European Parliament to Debate Louise's Call for Better MS Care
11 Dec 2003
Louise McVay, a 31-year-old UK woman with multiple sclerosis, goes to Strasbourg next week to hear if the European Parliament will act on her plea for all EU countries to provide equal access to quality healthcare services for people with the most common disabling neurological condition striking at young adults.
Louise, from Loughborough, petitioned the Parliament after writing "in desperation" to the President on behalf of many of the 400,000 people with MS across Europe being denied access to proper treatment and support. The Parliament's Committee of Petitions, in cooperation with the Committee of Employment and Social Affairs, has now drawn up a report which also embraces MS research and employment issues. A motion for resolution will be debated on Thursday 18 December 2003.
It calls for
Louise was diagnosed with MS in July 2000. For some time she was partially paralysed, with no coordination or balance, and suffering double vision. Unable to walk, she was suddenly completely dependent on others. After being refused social services and benefits help, the "last straw" came when because of post-code prescribing she was turned down for disease-modifying drugs (beta interferons and glatiramer acetate).
She wrote to her MP and then to the Prime Minister, receiving "the standard reply". "In August 2001, I just sat on the internet wondering who was in a higher position than him and thought of the European Parliament.
"I went on to their website and found the name and contact details of the president and wrote explaining the difficulties of people with MS in the UK and asked for her help. I had a personal reply, saying my case was being forwarded to the Petitions Committee."
Though Louise did subsequently receive beta interferon after the Department of Health launched its risk-sharing scheme in 2002, she says has become more determined than ever to press the case for equal access to high quality treatments and services for everyone living with MS.
She told the Petitions Committee, "I am a strong person who fights hard to get what I rightfully should receive. Others are not in a position to be like this."
Also attending the debate will be Sarah Phillips, chairman of the UK Multiple Sclerosis Society, as well as representatives of the European MS Platform and of other national Societies.
It calls for
- developing a code of best practice on MS to be followed by all EU member states
- accelerating more effective treatment of the disease through closer international scientific collaboration
- conducting a Europe-wide epidemiological study in cooperation with the WHO
- prioritising mainstream disability issues in the EU research framework programme
- implementing an EU directive on equal treatment in employment
- setting benchmarks of quality and good practice in integrated care pathways and rehabilitation activities
- including quality of life as well as clinical trial data in the assessment of the cost-effectiveness of new treatments for MS and other long-term chronic diseases
- supporting and promoting user-led self-management courses for people with these diseases
- involving people with MS in research and the development of healthcare programmes
Louise was diagnosed with MS in July 2000. For some time she was partially paralysed, with no coordination or balance, and suffering double vision. Unable to walk, she was suddenly completely dependent on others. After being refused social services and benefits help, the "last straw" came when because of post-code prescribing she was turned down for disease-modifying drugs (beta interferons and glatiramer acetate).
She wrote to her MP and then to the Prime Minister, receiving "the standard reply". "In August 2001, I just sat on the internet wondering who was in a higher position than him and thought of the European Parliament.
"I went on to their website and found the name and contact details of the president and wrote explaining the difficulties of people with MS in the UK and asked for her help. I had a personal reply, saying my case was being forwarded to the Petitions Committee."
Though Louise did subsequently receive beta interferon after the Department of Health launched its risk-sharing scheme in 2002, she says has become more determined than ever to press the case for equal access to high quality treatments and services for everyone living with MS.
She told the Petitions Committee, "I am a strong person who fights hard to get what I rightfully should receive. Others are not in a position to be like this."
Also attending the debate will be Sarah Phillips, chairman of the UK Multiple Sclerosis Society, as well as representatives of the European MS Platform and of other national Societies.
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