DDB 80 Multiple Sclerosis Society
Joint Committee on the Draft Disability
Discrimination Bill
Evidence from the MS Society
February 2004
1. Introduction
About MS
1.1 MS is the most common disabling
neurological disorder affecting young people in the UK with an
estimated 85,000 affected by the disease.
1.2 MS is a disease of the central
nervous system where myelin, which provides electrical insulation
and protection to nerves, is attacked and damaged. MS is unpredictable
and can cause a wide variety of symptoms such as loss of mobility,
pain, fatigue, vision problems, numbness, loss of balance, depression
and mood swings. The disease may progress steadily or involve
periods of active disease followed by periods of remission.
The MS Society
1.3 The MS Society was established
in 1953, and is a UK-wide charity dedicated to supporting people
who have MS, as well as providing help to those people's families,
friends, carers and colleagues. A significant number of our trustees,
staff and volunteers either have MS or a personal connection with
MS.
1.4 The Society provides care and
support through services which include running a national helpline,
producing publications on MS, supplying welfare grants, funding
research, providing MS specialist nurses and delivering respite
care. Our annual budget is £26m.
1.5 We are a democratic organisation
of over 40,000 members. We aim to ensure that the perspective
of people affected by MS informs all decisions relating to MS
health services and social care.
2. Summary
2.1 The Society welcomes the Draft
Disability Bill which should enhance the rights of people with
disabilities and help remove some of the barriers currently in
place in society for the 8.6 million disabled people in the UK
in relation to employment rights, public transport, private clubs,
housing and public functions.
2.2 In particular we welcome the
measure to extend the definition of disability to include people
with MS from the point of diagnosis onwards and the provision
to place a duty on the public sector to promote equality of opportunity
for people with disabilities.
3. Discussion
3.1 This Society's response to the
draft bill is informed by a limited number of particular cases
that we are aware of where people with MS have experienced some
form of disability discrimination and have challenged it.
4. Transport
4.1 The provisions in
the draft bill to cover discrimination in relation to transport
should enable people with disabilities a greater freedom to travel
and make a tangible difference to people with MS. In the Society's
1997 MS symptom management survey people with MS reported that
the most negative effects of MS are the restrictions placed on
going to work/school/college and travelling freely outside the
home.
4.2 We note that the government
is not proposing to lift the exemption on aviation but plans to
review this sector this year. The Society is aware people with
MS continue to experience discrimination when travelling by plane
and this needs addressing.
4.3 For instance we had
contact from a woman with MS who used the medication beta interferon.
She was prevented from boarding a transatlantic flight with her
beta interferon syringes and was told she needed medical
clearance to fly. This woman had previously checked with the
airline's 'special services department' and been advised that
she would be able to fly as long as she had a doctor's letter
stating she had MS and she was on beta interferon. Despite
having acquired a doctor's letter, the woman was still refused
entry to the flight when she attempted to check in.
5. Duties of Public Authorities
5.1 Currently the Disability Discrimination
Act places the onus on individuals to challenge discrimination
through the courts. The Disability Rights Task Force has already
recognised that placing a duty on public authorities to promote
equality of opportunity is essential to tackle institutional discrimination
and make real and substantial progress towards a more inclusive
society. A public sector duty has the potential to make
a very real and tangible difference to disabled people.
5.2 The Society is aware
of at least one case where a the local authority pressured an
individual who worked for them, to accept early retirement on
ill health grounds once they had disclosed they had MS.
5.3 In addition to the impact such a duty should
have on employment practices the Society welcomes the impact this
duty should have on eradicating discrimination from public sector
service provision.
5.4 We are aware both
from our day-to-day contact with people affected by MS and from
qualitative research that people with MS often have to 'fight'
or campaign for better rights or access to public services and
facilities. And while some people with MS may gain satisfaction
from pressing public authorities to take firm action to eradicate
discrimination and barriers in place, this is not necessarily
a battle people feel they should have to fight:
"there is always
the feeling they (public authorities) should have done that anyway
without the need for often substantial pressure, and of course
such a campaign takes up yet more scarce time and energy for the
person with MS"
6. Definition of Disability
6.1 The Employment Appeals
Tribunal case of MB V the University of Surrey has demonstrated
the lack of protection against discrimination offered to people
with MS under current law. This case illustrates the difficulties
people with mild or invisible symptoms of MS face to prove they
have a progressive condition and are 'disabled'.
6.2 The Society is also aware from it's
focus group studies, from informal feedback from people with MS
through our Specialist MS Helpline and from people who have participated
in the Society's 'At work with MS' employment training courses
that people with MS have serious concerns about disclosing their
condition to their employer before the appear to be disabled,
particularly in light of the lack of protection they are afforded
under current legislation.
6.3 This feedback underlines
the need to offer people with early and/or less visible symptoms
of MS protection from discrimination from the point of diagnosis
and the Society strongly supports the inclusion of such provision
in the bill. The earlier you are recognized legally as being
disabled, the earlier you are able to access reasonable adjustments
to enable you to stay in work and to avoid having to take early
retirement.
6.4 We very much welcome
the added protection from discrimination that this provision would
offer an estimated 13,000 people with MS and the extra protection
offered by including MS alongside HIV and cancer on the face of
the bill.
6.4
The regulatory
impact assessment estimates that the recurring cost of extending
the DDA to cover an additional 73,000 people with HIV cancer and
MS is £78,000. The Society considers the economic and wider
benefits gained by enabling a greater number of people with MS
to remain in work, to more than compensate for the small sum cost
of additional employment tribunals.
7. The extent of the draft bill
7.1 The Disability Rights Commission has
undertaken a substantial review of the Disability Rights Task
Force Recommendations and their submission to the Joint committee
outlines a number of other gaps in the draft legislation, not
covered in this submission, which the Society urges the committee
to act on.
8. Timing of reform
8.1 The Society urges the Joint committee
to introduce the bill proper during this session of parliament
and to ensure the bill receives assent before the next election.
This would be in line with the Governments manifesto commitment
to extend the basic rights and opportunities to people with disabilities
and minimise the risk of the bill falling in the event of an early
general election being called.
8.2 Failure to deliver on these commitments
would according to the Regulatory Impact Assessment leave 13,000
people with MS without legal protection against discrimination
and ensure the UK's 8.6 million disabled people continue to experience
barriers to leading independent lives.
Submitted by Rachel Duke, Policy
& Campaigns Officer
Contact details:
Telephone:020 8438
0827, Email: rduke@mssociety.org.uk
The MS Society, MS
National Centre, 372 Edgware Road, London, NW2 6ND
MS Society of Great Britain and Northern Ireland,
Symptom Management Survey, MS Society,1997.
Robinson I Hunter M and Neilson S. A
dispatch from the front line: the views of people with MS about
their needs. A qualitative approach. A report for the MS Society
London. Brunel MS Research Unit,
p109, June 1996
ibid
|
