

Introduction

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 my claim.

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 case.

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 working; and

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 Benefit provides?

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 2006.

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 environment.

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 inappropriate.

 

4 Recommendations

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 advice.

4.4 The doctors who do the medical assessments for the DWP should be required to have a significant level of experience in the applicant's condition.

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 condition.

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.

September 2009

 



[1] 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.