Here we discuss what people told us about how their care was funded and how they went about choosing a clinic. We spoke to people who had only had NHS care, some who had only private treatment and others who had used a mixture of private and NHS care.
Eligibility for NHS funding in England has, in recent years, been determined by the local clinical commissioning group (CCG), previously known as the local Primary Care Trust (PCT). NHS funding in Scotland, Wales and Northern Ireland is set by central government. NHS funding can cover the costs of IVF or ICSI, but eligibility (including age limits) and the number of cycles that the NHS will fund varies across the UK. NHS treatment should follow the NICE guidance, but this is not always the case as the guidance is not mandatory published in 2004 (for more information see Human Fertilisation Embryology Authority website). Due to NHS funding cuts in recent years some CCG’s are choosing not to follow NICE guidance and not to fund any cycles of IVF or ICSI and people are increasingly paying for their own treatment through private clinics.
The Human Fertilisation Embryology Authority (HFEA) licenses private clinics to practice in the UK, but does not regulate the cost of treatment set by private fertility clinics. Prices vary from clinic to clinic and the final cost will depend on a number of factors. The HFEA states:
“…the same treatment could be two or even three times more expensive depending on which clinic you choose. We strongly recommend you shop around before committing to a clinic and consider a wide range of factors when making your final decision.” (taken from HFEA website July 2017)
Fiona and her husband felt that they could have saved up money for expensive treatment but decided that they would not, given the odds of treatment being successful for them. “I think we were quite sensible about thinking well we are not going to spend thousands and thousands of pounds on something that is actually pretty horrible to go through”.
Liz and her husband couldn’t afford private treatment and one clinic refused to treat her because she was over-weight. They had a long battle with their then local Primary Care Trust to get ICSI treatment (Intra-cytoplasmic sperm injection).
Liz is a midwife. She is divorced and has one son. Ethnic background' White British.
Did anyone mention your weight to you before?
The initial referring consultant said, he didn’t say to me that, he just said to me, “As you are a bit over weight it is a little bit less likely that any treatment we will do, will be successful. But it wouldn’t stop you having any treatment.” You see. And it did.
So and I knew I must have been, I have been overweight all my life, so I knew that it wasn’t anything, it wasn't a new story, I knew that if they asked me to lose weight. I knew it was going to be a long time before I would be able to, you know, I had lost weight once before and it took over a year to do that. So therefore, again it was all about delays and all about can’t start it. And I think the fact that I couldn’t. If they had said to me, “We are not going to let you do it now, but we will let you do it in two months.” That would have been all right. But what they said was, “No. We won’t accept you.” And at that point I thought that was the only route to get to it.
So I thought that was the only route but it wasn’t the only route but at the time the door was just being slammed in my face and that was terrible. Because I then thought I had a year to lose weight, you know, and all this time was creeping on. I am getting on for 30 odd and you do feel that clock is really ticking. We are back to numbers again but that is true, the clock felt that it was really ticking.
And so you then went to see another clinic?
And had IVF? Open cycle with them. Which resulted in…
Which resulted, one was it was sort of two really because one was a no starter because of no eggs. And the second one that didn’t fertilise. So that was sort of like two goes, but one was a non starter and the second one was… and then because it was a fairly local clinic, I thought, at that point, when it failed, I thought I wasn’t getting the right treatment. So you are looking elsewhere then. For the best treatment. You want the best, you want the best, you know. And then it was the process by which we could get the best because we didn’t have any money. So they would, you know, they paid bet sort of thing, you know. That is why we went to the third place really.
Did it feel like a real struggle?
Absolutely. Agony. It was awful. He was ringing at work all the time. He was ringing daily and this was like, this was a bit of a vendetta mission-type thing, you know. It was the fact that we were entitled to it, we were entitled to another go of IVF definitely because the first one of the two, at the local clinic didn’t count. So we had that agreed. And we were thinking of strategies all the time. You know, thinking what can we say to them. And what we actually said in the end was, what he said to them was, “Look if,” you know, at the point they were thinking of funding more than two and all this. “Is it not in your interest to give us the more expensive treatment in a good place and we won’t come back to you for another IVF. Because if we have another IVF it is probably going to fail.” That is where we were at. They were thinking of all these ideas trying to… but he was, it was a, we go like power from nowhere in our minds. We were just on it all the time. Because we felt like it was a right. And it was a right that we should be allowed to have the opportunity to try and be parents, you know. It really was. You felt a bit political about it. And I am not really political at all really either. But you did feel that that was an inherent human right, to be allowed to do what is the right treatment for you. Because they said to us, “There is every likelihood of these place where the two failed. Your likelihood is ICSI is your best bet. We don’t do it.” You know, so where do we get it done and they agreed that probably we needed more specialist treatment then they were able to give. So therefore everything pointed to this place, but to get to it was agony because it was not really within the catchment area, it wasn’t within their defined tertiary referral. There was all that about it, and then they had to have a special board to talk about us. And that in itself, you didn’t need it, we didn’t need it. All we wanted them to say was, yes that is fine. But we had to give evidence, we didn’t go and give it, we had to write a letter to say why we wanted it, and why we thought ICSI was the best and ever such hard work, ever such hard work.
So it was agony of months and months and months of agony. Trying to get, and again the months of waiting were waiting and time was ticking again.
Some couples had tried to maximise their chances of success by having treatment both on the NHS and privately. Marine had a good experience of this in London, but elsewhere in the country people struggled to obtain NHS treatment if they had already funded treatment themselves. James thought they would try private treatment during the six months they had to wait to qualify for their NHS treatment; they were delighted to be successful and it was only afterwards that, ‘It dawned on them’ that they could have lost their opportunity for NHS funded treatment (see Infertility Network UK).
Martin is a franchise recruitment manager and lives with his wife, Naomi (Interview 28). Ethnic background' White British.
So again back up on the horse really and we just wanted to get on with it. We were desperate, absolutely desperate to have our family, so we got back up on the horse, and [wife] went to the doctor and the doctor said yes, you comply with all the guidelines laid down by NICE for NHS funding, but when he actually went to put us forward they realised that our local PCT had introduced some additional guidelines that rendered us ineligible.
The one that really I think got was the fact that we had privately funded treatment historically, retrospectively they had brought a guideline in and they penalised people for something they’d done retrospectively. I just can’t understand how you can exclude somebody for something because of something they did before you set the rules, before you laid those rules down. And it turned out if we had spent the money on gambling or a holiday or a car or something, if we’d been frivolous with the money and said, “Okay the NHS will help us when we’re ready” they’d have funded us. But because we had tried to take to take the burden off the NHS by funding ourselves they then penalised us for it. And I think, today struggle with that, how they can see that’s fair?
In some clinics it is possible to get help with the costs of private treatment by taking part in an egg-sharing scheme. We spoke to one couple who had tried this, who unfortunately had a negative experience.
Phil is a nurse, and lives with his wife, Karen (Interview 32) and her four children. Ethnic background' White British.
While it all happened, it did cause a hell of a lot of stress. More so on Karen’s part because I saw it as a money saving exercise rather than her well being, but she was happy to do that at the time as well. But as we got into it we felt we were… lied to, the truth wasn’t told, Karen they had said she would be on the drugs for four weeks. She landed up with about six or seven weeks on the drugs. The lady, oh we’ve got a lady, then it sounded like they didn’t have a lady. There was conflicting information coming every time. And obviously, you know, they say one thing and your mind just goes off at a tangent. Thinking well is it true? Are they saying what they say they’re saying? They’re a private business. They are in it for the money. Get you in. Get you out. Next in.
And, the sum total of it was it caused a hell of a lot of stress. The egg was put back. But while the egg was put back, it wasn’t inserted – well it was inserted but the egg appeared to be sitting outside of the syringe so they had to have another go. So whether that was part of it, or because of the stress that was going on and her body not coping, it was a failure in the end. So she didn’t have a positive pregnancy.
At the time, after all of this had kicked off, and we are absolutely sorry to the people who we let down in the end, because of it. Because obviously they’d been waiting a long time to get eggs from, healthy eggs from somebody and we eventually withdrew consent.
So it was awful on both sides. But because of the stress that it had caused, Karen was not happy. I wasn’t happy as the time went on. I was all for it in the beginning. There was, you know, we’d agreed to help somebody else, and as reality started setting it, it’s then when it actually struck us.
So, the whole experience was awful. Plus the amount of time Karen was on the drugs. She got very bad tempered with me. Everything was my problem, not her own, and that was just the hormones and everything kicking in. So I tried to take some of it on, but at the same time it did cause us to fight with each other, and any way, as time went on.
So we stopped. We had to wait for her to come off the drugs, get it through her system, and then we thought right forget it, we are going to go somewhere else.
Saskia and her lesbian partner were looking for a clinic to give them treatment with a sperm donor. Her GP advised her that although some Trusts funded treatment for lesbian couples on the NHS her local one didn’t. NICE guidance (2013) published since these interviews were collected states that same sex couples should be offered NHS fertility treatment.
Saskia is a teacher. She is in a civil partnership with her lesbian partner, and they have two daughters. Ethnic background' White British.
And once you, firstly how did you find the clinic. How did you decide where to go?
Oh I’m trying to think. I think we, I sent for a few brochures from different clinics and looked on line and somebody had some good things about [hospital]. Well I think it had good statistics. I think I’d look at live birth rate, I mean something very raw. I thought that’s great, and it’s our nearest. And was kind of so delighted that our nearest one seemed good, I just sort of plumped for it. I didn’t do a lot of proper research.
I think, had the first consultation not gone well I think I would have thought hang on, I’m going to shop around a bit. But at that point I didn’t know anyone else who’d done it, so the internet was the only sort of source. And I think I’d read a couple of positive things about it.
So would you have been able to get NHS treatment, IVF treatment? As a lesbian couple, did you investigate that?
I asked the consultant, and he said that there were some [PCT’s] at that time, I think Islington or Harringay, something like that, he said did give lesbians IVF treatment, but our one didn’t. And I’d assumed they wouldn’t so that wasn’t, that wasn’t a surprise. So..
So you knew that you were signing up for private treatment if you decided to do this?
Yes, I was hoping I could get anything corrective done on the NHS. That was my original thought. That if there was something wrong I’d get that corrected. But then if it came to IVF I’d have, or IUI I’d have to pay for it. And you know, I was happy, happy to do that.
Because you know I’d rather go without a holiday and pay for… you know, it was a priority, it wasn’t something I felt entitled to. Or… anything.
We also spoke to some couples who had been able to afford to pay for all their treatment privately, although it was often not easy to find the money. Lulu was grateful that her mother lent them the money to pay for her treatment, but she felt it was “quite a pressure”. Although Tim felt he had numbed himself to their negative results, he said the worst thing is they’ve spent so much with nothing to show for it. “So when it does actually come out as a negative it is almost to say well I am already expecting it. Again whether I intentionally suppress the feelings or whether it is just I am numb to it now. I don’t know. But as I say, the worst thing for me really is that we have spent this much money and again we have got nothing to show for it”.
Older couples were often acutely conscious that the ability to start treatment now rather than wait for a NHS referral could make all the difference to them. The high costs involved raised the stakes; some were happy to forgo holidays and new cars to maximise their chance of a baby. Most people felt it was impossible to equate the possibility of having a baby with a monetary value.
Choosing a clinic
The HFEA recommends that people take into account the location, appearance, success rates and the embryo transfer policy when they are choosing a clinic. Success rates were certainly important in deciding where to have treatment. Many of the couples we talked to had done a lot of research on the Internet before they chose a clinic (see ‘Information and support’). Janine explained that they looked at league tables and statistics but were “dubious about some of the fairly unsophisticated results” and decided to go for their local centre. Some, like Naomi and Martin, chose to travel abroad for their treatment (see ‘Travelling abroad for treatment’). They used the Internet to find out about clinics in Spain and the experiences of others who had been treated there.
The people we spoke to also stressed the importance of the ‘feel’ of the clinic and their relationship with the clinicians. Frances followed her gynaecologist’s recommendation to see a doctor who had, “’Very good results and is absolutely super and this is the person you want to see’ so without a second thought, without a second opinion, without anything I toddled off and that is what I did”.
Karen and her husband had had a bad experience at one clinic, where they did not feel they were given enough information; at the next clinic she prioritised their success rates and how open they were to her questions. Janine and her husband chose a clinic that did not have the best results, but which meant they didn’t have far to travel – “So we decided that (it) might not be the best but its good enough and it’ll keep our stress levels down”. Others, like Martha, did not have the option of a local clinic because of her address. There wasn’t one near and so she had a long journey to get to the fertility clinic.
Karen is a nursery nurse. She is married to her second husband, Phil (Interview 31) and has four children. Ethnic background' White British.
We went to have a look at another place and it was an NHS, but you could go in as a private patient. So we looked at that on the internet and they had a very good reputation, a very good success rate, so we thought fair enough, yes, we’ll go and have a look at this place. And I said, “If I go for the initial evening and I don’t like it, I’m not coming back.” I said, “Do you understand? We will look for somewhere else, until, you know, we’re happy.”
But the initial, even the initial consultation, was great, answered so many more questions. I could sit there and think, now that’s why they did that, or that’s why they did that. They answered the questions from before that I’d never got answers to. Made me feel completely at ease. Told me we could ask as many questions as we want. We could ring and ask questions if we were feeling unsure at home. The counsellor was on standby most of the time. But if you rung and said before you came there, they’d make sure someone was available to speak to you. You know, or if you said on the day that you were struggling, you might have to wait, but somebody would eventually come and speak to you and sort things out for you. And it was just, and they explained all the drugs to me on that night, “This is what you’ll be taking.” And, “This is why you are going to take this. And then we’ll give you this and this is why. And this is what this is going to help you do. This is going to help relax you on the day when you come in to have your egg collection. And they explained absolutely everything. And it was a much, from the outset it was a much nicer experience.
The overall feel of the clinic was key for several of the people we talked to. Lulu had been to visit a very famous clinic but felt it was too impersonal. She chose one closer to home that was smaller but much more friendly. Naomi also rejected clinics that felt like a production line and went for one that seemed friendlier. For Bev, her personal relationship with the consultant was very important. “I think it’s important to have a good relationship with your consultant. For them to be able to understand where you’re coming from, what your anxieties are, what your concerns are. And for you to be able to communicate how you feel with your consultant”.
Lulu is a homeopath. She is married with three children. Ethnic background' White British.
I think people you know they cared, and I think that is very important. You are not part… that was actually why I chose that clinic, because it was a smaller clinic. It was very small, five members of staff I think. So you knew everybody and whereas I had the opportunity to go to a much bigger one and I just felt, although they had fantastic success rates, you were just a number in a machine and I actually have heard that from a couple of people who have been there. Great, but you are just a part of the… you know, a lot of numbers and for me that is not all right for me.
Age at interview:
Age at diagnosis:
Naomi is a project manager, married to Martin (Interview 29). Ethnic background' White British.
We had three local ones. One did very, very small number of treatments every year. Their success percentage wasn’t too bad. But it was just sort of they only did egg collections on a Tuesday or a Wednesday and it was, you know, we didn’t feel that we could really rely on them I suppose. One was a London clinic that was, we just felt it was a bit production line when we went there.
And then the one that we ended up going to, it was just so friendly. It was, seemed very professional but still hadn’t lost the personal touch. The nurses were lovely. And the doctors were really nice. And it was very local to us as well, you know, it was only about half hour, forty minute drive or something like that.
So we made the decision on the clinic in the July and then we started up our cycle in October 2004.