Choosing a fertility clinic

800px-Woman-typing-on-laptopThose of you who came to my talk at the Fertility Show will know that I promised to put up some notes from my talk on the blog this week – here they are at last!

The HFEA website

We begin with the HFEA website which is the best place to start. You can search for your local clinic using the Choose a Clinic tool – just type in your postcode or local region and you will get a shortlist of local clinics.

You can see more about the treatments they are licensed to carry out, services, facilities and staff. It will tell you whether they take NHS patients, the opening hours, whether there is a female doctor and links to a map.

Of course, the one thing you really want to know is how likely am I to get pregnant there? Which is the one thing no one can honestly tell you. The HFEA publishes success rates for all licensed clinics, but they may not be as clear cut as you imagine. Most clinics have broadly similar success rates and the majority of clinics in UK have success rates which are consistent with national average. Don’t forget, the patients treated affect the success rates.

You may want to look at the success rate for someone of your age, and make sure you are comparing like with like. The HFEA also gives the multiple birth rate, but a high rate doesn’t suggest a good clinic which has your best interests at heart. Naturally multiple births occur in 1 in 80 of all pregnancies, it’s around one in six after IVF. That may sound positive, but in fact multiple birth is the single biggest risk after fertility treatment. 1 in 12 multiple pregnancies ends in death or disability for one or more babies, and it is also more risky for mothers. Good clinics should not have very high twin rates. A really good clinic will have good success rates and low multiple rates.

When it comes to success rates, don’t get bogged down in fairly small percentage differences – in general they’re probably not that meaningful.

NHS Funding 

You will also want to know if you qualify for NHS funding. The guideline from NICE recommends 3 full cycles (fresh and transfer of any frozen embryos) for women of 39 and under and one full cycle for women of 40-42 who have had no previous treatment, who have a good ovarian reserve and who have spent 2 years trying)

In England funding comes from your local CCG (Clinical Commissioning Group) not your clinic so you need to find out their rules – and unfortunately they all make their own up as the NICE guideline is only a guideline. You can find out what your CCG is offering by visiting the Fertility Fairness website. The CCG will also set eligibility criteria – and each will have their own

Location 

Think about how close the clinic is to your home or workplace. Be realistic as a long journey is fine as a one-off, but think about doing it three or four times a week. Ask the clinic how often you will have to visit as some will want you in every day of the cycle, but others just a few times a week.

Think about how you will get there and how long the journey will take? Are you going to use public transport or drive? Will you be travelling in the rush hour? Can the clinic offer early morning appointments or will you need to take time off work? Will it fit around your job?

Cost 

Fertility treatment prices are not regulated and can vary hugely. Clinics that charge more are not necessarily better so do look into prices. The headline figure on clinic websites is rarely the total cost of treatment  – ask instead what the average person actually pays

The HFEA does require clinics to offer you a personalised costed treatment plan, but check what is included – drugs, counselling, scans and bloods, freezing and storing spare embryos, follow-up consultations etc.

Unproven treatments 

Many clinics offer unproven additional treatments. Many are not scientifically proven. The HFEA has advice on some of these . Additional treatments can be very expensive, and you may risk paying a lot for something that may not make a difference – and may even bring additional risks.

Support

Will there be someone you can call with any problems/concerns? You should be given a contact to call if you are concerned about anything at any time. And is counselling included in the cost of treatment? You may think you don’t want or need it, you may may find it helpful once you have started treatment. So check if you are going to have to pay for counselling, and if it is included, ask how many sessions.

Is there a counsellor based at the clinic? Some counsellors also offer telephone counselling and you can find a list of fertility counsellors on the British Infertility Counselling Association website. Is there a patient support group?

Waiting 

How soon could you get an appointment and when could you start treatment if it is recommended ? How long are waiting times for donor eggs or sperm? At some clinics,
there are still waiting lists for donor eggs and sperm but others have plenty of donors, so do check.k

Do you like the clinic?

I think this is far more important than you might initially think.

Talk to anyone else you know who has been there, look online for views – but remember that everyone is different. Go to any open days or meetings for prospective patients and think if the clinic feels right for you. It may sound ridiculous, but it matters.

Trust your instincts, and don’t hink they don’t matter. Make sure that you have chosen a clinic that you will be happy with.

Treatment isn’t always easy, but it is certainly much easier if you are being looked after by people you like and trust.

Are patients getting the fertility service they deserve?

What a fascinating afternoon at the Progress Educational Trust annual conference, where a range of speakers addressed the commercialisation of the fertility industry and asked whether what happens is always in the best interest of patients.

The afternoon started with the Chief Executive of the HFEA, Peter Thompson, who tackled the cost of fertility treatment in his talk. He explained that the HFEA doesn’t have any power to regulate what clinics charge for IVF, but that their research had found that most people (and that included those working in clinics as well as patients) felt that the authority should publish the average cost of treatment at different clinics.

The next speaker was Professor Willem Ombelet who gave a fascinating talk about the Walking Egg Project which offers affordable IVF for developing countries – and possibly others too. He explained how the focus on overpopulation in many developing countries means that infertility gets overlooked, but the consequences of not being able to have children are often grave for individuals who are isolated from their societies.

He was followed by John Parsons, now retired but formerly Director of the Assisted Conception Unit at King’s College Hospital. He said that he could be frank now that he had retired, and went on to discuss the fact that the fertility industry did not have a good reputation and was often regarded as an area focused on money-making. He spoke about the many different procedures used in IVF over the years, and looked at those which were still being used today without any clear evidence that they actually work.

Dr Yacoub Khalaf, Medical Director at Guy’s Assisted Conception Unit, gave an impassioned talk about hype and hope and about the array of unproven techniques used in some fertility clinics. He explained that misinformation was one of the most difficult things for patients today, and looked at some of the questionable marketing techniques used to sell fertility treatments and other therapies. He also discussed the fact that even within the NHS there was no clarity on how much IVF should be costing, with some CCGs paying twice as much as others.

There was an interesting discussion following the session, with lots of questions from the floor. Inevitably one of the issues raised was that familiar old chestnut about patient demand, and the suggestion that clinics had to offer unproven treatments to patients because if they didn’t, the patients would vote with their feet and go to the clinics which did. Dr Khalaf answered this very well, saying that if specialists were honest and explained why they didn’t offer certain things, patients would respect that – which is absolutely true.

The final session was titled The Real Cost of Infertility, and the speaker was Professor Robert Winston, who began by talking about the impact of infertility, explaining that it haunted people’s lives on a daily basis in a way that few other illnesses do. He said he felt that all too often people were not given a proper diagnosis, but were pushed towards IVF. He talked about the huge inequalities in the cost of IVF, and about the large sums some patients are paying for each cycle. He said the HFEA should be providing better information for patients, and questioned whether we need regulation for the fertility sector.

It was a thought-provoking afternoon, and I hope that having so many of these issues out in the open will help to encourage more discussion. It’s a tough time to be a fertility patient; there’s so much information from so many sources and so much of it is contradictory. Knowing what to believe and who to trust can be difficult, but it’s important that patient demand based on misinformation isn’t used as an excuse for offering more unproven treatments.