‘I'm so aware that each day is another day towards the end of when I could have treatment. That's how I think about my 35th birthday now. It's an ending.’
Zoe*, 34, is one of hundreds of women who are calling on the government to ‘stop the clock’ when it comes to IVF treatment and honour the support they would have received, had coronavirus lockdown not halted clinics for much of 2020.
For many women like Zoe, birthdays which take them over the treatment age limits of their local NHS clinical commissioning group (CCG) will have been a day of mourning, not celebration. NICE recommends all women under 40 receive three rounds of IVF, and one between 40 and 42, dependent on some other conditions. But local CCGs, battling lack of funds in recent years, have introduced arbitrary rules, and age limits. Now, women are passing those birthdays in England, without a guarantee they will still be able to get the care they would’ve done had there not been a pandemic.
In Scotland, Wales and Northern Ireland, there have been commitments to extend patient age limits and ensure patients will remain eligible for NHS-funded care despite the delays caused by the pandemic. A coalition of charities, patient organisations and professional bodies is today calling on Matt Hancock to issue guidance to prevent patients missing out in England.
Freedom of Information requests submitted in September by BPAS have revealed that CCGs are adopting different approaches, with some offering extensions and others stating that no exceptions to the age limit will be made, putting at risk patients' chance of receiving treatment.
Zoe is 34 and lives in Buckinghamshire, where the local CCG would qualify her for one cycle if they’re referred before her 35th birthday and the cycle is completed withing six months of that birthday.
‘I went to my GP in February - I told them we had been trying for two years, my partner is 38, and I assumed we would be referred to a specialist to talk about our options, maybe some tests to diagnose why we have having difficulties getting pregnant,’ she told Grazia. ‘When she explained, ‘Well there's no time for that, you've got less than a year to have all your treatment, so if you don't go straight into IVF soon then you won't get any NHS care,’ I was shocked. It's a lot to process, and I think we were still not quite ready to start IVF because we are still quite young, so to not have time to consider it was a shock.
‘My GP said they would refer us, but I don't know if that's happened and we haven't heard anything. I have tried to get another appointment but that's impossible. It's affected me emotionally, I feel we've been forgotten about. Don't get me wrong, I know the NHS has to prioritise other things at the moment, and I'm so grateful for the NHS. But it would be so unfair if through no fault of our own we become ineligible for NHS treatment because services were paused.
‘I think the age limit is unfair because it is not applied equally. Why is a woman in another part of the country able to have three NHS funded cycles at the age for 39, and then here it's just one cycle for women until they reach 35? It makes no sense. I understand that there might be a need for some kind of age limit, because maybe it doesn't make sense to provide IVF to women with no real chance of conceiving. But come on, 35 is not old in today's society and lots of women wait until their 30s to start trying.’
I don't expect anyone to promise me a baby, but I would like Mr Hancock to promise that me and my partner will be given the chance to try.
She added: ‘I would say to Matt Hancock that I know we might be a small group of couples who will be affected by this, but the effect on us and our families is just devastating. To know I might not get to be a mum because I happened to have a birthday at the wrong time - I don't think that would ever leave me. Knowing that there's a pause, just that reassurance that we will at least be given a chance to start a family, would be a huge relief. I don't expect anyone to promise me a baby, but I would like Mr Hancock to promise that me and my partner will be given the chance to try.’
The delay in accessing treatment, and uncertainty about their ability to qualify for treatment, are causing significant harm to some patients’ emotional and mental wellbeing. A recent survey of fertility patients conducted by the British Pregnancy Advisory Service (BPAS) found that patients reported feeling worried (78%) and upset (78%) during the time that clinics were closed, with more than 50% reporting bad or very bad sleep during that period.
One patient told them: ‘I am frightened I may miss my opportunity. I am getting older and time is not on my side.’ Another said: ‘I’m very concerned about the age limit. I have a cyst on my ovary, this is causing me extreme pain as well as impacting my fertility. […] I need surgery before I try IVF. I’m not sure when my surgery will take place and they will make me wait at least a year trying naturally before referring me for IVF. I feel extremely let down.’
One woman added: ‘It affected my work as a nurse massively as it exacerbated my anxiety. I felt like I was living my life on pause whilst the media were joking about a ‘baby boom’. Even when clinics resumed the uncertainty around when our treatment would start was exhausting.’
Marta Jansa Perez, Director of Embryology at BPAS, said: ‘A lot of patients have had treatment suspended due to the COVID-19 pandemic, and many clinics are still operating a reduced service. As a result, fertility patients continue to face long delays, causing significant distress and uncertainty.
‘Without action, there is a danger that some patients will miss out on treatment altogether… We are therefore calling on the Health Secretary to issue guidance to CCGs that patients who have crossed an age threshold during the pandemic should still be considered eligible for treatment. This will provide much needed reassurance and ensure that no patients are disproportionately affected by the pandemic.
‘NHS funding criteria for fertility treatment are inconsistent across the country, including age limits for women. It is time to review this postcode lottery system and provide fair NHS funding in line with the NICE Guidelines recommendations for all patients going forward.’
Gwenda Burns, Chief Executive, National Charity Fertility Network added: ‘During a time which is challenging, distressing and extremely stressful for patients it is completely unacceptable that patients could be disadvantaged due to the COVID 19 pandemic.
‘Patients in England are already subjected to an unfair postcode lottery. It would be welcomed and extremely helpful at this time if the Westminster Government could give assurances that patients in England will not be disadvantaged as a result of treatment being paused or delayed due to the pandemic. There has been a huge surge of patients seeking vital support during this period, concerns have been varied including concerns for the future, being unable to access treatment, impact on mental health and wellbeing and concerns specifically from people aged 36 and over.'
Dr Emily Scott, founder of IVF Fairness, said: ‘While COVID-19 laws and restrictions prohibit many of us from spending time with members of our family, for others it is threatening the possibility of being able to start a family at all. People approaching arbitrary age-based thresholds to qualify for treatment for infertility are understandably anxious as COVID-19 compounds existing barriers to accessing IVF and related treatments on the NHS.
‘IVF Fairness stands with BPAS and other co-signatories of this letter in calling for the Secretary of State to respond compassionately and proactively to mitigate the anxieties of patients approaching arbitrary age thresholds which would prohibit them from accessing NHS treatments due to COVID-19. Now is the time to ‘stop the clock’ on behalf of those who are experiencing delays in accessing treatment for infertility (categorised as a disease by the WHO) on the NHS.’
BPAS are asking people to email their MPs to tell the government to Stop The Clock. Go to friendsofbpas.org/stoptheclock/
* Some names have changed.