Fertility funding

The news of cuts to funding for fertility services has made depressing reading over recent days, with more and more areas cutting IVF in order to save money. As many people realise, cutting funds for IVF is a questionable way to save money in the longer term – you end up with dejected, unhappy people who are far more likely to need medical help for depression and related illnesses (we know from a Fertility Network UK survey that the majority of people with fertility problems have experienced depression and that more than 40% have had suicidal feelings as a result of their fertility problems).

People struggling to fund their own treatment often end up going overseas where IVF can appear cheaper, but where there are not always the same measures in place to reduce the numbers of multiple pregnancies, which is the biggest health risk from IVF.  It doesn’t need many sets of prematurely-born triplets conceived after multiple embryo transfers overseas to wipe out any savings from cutting IVF funding here in the UK.

What was more depressing was the reaction to the news about the cuts from some quarters – people with absolutely no understanding or knowledge about infertility who felt the need to try to grab centre stage by offering ill-informed opinions. We all know that not everyone agrees with the NHS funding IVF treatment, but most of those who think this way have the good grace to recognise that infertility is tough and that anyone experiencing it deserves some empathy. Not so one person writing in the Independent who suggested that fertility treatment “only serves to fulfil people’s whimsical obsession with baby-making”, that the NHS should not pay for people to become parents “if they fancy it” and that there is no justification for treatment “just because it will make some people feel more fulfilled in their life”. It was quite breath-taking to read such a glib and insensitive dismissal of a medical problem. Right back to biblical times, the huge impact of infertility has been understood with Rachel, who was unable to get pregnant, crying “Give me children, or else I die”. Infertility is recognised by the World Health Organisation as an illness, and NICE says that IVF is a clinically and cost-effective treatment.

I’m not adding a link to the article in the Independent, or addressing the poorly researched claims as to why we shouldn’t fund IVF one by one. Suffice to say that a few hours after the piece appeared, the person who wrote it tweeted “So I’m about to go on Newsnight. No big deal, right? RIGHT?!?!”… The tweet explained everything about the lack of empathy, understanding or any shred of human kindness in the piece. This article was never meant to be a thoughtful response to a social problem, but was all about trying to create the sort of stir that gets you noticed and on television. It’s just a shame that the media desire for controversy and debate means that ignorance often gets to masquerade as valid opinion.

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

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.

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/

Why do people go overseas for IVF?

A new survey of fertility patients looking at overseas treatment carried out for Fertility Network UK and the website Fertility Clinics Abroad has unsurprisingly found that cost is the major reason why people travel for treatment.  Of those who responded to the survey, nearly 80% said fertility treatment in the UK cost twice as much as they were willing or able to pay and 68% said that they would travel for treatment because IVF overseas was generally cheaper.

When people first started travelling overseas for fertility treatment, it was often to access donor eggs but according to this survey most of the respondents were using their own eggs for IVF treatment abroad. The survey found that people believe that treatment can often be offered more quickly abroad. There was also a perception that the standard of care was better overseas with clinics offering a more personalised approach.

Interestingly many were also attracted by the apparently high success rates overseas, but some respondents had noticed that these rates could be confusing and misleading. A majority had said a centralised database of all overseas clinic success rates would be welcome but it would be very hard to verify these rates. Some overseas clinics claim success rates of more than 80% for women using their own eggs for IVF, and it is important to be clear that these rates are not comparable with the figures you will get from a UK clinic as they are using different criteria, are not always including all the patients treated at the clinic and may be giving rates for positive pregnancy tests rather than for live births.

Almost a quarter of respondents wanted to go overseas because they would have access to anonymous donors and it would have been very interesting to find out why they felt this was an advantage – did they feel it was linked to a larger pool of available donors or was it the anonymity itself which was attractive, and if so why. So, a survey which provides some interesting information – and also raises many questions! You can read more details about it here 

The US fertility lottery

A fertility clinic in the US has recently held a lottery offering a number of free cycles of IVF – which was a good PR exercise for the clinic itself. I’ve just been reading an article about this and was surprised to discover that the “free” cycle didn’t actually include the cost of any drugs (which, as anyone who has been through treatment will know, are extremely pricey). Nor did it include any additional treatments such as PGD or sperm freezing should they be needed. Entrants also had to be under the age of 43.

The lottery was drawn live on Facebook, 30 winners from the 500 or so entrants which seems a small number given what was on offer. But perhaps not, as they also had to agree to forfeit their right to anonymity as the names and locations of winners would be announced during the live draw.

This was carried out for the US National Infertility Awareness Week and whilst the sentiments may appear honourable, the idea of winners having to agree to let the world know about their fertility problems is something I struggle with – as is the concept of a prize which involves spending hundreds of pounds…

In praise of fertility nurses

Today is International Nurses’ Day, so I thought I’d dedicate this post to fertility nurses. When people think about different fertility clinics, there’s always a focus on the consultants when in fact although they are in charge of a patient’s care, they may do very little of the day-to-day care during a cycle of treatment. It’s often the consultants who attract patients to one clinic or another, and yet it may be the nurses who can make a real difference to how you feel during your fertility treatment.

Different clinics have different ways of working, but nurses may carry out scans and check bloods as well as doing much of the more practical dealing with fertility patients. More often than not, a fertility nurse will teach you how to do your injections, will talk to you about how you are feeling, will be there at the end of the phone as a first port of call for your questions or queries. It’s also the fertility nurses who may notice when you are finding it hard to cope and who may suggest a session with the clinic counsellor.

So today, let’s say thank you to the fertility nurses who do so much to help fertility patients but take so little of the credit…