Joint Committee on the Draft Disability Discrimination Bill Written Evidence


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   ibidBack


 
previous page contents next page

House of Lords home page Parliament home page House of Commons home page search page enquiries index

© Parliamentary copyright 2004
Prepared 27 May 2004