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The Independence
The Thalidomide Society's Newsletter
No.21 Spring 2005 - p3
Conference 2005
 Bert Massie had spoken to the Thalidomide Society 4 years previously and began by outlining what he hoped to cover in his talk.
He also offered to talk to people individually whilst delegates were having a cup of tea.
Bert’s talk covered four main issues:
1. The history and development of the DDA and the extension last October so the Act now covered all employers and all companies and organisations that provide services to the public would need to ensure they were accessible to disabled people;
2. The move to amalgamate the three rights based commissions into one Commission for Equality and Human Rights;
3. The Life Chances Study produced by the Strategy Unit at 10 Downing Street and which had been endorsed by the Prime Minister;
4. The need for more disabled people to become involved in politics and campaigning
The DRC was established in April 2000 and currently has nearly 200 staff in England, Scotland and Wales. The Commission has a duty to enforce the law and to draft the Codes of Practice on how the law should be interpreted in practice. In enforcing the law the DRC proved to be both effective and influential and had won every case we had taken to Appeal Court and House of Lords. People seeking help from the DRC should telephone the helpline at 0845 622 633. The helpline expected to receive 160,000 calls this year.
It is not always necessary to initiate legal action. When the DRC becomes involved in a case of alleged discrimination a simple letter results in the company organisation concerned backing down and trying to rectify the fault. However, sometimes it is necessary to proceed with legal action. Ryanair is a prime example as they refuse to stop charging disabled people for the use of wheelchairs in an airport. The DRC challenged this and won. Now it is clearly unlawful for an airline to charge a disabled person for a wheelchair at an airport.
Since October 2004 there are new rights concerning the providers of services which now must be accessible to disabled people. For example, if a hairdressers premises has several steps and is inaccessible then the hairdresser could visit the person at their home. The services of the hairdresser then become accessible. However some compromises may be necessary. A hotel must be accessible but for a small boarding house it may not be mandatory because of the expense which may be involved.
Some shops should be accessible and eventually will be. There is a Bill going through Parliament that should be enacted by December 2006. It will impose a duty on all public authorities to promote equality of disabled people. Policies which are discriminatory will have to be put right. More detail on this is available on the DRC website.
It is likely that the new Commission will come into existence towards the end of 2007 or the beginning of 2008. Initial proposals took no account of the needs of disabled people. However following representations from the DRCX and disability organisations the government has agreed to ensure that at least one Commissioner is a disabled person. There will also be a disability committee with about 9 members of which more than half must be disabled people. The disability committee will also have executive functions and budget. The DRC was fighting to ensure a good budget was allocated. However, these provisions were only guaranteed for five years from the beginning of the Commission. The disability committee and the disability focus could therefore be considerably diminished by the years 22012/13. It will be important for disabled people to monitor the situation closely.
The "Life Chances " project is a good initiative from the Government - a report on independent living and how to move funds from government and local authorities to disabled people - however there may be resistance to the taking of funds from some other body with a budget such as the Department of Health. There is a need to keep up pressure and this is something the Society could follow up. Disabled people need to fight for their own agenda in future.
What is the role of disabled people? Bert Massie himself has been involved since the mid 1960s when there was no DLA, little social services, few accessible buildings and restaurant refused disabled people admission on the grounds of what appearance.
How was progress achieved? By disabled people fighting for their rights. The situation is now much better than it was 40 years ago but people willing to fight are still needed. Disabled people are wanted on committees but don’t apply! This is a challenge to you the audience to get involved in the wider world of disability and fight for the future because the DRC will not be there. Look beyond the issues around impairment – there is a wider human rights issue - take to the fight to them.
Bert then finished his talk by answering questions from the floor - he also met with a number of individuals during his tea break before he left the conference.
 Eric Low, Executive Director of the International Myeloma Foundation (UK) followed. Eric started by explaining about the nature of the disease of myeloma. This is a relatively rare cancer of plasma cells found in the bone marrow. Plasma cells are responsible for protecting the body against viruses and infections. In myeloma a single defective plasma cell - a myeloma cell - multiples rapidly disrupting the immune system and displacing the healthy bone marrow. The myeloma can appear in several different areas of the body – hence the name 'multiple myeloma'. Myeloma can be experienced differently by each patient and the outcomes and responses in the individual can vary. Also the disease is complex, debilitating and very painful.
There are over 4000 new cases each year and approximately 15,000 patients at any one time. Myeloma is difficult to diagnose and is on the increase, particularly in younger patients. There is a slighter higher incidence men and there are differences between ethnic groups. The cause is not known for sure. The incidence of myeloma is between 1-2% of all cancers and 15% of blood cancers. However there is low public awareness about myeloma.
The myeloma causes bone lesions (holes) - the plasma cells produce an abnormal protein which affects the bones; calcium is then released into the blood and causes kidney damage. The traditional methods for treating patients with myeloma included stem cell transplantation for patients where stem cells were available and they are young and fit enough; chemotherapy; steroids; supportive care which includes pain control and transfusion; new and experimental treatments and counselling. However the impact of these traditional treatments are limited. Where thalidomide has been introduced it has been to treat 'smouldering' or asymptomatic myeloma; in newly diagnosed patients; where the disease has re-emerged after conventional therapy; and it can be used on its own or in conjunction with chemotherapy. Clinical trials where thalidomide has been used with chemotherapy to treat myeloma show significant results. However because of the serious side effects, apart from birth defects, such as peripheral neuritis, drowsins, thrombosis, constipation and rashes, researchers are looking at developing analogues.
In this connection Pharmion who did apply for marketing authorisation for thalidomide in 2004 in Europe have produced a risk management programme which would register both doctors, pharmacists and patients involving an ongoing education programme.
One of the derivatives currently being used is Revlimid which is an immunomodulatory drug with multiple "mechanisms of action". Revlimid is taken orally and is "structurally linked but chemically distinct from thalidomide". No evidence of teratogenicity has been found and the response rates to revlimid are high. It can be combined with other therapies including chemotherapy safely and there has no adverse effect on the collection of stem cells. There is also a lower incidence of side effects. It is likely that the derivatives will be used with other chemotherapy combinations in the future to halt the progress of myeloma and as maintenance therapy.
IMF (UK) was founded in 1997 to provide information and support to all those affected by myeloma. IMF (UK) also aims to improve standards of treatment and care through education and research. IMF (UK) also works closely with patients, carers, nurses, doctors and researchers. IMF (UK) runs is a helpline, has a bi-monthly newsletter, support groups and research programmes and undertakes lobbying and advocacy.
Eric concluded his talk by thanking the Society and members for inviting to the conference.
Next Page
Contents:
Co-ordinator’s Report
Karaoke in Tokyo…
The Statement
Conference 2005
Accounting for Thalidomide
A Video for Brazil
Book Review – Riverworld
Bits and Pieces
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