Left confused about intralipids?

lipidemulsionIf you watched Panorama yesterday and were left worried or confused about intralipids, there are sources of accurate and sensible information.

Looking at some of the comments from fertility patients after the programme, it seems that many people were actually surprisingly unconcerned by the lack of evidence for many of the treatments discussed because they felt if there was any chance at all of something making a difference, they would still be happy to try it.

What the programme didn’t make clear was that there are some potential health risks from using intralipids. These are clearly explained on the current HFEA website which has excellent information on reproductive immunology and covers intralipids. There is also a basic information sheet on add-ons from the British Fertility Society.

Free fertility support

Cmhc-LqWYAAWk88In recent years, there has been a huge increase in the numbers of people offering fertility support services – often at premium prices from people who have no relevant qualifications and limited knowledge or expertise. What many people don’t realise is that the national charity, Fertility Network UK, provides an amazing range of support services which are all completely free.

The Fertility Network Support Line, run by a former fertility nurse, Diane, offers a unique fertility support service. Diane has a wealth of experience and has worked for the charity for more than 20 years, She can help not only with minor medical questions but provide you with the help you need based on her years of experience, and all calls to her are in complete confidence.

The Support Line has often been described as a ‘lifeline’ by those dealing with fertility issues. It is very normal to feel isolated, out of control, lonely or depressed when dealing with infertility, and Diane is there to help. No question is too trivial to ask and even if you just want to talk you can give her a call on 0121 323 5025 between 10am – 4pm on Monday, Wednesday and Friday, or email her at support@fertilitynetworkuk.org.

Of course, that’s not all the charity has to offer. You can find a wide range of support groups right across the UK, an online community, a Facebook page and masses of information. Do check it out now at fertilitynetwork.org and save the money you were about to spend – or perhaps consider donating it!

Will my IVF work?

ivf_science-300x168You may have heard about the new predictor tool for IVF/ICSI which has been developed recently which is available through the University of Aberdeen website.

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.

Online advice session for people considering adoption

Cmhc-LqWYAAWk88Fertility Network UK organise regular online chats via Skype about specific topics, and the next one on Monday 28th November at 7pm will consider adoption. The guest speaker is Pippa Bow, Lead Social Work Adviser at First 4 Adoption. Pippa’s talk will focus on the adoption process – the main criteria to become an adopter, what adoption agencies look for in prospective parents, the children who need families and their age range, timescales and the process for being approved as an adopter. Pippa’s talk will last for about half an hour followed by a question and answer session afterwards.

First4Adoption is the national information service for anyone interested in adopting a child in England. Even if you are not planning to opt for adoption, many couples have the thought in the back of their minds. This talk is your chance to find out more and to pick the brains of an adoption expert. If you would like to join the session, you just need to let Hannah know – hannah@fertilitynetworkuk.org

“Tea-cember” for fertility support

800px-fairy_cakes_close_up_on_trayThose in the Jewish community who are experiencing fertility problems will almost certainly have come across Chana, an amazing charity offering help and support to Jewish couples with fertility problems.

They run a helpline and counselling service, organise information events and provide medical information – and now they are organising their fifth fund-raising “Tea-cember” event, where people can raise funds for the charity by organising tea parties – there’s an article about the event here and there is a lot more details about how to get involved on the Chana website.

It’s a great way to get together with friends, and also raise money to support a fabulous charity which provides a very special service to help people who are experiencing problems getting pregnant. Late year apparently more than 2,500 people took part in more than a hundred events – so why not join them this year?

Interview with Julia Leigh, author of AVALANCHE

7432976-1x1-700x700We spoke to Julia Leigh, author of Avalanche, at the start of our National Fertility Awareness Week and began by asking her what she thought of the idea.

It’s a wonderful idea which I hope will focus more attention on under-reported fertility issues. Also, it’s a special way to bring together those whose lives have been touched by infertility.

Do you think we are too reluctant to speak openly about fertility issues?
There’s no reluctance on the part of the multi-billion dollar worldwide fertility industry to promote this area of medicine. For example, this month [October] the American Society for Reproductive Medicine Scientific Congress & Expo took place in Salt Lake City, Utah. Exhibitors represented at the Expo included a fertility clinic network; a myriad of ‘bio tech’, ‘health technology’, ’genetic screening’ and ’diagnostic solutions’ laboratories; biopharmaceutical manufacturers; food and vitamin supplement manufacturers; pharmacists; surrogacy and donor organisations; laboratory equipment suppliers; attorneys; insurers; cryobankers and cryoshippers; marketing and brand strategists; a big data analyst; specialist software providers; and a joint venture partner who promised to turn growing medical practices into successful businesses. There’s also no reluctance on the part of the media to report successful ‘miracle’ births. There is a reluctance, however, to talk openly about the plain fact that most treatment cycles fail. To give some perspective, about 80% of treatment cycles fail. There’s also a disturbing reluctance to talk openly about the physical and emotional harms of treatment. It’s almost as if patients and doctors and others in the fertility world are so bewitched by the beautiful possibility of a ‘live birth’ that they turn a blind eye to the real harms.

Your book Avalanche about your own story is intensely personal – was it difficult to be so open in public?
At the time of writing I felt that I’d already lost so much I didn’t care about losing face – and that afforded me an enormous freedom. My heart goes out to anyone who is doing treatment now.

What made you want to write the book?
I wrote an Author’s Note for my publishers and I think it gives the best idea of why I wanted to write the book. Here it is:
A writer contemplating whether or not to begin a new work asks herself – Is this truly a story worth telling? Avalanche felt necessary. I’ve tried to tell an intensely personal story about a common experience that has largely remained unspoken. I wanted to offer a ‘shared aloneness’ to anyone who has desperately longed for a child. I hope I’ve brought into the light the way the IVF industry really works – and I could only do that in non-fiction. I wanted to transmit what it feels like to be on the so-called ‘emotional roller-coaster’, to deeply honour that complex experience in all its detail. Ways of loving, the mysteries of the body, the vagaries of science, the ethics of medicine – the material raised so many questions. I started writing it very soon after I made the decision to stop treatment because I wanted to capture my strong feelings before they were blanketed by time. I wanted to write something for all the women who are contemplating IVF, or currently undergoing it, or who have stopped or who are thinking about stopping (it’s so hard – the decision to ‘give up’). I wanted to speak to their family and friends. I wanted to speak to young women who in a misguided way might be relying on fertility treatment as a kind of back-up. And I wanted to speak to the policy-makers too. Since there is so much IVF failure I wanted to provide an alternative voice to the miracle stories we frequently see in the media. I wanted to counter the push – yes, the push – of the worldwide multi-billion dollar IVF industry.

Do you think people need more emotional support when they are going through treatment?
It’s difficult to discuss treatment with family and friends but in so doing a patient can lighten the emotional burden. There’s also the counselling option. In my case, the clinic offered free in-house counselling as part of the very expensive treatment package…but I would advise seeking an outside independent therapist. I say this because the decision to stop treatment, to give up, that incredibly painful decision, sits uncomfortably with the fact that clinics are making money from their patients. In my case, when I was 44, using my own eggs, and I’d already done 2 IUI’s and 6 egg collections plus subsequent transfers, my doctor suggested I try once more. It was my sister who had the courage to tell me firmly that I needed to stop. I feel an independent therapist would be well-placed to basically warn patients of the emotional pitfalls that can lay ahead. Is there such a thing as pro-active counselling? Identifying the traps for new players and advising how best to respond to them…identifying the tricks of the mind that don’t serve patients well…I think a therapist who was familiar with the IVF world, who had experience in this area, would be best.

And do you think there is adequate support when treatment doesn¹t work?
There was little to no follow-up from my clinic after I decided to stop treatment. I can’t recall exactly – there may have been one phone call. I saw an independent therapist.

Here in the UK, the individual success rates for individual clinics are collated and published by the fertility regulator, the HFEA, and are broken down by age too. Do you think access to information like this would have made a difference to you?
Yes I would have loved to see results for my individual clinic. That would have helped. But I also want to note that I did see the graphs on my clinic website which used our ANZARD data and clearly showed how fertility dropped away with age. (The ANZARD report collates data from all clinics in Australia and New Zealand but doesn’t identify individual clinics). And when I was 40 my first doctor at the clinic said I had about a 20% chance of ‘taking home a baby’. BUT as it happened, at age 43, when I was transferring a thawed 5 day blastocyst, using my own egg, I asked my new doctor what my odds were of being pregnant (please note, pregnancy not live birth). Even though I’d seen the fertility graphs I figured my chances would somehow be better than the average because unlike some patients my age I was both responding to drugs and producing blastocyts: “Pollyanna Juggernaut could do amazing things with the numbers.” In reply to my question about odds, the doctor said “A Day 5 blastocyst has about a 40% chance.” I took that to mean I had a 40% chance of being pregnant – but later I discovered the 40% figure was for women of all ages. I hope that illustrates how statistics can be malleable…

What changes do you think we could make to try to ensure that fewer women suffer the kind of anguish you went through?
That’s a good question and I don’t have any easy answers. I wonder if there couldn’t be a buffer between women – especially older women – who are prepared to do almost anything to have a child and the clinics who are prepared to put patients through almost anything even though there is no guarantee of a successful outcome, far from it. In Australia a well-respected doctor put a patient through 37 cycles. 37! He had no qualms about that since she did end up with a child. But what if she hadn’t? I’m not sure what happens in the UK but in my case it was my General Practitioner who referred me to the fertility clinic. My GP never asked how my treatment was going. I wonder if GP’s could step in as a buffer, walk patients through the facts and figures, help decide whether or not to do an experimental protocol advocated by the clinic that will cause physical harm but has limited evidence of benefit, to basically serve as a ‘reality check’. There’s a great deal clinics can do to change…For example, during an embryo transfer my doctor pointed to an image of the blastocyst on the ultrasound screen and said ‘That’s the baby’. At the time, I thought it generous and I was touched that the doctor might be the only person in the world who would ever refer to ‘my baby’ but in retrospect the comment – that’s the baby – only heightened my intense desire for a child.

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.

The Fertility Show goes to Manchester

the-fertility-show-london-logoIf you missed the Fertility Show in London at the weekend, you may be interested to know that there will be a second Fertility Show in Manchester for the first time this year. There will be the same wide range of seminars and exhibitors with lots of information and advice.

The Manchester Fertility Show will take place on March 25 and 26 in the Exchange Hall at the Manchester Central Convention Complex in Windmill St in Manchester. Tickets will go on sale in January 2017 and you can find out more on the Fertility Show website.

Finally, for those of you who came to my talk in London and are looking for the notes on my talk, I am hoping to put them up on the blog later this week so you will be able to find out all you need to know about choosing a fertility clinic!

Should you pay for add-ons when having IVF?

proline_level_measurement_in_eurasian_national_universityWhether 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.

Facts and headlines

120px-Sperm-eggSo another day, another “helpful” IVF headline. Today the Daily Mail tells us about the “£100 ‘condom’ that is £4,900 cheaper than IVF but just as effective”…

The only evidence to back up this suggestion are some figures which are apparently due to be released at the weekend claiming that 150  people have got pregnant who have used the device.

We learnt earlier this week that new figures from the Human Fertilisation and Embryology Authority show the number of babies born after IVF treatment now stands at more than a quarter of a million. I am not quite sure how 150 pregnancies leads the Daily Mail to conclude that this device is equally effective to the 250,000 babies from IVF…

I won’t say any more but if you are thinking of spending £100 on this device, please discuss it with a fertility specialist first.