Dealing with today

It’s one of the most difficult times of the year for anyone trying to conceive, and it’s here again. A day focused on celebrating motherhood is bound to be challenging for anyone who is longing for a family, and it’s virtually impossible to escape when every local shop seems to have jumped on the commercial bandwagon. Mother’s Day can act as a horrible reinforcement of the sense of isolation and loneliness that you may feel as more and more of those around you seem to be pregnant or new parents. It can make you feel like an outsider whose life has become cut off form those around you.

If you know anyone else who is experiencing difficulties getting pregnant or who doesn’t have children, this can be the ideal time for meeting up with them. Getting together for a day out, a trip to the cinema or sharing a meal can be a good way of reminding yourself that you are not alone. There are around 3.5 million people in the UK alone who are going through difficulties at any given time, and every one of them will be experiencing very similar feelings about Mother’s Day.

It’s important to be kind to yourself today. Why not buy yourself some flowers? Or even better, if there’s something slightly indulgent you’ve been thinking you’d rather like for some time then today is the day to treat yourself for a change.

Don’t forget it’s a challenging day for other reasons too. For anyone who no longer has their own mother around, or those who may be estranged for some reason, Mother’s Day is also a reminder of what you don’t have. If you are fortunate enough to have your own mother around, try to enjoy being a daughter this Mother’s Day too.

The patient support charity Fertility Network UK has been gathering some useful and supportive advice from others, and here are a couple of the brilliant and really helpful posts they gathered – here from Deborah Sloan and here from Katy Lindemann. And there’s a great post here from Gateway Women’s Jody Day.

Whatever you do today, remember you are not alone – and take care x

Fertility in the workplace

Patient support charity Fertility Network UK have launched a new initiative this week called Fertility in the Workplace to try to raise awareness of how difficult it can be for people going through treatment to deal with work.

FNUK chief executive Aileen Feeney said: ‘Fertility treatment is on the increase with approaching 68,000 treatment cycles carried out every year in the UK and 1 in 6 couples (3.5 million people) affected, yet the majority of employers do not have a workplace policy providing the vital support employees going through fertility treatment need. Research shows having a supportive fertility in the workplace policy is good for business and employees – levels of distress associated with fertility treatment are reduced and employees are more likely to be productive and remain in work – that’s why Fertility Network is launching Fertility in the Workplace – an initiative designed to help employers support employees facing fertility challenges.‘Careers need not be damaged or jobs lost if there is an appropriate fertility in the workplace policy identifying the specific support available for couples or individuals having IVF. Introducing Fertility Network’s Fertility in the Workplace initiative ensures employees are treated fairly and empathetically and feel fully supported. The initiative provides a framework for employers to implement a fertility in the workplace policy and, crucially, provides guidance for both employees and for employers, who may have limited understanding of the impact of infertility and what fertility treatment is really like.’

Fertility Network’s research highlights just 26 per cent of people having IVF reported their workplace had some policy relating to treatment (58 per cent said their employer did not, and 19 per cent were not sure). The lack of a fertility workplace policy was associated with even higher levels of distress.

‘Companies are failing already distressed employees if they do not provide a supportive fertility in the workplace policy,’ said Ms Feeney. ‘Fertility Network’s survey underlines just how much the lack of workplace support affects people undergoing IVF. 50 per cent of respondents worried treatment would affect their career prospects; 35 per cent felt their career was damaged.’

Advice on treatment add-ons

It is sometimes difficult as a patient in a fertility clinic to know whether it is worth paying for some or any of the add-on treatments you may be offered. Now, the Human Fertilisation and Embryology Authority (HFEA), which regulates IVF clinics in the UK, and 10 of the leading professional and patient fertility groups, have agreed how treatment add-ons should be offered ethically in clinical practice in the UK in a consensus statement published today.

It’s published in response to growing evidence of add-ons being offered to patients, without conclusive evidence to date that any of them increase the chance of a pregnancy, and the fact that many patients feel they must do anything to improve the possibility of success. The aim is to create a culture change among fertility professionals in the UK.

Sally Cheshire CBE, Chair of the HFEA, said “We welcome the introduction of new treatments that could increase the chances of success, however, we want to see responsible innovation. Fertility treatment add-ons are being offered to more patients by clinics and we know many patients are asking for these add-ons and paying for them if they have private treatment. It’s crucial that clinics are transparent about the add-on treatments they offer, including the potential costs, to ensure patients know exactly whether they are likely to increase their chance of having a baby. That is why we’ve been working with professional groups such as the British Fertility Society to decide how unproven treatments into clinical practice should be correctly and ethically introduced, which is a vital step towards a more transparent approach in fertility services. We are now expecting clinics to provide information about treatment add-ons to patients, including what evidence there is of effectiveness.”

Alongside the principles for clinics, the HFEA has also published information on the most commonly offered add-ons, with a traffic light rating system, to help patients better understand the effectiveness of treatments they might consider.

Sally adds: “It’s crucial that patients inform themselves about the add-ons they may be offered, so that they can ask the right questions, and make the right choices, when choosing what treatment to have. We’ve produced ‘traffic light’ rated information on our website that keeps them up-to-date with the latest evidence on each of the most commonly offered add-ons.”

Jason Kasraie, Chair of the Association of Clinical Embryologists, said “We support greater transparency in the sector with regard to treatment add-ons. Whilst it is important that we work to ensure patients always receive the latest treatments and have access to new technologies in order to maximise their chance of treatment success, it is also essential that we ensure patients are fully informed and that only procedures or technologies that are evidence based are used.”

Key principles of the consensus statement are:

  • Clinics should only offer treatment add-ons where more than one high quality study demonstrates a treatment add-on to be safe and effective.
  • Clinics should stop offering the treatment add-on to patients if concerns are raised regarding safety or effectiveness.
  • Patients must be clearly informed of the experimental nature of any treatment add-on which is offered, where there is no robust evidence of its safety and/or effectiveness
  • Patients should not be charged extra to take part in a clinical trial.

The General Medical Council, has welcomed the statement. Chief Executive, Charlie Massey said: “We welcome this consensus statement, which will help protect fertility patients from poor practice and feeling pressure to accept additional, unproven extras. Patients deserve to have the best available evidence so they can make informed decisions, in partnership with doctors. It’s vital that doctors innovate responsibly and place patient safety first and foremost. Our guidance on consent sets out how doctors should work with patients to make decisions together about care and treatment options. Doctors working in the fertility sector must ensure that patients have information about the options available to them, including risks and available evidence, as well as any potential benefits.”

You can read the statement here and find out more about the HFEA’s traffic light system for add-ons here 

Petition for access to IVF goes to Number 10

The fertility patient charity Fertility Network presented its #Scream4IVF petition calling for fair access to NHS fertility treatment and an end to the IVF postcode lottery to 10 Downing Street on Monday afternoon. More than 100,000 people signed the online petition. It was a remarkable feat by a small charity to get such support for this cause and to be able to present the petition in this way.

Fertility Network’s chief executive Aileen Feeney said: ‘Gathering 100,000 signatures, in such a short space of time, demonstrates the overwhelming public support to end the unethical and unfair IVF postcode lottery and create an equitable system for access to NHS fertility services in the UK.These 100,000 signatures represent the screams of pain and frustration from not being able to have a child without medical help – and not having your screams heard. The screams of childbirth are loud, but the screams of infertility are just as loud and today they are finally being heard. In the face of this overwhelming public pressure, Fertility Network urgently calls on the Government to debate in Westminster the issue of fair access to NHS fertility treatment.’

Steve McCabe, the MP for Birmingham Selly Oak has been a key political supporter of the campaign for fair access to treatment and he was present when the petition was handed in. Steve’s  Access to Fertility Services bill will have its second reading at Westminster later this month. He said: ’I am thrilled so many people have got behind our campaign to end the postcode lottery of access to IVF. Infertility is a medical condition and it is completely unfair that access to IVF treatment depends on where you live. We can’t have a situation where local NHS groups are allowed to ignore NICE guidelines and ration treatment to save money. It is simply unfair and we wouldn’t stand for it if we were talking about other medical conditions such as cancer or diabetes. It is clear that the public are behind our campaign so now we need the government to step up to the plate and take action to end this disgraceful postcode lottery.’

Fertility and wellbeing event in Wales

If you’re based in South Wales or live close by, you may be interested in the Fertility Network UK fertility and wellbeing event organised for Saturday 1st December in Cardiff. There will be more than 20 exhibitors and expert advice. The first 100 people at the event will also get a free delegate bag.

There will also be some speakers at the event. BBC Wales’ Lucy Owen will share her personal experience of fertility problems, Fertility Network UK’s Anya Sizer will talk about coping with Christmas, Tricia Lowe from Good Nutrition First will be talking about staying healthy at Christmas and singer Elin Fflur will talk about her experiences of treatment.

You can find out more from the Fertility Network UK website.

You are not alone

One of the most difficult things about living with fertility problems is the loneliness and isolation you can feel as everyone around you seems to be getting pregnant effortlessly. If you don’t tell other people what you are going through, you get questions about when you are going to have children and warnings that you don’t want to leave it too late. If you do tell people, you can end up with lots of advice you could do without (“why don’t you just relax/get a dog/go on holiday…”).

Last night, I facilitated a fertility group for the charity Fertility Network UK in South East London and it really struck me, as it does every time we meet, how beneficial it can be to spend some time with other people who really understand how you are feeling and who know what it is like. Fertility Network has groups meeting across the UK, mainly run by volunteers like me, which offer a haven for anyone experiencing fertility problems. It’s a unique opportunity to be with people who share similar experiences and to be able to talk openly and honestly about how you are feeling.

It’s National Fertility Week and there’s lots of work going on to raise awareness about many important fertility-related issues, but one of the most important messages for me is that you don’t need to go through this alone. There are opportunities to meet other people who can offer support, and the groups aren’t miserable or depressing, but rather an opportunity to help yourself to feel less lonely. There are 3.5 million people living with fertility problems in the UK and meeting some of the others may be just what you need.

Coping with unsuccessful fertility treatment

New research has been investigating how people react to unsuccessful fertility treatment and how best to them. Although such comparisons are difficult to make, going through unsuccessful fertility treatment is thought to have a worse impact on your mental health than  divorce and is almost comparable to the impact of bereavement.

When research participants were asked to share their experience, they talked about an intense grief made of profound pain and feelings of loss, sadness and emptiness, which was sustained over time and only very progressively tended to diminish and become bearable. They also said that it was hard to stay connected with the people around them who have children and to discuss their situation with others, and this resulted in feeling very isolated. In addition, most people perceived to be abandoned by their fertility clinics and expressed a need for psychosocial support.

We now know that with time, around nine in every ten people are able to let go of their desire for children and rebuild a happy and fulfilling life. What we haven’t know, is what the things that helped those people to come to terms with their unmet desire for children.

To investigate this adjustment process, Dr Sofia Gameiro from Cardiff University worked with the patient support charity Fertility Network on an online study aimed at answering two key questions. First they wanted to find out whether this grief and the adjustment process is experienced by everyone who is unable to have the children they wanted or is unique to those who had had fertility treatment. Second, they want to investigate the mechanisms which helped people to adjust and could be used to support others.

There were 420 responses to the survey and the vast majority were women with an average age of 35. The survey results showed three key things that help people come to terms with their unmet desire for children;

  • Making meaning of the experience
  • Accepting the reality
  • Refocusing life on other fulfilling goals

The results from this study are in the process of being written up for publication and have been crucial to the development of educational and supporting materials that Fertility Network UK is making available in its More to life website, which is specially dedicated to support those facing the challenges of childlessness. The materials will be launch on Tuesday 30th October and can be accessed here.

New restrictions on IVF funding

It’s National Fertility Awareness Week and today the campaign group Fertility Fairness has released an audit which has found new restrictions on IVF funding. The survey covered all the Clinical Commissioning Groups (CCGs) in England and found that 80% are failing to follow the NICE guidance which says that all eligible couples under the age of 39 should be offered 3 full cycles of IVF treatment.

Many are also setting new criteria to limit eligibility for treatment. Despite the fact that neither male age nor weight affect the success rate of IVF, more than a quarter of CCGs have decided to use the male partner’s body mass index (BMI) to decide whether a couple can access NHS treatment, and 8% no longer offer NHS funding if the male partner is 55 or over. Around one in four CCGs also use AMH or antral-follicle count to check a women’s ovarian reserve (an estimate of the number of eggs in the ovaries) to decide whether she is eligible for IVF. The NICE guidance gives some guidance on levels at which these may be helpful to assess how a woman may respond to the drugs used in IVF to stimulate the ovaries, but there is no suggestion at all that this might be used to decide who should be eligible for treatment.

Consultant gynaecologist and Fertility Fairness committee member Raj Mathur, said: ‘ Male age and BMI are not in the NICE guidance as criteria for IVF and there is no strong evidence of impact on clinical outcomes of IVF. AMH and antral follicle count are in the NICE guideline as predictors of ovarian response, but NOT as predictors of the chance of having a baby through IVF. Commissioners are making unjustified extrapolation in using them for rationing.’

The audit found that

  • 3.6% of CCGs have removed NHS IVF entirely
  • 40% do not offer a full IVF cycle, limiting the number of frozen embryo transfers
  • 20% offer one full IVF cycle, transferring all fresh and frozen embryos
  • 23% offer two IVF cycles.
  • 13% offer three IVF cycles.

In the last two years, 30 CCGs have reduced NHS fertility services, and one in ten CCGs is currently consulting on cutting or removing NHS fertility treatment.

Sarah Norcross, co-chair of Fertility Fairness, said: ‘It is shocking to see CCGs introducing their own ‘access to IVF’ criteria, as well as reducing the number of IVF cycles they offer. It is not the CCG’s job to decide the criteria for accessing NHS fertility services. NICE has accessed the evidence in its guideline and developed access criteria for NHS patients and they do not include male BMI, male age, a woman’s AMH level or whether or not a couple has a child from a previous relationship. What criteria will CCGs introduce next; star signs and shoe size? CCGs need to remove their extra ‘access to IVF’ criteria now.’

Aileen Feeney, co-chair of Fertility Fairness and chief executive of leading national charity Fertility Network UK said: ‘ Fertility Network is extremely concerned about the effect that reducing access to NHS IVF has on already distressed patients. Infertility is a devastating disease causing depression, suicidal feelings, relationship breakdown and social isolation; removing the recommended clinical help or making it harder to access is cruel and economically short-sighted. Access to NHS treatment should be according to medical need and not your postcode. We urge anyone affected to join Fertility Network’s #Scream4IVF campaign calling for fair access to NHS IVF in the UK; with your help we can reach 100,000 signatures and hold a debate on the issue at Westminster. Sign the petition at www.scream4IVF.org and share your #Scream4IVF during Fertility Week.’

Royal pregnancy announcement

Pregnancy announcements are never easy when you’re trying to conceive, but one which has swamped the media and is this morning taking up endless pages of many newspapers is particularly difficult to avoid. What makes this announcement even more challenging is that the Royal couple were only married a matter of months ago, and seem to have conceived with effortless ease.

It was unfortunate that the announcement came during Baby Loss Awareness Week, on a day when many people were preparing to light candles for the Wave of Light in memory of their own losses. Although the couple have been criticised online for this, the most likely reason is that they simply didn’t know the significance of the day.

The endless discussions about the Royal pregnancy are going to go on – and on, and on – during the next few months. One of the best ways of dealing with that is to spend time with other people who understand how you feel about this because they share similar experiences. Why not try one of Fertility Network UK’s fertility groups which run across the UK? They’re an ideal opportunity to meet others and can be really empowering. I admit I am biased about this as I run the group in South East London, but that’s because I know how much it can help. Being with other people who understand, and who share your conflicted feelings about pregnancy announcements can make all the difference. It can help you to realise that you are not having a personality change and becoming an unkind person, but are reacting in a perfectly normal way to an emotional challenge. You can find details of all FNUK’s groups here, and it there isn’t a group near you, they can offer other support too – have a look at their website

Rally for fair fertility funding

It was great to be able to attend the rally at Westminster this evening organised by Fertility Network UK as part of their Scream4IVF campaign to try to push for fair funding for IVF based on the NICE guidelines, which conclude that it is both clinically effective and cost-effective to offer three full cycles of treatment to eligible women who are under the age of 40.

There were a range of excellent speakers at the rally including Fertility Network UK’s Chief Executive, Aileen Feeney, and London Organiser, Anya Sizer. They were joined by Paula Sherriff MP, Steve McCabe MP and author and Director of Fertility Fest Jessica Hepburn as well as Damion Sizer giving a male point of view and the brilliant Hope Sizer talking from the perspective of someone conceived by IVF.

It was an inspiring rally, and ended with some of the recorded screams (which were very loud!) and an opportunity to Scream for IVF ourselves. If you haven’t already signed the campaign petition to get a parliamentary debate on IVF, it’s not too late – you can find it here