Memorandum from the Multiple Sclerosis
Society (DDB 80)
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 £26 million.
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[55]
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[56]
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".[57]
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.
6.5 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.
February 2004
55 MS Society of Great Britain and Northern Ireland,
Symptom Management Survey, MS Society, 1997. Back
56
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. Back
57
ibid. Back
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