Mum shares her experience in call for IVF to be reinstated
- Credit: HEATHER WILLIAMS
"You just need to feel that you have been treated fairly. Because when you are struggling with fertility issues, life feels unfair.
"You spend your whole time saying, why not me, what have I done wrong, why won’t this happen?
"It’s not fair. And we all know life is not fair, but when you are then confronted with a system that doesn’t feel fair, it exacerbates it completely.”
Heather Williams, aged 32, is an accountant, leader of the Conservative group on South Cambridgeshire District Council, and, thanks to IVF, she’s a mum.
In vitro fertilisation – fertilising an egg outside of the body and returning it to the womb to grow – is a technique that can help some couples struggling with infertility issues to have a baby.
The technique was pioneered in Cambridge in 1978, and is now offered on the NHS across most of the country.
But free IVF on the NHS is no longer available in Cambridge, or elsewhere in the county.
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This is becuase the body that decides such things, the Cambridgeshire and Peterborough Clinical Commissioning Group, suspended the practice as one of many measures taken to reduce a large financial deficit in 2017.
According to Fertility Network UK, Cambridgeshire is just one of seven CCGs – 3.6 per cent of the total – to have withdrawn the treatment.
Guidelines from The National Institute for Health and Care Excellence for the NHS’s IVF provision are complex, but broadly speaking they say women aged under 40 should be offered three full cycles, subject to certain conditions.
Next month there is an opportunity for free IVF to return in Cambridgeshire, as the CCG has said it will “review” its stance on the issue when its board meets in July, following an improvement in its financial situation.
Cllr Williams wants to see IVF returned to Cambridgeshire to end the “postcode lottery”.
Speaking with the Local Democracy Reporting Service before the CCG announced it would review its position, Cllr Williams told of her own experience.
She spoke of the difficult journey couples who seek out IVF have already taken, the inequalities of the system, the case for fairness, and how even unsuccessful treatment can allow couples to move on.
“I remember feeling so guilty because I knew it was my fault. I know that everyone says no blame.
"But it was, there was nothing wrong with my husband. The medical issues were mine.
"And I felt awful,” she said, explaining the difficulties faced after several years of trying to have a baby.
It wasn’t just her husband she felt she was letting down, but his and her parents too, saying it felt like “I wasn’t just robbing myself, I was robbing them of being grandparents”.
Of course she knows that is not how they saw it, that she was not to blame, but it was, she said, how she felt at times.
“There is a lot to process when you feel at fault. I can’t help that my body was this way, granted, but it’s a difficult one to come to terms with.”
Then, after doctors were unable to diagnose the cause of the issue, there was a two-year wait to qualify for IVF.
She said she experienced six years “of feeling like a failure. Feeling empty. And feeling emotionally drained.
“It takes everything you have got to just carry on as normal. And there are days where you don’t want to get out of bed to be quite frank.
"And you watch everyone around you, and it’s like one of those films where the person is stood still and everything just keeps moving.
"You don’t want to go to the supermarket because you know there will be kids.
"We stopped going out for lunch at one point, and we would only go out for dinner, because there would be families. And you don’t begrudge anybody anything at all.
"When my friends fell pregnant I was so happy for them, I really genuinely was. But every time it was just a reminder that I wasn’t a mum.”
At the time, Cllr Williams did not immediately qualify for IVF on the NHS in Cambridgeshire, but the criteria was different only a few miles away across the CCG boundary.
And she said it made the stresses of ensuring she met the criteria more difficult, knowing the obstacles to access were lower in the village just down the road.
“It’s not what they are asking you to do as such, it’s a postcode lottery which is the hardest thing to bear.
"This is why people move house to get into a different county,” she said.
“People do, because I have to say that when you are in that situation you will do anything to become a parent.”
Having met the criteria, she then found that, at the time, Cambridgeshire offered fewer rounds of IVF than some other areas.
In her case, the IVF was unsuccessful.
“I felt really guilty because it had failed”, she said, “I kept saying to myself, what if another woman had had them, and it would have been better to give her that, and she could have a baby, if it has not worked for me.
"And I think a lot of that is because of how pressured it is to get it, because of how finite a resource it is.
"You are immediately putting pressure on yourself. You’re grief stricken really when it doesn’t work.
"You put so much into it, and your body is punctured and sore and tired, that anything small can make a big difference to your emotional wellbeing.
"That’s after you have done so much work and put yourself under so much pressure to even qualify in the first place.”
Knowing IVF offered a route to motherhood, she said, had given her hope.
When it didn’t work, although it was devastating at first, it allowed her to move on and look at other options.
It was during a six-month waiting period to start the adoption process that she went for a standard procedure to address a medical issue, which brought to light information her doctors suggested would significantly increase her chances of IVF working.
If she started IVF in the next few days, she was told, it would be “the best chance you are going to have of having a child”.
With her family’s support, she went for it, going privately, and it worked.
“I thought, well after what they said if I don’t do it I will regret it,” she said.
But, casting her mind back to when the first rounds of IVF had failed and she had begun the process of moving on, she said “if I hadn’t had the IVF, I don’t think I would have been able to move on.
"I don’t think I would be able to sort of have that acceptance – you know we tried, we did the IVF, it didn’t work.
“You cling to it as hope. Until you have had your chance at IVF you will always wonder what if.
"I definitely felt, even though it didn’t work, I felt acceptance. I wasn’t expecting to do it again.”
Beyond her criticism of the inequalities of the current provision, Cllr Williams also questions the fairness of some areas taking on the financial burden from others.
“The fear I have is that other places will start seeing their IVF figures increase and might then do the same as Cambridgeshire.”
Cllr Williams is calling for “a more standardised criteria, because you can accept that you don’t qualify, but it’s really hard to accept three miles away you would.
“My critique is of the CCG and not the doctors or anybody who practices in the NHS, and not the overall volume of money, because they are given a substantial amount of money from the Government.
"I’m not saying that because I’m the same party, I would say that if it was Labour.
"I think the CCG have to really think about how they are funding female and reproduction treatments in general. There are real strains and pressures, I get that.
"But it can’t be a case of where you live and your postcode depending on what treatment you get or receive.
"Not when it comes to something like having a family. I think they need to have a joined up approach.”
Cllr Williams says the argument goes beyond fertility, and is also one of mental health.
"If we can give people cosmetic surgery to help people with their self esteem and their mental health – and I completely support that – why not fertility?
“That is what has been lost, is actually looking at the consequences of what they are doing from an emotional point of view, which in itself will put more strain on other NHS services potentially.
"Some women feel that incomplete that they don’t want to carry on.
"Some men struggle with it so much that they don’t want to carry on.
"If anyone said that about anything else there would be something to help them, but the Cambridgeshire CCG has decided not to if that reason is fertility.
“I don’t blame the CCG for anybody who does feel that way, but they have to realise that people are out there feeling that way.
"It’s a factor that needs to be taken into consideration. I can understand how people could feel that way.”
When the decision to suspend IVF was first taken in 2017, the chair of the CCG, Dr Gary Howsam said it was “one of the hardest decisions we’ve had to take”.
Referencing a need to save £46.5 million that year, he described the CCG’s funding situation as “desperate” and said “difficult decisions” were “financially necessary”.
The CCG has said those with fertility problems can still go to their GP to discuss the treatment options available to them.
When all seven Cambridgeshire MPs wrote a letter earlier this year calling for IVF services to be reinstated, a CCG spokesperson said “couples can still be referred to hospital for further tests to investigate the cause of their infertility.
"Many of these causes can be successfully treated without the need to go on to have IVF.”
Cllr Williams now has a young daughter. In the years since, many couples like her and her husband living in Cambridgeshire have sought IVF on the NHS without success.
Her main point is that people seeking out IVF are already going through a very difficult time, and the last thing they need is inequitable treatment.
“It can be really challenging emotionally, and the system doesn’t really help with that. Because it feels institutionalised then, institutional descrimination against people with fertility problems,” she said.
“It is simply not fair that because of where you live means that you have the right essentially to become a parent or not.
"It’s just – and I sound like such a child – but it’s not fair. You already feel life is unfair when you are in that situation.
“Anybody can deal with anything I think, if you feel you have been treated fairly."