Are you affected by IVF cuts?

You may have seen the article in today’s Guardian about the cuts to fertility services across the UK in a bid to save money, and in particular the proposal from Bristol, North Somerset and South Gloucestershire to restrict fertility treatment  to women aged 30-35. If you are affected by this and might be willing to talk to BBC radio about it, could you contact Alice on 0161 335 7502.

 

Pregnancy after fertility problems

Did you know that the charity Fertility Network UK now has a special online group meeting every month for those who are pregnant after fertility problems? The group is open to everyone and will have expert speakers from time to time who will can offer tips and advice and answer questions.

Many people feel anxious when they finally discover they are pregnant after some time trying to conceive, and it can be hard to relax and enjoy your pregnancy.  Talking to others who really understand how you feel can be hugely beneficial and the group is online so you can join from wherever you are based. Although it is run via Skype, it is just like a conference call rather than a video conference so you don’t need to worry about being seen. You can find the details and information about who to contact to join here 

For anyone who isn’t sure about joining a group but would still like some help, you can always call the Fertility Network UK support line and talk to the lovely Diane, or alternatively my book Precious Babies: Pregnancy, Birth and Parenting after Infertility may help

Simply say…

If you’ve experienced pregnancy loss or have been uncertain what to say to a friend who has had a miscarriage, the new campaign from the Miscarriage Association will be welcome. They’re aiming to help people respond to someone who has been through a miscarriage or an ectopic or molar pregnancy. Often people are so worried about saying the wrong thing that they end up trying not to talk about the miscarriage at all, which isn’t a helpful response.

The Miscarriage Association campaign is called Simply Say and aims to make it easier for people to have the conversations that they sometimes avoid. They are encouraging family, friends and colleagues to acknowledge the loss and then to listen, and the campaign aims to help them to know what to say – and what not to say.

The charity has spoken to women and their partners about the things they’ve found helpful  and the things that can be particularly upsetting. They conclude that everyone is different and that it can be hard to find the right words to comfort someone, but acknowledging their loss is one way that you can help anyone who has been through this.  Simply saying that you are sorry is one of the most important things you can do.

The things that can be particularly upsetting are well-meant comments which aim to put a positive spin on the experience – for example “Don’t worry, you can always have another baby” or ““It wasn’t meant to be”. For people who have had a miscarriage after spending some time trying to get pregnant, it’s the “well, at least you know now that you can get pregnant” comments which can be really hurtful. Although people may just be trying to find something positive to say, it is particularly unhelpful when you may feel that you don’t know if you will be able to get pregnant again.

The Miscarriage Association have produced an animation and infographics as well as downloadable leaflet with more detailed information, and you can get involved in their #SimplySay campaign on social media. Do support this important campaign! 

Advertorial posts

Once again one particular overseas clinic is spamming a fertility forum with endless fake patient posts about how marvellous the clinic is. What’s really sad about this is that it shows so little respect for those going through treatment – the posts are all remarkably similar, all from people raving about the marvellous treatment they’ve had at this particular clinic and all of them full of the same terrible English, peculiar phrases and spellings. Some even seem to forget they are pretending to be a patient half-way through and say things like “Maybe during your vacation you can visit xx and will direct you. Maybe also hangout together” or “Welcome to xx where reproductive health is assured”. Do they really think anyone is going to believe this is a fellow patient sharing their fertility journey?

These fake patient posts are so easy to spot and I hope that this is as counterproductive as it ought to be. A fertility forum should be a safe place where patients can talk to one another, and a clinic which doesn’t respect and understand that is not one you’d want to be spending your money visiting.

Your views needed!

If you are having fertility treatment, or have done recently, you may have been offered some additional extras on top of your IVF or ICSI. These additional treatments include things like time-lapse imaging, embryo glue, endometrial scratching or reproductive immunology. Not all clinics offer every type of additional treatment. Some may not suggest them at all, others include them in the price of IVF or you may be given the option to pay for add ons if you would like them.

Fertility Network UK, the patient charity, and the fertility regulator the Human Fertilisation and Embryology Authority, or HFEA, is interested in finding out more about what you think about these add ons, how they should be offered and what you need in order to make decisions about whether to pay for them. Most of these add ons are not fully proven to increase your chance of getting pregnant.

If you have had treatment recently or are going through treatment currently, do take a minute to answer the short questionnaire to help them find out more about what your views are on this subject. You can find the link by clicking here

 

Need help choosing a fertility clinic?

If you are trying to decide where to have fertility treatment, you may have already found the Human Fertilisation and Embryology Authority’s new website, but if you haven’t, the Choose a Clinic section is worth checking out. It is much simpler and easier to understand that the previous website and as well as giving details about the clinic and the treatments offered, it also tells you about treatment outcomes at the clinic, how other patients have rated the clinic and about what the HFEA’s inspectors have reported back on the clinic too. If you are trying to work out which clinic is nearest to you and which might be the best for you to visit for treatment, all these factors may be taken into consideration and you can see the clinics as a list or on a map.

There is a wealth of information if you want to look more closely at individual clinics and it’s a very helpful and highly recommended resource for anyone making decisions about where to have their treatment.

Fertility forum advice

I’ve just been reading a fertility forum where there are a number of posts which are apparently from people who’ve had absolutely marvellous treatment at an overseas clinic. There was something about them which sounded rather odd to me and not quite like the way fertility patients usually write about their treatment, so I checked the forum for other posts about the same clinic and there were a whole series of similar posts from different people, all discussing what wonderful experiences they’d had – but also all making exactly the same slightly unusual errors in their English and using the same phrases. Some even had usernames that were similar, and they had all been successful after repeatedly unsuccessful cycles elsewhere but were returning to the forum to tell others about their treatment.

It’s always helpful to read about other people’s experiences, but reading reports online is never quite the same as talking to real people and it is worth being a little cautious, particularly if something doesn’t sound quite right.  I sometimes get comments on Fertility Matters which begin as a discussion about a post and then suddenly veer into an advertising pitch and are clearly not from a genuine fertility patient. I just delete them all, but the online boards are sometimes used for promotional purposes too and it is a good idea to bear that in mind.

What do you want from nurses?

The Nursing and Midwifery Council (NMC) is holding a webinar tomorrow (June 28) to discuss how they enable nurses to best support people’s health and wellbeing. The NMC is currently consulting on standards for nurses, and wants to hear from the public about the skills they feel nurses will need in the future.

This webinar is an opportunity to ask questions and share your views on the proposals the NMC is putting forward for the future. Any members of the public are welcome to participate and they are particularly keen to include people who frequently come into contact with nurses (which includes fertility patients!)

You can find out more and register here

Endometriosis seminar in London

If you want to know more about endometriosis and live in or near London, you may be interested in a seminar in London later this week organised by Wellbeing of Women. It costs £30 to attend but having been to one of their seminars recently, they are extremely well-organised and interesting. This seminar will include information on the  latest updates on endometriosis research with medical information and practical dietary advice to help manage symptoms. Speakers include Professor Andrew Horne and nutritional therapist Rebecca Pilkington.

There is more information and you can book tickets here 

 

Final call for male participants – involuntary childlessness research

Some of you may remember that we have been supporting a researcher, Megumi Fieldsend, in her search for participants for her work on involuntary childlessness. Megumi is now putting out a final call for men who might be willing to help her study on  “life without children – lived experience of a man who wanted to be a dad”. She is aiming to carry out her final interviews by the end of July so if you know someone who might be a potential participant, could you ask him if he would be interested in taking part in Megumi’s research project?

There are set criteria for participation, and if you have any questions about the study or want to check about the criteria, please do get in touch with Megumi who will be happy to answer any questions. You can contact her by calling 0778 026 3685 or by emailing her at
megfieldsend@gmail.com