Charity seeks to help people suffering with fertility issues
ASIANS MUST END STIGMA AROUND REPRODUCTIVE PROBLEMS, SAYS FOUNDER
HAVING a family is not cosmetic surgery. It is a fundamental right of any human being, should they choose to have one.
The pain of being deprived of this right can be understood only by those who endured failed fertility treatment, lost a child or had an problem.
Not everyone has an idea of how much it means to a man and a woman to be parents. I have been on that journey and wouldn’t wish it on anyone.
I desperately wanted a child. It was an overwhelming feeling. But it is difficult to access basic testing on the NHS.
Self-referring for fertility screening or scans is not straightforward, even if you are willing to pay. Basic information is sadly lacking – you, as a client, would find it difficult to know where to go.
Also, the fee of around £8,000 for just one IVF treatment cycle in this country is prohibitive for many and makes it inaccessible. In comparison, going abroad is often a much cheaper choice. It is also an attractive alternative because some of the treatments in other countries are not available to people in the UK.
During my journey, I also found there were no support groups for me. I didn’t want emotional support. I needed to know more about my reproductive health. I couldn’t refer myself for scans. You can get a cholesterol test for free, but you can’t get a reproductive assessment. I couldn’t turn to anyone to learn how to improve my chances of having a baby. I decided no one should go through what I had. No one should feel lost and alone.
There are 3.5 million people in this country with fertility issues. Without a doubt, there are some people who may not be able to conceive. But we need to optimise the chances for those who can. Men and women should have all the information and support they need in one place. They can then understand their health and make informed choices.
That was why I set up Fertility First UK (FFUK) earlier this year. It had a dual purpose. First, to empower people to take control of their lives and, second, to offer information, education and support.
The platform brings together reproduction professionals – nurses, counsellors, therapists, doctors and academics. You have an initial free, no-obligation consultation and then treatment at a discounted rate, if needed. We provide guidance through our UK and overseas professional partners on pre-conception, conception and post-conception.
FFUK is designed with all communities in mind. It is inclusive and representative. We have reached out to religious, cultural and corporate groups so that we can put the range of our free services on their websites. We have a range of languages and clinics around the world.
Asian patients seeking IVF treatment in the UK struggle to access donor eggs, according to the Human
Fertilisation and Embryology Authority’s (the UK’s fertility clinic regulator, HFEA) Ethnic Diversity in Fertility Treatment report 2018. Hopefully, it is easier to meet their needs from our partners abroad.
Jag Singh, our chairman, has a special interest in the south Asian community. He wants to help destigmatise fertility among people to whom even menstruation cycles is a taboo subject.
Yet they are affected by fertility issues more than the white community. Twice as many Asian patients underwent IVF (14 per cent) in 2018 compared to the UK population estimate (seven per cent), according to the HFEA report. Asian patients also commonly had lower birth rates.
Unfortunately, cultural barriers to conversations around reproduction are huge. South Asian women may not talk to their families, partners or even doctors about their reproductive issues.
It is often also assumed that the women are the problem. In fact, 40 per cent of the total number of heterosexual couples who have fertility issues are men.
One London-based Asian IVF specialist with 40 years’ experience, gave examples of what she comes across with her south Asian clients. (She is unable to quote any details for confidentiality reasons).
“There is always silence and secrets. People in the family, even partners sometimes, are unaware of the situation,” she said.
Then, at times, there is pressure from the family; for instance, a mother-inlaw who insists her daughter-in-law has a fourth round of IVF treatment, because she wants a grandson. Or a husband who refuses to seek treatment for an ongoing issue which prevents him from becoming a father, while the wife is fine.”
I know many in the ethnic community still don’t reach out for help. I hope they can contact us anonymously. They should never feel they are alone. Our website is also particularly helpful to men, who often don’t publicly acknowledge they are the problem. They can organise a fertility MOT at home. We have partners who provide semen and blood analysis kits.
In general, reproductive education needs to start early. I don’t mean learning about the reproductive system – that is already part of the curriculum. There needs to be wholesome education. Young people need good reproductive health early. They think they can buy a nice big house, a big car, go off the [contraceptive] pill and have a family immediately, and then they don’t understand why it doesn’t happen.
They don’t understand the importance of good physical and emotional health to be pregnant.
For men, reproduction is automatic unless they have sperm issues. For women, the brain tells them to prepare and release eggs. It can stop them ovulating. That is why a woman would find it difficult to conceive if she is stressed.
She would probably also need to have a better understanding of her situation from her employer. Fertility treatment is not recognised as necessary medical treatment. Through our work with employers, we hope they are open, sympathetic, develop an understanding of the process and offer medical leave.
As well as engaging directly with people, we work closely with authorities to lobby for fairer fertility treatment. We hope to meet the Parliamentary Cross-Party Committee on Reproductive Health in a few weeks, in order to work together towards a better understanding of the needs of individuals facing fertility problems
Following a successful meeting with Alex DaviesJones, the Labour MP for Pontypridd, she raised FFUK with the equalities minister Kemi Badenock in the House of Commons on October 26. Alex asked Kemi what more could be done regarding fair and equal access to fertility treatment. Kemi has agreed to meet her and FFUK to discuss the issue.
FFUK has also been selected to act as a stakeholder in the work the Competition and Markets Authority (CMA) is doing with HFEA in relation to consumer rights for fertility patients using private clinics.
An anonymous survey we carried out showed that more than 90 per cent of clinics did not comply with the CMA best practice recommendations to allow patients to shop around for medication and save several hundred pounds per cycle. This could mean a huge saving, when it takes on average three IVF cycles (according to NHS and NICE) to get pregnant. We would like to put that right.
I hope this is the beginning of better informed and fairer treatment of people struggling with fertility issues, and that no one has to go through what can be a hugely distressing process alone.
■ Jo Sinclair is a health and social care lecturer. National Fertility Awareness Week was marked from October 31 to November 4. For help and further information, contact jag@fertilityfirstuk.org or visit our website www.fertilityfirstuk.org