- South East London NHS Strategic Health Authority conference on Health Inequaliti

Fibroid Network will be presenting a workshop at this conference, addressing the lack of information on Fibroids & Alternatives to Hysterectomy in UK hospitals; overuse of hysterectomies; cultural issues for women & the need for research to improve services for women

South East London NHS Strategic Health Authority

South East London NHS Strategic Health Authority

Improving Access & Promoting Health in African & Caribbean Communities

10th October 2003

This conference is aimed at health professionals, Voluntary organisations who work with African & Caribbean communities,

A Free Conference To raise awareness of Inequalities in Health

FIBROID WORKSHOP DETAILS

Bridgette York Director of Fibroid Network will be presenting a workshop at this conference on the following issues:

Fibroid Network, the only UK Fibroid Charity & why it was set up
Introduction to what Fibroids are & scale of the problem
What are the treatment options in the UK
New more convenient treatment options inc. Embolization
Recovery times for major surgery causing a conflict with work & home life
Difficulties women have in obtaining information on fibroids from Hospitals & GP's surgeries
Lack of informed choice of treatment options available.
Consent to operations issues
Difficulty in getting Alternatives to hysterectomy
Is there a breach of the Human Rights Act, where an inappropriate Hysterectomy is given, denying a Woman's Right to Found a Family, where alternatives are available.
Overuse of Hysterectomies as a treatment option, ignoring patients wishes
Cultural issues for African & Caribbean women re: Fibroids , hysterectomy & preservation of fertility
Feedback from women & Doctors making enquiries to the Fibroid Network Helpline.
Case Study of survey results from the Fibroid Conference in Lewisham September 2003
Case Study from Fibroid Workshops for Muslim women
Multilingual information for women for whom English is not a first language
Large volume of women, rejecting hysterectomy recommendations and suffering in silence
Women not returning to their Doctors because they are unhappy with their advice
Difficulty in getting second opinions from Doctors
NHS vs Private care for women who want alternatives to hysterectomy
Need for National Support Groups
Demand for complimentary therapies
Is there a need for Specialist Fibroid Clinics?
Need for more Research
Services Fibroid Network will offer to Health Care Providers & women with Fibroids

Background

Fibroid Network is an International charity that is based in London at the Sisternetwork in Stratford, London. Fibroid Network has been founded as a women's health information centre in London where women can come to obtain literature and research women’s health issues with a special focus on fibroids. Fibroids are a multicultural issue. Fibroids affect 50% of women of all races, however 50-80% of Afro-Caribbean, Indo-Asian & Jewish women are affected by this problem. The reasons for this are unclear. But we aim to address these issues.

Over a 100,000 UK women are diagnosed each year with fibroids, ( benign growths in the womb ) . Over 10 million women in the UK develop fibroids during their child-bearing years. Many are not aware that they have them but 50% suffer symptoms such as heavy bleeding & pain. The main surgical option offered in the UK is hysterectomy (removal of the entire womb). African & Caribbean are twice as likely to be offered this option, despite the fact that fibroids are not life-threatening and that hysterectomy leaves them sterilised (unable to have children). Virtually all UK hospitals & GP's surgeries do not provide information leaflets on fibroids & the alternatives to hysterectomy. This leaves women upset and confused about their treatment options. Fibroids can start developing from puberty to menopause, which makes them a live issue for women who desire to preserve their fertility or for women who do not want to undertake major surgery like hysterectomy.

Fibroid Network has set up a Fibroid Information centre in Stratford, London which also contains a bookshop called Sisternetwork, which will sell a number of Fibroid Books via the internet and mail order. A database of recommended doctors and hospitals, natural health and other practitioners will also be accessible to women. Fibroid Network also intends to carry out and promote research into the causes of fibroids and to review new treatments available elsewhere. The network has a mission to actively promote information to women about fibroids and how to prevent them, through talks and seminars, with the ultimate intention of eliminating fibroids completely as a cause for hysterectomy.

Bridgette York, founding Director is a thirty-three year old, Afro-Caribbean, community lawyer, who graduated in Law from London University in 1992, . She is a seasoned women's health rights advocate and was guest speaker at the London Women's Rights Seminar organised by the Human Rights Alliance in1999. She is a member of the Parliamentary Group for Alternative and Complementary Medicine and is also a member of Indian Institute for Alternative Medicines. She has instigated Fibroid articles in the Media with Articles in the Guardian Observer, the Telegraph, the Mirror, GMTV, & BBC and has spoken on BBC Radio in London & Regionally. Over 200,000 visitors have access her http://www.fibroid.co.uk website. She has launched Fibroid Network together with her two fellow co-directors, Shashi Obhrai and Desiree Artesi . Between them they represent a racial spectrum and they have mastery of a number of languages both Asian and European, which they intend to use to make their services accessible to women internationally as well as to Asian women living in the UK. "Fibroids affect many women", said Shashi. "One in three women in this country have them and nearly forty percent of all hysterectomies are performed because of them. Mostly, fibroids cause no problems and they should be left alone. Occasionally they grow very large and interfere with bladder and bowel functioning and then something needs to be done. But even so, why should a woman lose her womb and be made infertile, when there are minimally invasive treatments and alternative therapies that will leave her intact?" . “There is however, no evidence that women with fibroids are less fertile than women without fibroids, in fact fibroids are frequently first diagnosed during routine ultrasounds in pregnancy. “No woman should lose the ability to create life through lack of informed choice.” There are many inequalities in treatment options offered. Black women or women from poor backgrounds are twice as likely to be given a hysterectomy than white women. They appear more frequently in black or Jewish women. A recent study carried out in Washington, USA showed that women without fibroids were a minority. I found out that I had a fibroid at 25.That was a shock on its own, but I was horrified to discover that the main treatment offered to me in this country was a hysterectomy." The main problem with gynaecologists in the UK, unlike those in most of Europe, is that they are, on the whole, good at performing operations, but less good at listening to what their patients want. Removing a woman's womb is effectively taking away a substantial part of her sex organs with all that entails and rendering her infertile. This is the main reason we are so dedicated to finding alternative and kinder treatments".

MISSION STATEMENT Fibroid Network will serve as a focal point for women’s fibroid and health issues Fibroid Networks London office is developing and implementing new programs and initiatives to improve women’s healthcare and health education in the United Kingdom and internationally.

It is an independent, national charitable organisation providing full and accurate information about fibroids, helping women to make informed medical choices about alternative treatments to hysterectomy (removal of the womb). Fibroid Network in association with Sisternetwork will be providing, news, events, contacts, Internet access, magazines, books & articles to the Community.

The Fibroid Network is being founded as a research and action non-profit organization with the following aims:

To heighten awareness of fibroids as a major health issue.
To promote a more informed partnership between patients and their health care team. Providing women with access to information about the pros & cons of new procedures to allow them to make an informed choice about all of the treatment currently available.
To develop networks of women with fibroids, doctors, hospitals and research centres and support groups
To work towards the eradication of fibroids.
To promote alternatives to hysterectomy, where appropriate, in an effort to thereby reduce the number of unnecessary hysterectomies performed on women with gynaecological problems each year Internationally.
To promote support groups for women with fibroids throughout the UK & online globally.
To publicize the treatments for fibroids through Press, Radio and TV, magazine articles and all other possible sources.
To publish information on fibroids for sufferers, Health Care Providers, Hospitals & Local Authorities.
To raise money for research & surveys through national, regional & local fundraising events. To find the cause of, treatment options the treatment of uterine fibroids.
To provide an International database of recommended Doctors, hospitals, Natural Health practitioners providing treatment for Fibroids. To publish a journal of current research linking Universities and scientific researchers to Doctors and Hospitals to speed up progress in finding solutions for this problem.

10th October 2003 9am-4pm Fibroid Workshop from 2pm-3pm

This conference will be held at Lewisham Civic Suite, Lewisham Town Hall, 1A Catford Rd, London SE6 4RU

email: jennifer_jean_jacques@selondon.nhs.uk

To Register to attend Please Contact:

Jenny-Jean Jacques on 0207 716 7041

or Joy Allen 0207 955 4366