Have you reviewed your fertility clinic?

If you’ve had fertility treatment recently or are currently having treatment at a UK clinic, did you know that you can give a review of your clinic’s services on the HFEA website? Your reviews are used to create a patient rating for the clinic which other people can then see on the website along with the outcomes from treatment there and a ranking from the HFEA inspectors.

It’s good to do this if you have a spare moment – and it really won’t take long – as it helps to build up a picture of the clinic for others who may be considering having treatment there.  You will be asked a series of questions about the clinic such as

  • How likely are you to recommend this clinic to friends and family if they needed similar care or treatment?
  • To what extent did you feel you understood everything that was happening throughout your treatment?
  • To what extent did you feel you were treated with privacy and dignity?
  • What was the level of empathy and understanding shown towards you by the clinic team?

You will also be asked about cost for those who had to pay for treatment and you will be able to say whether it was more, less or about the same as you’d been anticipating. Finally, you are able to add any further comments about your experiences which will be seen by the regulator but will not appear on the website.

Choosing a fertility clinic is not easy, particularly if you live in London and the South East where there are so many clinics to choose from, and the views of other people who’ve been to a clinic can be useful.

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.

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/

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…

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.

What Fertility Network UK is all about…

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I’ve just been reading a few comments about Infertility Network UK’s new brand and logo, and it seems that some people have misunderstood what the new brand is about. Fertility Network isn’t going to be focusing on people who are pregnant or who are having babies – it’s still a charity for those who are having difficulty conceiving.

The word “infertility” is a negative one – and you may have noticed that it is very rarely used in fertility clinics any more. Most people who visit clinics aren’t technically “infertile” anyway but are experiencing fertility problems. Changing the name of the charity isn’t about forgetting people who are having trouble conceiving or about offering support instead to people who can conceive easily, it’s about being more positive and upbeat in the way the issue is dealt with.

It’s always difficult when things change – but I really think this is a positive step forward. I remember reading articles in the past which talked about people with fertility problems as “infertiles” or “barren”. Personally, I welcome the fact that Fertility Network UK is moving away from negative labelling, although it is a great shame if some people haven’t appreciated what the rebrand is about and feel that they are being excluded in some way – it’s really not the case at all.

Why everyone working in a clinic needs a theatre trip…

The Quiet HouseSo it seems that three London fertility clinics have decided they’re going to take all their staff to London’s Park Theatre to see Gareth Farr’s brilliant new play The Quiet House. It might seem surprising – surely clinic staff know all they need to about IVF? – and yet what’s so great about the play is that it shows the side of IVF they don’t usually see.

The Quiet House is not about what goes on inside the clinic but about what happens at home during an IVF cycle. It’s about dealing with friends with babies, about balancing the demands of work, about doing the daily injections and managing the huge emotional highs and lows of a treatment cycle.

You don’t need a personal interest in fertility treatment or any professional knowledge to appreciate The Quiet House, but for those who work in clinics it is clear that this can be a beneficial learning experience as well as a deeply moving one.

Using an online sperm donor

DownloadedFile-17If you’ve ever thought about using an online sperm donor, this article may put you off…  It’s about a sperm donor called Simon Watson who advertises his services on Facebook and claims to have “about 800” genetic children, and says he wants to reach 1,000.

In the UK, donors who donate officially through clinics are limited to 10 families. Donors go through a fairly lengthy process which often involves counselling as well as screening for genetic diseases and sexually-transmitted infections. Their sperm is frozen for six months and the donor is re-tested before it is used to ensure that it is clear from potential infection. Any children conceived will be able to trace their donor once they reach the age of 18.

Of course, using an online donor like Simon Watson is cheaper but that’s hardly surprising as you aren’t getting the careful screening and checking process that happens in a licensed clinic. He apparently charges £50 for samples after meeting his customers at motorway service stations.

If you’re only thinking of using an unlicensed online donor because a clinic is expensive, I’d think again and perhaps try to cut back elsewhere. Is the choice of genetic parent of your future child really a place you want to be taking risks by saving money?

Report on incidents in fertility clinics

images-6If you’re having treatment at a fertility clinic, you may be interested in a new report from the Human Fertilisation and Embryology Authority which looks at the number of incidents or mistakes that happen in the UK’s fertility clinics. It may sound alarming, but sometimes things don’t go exactly to plan and encouraging clinics to report to the HFEA when this happens can help them to prevent problems occurring in the future and to share experiences so that others can learn from what has happened too.

The new report shows that the number of incidents at fertility clinics is going down, and that they occur in less than one percent of treatment cycles.  However, that does mean a total of 465 occasions when something went wrong, and it can be distressing if this happens to you. Only two of these were in the most serious grade A category, and the largest group were in category C, the lowest grade, which might sometimes mean an administrative error, for example a patient being sent a letter meant for someone else.

The HFEA Chair Sally Cheshire urged clinics to use the practical help available from the HFEA to that we can offer to do more to improve patient care: “Whilst every incident that takes place is one too many, I particularly want clinics to concentrate on reducing their grade B and C incidents. Such mistakes are often distressing to patients, largely avoidable and frankly shouldn’t happen. The small reduction in incidents is a step in the right direction but more can and must be done by clinics, and we can help. Since our last report, we have worked with clinics to improve their systems and practices. For example, where clinics are struggling to recognise what changes need to be made to avoid future incidents, our clinical governance team offers bespoke incident training to individual centres. It is for clinics now to step up and make the necessary changes so that everyone affected by assisted reproduction receives the best possible care. I want to see these improvements realised by the time of our next annual report.”

You can download the report itself here 

Clinic Open Evenings

For anyone wondering where best to go for fertility treatment, perhaps the most important piece of advice is to go and have a look at some of your options before making a decision. All too often, people assume that they should look at success rates as the only indicator when it comes to choosing a clinic, but actually liking the place and feeling comfortable there is very important too.

More and more clinics now operate regular open days or open evenings and they’re often very popular, so you may need to book in advance. Going to visit a clinic and talking to the staff is by fat the best way to work out whether you’d like to have treatment there – and it can also be an excellent opportunity to have a chat with someone about your individual situation and why the clinic might be right for you.

Looking at success rates is useful, and talking to other people can help too – but remember that this is about you and what suits you. Do ring around clinics you’re interested in and see if you can go along and visit as you may find it really pays off.