APPENDIX 21
Memorandum submitted by Doris M. Jones
MSc (EDP 30)
As an independent researcher into health and
associated problems affecting people who suffer from ME (Myalgic
Encephalomyelitis) which nowadays is often erroneously referred
to as CFS (Chronic Fatigue Syndrome) and related disorders like
MCS (Multiple Chemical Sensitivities) and FMS (Fibromyalgia Syndrome),
and the mother of a son who has suffered from ME for 23 years
and who has been employed on an SPS (Supported Placement Scheme)
basis, which recently has changed to WorkStep, as a registered
disabled person, I would like to make the following comments:
In response to some of your bullet points:
1. There can be little doubt that the high
numbers of people claiming Incapacity Benefit represent a large
proportion of people who are unemployed.
2. I am not au fait with the current role
of Jobcentre Plus. What I can say is that the Disability Officer
at the local (Redbridge) Jobcentre was very effective in helping
my son secure employment on what was then an SPS basis. This employment
(with the local authority) has now lasted all but six years and,
apart from an initial misunderstanding, has been a relatively
trouble-free working relationship. However, I am also aware from
my postgraduate research experiences over 14 years, and in particular,
from results of a long-term follow-up survey carried out in 2001
as a Reference Group member's contribution to the CMO's Working
Group on CFS/ME that of 174 ME/CF SIMCS patients who completed
questionnaires, only 61 (35%) were mildly affected, ie they were
mobile and able to care for themselves, doing light domestic tasks
with some difficulty and if working, had to stop all other activities.
Only very few of these (two or three) stated they were helped
by schemes like SPS. Another 22 (13%) stated they had regained
normal or near normal health and were therefore able to lead a
normal or near normal life. 53/174 patients (30%) were moderately
affected by their illness, ie they had reduced mobility and were
restricted in all their activities—they usually had to stop
all work, as regular rest periods were required. 31 (18%) were
severely affected, ie they could only carry out minimal daily
tasks and were housebound. Seven (4%) were very severely affected
and were unable to carry out any daily tasks for themselves, being
bedridden most of the time,—most of all of these were of
working age. The total data on four independently conducted surveys
for this Working Group on 3,074 patients with ME/CFS (or MCS in
some eases) showed that of 3,058 known cases, 1,852 (61%) were
mildly or moderately affected, whereas 968 (32) were severely
affected and 216 (7%) were very severely affected.
As far as the success of initiatives like WorkStep
is concerned, I can report from my son's experiences that whilst
at this state in his own case things look relatively promising,
ie there is a good chance that he will be kept on permanently
by the authority after elapse of the two and a half year period,
there are clearly serious problems for many people with chronic
and long-term disabilities. Set targets and deadlines by which
certain criteria should or must be reached add a considerable
additional burden of worries to people who frequently struggle
to meet a minimum of requirements to stay in work. This approach
is unfair and unrealistic for the long-term and chronically disabled.
Whilst the WorkStep idea in general seems a good one, there needs
to be a differentiation in conditions set for people with long-term
chronic disabilities as compared to people who have simply been
unemployed for a long time. People's long-term and chronic disabilities
are not going to rectify themselves within a two and a half year
period so that they can perform a normal person's work and thus
justify full payment to their employers. No government rulings
are going to achieve that—there needs to be greater flexibility
and provision for indefinite support (such as that provided by
the previous SPS) for people with chronic illnesses or permanent
disabilities.
3. With regard to the role of the private
sector in delivering employment services for people with disabilities
and health problems, I can only comment on the private health
initiative PRISMA (providing Innovative Service Models and Assessments),
which is becoming increasingly involved in attempts to rehabilitate
patients who suffer from ME/CES, MCS or similar disorders
(which certain UK psychiatrists prefer to call "Functional
Somatic Syndromes", implying these patients' problems are
largely or entirely psychological or psychiatric). My feedback
on the involvement of PRISMA representatives and methods is almost
entirely negative—their expectations are almost invariably
too high and unrealistic, especially for the more severely affected
patients. I have heard of some cases where patients have lost
their jobs because they could not meet the required or set targets
by PRISMA.
4. As regards particular groups of people
with disabilities and health problems being catered for adequately
etc, I would make a fervent plea for people suffering from ME/CFS,
MCS, FMS, GWS (Gulf War Syndrome) or similar disorders that employment
projects should be designed to enable more of these patients to
be integrated into some acceptable working facilities or positions.
There should be some projects which are much more inclusive and
indeed adapt to the needs of individuals — with these kind
of health problems, every subject's needs, abilities and problems
differ.
I hope these details are of help to you.
6 January 2003
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