Focus group for research

We’ve just had a request for people who might be interested in taking part in a focus group to talk about their experiences of fertility problems from Dr Shantel Ehrenberg, a Lecturer in Dance and Theatre, who is leading a research study to investigate and increase awareness of women’s often silent emotional and physical experiences of getting a diagnosis of fertility problems.

She is not a clinician, so there will be no medical information and this isn’t a clinical study, but Shantel is interested in understanding women’s experiences of infertility and sharing her findings with medical professionals and the society-at-large. She wants to use your experiences to help to inform a performance lecture as part of this research. A performance lecture is a thirty-minute presentation that includes text, movement, and visual imagery, presented at conferences and workshops, to help raise awareness about women’s experiences of fertility problems.

The current research project is funded by a University of Surrey Pump Priming Award and approved by the University’s Institutional Ethics Committee.  Compensation is offered for taking part (£25).

​The focus group would be about 90 minutes and include a brief introduction of the project.  The meeting will take place in central London. If you want to know more or are interested in taking part you can contact Shantel by email s.ehrenberg@gsa.surrey.ac.uk or phone  01483683137

New online group for people who are pregnant after fertility treatment

At Fertility Network UK, we have set up a new online group for people who are pregnant after fertility treatment.

Whether you’ve just had a positive pregnancy test or are further down the line, you may be interested in joining our new group which will get together online. If you would like to join the group or to find out more about it, please contact kate@fertilitynetworkuk.org

Breaking bad news

Do you think clinic staff get it right when it comes to breaking bad news to fertility patients? And how do you think that could be improved? Are staff too blunt? Or not blunt enough?

I’ve met so many patients who have felt that things weren’t always handled in the best way, and I’d be keen to find out more about where you think things may go wrong – and what you think might work better.

I’d be really interested to know what you think – you can leave a comment below or use the contact form if you would like to send a private response – http://fertilitymatters.org.uk/contact/

The Daisy Network Conference

The Daisy Network, the support group for women with premature ovarian insufficiency, is holding a conference on Saturday 10th June at Chelsea and Westminster Hospital. They have speakers covering a wide range of topics including HRT, fertility, sexual health and nutrition. There will also be an Ask the Experts session and plenty of opportunity to meet other members.

It promises to be an interesting day, and tickets cost £15 for members and £20 for non-members. including lunch and break-time refreshments. You can buy tickets here 

Could you help shape training for doctors of the future?

There’s a very exciting opportunity to help inform the new curriculum for specialist doctors who are training in gynaecology and obstetrics. The Royal College of Obstetricians and Gynaecologists is looking for a range of people to join a new public insight group to help identify the communication skills and clinical knowledge that doctors need to give the best possible care.

The curriculum is updated every so often to ensure that new evidence or technology is taken into account, and the RCOG is committed to involving people who use services in all aspects of their work. Although the expertise of experienced doctors is vital, it is just as important to involve service users to hear what knowledge and skills they feel specialists of tomorrow should have.

The Public Insight Group will aim to include people from across the UK with a variety of needs and experiences. It may also include representation from individuals who have particular understanding of the needs of specific communities and can represent the experiences and needs of those groups effectively. There will be a core group of around 20 people who will meet face-to-face for an initial workshop session. After this, the group will be coordinated mainly by email as the new curriculum develops.

A wider consultation group will bring a broader pool of views into the project. This group will only be involved by email. Both the core and the wider group will play a crucial role in informing the new curriculum over the next year. Both groups will be communicated with regularly to gain insight and feedback will be given to members about how the new curriculum is progressing.

For more details about what is involved and to see whether this is something you may be interested in, see here 

Miscarriage

Thanks to The Guardian’s Hadley Freeman for this article about her experience of miscarriage. It is raw, honest and very moving, and she raises important questions about why it is that we don’t talk abut miscarriage. Why is it that women are often encouraged not to mention that they are pregnant until they reach 12 weeks because of the risk of miscarriage? It assumes that we would want to keep losing a baby secret, that it is something to be hidden and not talked about. For some people, this may make things easier but for many others, not being able to talk about something so heartbreaking can make it even harder to cope.

Miscarriage is devastating whenever it happens in pregnancy – and if you’ve taken time to get pregnant in the first place, it can feel even more overwhelming. If you, or anyone you know, is affected by miscarriage, the Miscarriage Association, can offer support and advice and is a really helpful source of information.

Conceiving Histories

If you’re in or near London, there’s an event later this month which may be of interest presenting the work to date of a project called Conceiving Histories, which looks at what the researchers call “the history of un-pregnancy” – so trying to conceive and the politics of childlessness in the past as well as the ambiguity of early pregnancy diagnosis.

It is funded by Birkbeck, University of London and the Wellcome Trust and aims to identify and research case studies from different historical moments. At this particular event they will be looking at pregnancy diagnosis today and in the past.

It will take place on Wednesday 17 May and it is free to attend but you need to book – further details here.

National Infertility Awareness Week

It’s the final day of National Infertility Awareness Week in the US and there are still lots of ways to get involved. Check out the website for events like the Walk of Hope if you live in the States, but those who don’t you can still support the week on social media using the hashtags #ListenUp #NIAW to help raise the profile of the week and the cause.

This year’s theme is “Listen Up!” and RESOLVE, the US support network, is hoping that anyone who cares about infertility can feel empowered to do something that makes a difference, either in your own family building journey or to help someone else. They are calling on everyone to “Listen Up!” and become part of the movement.

Low ovarian reserve

If you’re trying to conceive, you will be aware of your ovarian reserve but when you are starting out on your fertility journey, this isn’t something you will have come across before. Our potential to produce eggs declines as we get older, but the rate at which this happens is different for everyone – so some women may be diagnosed with a low ovarian reserve in their thirties or even twenties, which often comes as a real surprise as there may be no other signs of any decline in fertility at all.

If you want to know about your ovarian reserve, I was interviewed about the emotional impact by Allie Anderson for an article for NetDoctor the other day which you can read online here.  It is important that we talk about this issue more often and more openly. Fertility specialists may suggest using donor eggs if they feel the ovarian reserve is so low that IVF is unlikely to be successful, but for women this may seem a huge and unexpected step and is certainly one which needs thought and counselling.

Anyone who is using donor eggs or sperm will find it useful to contact the Donor Conception Network who can provide information, help and support.

New fertility support groups

The patient support charity Fertility Network UK has announced two new support groups which have been set up recently in Lancashire/Cumbria and in Hull.

I know many people don’t like to think that they might need a “support group” but what is so invaluable about the groups is being able to meet up with other people who are going through similar things and to share experiences. It really can be such a huge relief just to know that there are other people out there finding it hard to be happy when a close friend announces a pregnancy, or who take long detours to avoid the local nursery at pick up and drop off times. Going along to a group is a sign of strength rather than suggesting that you need more support than other people and if you see it that way, it can be a useful – and free – way of helping yourself through treatment.

For more information about the Lancashire/Cumbria group, please email lancashirecumbriagroup314@gmail.com and for the Hull group, you can email fertilitygrouphull@gmail.com.

You can find a list of all the other Fertility Network UK groups on their website here. There really is nothing to lose by going along once and seeing what you think – you may find it helps far more than you expected!