If you’re concerned by the postcode lottery for fertility treatment, you can join the Fertility Network UK Day of Action on 25 March. You don’t have to go out marching anywhere, but just a few small actions can make all the difference
There are three ways you can join in –
Contact your MP, Tell them how the postcode lottery is affecting you and what is happening in your local area. You can find out more about how to find your MP’s contact details and what you might want to say in an email or letter here on the Fertility Network UK website.
You can tweet your support using the hashtags #IVFx3 #tellyourMP #righttotry
Fertility guidelines from the National Institute of Health and Clinical Excellence (NICE) say that if you should be able to access 3 full cycles of NHS IVF if you under 40 and eligible for treatment, An overwhelming 98 per cent of England’s 209 local clinical commissioning groups (CCGS) do not follow this guidance fully and have either cut the number of IVF cycles they offer and ration services by introducing additional non-medical access criteria, such as denying IVF to individuals if their partner has a child from a previous relationship.
Do join in and help your charity to help you to make a difference!
New research from the States suggests that women who are depressed are less likely to carry on with fertility treatment. The researchers from the University of North Carolina (UNC) screened 416 women with fertility problems, and 41% scored positive for depression although apparently more than half said that they felt depressed most or all of the time.
The research team found that the women whose screening test showed that they were depressed were less likely to carry on with treatment, and therefore less likely to end up with a pregnancy. You can see more about the research, which was published in the journal Human Reproduction, here
It isn’t really surprising that so many people who are having difficulty getting pregnant experience depression, but it is sad that some may end up avoiding or delaying accessing treatment that could help because of depression and anxiety.
Do you think there should be a cut-off age after which people shouldn’t have children? Or is it fine at any age at which it is remotely feasible? And is it right that we ponder this subject so much when it comes to women having children later in life, and yet barely raise an eyebrow when Mick Jagger has a baby at the ripe old age of 73?
The subject has been back in the news again after Dame Julia Peyton-Jones, former director of the Serpentine Galleries, became a mother at 64. It isn’t clear how she had her daughter, although we can be sure she didn’t use her eggs and that she may well have paid for a surrogate to carry the baby too. I know we all feel and act younger than our grandparents may have done at the same age, but she will be 80 by the time her daughter is 16 – and I can’t help wondering what it would be like for a 16 year old to have an 80 year old mother? Or what it would be like to be responsible for a teenager when you were 80?
Of course, the other problem with news stories like this is that they muddy the waters when it comes to NHS funding for fertility treatment, as many people seem to assume that it is the NHS which is footing the bill for older women to try to have babies. In fact, in most areas there is limited funding for women up to the age of 39, and often nothing at all beyond that. At most women of 40-42 will get one cycle, but if you are older, there is no likelihood of funded treatment.
The Internet can be a fantastic resource when it comes to finding out more about fertility and treatment, and many people gain important insights by reading other people’s fertility stories online. This can, however, have a less helpful side. Although it may be useful to get practical tips, to read about what happens during a cycle and to feel that you are more prepared for what is about to happen, it is also vital to remember that everyone’s treatment is different. The tests carried out, the protocols used, the drugs prescribed can all vary depending on your own individual situation.
Recently I’ve been contacted by a few people asking about their treatment who have become worried that something might not be right because they’ve come across other people who have had different tests or treatments – or who have been prescribed different drugs at different doses. Just because your treatment is not exactly the same as someone else’s, that doesn’t mean it is wrong or less likely to work. If you have concerns, you should never worry about asking at your clinic, but remember that fertility treatment is always tailored to an individual to some degree and that clinics may not all do everything exactly the same way.
I’ve come across quite a few mentions of fertility funding schemes recently where you pay a lump sum and are then offered your money back if you don’t get pregnant. Of course, the usual criticism of these schemes is that they are only available for younger women who are most likely to get pregnant. So I was interested to read of one recently which was apparently open to women of all ages with no age cut off. However, reading further down the article, it was apparent that actually although there wasn’t an official age cut off, women did have to pass a “screening” – and it is highly likely that by their mid forties, very few women would pass such a test.
These schemes can seem a great option – but it is important to understand their limitations as they are not open to everyone.
If there are plans afoot in your local area to reduce the number of IVF cycles offered to those who need treatment, or even to cut treatment altogether, you may be left wondering whether there is anything you can do to make a difference. Although there are sometimes public consultations when funding is due to be cut or reduced, it can be tough to have the confidence to put forward your point of view – and sometimes it may start to seem as if there is very little point anyway as people wonder whether those who commission treatment are really listening.
This excellent piece from Bionews written by Richard Clothier tells how he fought back against planned cuts to fertility treatment in his local area. It’s a great read – and you may be surprised by the outcome.
It uses data from the Human Fertilisation and Embryology Authority which keeps records of all cycles of treatment carried out in the UK, to aim to give a picture of your individual chances of having a baby after IVF/ICSI treatment,
The reporting of this has been analysed by NHS Choices which points out that there are some gaps in the data which the researchers themselves have acknowledged as it doesn’t account for the woman’s body mass index (BMI), whether she smokes and how much alcohol she drinks.
Despite these limitations, it is certainly a very useful tool and one which may help many couples get some kind of realistic idea of the chances of an IVF cycle working. Of course, the experience of each individual couple is always different and this doesn’t allow you to include any detailed medical data either, but it does give a broad picture view which may prove very helpful.
Whether you are at the point of considering IVF or have already had some treatment, you will be aware of the wide range of additional treatments which some fertility clinics offer on top of the standard treatment cycle. The idea is that these will improve your chances of success, and as people inevitably want to do all they can to boost the likelihood of a positive outcome, it can be very tempting to pay for at least some of these.
It is clear that they will certainly add to the cost of your treatment, but whether they will add any benefits in terms of outcomes is still very much up for debate. Few of these add-ons have a reliable base of scientific evidence to prove that they are likely to work, yet patients are often paying for them believing that without them there is a lower chance of a successful cycle.
Yacoub Khalaf who is Director of the Assisted Conception Unit a Guy’s and St Thomas’ in London, spoke on the subject at The Fertility Show at the weekend. If you missed it, you may be interested in his article on the Huffington Post about this.
The fertility regulator, the Human Fertilisation and Embryology Authority, has just published its report on the number of incidents in fertility clinics. These incidents can be all kinds of things going wrong in a clinic from a patient suffering from hyperstimulation to a letter sent to the wrong person by mistake.
Incidents in fertility clinics are rare – they occur in less than one percent of the treatments performed in the UK fertility clinics – but each incident is one too many.
The HFEA’s annual report on fertility clinic incidents shows that the total number of incidents increased slightly but for the first time since the HFEA began publishing incidents reports, there were no A grade (the most serious) incidents reported at all.
HFEA Chair Sally Cheshire called on fertility clinics to substantially reduce the rate of incidents next year. She said “The UK’s fertility sector is one of the most developed in the world, and the high level of professionalism in the sector is highlighted by both the fact that fewer than 600 incidents were reported out of more than 72,000 treatments, and that no ‘grade A’ incidents were reported in the last year. We want to ensure clinics give patients the best possible treatment, so that they have the best chances of having the families they so dearly want. So, while incidents are already occurring infrequently, we want to see them reduce even further. I’m setting the challenge to all clinics in the UK to make sure that the overall number of incidents has decreased by this time next year. It’s not only ‘grade A’ incidents that can have an adverse effect on patients. All incidents, whether it’s a letter sent to the wrong address, or a case of ovarian hyper-stimulation, can have serious consequences for patients, and more has got to be done to make sure that fewer people are affected in the future.”
What a sorry state of affairs in Bedfordshire where the CCG was recommended to continue funding one cycle of IVF treatment, but instead delayed making a decision until November. Anyone needing IVF in the region was only ever getting one of the three full cycles recommended as being clinically effective and cost effective by NICE, and their consultation on cutting all IVF had led to the recommendation to continue instead.
A spokeswoman for the Bedfordshire Clinical Commissioning Group told Bedfordshire on Sunday that the evidence base and associated research was “complex”. It is really not cost effective for the Clinical Commissioning Group to spend time trying to make sense of this when NICE has already looked into this in very great depth making use of the knowledge of some of the country’s leading experts in the field and also using skilled health economists to work out what would be most cost effective. Let’s hope that Bedfordshire CCG use this evidence when they make their decision in November, and rather than considering cutting the one cycle they currently offer, instead start funding what NICE recommends.