It is not easy living with fertility problems, but recent cuts to NHS-funded treatment services are making things even tougher for those who need IVF or ICSI. The past year has seen services reduced in many parts of England, with some areas no longer offering any NHS-funded fertility treatment. Campaign group Fertility Fairness, which works to improve access to NHS treatment, has branded the current provision a ‘national disgrace’ after it carried out an audit which found that just 2%of areas are now offering the recommended levels of treatment.
Decisions about whether to provide IVF are made on a local basis despite national guidance from NICE (the National Institute for Health and Care Excellence) on what should be offered. The NICE guidance is very clear; eligible women of 39 and under should receive three full cycles of IVF or ICSI. A “full” cycle means a fresh cycle with ovarian stimulation and then the transfer of any frozen embryos created too. For women of 40 to 42 who have been trying to get pregnant for at least two years, who haven’t had any previous treatment and who have a good ovarian reserve (which means their ovaries have a good capacity to produce eggs), NICE recommends one full cycle of treatment.
In England, decisions about whether to fund treatment are made by local Clinical Commissioning Groups, or CCGs. Although the national guidance is based on what is both clinically effective and cost effective, the local CCGs are able to choose whether or not to follow it. The majority don’t, with just four out of 209 CCGs in England currently funding what NICE recommends.
Many fund just one cycle, and others don’t include full cycles. CCGs are also setting their own criteria about who is eligible for treatment which restricts access further. In Scotland, Wales and Northern Ireland, the decisions about what to provide are made nationally but each nation funds differently and none are currently completely compliant with NICE guidance.
If you are in England, Essex is one of the worst places to live for anyone who needs IVF, with three areas providing no NHS fertility treatment at all, and South Norfolk has also decided to cut all services. Susan Seenan, who is Co-Chair of the campaign group Fertility Fairness, says the situation has become increasingly bleak; “Our audit shows that 98% of CCGs in England do not follow national guidance on access to NHS fertility treatment. This is cruel and unethical, and a national disgrace for the country that pioneered IVF. There can be no justification for ignoring NICE guidance. Infertility is a disease, and women and men who cannot become parents without medical help are as deserving of healthcare as people with other medical conditions.”
So, is there anything you can do if you discover what fertility services in your area are under threat? There is usually some kind of public consultation before services are cut or reduced, and there may be open public meetings too. If you don’t feel comfortable about going along to a meeting, responding to any online surveys or consultations and giving comments is worthwhile. It can sometimes feel as if these consultations are a rubber-stamping exercise, but this isn’t always the case. When a proposal was put forward to cut the single cycle provided in Bedfordshire, commissioners decided to continue to fund after the consultation as Dr Alvin Low, Clinical Chair of the local CCG explained when the decision was announced: “At Bedfordshire CCG we always put the voice of clinicians and patients at the heart of what we do. We have used the consultation period to ensure that we heard views from the public, patients, clinical staff and support organisations and those views have genuinely informed our decision making.”
As well as contacting the CCG, you can also email or write to your local Member of Parliament. If you aren’t sure who your local MP is, you can find their name and contact details by putting your postcode into the UK Parliament website (www.parliament.uk). There are also template letters you can use to write to your MP on the Fertility Fairness website fertilityfairness.co.uk. These are a good basis for your own letter, but personalising it as much as you can is helpful.
If your MP understands the impact that cuts or proposed cuts to NHS fertility treatment would have the lives of their constituents, they will be more likely to get involved in raising awareness of the issue in Parliament.
In the meantime, what are your options for treatment if you discover you do not meet the local criteria or your CCG does not offer IVF? You can launch an appeal, but you are only likely to win if you can demonstrate that you have an exceptional reason why you need to be offered treatment when most other people in your situation would not. Although people do win appeals, it is not easy to convince a CCG that your case is exceptional.
Eventually, paying for treatment may be the only option and it is expensive. Many NHS fertility clinics offer self-funded treatment and this can be less costly than a fully private service. At Guy’s and St Thomas’ Hospital in London, they have found self-funding is popular with patients, as Yacoub Kahalaf, Director of the Assisted Conception Unit, explains; “I think self-funding at an NHS unit is a very good idea for patients. If they have used up all of their NHS funding, or if they have had no access to NHS funding at all, they can still benefit from what the NHS offers and can get the best possible care at an affordable price.”
The other element of IVF or ICSI treatment which can add to costs is the medication, as the drugs you will need to take during an IVF cycle are not cheap. Most clinics can provide them for you and this may be a reasonable option, but supermarket pharmacies can offer value too. You may find considerable variations in price from different providers, so shopping around may help to reduce the overall cost of treatment. If you want to use an online pharmacy, check that they are registered with the General Pharmaceutical Council (GPhC) – most say this in the small print on their websites.
Treatment costs can also be kept down by thinking carefully about what you pay for. More and more fertility clinics are offering a wide range of additional treatments and although some include them as part of the cost of a cycle, patients are often given the option of paying for them on top of their standard treatment.
If you are presented with a long price list of add-ons, it can be hard to work out what, if anything, is worth paying for. Do ask why you are being offered extras, whether there are any side effects or risks, what the benefits might be and whether there is scientific evidence to back this up. There is no real proof that the many of these add-ons increase the likelihood of a successful treatment outcome, but they certainly can add to the already considerable cost of treatment.
There are now some fertility finance schemes where you pay a lump sum which is refunded if you don’t get pregnant. These involve paying more than one cycle would usually cost privately, but if you don’t get pregnant after the third cycle, they give you your money back. The drawback with these schemes is that you pay more than you might have done otherwise if you get pregnant on the first cycle, and they are only open to those who are most likely to be successful, so although they sound promising not everyone will be eligible.
For younger women, egg sharing can reduce the cost of treatment but this is not something to be undertaken lightly as it involves donating some of your eggs to another patient. Being an egg donor is a huge consideration in itself, and you would want to think carefully about the implications and spend time talking it through with a counsellor before coming to any decision.
In the past, travelling elsewhere in Europe for treatment was often a cheaper way of accessing IVF. When you factor in travel and accommodation costs as well as recent changes in the exchange rate, this may not work out to be such a saving in the current climate. It is also vital to do your homework if you are considering treatment overseas and to remember that different countries have different rules and regulations about assisted conception.
It is 38 years since the first ever IVF baby, Louise Brown, was born here in the UK, and at that time the future had never seemed so rosy for couples with fertility problems. Sadly, now that access to treatment depends on where you live or how much money you have, that rosy future has not become a reality for everyone.