Specialist disability employment programmes –
consultation on the recommendations in the Sayce
Review
A response from the MS Society
October 2011
About Multiple Sclerosis and the MS Society
Multiple sclerosis (MS) is one of the most common disabling neurological conditions
affecting young adults. Around 100,000 people in the UK have MS and for most
people it is characterised by relapses followed by periods of remission while for
others it follows a progressive pattern. The causes of MS are unknown, there is no
known cure and available treatments are effective only in certain cases and for
different durations of time. MS symptoms include loss of mobility, pain, fatigue, visual
impairment, numbness, loss of balance, depression and cognitive difficulties. MS
can lead to severe and permanent disability.
Established in 1953 and with over 38,000 members and 290 branches, the MS
Society is the UK’s largest charity for people affected by multiple sclerosis (MS) and
the largest not-for-profit funder of MS research in Europe. We are committed to
bringing high quality standards of health and social care within reach of everyone
affected by MS. We provide grants to individuals, for example for home adaptations,
and to public sector organisations to co-fund specialist nursing posts.
Summary and MS Society Recommendations
People with MS face a series of social and physical barriers to securing and retaining
sustainable employment. These are influenced by contextual, individual and
mediating variables such as working environment, functional limitations and
symptom severity.
A recent report by the Work Foundation1 found that up to 80% of those with MS
stopped working within 15 years of the onset of the condition while a 2008 study
suggested that once loss of earnings are combined with the cost of care, support
and medication, people with MS each cost the UK economy the equivalent of
£25,000 per year2.
Last year, 1,618 people contacted the MS Society’s Information and Helpline
services with queries or concerns about employment related issues. Over the same
period 8,052 copies of our ‘Work and MS’ guide have been downloaded or ordered
and, since launching in February 2011, our ‘Working Yet Worried’ publication3 has
been accessed by 3,473 individuals.
1
Bevan, S. et al (2011), Ready to Work: Meeting the Employment and Career Aspirations of People
with Multiple Sclerosis. Work Foundation: London.
2
McCrone P., Heslin M., Knapp M., Bull P., & Thompson A. (2008) Multiple sclerosis in the UK:
service use, costs, quality of life and disability. PharmacoEconomics, 26, 847-860.
3 ‘Highly commended’ in the 2011 British Medical Association (BMA) Patient Information Awards.
The MS Society broadly welcomes the Government’s response to the Sayce review
and we find it particularly encouraging that the personalisation agenda has been
extended to specialist disability employment programmes. While many of the
proposals represent a positive step, there is still a considerable amount of work still
to be done in order to tackle the entrenched obstacles that many disabled people
face in the labour market.
Our recommendations are informed by discussions with people affected by MS,
members of staff with experience of employments issues, third parties and existing
literature.

We strongly support the proposal to award Access to Work budgets directly to
individuals though feel that the personalisation of the scheme could be taken
further with an enhanced role for user-led organisations.

While personal budgets for Access to Work would help to increase knowledge of
the financial assistance available, we are concerned that this is not used as a
pretext to introduce a resource allocation system.

Improved partnership working is necessary to ensure that information about
Access to Work is available through a variety of channels, including healthcare
services, to challenge the compartmentalisation of employment from other
aspects of people’s lives.

We support the Government’s commitment to minimise unnecessary
assessments and to streamline processes wherever possible and believe that
reform of the Work Capability Assessment to ensure that it is fair and accurate is
a vital hurdle still to be overcome4.

It is important to value forms of work other than remunerative employment, such
as volunteering, and recognise the contribution they can make towards both
independent living and securing the Big Society vision.

Jobcentre Plus Disability Employment Advisers (DEAs) need training and support
to take on a more active role in challenging employers who are unwilling or
unable to make adaptations.

Sufficient funding for vocational rehabilitation to ensure that disabled people have
the opportunity to remain in employment.

While an accessible web portal could provide an innovative tool to increase
awareness of Access to Work, it should build on already successful platforms –
such as Your Work Health – rather than developed as a standalone website.

More information and assistance should be made available to enable employees
to make early, supported disclosure to an employer.
4
The MS Society has previously contributed to the Harrington Review on the Work Capability
Assessment and has worked with the Disability Benefits Consortium to submit evidence on the impact
of the WCA upon those with disabilities and long-term conditions.

Other models of specialist employment to supersede Remploy – such as cooperatives and mutuals – can provide significant opportunities for increasing the
choice and control of disabled people within the workplace.
Response
Access to Work (Q1, Q2, Q3)
The MS Society recognises that Access to Work provides many disabled people with
the opportunity to overcome work-related barriers to securing employment and we
therefore welcome the Government’s acceptance that the scheme should be
transformed “into a recognised passport to successful employment” rather than
remaining its “best kept secret”.
In particular, we strongly support the proposal to award Access to Work
budgets directly to individuals, making them transferable between employers and
enabling disabled people to exercise genuine choice and control within the labour
market.
However, we also believe that the personalisation of Access to Work support
should be taken further. In line with many changes to the social care and welfare
benefit systems, there should be an enhanced role for user-led organisations, such
as Centres for Independent Living, in providing on-going advice and support on a
one-to-one basis to those seeking work as well as those already in employment.
Access to Work budgets could include an allocation to pay for this service which
could be used flexibly during the course of work-seeking or employment, thereby
allowing people to access timely and relevant support on their own terms.
Enabling disabled people with MS to discuss work-related issues, barriers or
concerns in an environment outside of the workplace may help to tackle negative
affective outcomes that many experience as a result of the progression of their
condition. In Bevan et al (2010), one expert is cited as saying:
“People will give up work quite soon really because they are frightened for the future
and they feel that they are not going to be able to carry on working”
In another study5, 36.8% of respondents who had left employment due to MS said
that they felt “too stressed by the effort” of work while 33.3% felt they were not “doing
a good enough job”. Early intervention within the workplace, complemented by
support from an independent adviser in a user-led organisation, may help to tackle
some of these feelings and restore self-confidence.
Additionally, it is necessary to ensure that holders of Work Programme
contracts like A4e and Ingeus are sufficiently aware of the Access to Work
Simmons, R.D. et al (2010), ‘Living with MS: longitudinal changes in employment and the
importance of symptom management’. Journal of Neurology, 257, 926-936.
5
scheme. This will help to guarantee that those with disabilities who have been
unemployed for a long period of time are able to access the support they need to reenter the workforce.
Related to this is the importance of partnership working to ensure that information
about Access to Work is adequately disseminated to all those who could benefit.
Ensuring equity of access is central to Sayce’s proposals and the MS Society
believes that this pledge can only be fulfilled by targeting those groups who have low
employment rates and are historically under-represented in the scheme.
People with MS have lower participation rates in the labour force compared to those
with other chronic and progressive conditions and also display comparatively higher
levels of labour force disengagement from the point of diagnosis as symptoms
worsen6. We are concerned that people with MS do not currently receive the
support they require to access and retain sustainable employment.
To reduce this, we propose that any targeted information sharing campaign is
integrated into the healthcare systems that people have regular contact with.
As 90% of those surveyed7 view specialist MS Nurses as a first point of contact for
support, we suggest that signposting information could be made available via this
pathway, raising awareness of Access to Work early on in the progression of the
condition and allowing people to make informed choices about their capability to stay
in employment.
In order to ensure that MS nurses and other specialists are effective conduits for
transferring information to patients, they must be provided with sufficient support and
training from other organisations in order to increase their capacity and confidence.
Additionally, by devolving information sharing to the local level it raises the possibility
of closer collaborative working between health services, user-led organisations and
the Jobcentre Plus. This challenges the compartmentalisation of people’s lives that
institutional and sector divisions can foster and allows issues like employment which
affect everyday health and well-being to be considered holistically.
Funding and Access to Work Priorities
We believe that some of the funding released from reforms to specialist disability
employment programmes should be re-invested into the Access to Work scheme.
However, it is equally important to address other issues that disabled people face in
the workplace that are not covered in the Government’s response to the Sayce
Review. We have outlined our amended list of prioritised improvements below:
1) It is vital that employment issues are integrated into related areas such as
welfare benefits and social care to foster genuine independent living. To this
end, we would like to see the continued work to improve the Work Capability
Assessment (WCA) for Employment Support Allowance (ESA) to ensure that it is fair
and accurate, particularly for people with fluctuating conditions like MS. The MS
6
7
Ibid., p. 926
MS Society, Experiences of People Using Specialist MS Nurses. MS Society: London.
Society is currently chairing a group of organisations which are working with
Professor Harrington to develop recommendations to improve the WCA descriptors
for people with fluctuating conditions. Implementation of these recommendations,
along with the wider Harrington reforms to the assessment process as a whole will
help to ensure that it meets the needs of disabled people and helps to facilitate a
relationship with the labour market that is appropriate for the individual, rather than
penalising those unable to work.
Furthermore, we support the Government’s commitment to minimise
unnecessary assessments and to streamline processes wherever possible and
think that there should be greater information sharing between departments, sectors
and organisations to reduce the need for repeat assessments of need and capability.
Over the long-term, we wish to see the implementation of recommendation 2j:
a single assessment covering employment, social care support and benefit
entitlement. However, there must be guarantees that it is fit for purpose, avoids the
pit falls of the WCA, for example its inadequacy for assessing the impact of
fluctuating conditions8, and is developed in partnership with disabled people and the
organisations who represent them. Further to this, there needs to be a greater
appreciation of the appropriateness of different forms of assessment; for example
evidence from third sector organisations has shown that the stress of face-to-face
assessments in the WCA can exacerbate conditions, further reducing the ability to
gain and retain work9.
The creation of a stronger triage system for Access to Work applicants is a positive
first-step in this process and will mean so that those people who understand their
support needs do not have to go through a detailed and time-consuming
assessment.
This will also help to fulfil the commitment to create a system where disabled
people know the (financial) value of Access to Work support before they begin a
job search. As stated, this personalisation agenda mirrors that already undertaken in
social care services and we think that advising people of an indicative budget would
be useful in enabling forward planning.
However we are concerned that this is not used as a pretext to introduce a
resource allocation system that may penalise some already receiving Access to
Work awards.
2) Paying for a temporary worker in SME enterprises when a disabled person
is unable to work due to their disability is clearly a positive step for those with
fluctuating conditions like MS and may help to reduce some of barriers to the
continuation of employment that people report.
However, the recommendation does not necessarily remove underlying obstacles
preventing disabled people from accessing and retaining work. The social model of
8
Fluctuating Conditions Group (2011), Employment and Support Allowance Work Capability
Assessment: Making it Work for Fluctuating Conditions.
9
Ibid., p. 4-5; UK Drug Policy Commission (2011), Work Capability Assessment: Issues encountered
by people with drug problems
disability states that people are disabled by physical and social barriers that prevent
them from accessing the same opportunities as other members of the community;
this proposal neglects other adaptations that could be made to the relationship
between the person, employer and work and home environments that could make
employment a possibility.
Many of these adaptations are small, cheap and simple but could make a
considerable difference to an individual’s negotiation of their work environment. For
example, greater flexibility in the structure of the working day could allow individuals
to better manage some of the symptoms of MS like fatigue, which affects 80% of
those with the condition10. One person with MS stated that:
“Fatigue is a big problem: you’re fighting to keep your eyes open…it’s
embarrassing… I have more energy in the morning and often need a sleep to recharge my batteries in the afternoon”
3) Raising awareness of fluctuating conditions, such as MS, and Access to
Work among employers, Jobcentre Plus staff and other employees is an
important step to tackling the social barriers that many with the condition face. This
should be complemented by improving the software that Disability Employment
Advisers in Jobcentre Plus offices use so that it allows recognition of the impact of
fluctuating conditions on the needs of clients at work.
Studies11 highlight the importance of early disclosure so that workplace adaptations
can be made, however many see this as a “high risk” strategy requiring support from
an external party.
This process could be mediated by making information on a range of long-term
conditions and Access to Work more easily accessible online.
Sayce recommends the creation of an Access to Work internet-based portal
that opens up information on support, technology, services and ‘best practice’ guides
for employees and employers. We support this proposal, but believe that the
Government should build on existing online resources such as Your Work
Health (http://www.yourworkhealth.com/) which was developed by a consortium of
charities – led by the MS Society – to provide information on finding and staying in
work for those with chronic fluctuating conditions, their employers and healthcare
professionals. The site averages 1,500 unique hits per month and analysis has
shown that most people visit pages providing information on rights while at work.
While specialist Access to Work web pages could be developed, they should be
done so in partnership with organisations already providing such services, or building
on existing resources such as the one highlighted above, and address gaps in
information provision, rather than ‘reinventing the wheel’. It is also important that
Zajicek et al (2010), ‘Patient-orientated longitudinal study of multiple
sclerosis in south west England (The South West Impact of Multiple Sclerosis Project, SWIMS)
1:protocol and baseline characteristics of cohort’. BMC Neurology, 10:88, p. 1.
11 Rumrill et al (2004), ‘Workplace barriers and job satisfaction among employed people with multiple
scelorosis: an empirical rationale for early intervention’. Journal of Vocational Rehabilitation, 20, 177183.
10
signposts exist between existing information provision, such as representative and
user-led organisations such as the MS Society, existing information sites such as
Direct Gov and local authority information services, and employers’ information, and
any new portal.
There is also a significant un-met need on the side of employers, particularly
SME enterprises, for information on Access to Work. Assumptions about the
cost implications of employing a disabled person and the role of Access to Work
must be challenged; the most cost effective way to do this is to make information
more widely available and accessible as well as proactively target employers through
an information drive.
4) Sufficient funding for vocational rehabilitation to ensure that disabled
people have the opportunity to remain in employment.
While it is important to raise awareness of the Access to Work scheme, it is also
necessary to guarantee the funding of proven methods that help disabled people
regain or retain the ability to participate in work.
Evidence shows that vocational rehabilitation schemes are one of the most costeffective ways to keep disabled people in work with a recent report by the RNIB
stating that keeping a newly disabled person in employment has a cost benefit of at
least 2.5 times an employer's investment12. Furthermore, research by the
Department for Work and Pensions (DWP) 13 shows that 92% of those surveyed who
left work because of their disability felt that they could have stayed in their job had
interventions been made.
Aside from enabling the employer to retain the skills and expertise of the employee,
it also allows the employee to make a genuine choice about staying in work.
5) Training Jobcentre Plus Disability Employment Advisers (DEAs) to more
effectively challenge employers who are not willing or confident to make
adjustments.
Each year, the MS Society and Disability Law Service (DLS) deals with a large
number of enquires from people with MS raising issues associated with work-place
discrimination and the failure to make reasonable adjustments14.
Disabled people must feel supported when challenging their employer and there is
clearly a role for statutory organisations like the Jobcentre Plus in providing this
assistance. However, advisers should be given more training on effectively dealing
with these issues. Many third sector organisations already provide similar advice and
assistance, and with support, these organisations would be well placed to expand
their role in this area, working closely with the DWP.
12
Royal National Institute of Blindness (RNIB) (2011), The business case for retaining
newly disabled staff and those with a long-term health condition. RNIB: London, p. 19.
13 DWP, 2007. Ready for work: full employment in our generation. Cm 7290,
London: TS.
14 In 2010, the Disability Law Service provided assistance to 918 people with MS on employment
issues.
It is difficult to foresee the transformation of attitudes and social barriers to
employment unless a more proactive stance is taken by the Jobcentre Centre and
others in defending the rights of disabled people.
6) Training DEAs to more adequately support the individual to make informed,
independent choices.
As part of the personalisation of specialist disability employment services it will be
necessary for DEAs to have sufficient awareness of what such a step-change in
service delivery will mean for their working relations with clients.
It is advisable that DEAs are trained to act as co-producers of employment support,
working with clients towards a goal of sustainable work on the individual’s terms,
rather than dictating what should be done. By placing decision making power in the
hands of individuals, it will also encourage the development of innovative, clientcentred solutions to complex problems, as already witnessed in social care.
Work already undertaken by local authorities in re-training social care assessors
could provide a useful template and there is clearly a role for user-led organisations
and others to contribute to this process.
Alongside enhancing existing online tools, training for Disability Employment
Advisers (DEAs) on effectively supporting those with fluctuating conditions
could be given in person by those from third sector organisations already
delivering services in the local area. The case study below outlines one such
successful scheme delivered by the MS Society that could provide a template for
other regions and organisations to follow.
Supporting DEAs in the South West
An MS Society Service Development Officer (SDO) in the South West
provided DEAs and local MS Society branch support officers in the region
with each other’s contact details, undertook some direct training and
awareness raising for a DEA team and to mark World MS Day sent copies
of the Society’s ‘Work and MS’ publication to every DEA in the South West.
Building on this, the SDO undertook some work with employers, such as
Plymouth NHS Trust, to raise awareness of MS amongst staff. He was also
approached by another national employer who had heard of this activity.
An incredibly successful conference about working with MS was recently
held in the region with speakers from the Work Foundation, Access to
Work, Disability Law Service and Remploy/ProAbility. A number of those
with MS who attended consequently felt sufficiently empowered to tell their
employer about their condition.
7) Extending Access to Work to support more work-related training is to be
welcomed. However more attention should be given to encouraging the development
of other workplace-based relationships, such as volunteering opportunities in a
variety of sectors, to help support those individuals seeking greater independence
and self-confidence in working environments.
As the MS Society has a large volunteering base which includes many with the
condition we subsequently believe that it is important to recognise the contribution
that volunteers make to their local community.
The MS Society would also suggest that more opportunities are made available
for disabled people wanting to access education alongside employment.
Research has consistently found that education acts as one of the most effective
barriers against the loss of employment for people with MS and it can be strong
predictive variable in determining career development for disabled people15.
While work-related training is important, it should be viewed as one of a variety of
options supported by the Access to Work programme.
Remploy (Q4, Q5, Q6, Q7)
The MS Society recognises the contribution that sheltered Remploy factories make
to providing people with disabilities facing complex barriers to work with employment.
However we also realise that reform is required so that the needs of disabled
people can continue to be met.
While we do not know how many people with MS will be directly or indirectly affected
by the proposed changes, the Society supports any efforts to enable employees with
disabilities to have more control over their labour.
The mutualism model provides an innovative alternative to the Remploy sheltered
employment scheme but we are concerned that a planned and supported transition
is in place to enable factories to adjust and transform their business and outputs
accordingly. In the spirit of mutualism, support should be provided by local
development agencies, helping the new mutuals to foster relationships with local
businesses, councils, social enterprises and other cooperatives in the region.
Contact
If you would like any further information about the points raised in this submission,
please contact Laurie Drake, Policy and Campaigns Researcher at
ldrake@mssociety.org.uk or on 020 8438 0780.
Roessler, R.T. et al (2004), ‘Predictors of employment status for people with multiple sclerosis’.
Rehabilitation Counselling Bulletin, 47, 96-103. Julian, L.J. et al (2008), ‘Employment in multiple
sclerosis: exiting and re-entering the work force’. Journal of Neurology, 255, 1354-1360.
15