NHS England has announced the start of their new project, the 100,000 Genomes Project, in early 2015. The project aims to sequence 100,000 genomes within three years to determine the genetic mutations that lead to various cancers and rare diseases. This will enable targeted treatments to be developed for a wide range of conditions.

Doctors will be able to refer patients with relevant diseases, who are interested in taking part, to one of 11 Genomic Medicine Centres for inclusion in the project. Samples will be collected, genetic sequencing carried out and the data analysed.

NHS England are hoping to recruit 75,000 patients and The Lake Foundation is encouraging members of the African Caribbean community to take part to ensure that minorities are well represented and any ethnic genetic differences are identified.

Fibroids are benign tumours that develop from the smooth muscle cells of the womb. They are the most common tumour amongst women with an estimated 30 – 40% of women between the ages of 25-45 expected to develop them.

Research has shown that fibroids are more common in black women with an estimated 55-80% of black women affected. In addition, black women are known to develop fibroids at a younger age, are more likely to develop larger and multiple fibroids, and tend to develop more severe symptoms.  The reason for this is unknown but it is thought to be a combination of genetic, environmental and lifestyle factors.

Through our interactions with black women, we have anecdotally found that whilst fibroids are very common there seems to be a lack of information and support for women who are affected.  To explore this issue further we conducted a survey that aimed to explore the needs of women with fibroids, determine if there is a need to develop information and support and if so,  the survey aimed to inform our development of a fibroids information and support programme.

The survey explored four areas:

• The level of knowledge of fibroids prior to diagnosis
• Treatment and diagnosis
• The effect of fibroids and its treatment on quality of life
• The availability of support and information

The key findings from  our survey were:

Awareness of fibroids prior to diagnosis

• There was a general low level of awareness of fibroids amongst participants prior to their diagnosis
• There was a good level of awareness of some of the main symptoms of fibroids but a low level of awareness of other symptoms
• Participants were aware that ethnicity was a risk factor for fibroids but less aware of other risk factors

Pathway to Diagnosis

• The majority of participants delayed seeing their GP for six months or more after first noticing symptoms
• After visiting their GP, most women received a confirmed diagnosis within 4 weeks but over a quarter stated it took 12 months or more to receive a confirmed diagnosis

Treatment

• Despite 79% of participants having a discussion with their GP about treatment, 63% stated they didn’t feel they had enough information to make an informed decision about their treatment
• The majority of participants (42%) had surgery to treat their fibroids
• A quarter of respondents were very happy with their follow-up and aftercare whilst 33% stated that they were not at all satisfied.

The Effect of Fibroids and its Treatment on Quality of Life

• Participants reported that fibroids and its treatment significantly affected their quality of life, affecting them not just physically, but emotionally
• Many participants did not feel they had enough support  to assist them in managing or overcoming the  emotional, physical  and medical impact of fibroids

The Availability of Information and Support

• The biggest gaps in the availability of support were in information and peer support with a small gap in emotional support

Conclusions from the Survey and Next Steps

The survey suggests that a significant number of women with fibroids do not have access to the support and information that they require. The Lake Foundation will focus its efforts on addressing the gaps in the availability of information and support by developing a relevant support system for women, particularly black women, with fibroids.

We have started this process with the launch of our ‘Fibroids Ask the Expert’ in October. This resource provides women with the opportunity to obtain accurate reliable information from experts in the field. In 2015 we will begin to develop a range of publications and explore a support programme for women with fibroids.

In January 2015 the Barbados Diabetes Reversal Study, a pilot study aimed at reversing type two diabetes, will begin. It will explore whether type two diabetes can be reversed by patients adopting a low calorie diet and maintaining a healthy weight.

Participants will be given a low calorie liquid diet for eight weeks with non-starchy vegetables making sure that they receive all the necessary vitamins and minerals. This will then be followed by a 6 month period where participants will resume a normal healthy diet.

The study will be funded by Virgin Unite and builds on research conducted in the UK by Prof Roy Taylor.

If you’re from Barbados and would like to take part in this study you’ll need to have been diagnosed with the condition within the past 6 years.  For more information and to register please contact reversediabetes246@gmail.com or 1 246 266 5673

On Saturday, we were back on the set of ABN TV’s Family time to film a four-part series on belly fat, healthy eating and exercise. This was a follow-up to our recent appearance on Family Time in the summer.

We joined the host of the show, Nana Akousa Boateng, as well as Lillian Lartey, founder of I Want My Body Back, Eunice Adu-Appiah, a Health Promotion professional and Evelyn  Asante a behavioural specialist.

Over the course of the four episodes we recorded yesterday, we covered belly fat, its link to various health conditions and strategies for tackling belly fat through fitness, nutrition and a reduction in stress levels.  And, we also discussed belly fat, young people and body image.

We had a great time on the set of Family Time and would like to say a big thank you to ABN TV, Nana Boateng and the film crew for inviting us to take part in this series and for their very warm welcome.

Family Time’s series on belly fat will air in early 2015 so please tune in to ABN TV, Sky channel 290 or visit ABN TV’s website for more information.

On Saturday we attended Genesis, an inspirational networking event organised by Bespoke Hairstyles and Almocado which brought together black business owners and professionals for a night of sharing, positivity and empowerment, with the theme being Our Voice Matters.

This was a networking event like no other with everyone genuinely wanting to connect with like-minded people, no hidden agendas, just a willingness to ensure that we begin to create a forum for black businesses, professionals, students and charities to come together.

The evening began with mingling, snacks and the opportunity to view the products on sale by the vendors Almocado and House of Afrika.

Once we’d settled in, the main event began with a lovely introduction from Bespoke Hairstyles and Almocado who spoke about the rationale behind the event, how their businesses started and their passion for bringing all their clients together, clients who are multitalented and would benefit from being connected to each other.

Then it was over to us. Everyone in the room had the opportunity to be heard from invited guests and vendors to the caterers and cameraman. This was a night of inclusion.

We were all given a few minutes to introduce ourselves, put forward one word that encapsulates what success means to us (the most popular word that people  put forward was ‘happiness’ followed by ‘freedom’) and then show the group our happy pose – that thing that we do when we are happy with ourselves (it was great fun seeing all the poses).

We heard from lawyers, IT consultants, social workers, artists, bloggers, vloggers, financial analysts, raw food chefs, architects and many, many more. It was very motivating to hear everyone’s story and surprising to learn that so many people are juggling 9-5 jobs and their own businesses; it was a truly multitalented room of people.

This was a very enjoyable event and we’d like to say a big thank you to Bespoke Hairstyles and Almocado for organising this event and  inviting us to attend, we were truly honoured to be there and look forward to their next event.

We’ve just finished reading ‘Eyo’ by Abidemi Sanusi, a Nigerian author we had the pleasure of meeting at the African Literary Evening.

Eyo is an excellent, but a heart-breaking book that highlights, very vividly, the issue of child trafficking and sex slavery.

The book tells the story of 10-year old Eyo who is born into abject poverty in Nigeria where she lives with her parents and two siblings in the slums on the swampy marshes of the Lagos Lagoon.

Eyo is trafficked to the UK with her uncle to escape life in the slums with promises of receiving an education and bettering her life. Unfortunately, this is not to be as she finds herself trapped with a cruel family as a domestic servant and then sold into sexual slavery.

Because of the subject matter, this book is hard to read but at the same time you just can’t put it down. The story unfolds in a very interesting and captivating way and gives a disturbing insight into this horrible industry.

What struck me about this book was that it really demonstrates the consequence of not addressing the inequalities that exist in the world. At the root of this issue of child trafficking and sex slavery seems to be poverty.

Poverty means that families desperate to break free of the poverty cycle become vulnerable and easily tricked and exploited by those in the industry and become trapped in a world that can be impossible to escape from.

Another thing that struck me from the book was inaction. There were several points in the book where people noticed that something wasn’t quite right with Eyo and could have intervened and saved her but fear of offending or jeopardising their own peaceful life crippled them, leaving poor Eyo to endure the horrors for much longer than she should have done.

Another painful issue in the book was that some of the abuse Eyo suffered was at the hands of family members as well as women who themselves have children.

Even though this book was fiction it tells of the reality that many young people face and something desperately needs to be done about it. At the end of the book, we are encouraged to take action and support organisations like Stop the Traffik and Africans Unite Against Child Abuse. Please do visit the websites of these organisations to find out more about what can be done to help.

This was an excellent book that raises awareness of an important issue and was shortlisted for the 2010 Commonwealth Writers’ Prize.

“….outstanding commentary on the conditions that make life in home countries unbearable, the casual cruelties meted out on strangers as they travel, and the indifference that sustains it all’ – Judging panel on Eyo, Commonwealth Writers’ Prize 2010

This book is definitely worth reading and can be purchased on Amazon

On Wednesday, a group of us attended Centric Community Projects‘ Women’s Equality Exhibition in Croydon. This event forms one of a series of nine exhibitions that will cover each strand of equality as defined by the Equality Act 2010.

The exhibition was a comprehensive look at the history of the women’s equality movement starting on the 6th floor of the Norwich Union Building and ending on the 3rd floor.

We started our journey through the exhibition on the 6th floor where we learnt that the women’s equality movement formally started in 1867 with the formation of the London Society for Women’s Suffrage, an organisation that campaigned for women’s rights.

Over the four floors of the exhibition, we were taken through the many campaigns, challenges and victories of the women’s equality movement. Such as:

• the passing of the women’s property act in 1870 allowing women to own property,
• the formation of the Women’s Social and Political Union in 1903,
• the contribution that women made during World War II,
• the first general election where women were allowed to vote (1929)
• the moment when women were first allowed to access the legal and accountancy professions (1920)
• the appointment of the first female minister of state, Barbara Castle the Minister of Transport (1965)
• Britain’s first female Prime Minister, Margaret Thatcher (1979)
• Equal pay for women (1985!)
• The first female Speaker of the House, Betty Boothroyd (1992)
• The major success of the female genital mutilation campaign with the passing of the Female Genital Mutilation Act in 2003

The exhibition ended with an inspirational look at ‘Women of Authority, Influence and Achievement’. This part of the exhibition put the spotlight on women who are considered to be the “movers and shakers” within their field.

It was nice to see the range of professions that were highlighted – women’s rights activists (Emmeline Pankhurst), politicians (Rt Hon Harrit Harman), humanitarians (Camila Batmanghelijh), scientists (Prof Dame Jocelyn Bell-Burnell), doctors (Prof Dame Sally Davies), nurses (Dame Julie Moore), engineers (Dame Sue Ion), business leaders (Karren Brady) and sportswomen (Clare Balding OBE)

African Caribbean Women and Equality

It was also great to see African Caribbean women highlighted in the exhibition. From the exhibition, we learnt that in 1978 The Organisation of Women of African and Asian Descent was set up. This was the first black women’s organisation in Britain to act on a national level and it acted as the umbrella group for all black women’s organisations.

The exhibition also featured Diane Abbot, the first black woman to become a member of Parliament and Kanya King MBE, a founding member of Net Women, founder of the MOBO Awards and patron of the Horniman Museum.

Women in Science, Medicine, Engineering and Technology

We were pleased to see that the successes of women in science, medicine, engineering and technology were highlighted and were very inspired by the following:

Technology: Dame Stephanie ‘Steve’ Shirley who founded the software company the F.I Group in 1962! But, she had to adopt the name “Steve” to help in the male-dominated business world.

Science: Professor Ann Glover, Professor of Molecular and Cell Biology at the University of Aberdeen and serves as the Chief Scientific Adviser to the President of the European Commission.

Medicine: Professor Dame Sally Davies, a qualified doctor and appointed as the first female Chief Medical Officer in the UK and voted as the 6th most powerful woman in the UK in 2013.

Engineering: Professor Dame Ann Dowling, a mechanical engineer whose research focuses on combustion, acoustics and vibration. She is currently the Head of Department of Engineering at Cambridge University, where she was the first female professor in 1998 and in 2012 she was appointed a non-executive director of the oil company BP.

We had a great time at the Women’s Equality Exhibition which was extremely informative and would like to say a big thank you to Centric Community Projects for inviting us to attend.

The exhibition runs until Friday 21st November. For more information email info@centricprojects.org

As the number of cases of Ebola continues to increase we hear about the heroic efforts of western doctors and nurses who have travelled to West Africa to offer their services, but we rarely hear of the sacrifices that countries outside of the west are making. In this week’s blog we highlight the response of the small Caribbean nation, Cuba, who has made a significant difference to the Ebola outbreak.

Cuba is the largest island in the Caribbean with a population of 11 million people and a GDP of $6,051.22 per capita (compared to the UK’s GDP of $39,336.91 per capita). This small nation with limited resources has been leading the effort to tackle the Ebola outbreak, sending more doctors and nurses to West Africa than any other country.

In September, Cuba sent 62 doctors and 103 nurses to Sierra Leone and since then has pledged to send 300 more medical personnel. To date, 256 Cuban doctors and health workers have been sent to Sierra Leone, Liberia and Guinea where they have been treating patients, setting up testing laboratories, helping to develop strategies to stop the transmission of the disease and accurately determining the number of Ebola cases in these three countries.

In addition to sending medical personnel to Africa, Cuba has been training healthcare workers throughout Latin America and the Caribbean on how to deal with Ebola and is currently hosting an Ebola conference in Havana with support from the Pan American Health Organisation and the US.

A response like this is not new to Cuba they have been sending medical personnel to deal with disease outbreaks for years. In 2010 Cuban doctors and nurses helped with the Haiti Cholera outbreak and Cuba has worked in Haiti since 1998. Cuba has also provided medical assistance to war-torn Algeria, hurricane-hit countries in Latin America and the US (hurricane Katrina), and following earthquakes in Chile and Haiti. Today, there are 50,000 Cuban healthcare workers providing assistance to 66 countries.

Cuba’s response to the Ebola outbreak has been so significant that it has won praise from the UN and World Health Organisation.

“Cuba is world-famous for its ability to train outstanding doctors and nurses and for its generosity in helping fellow countries on the route to progress.”

“I am extremely grateful for the generosity of the Cuban government and these health professionals for doing their part to help us contain the worst Ebola outbreak ever known.” – Dr Chan , WHO

Based on Cuba’s size and resources, its response to the Ebola outbreak has been heroic and we applaud them for this and are extremely grateful for their efforts.