Written evidence submitted by Muscular
Dystrophy Campaign |
welcome the Committee's inquiry into the migration from Incapacity
Benefit to Employment and Support Allowance, in particular the
focus on the Work Capability Assessment and the timing of the
migration from Incapacity Benefit, both of which we have significant
conditions are a set of rare and very rare conditions affecting
71,000 people across the UK. Atos Healthcare are the company contracted
to carry out the Work Capability Assessment. Because neuromuscular
conditions are so rare, Atos Healthcare Professionals are therefore
unlikely to have come into contact with more than a handful of
such patients in their careers and will have little knowledge
of the conditions.
therefore strongly support Professor Harrington's recommendation
that greater weight is given to medical professionals who have
expertise in rare conditions so that the assessor can fully understand
the impact of these complex, multi-system disorders on a claimant's
capacity for work.
are concerned that the current Work Capability Assessment does
not accurately assess an individual's capability for work and
does not take into account the significant barriers they may face
in finding and retaining employment.
our research has revealed, people with neuromuscular conditions
face significant barriers in finding work, from physical access
to the workplace through to the attitudes of some employers. Public
transport is also often inaccessible for people with neuromuscular
conditions, presenting a further barrier to employment for these
individuals. An assessment which fails to take into account these
barriers cannot accurately assess a person's capability for work.
therefore recommend that the Government takes additional time
to consider these issues and fully implements the recommendations
of Professor Harrington's review before moving ahead with the
migration from Incapacity Benefit.
1. The Muscular Dystrophy Campaign represents
the 71,000 people in the UK with muscular dystrophy or a related
neuromuscular condition. There are more than 60 different types
of muscular dystrophy and related neuromuscular conditions, many
of which are low incidence, orphan conditions and indeed some
are very rare and are regarded as ultra orphan. Neuromuscular
conditions can be genetic or acquired and, with the exception
of a couple of acquired conditions, there are no known effective
treatments or cures.
2. We endorse the recommendations to improve
the Work Capability Assessment (WCA), following the independent
review carried out by Professor Malcolm Harrington. We are very
concerned that the WCA could make it harder for people with neuromuscular
conditions to claim the Employment and Support Allowance (ESA)
to which they are entitled. Furthermore, we are very concerned
that the changes implemented as a result of the internal review
could make the process even more difficult for people with neuromuscular
conditions. We believe that further consideration should be given
to the structure of the WCA before full-scale migration from Incapacity
3. While the government estimated that 49% of
people undergoing the WCA would be refused ESA, placed on Jobseeker's
Allowance and expected to find work, in fact the actual figure
is 69%. It is also estimated that one in three ESA are appealed,
and that 40%of these appeals are successful.
4. We agree with Professor Harrington that: "the
WCA is not working as well as it should"
and support his call that greater weight should be given to evidence
provided by medical professionals experienced in the particular
condition affecting the person undertaking the assessment.
5. During Professor Harrington's review, we had
shared our concern that people with serious neuromuscular conditions
are being incorrectly assessed as being fit for work, as a result
of a flawed assessment system carried out by health professionals
with little or no experience with rare neuromuscular conditions.
Many GPs may only see one patient in their whole career affected
by a neuromuscular condition, and it is therefore unlikely that
the Atos Healthcare Professionals (who are contracted by the Department
for Work and Pensions to carry out the WCA) will have experience
in these conditions.
6. The lack of knowledge about neuromuscular
conditions is highlighted in the Department for Work and Pension's
Disability Handbook, which is produced by the Department's Health
and Benefits Division with help from experts involved in patient
care for Disability Living Allowance and Attendance Allowance
Decision Makers. The section on muscular dystrophy comes under
child conditions and contains a number of very serious inaccuracies
about neuromuscular conditions. For example, the section on Becker
muscular dystrophy categorically states that the condition does
not affect the heart. This is simply incorrectcardiomyopathy
is a very serious complication of Becker muscular dystrophy. Furthermore
the Handbook incorrectly describes the severity of muscle disease,
providing misleading information for assessors, and needs to be
revised and corrected as a matter of urgency.
7. Given that this is the type of information
is also provided to the Healthcare Professionals carrying out
the WCA, we are likely to see incorrect decisions being made.
We therefore welcome the recommendation that greater weight is
given to evidence provided by medical professionals, in particular
neuromuscular care advisors, who have expertise in rare conditions
so that the assessor can fully understand the impact of these
complex, multi-system disorders on a claimant's capacity for work.
8. The WCA currently fails to take into consideration
real-life contextit does not measure the availability of
accessible and appropriate work, only functionality for theoretical
jobs, and does not recognise that for many disabled people who
are able to work, it can be almost impossible to find, obtain
and retain employment, due to inaccessible workplaces, transport
and employer attitudes.
9. The Muscular Dystrophy Campaign's Trailblazers
Young Campaigners Network is a group of young people with neuromuscular
conditions campaigning for social inclusion for people with disabilities.
As their report, Right to Work, reveals, there is a severe
lack of appropriate employment opportunities for people with disabilities,
who also face a poor understanding of disability among employers.
quarters of Trailblazers think the job application process puts
disabled people at a disadvantage.
of Trailblazers believe their job applications have been rejected
because of how employers view their disability.
quarters of Trailblazers feel physical access to the workplace
is a major barrier to finding a job.
in seven disabled graduates (average age 26) says they have never
been in paid employment.
Trailblazer one is a member of the Muscular Dystrophy
Campaign's Trailblazers network, a group of young people aged
between 16-30 who fight against the social injustices experienced
by young people living with muscle disease or a related condition.
Trailblazer one is 25 and lives in Lancashire. He has Spinal Muscular
"One of my biggest worries was the financial
side of things. I have good days and I have bad days with my health,
which is why I needed to try and find a part-time placement with
a certain level of flexibility. I have spinal muscular atrophy
and things get harder and harder. The problem is that once you've
been taken off Incapacity Benefit there is a six month period
before you can get it again. So if things got difficult and I
leave an employer, it's extremely difficult to get another job
and impossible to get back onto the same income replacement benefit.
It's a "Catch 22" situation. You want to work but the
employer can't deal with disability, so you lose your job and
you can't go back on disability benefits."
10. Whilst we welcome the intention of ESA to
support those who can work to find employment, the evidence above
demonstrates that significant barriers to finding a job continue
to exist for people with neuromuscular conditions. Professor Harrington
has recommended that further research should be carried out to
"understand whether the assessment could and should incorporate
more 'real world' or workfocused elements." We support this
recommendation, but urge the Government to carry out this research
as a matter of urgency.
Trailblazers two and three explain some of the difficulties
they have experienced when looking for work.
Trailblazer two from Edinburgh:
"In effect, employers are able to discriminate
on the grounds of disability with a justifiable cause. This would
not be the case on the grounds of race, gender or sexuality. But
they are excused on the grounds of disability. The law has no
teeth to actually encourage the appointment of new disabled employees,
but the DDA is a welcome step if you were to become disabled whilst
Trailblazer three from Birmingham:
"I sent in a prospective CV (in which I did
not disclose my disability) to a company, and received a phone
call a few weeks later. I was asked to come in for an interview,
but when I enquired about wheelchair access the person said they
would find out and call back, but never did!"
11. The changes recently made to the WCA as a
result of the internal review have led to significant simplification
of the descriptors which make them less able to identify the barriers
an individual may face in finding work.
12. For example, the internal review of the WCA
argued that "individuals who use a wheelchair to mobilise,
if working in a fully accessible area, are therefore not limited
in their capability for some types of work"
This fails to take into account that many workplaces are not accessible
to wheelchair users and some smaller firms will not be required
to make reasonable adjustments to make their workplaces accessible.
13. In addition, public transport is often inaccessible
to wheelchair users, further limiting the number of jobs available
to them. In the End of the Line report, Trailblazers
found, for example, that in one in three bus journeys and one
in four train journeys they were unable to board the first vehicle
to arrive due to factors such as a lack of staff or space for
disabled passengers. On the London Underground, only 22% of stations
are accessible to all wheelchair users, and of these only 1.5%
(or four) of accessible stations are in Zone one (central London).
The WCA is meant to identify ways in which a person's impairment
may impact on work opportunities. Whilst using a wheelchair does
not prevent someone from working, as these examples show, it does
significantly limit the work options available and the assessment
needs to reflect this.
14. As we set out above, we have serious concerns
about the current ability of the WCA to accurately assess an individual's
capability for work. The Atos Healthcare Professionals carrying
out the assessment are very unlikely to have details, or any,
knowledge of neuromuscular conditions and the WCA itself fails
to take into account the significant barriers people with disabilities
face in finding and retaining employment.
15. With these concerns in mind, we believe that
the time-scale for beginning the migration from Incapacity Benefit
is too fast. We recommend that the Government take time to review
the current WCA more fully and implement Professor Harrington's
recommendations before moving forward. Without taking this time
to reflect, many people are likely to be inaccurately assessed
and placed on the wrong benefit, placing additional strain on
the already over-stretched Tribunal system.
27 Department for Work and Pensions (25 January 2011)
Employment and Support Allowance: Work Capability Assessment
by Health Condition and Functional Impairment: Official Statistics.
Professor Malcolm Harrington (November 2010) An Independent
Review of the Work Capability Assessment. Available from:
DWP (2009) Work Capability Assessment Internal Review
p 18. Back