The HFEA answers your questions on restarting fertility treatment
In this bonus episode,Kate and I speak with Sally Cheshire, who is the chair of the Human Fertilisation and Embryology Authority (HFEA)
These shownotes are a transcript of part of our conversation with Sally. Please listen to hear the full interview:
What is ‘elective treatment’
It is the word that the NHS use when it’s not an outright emergency. So the NHS made that decision. And it’s an unfortunate name because no one chooses to go in for surgery, particularly with regard to fertility treatment, but that’s the word that’s been used.
So the NHS said that they would suspend all non-emergency treatment during the pandemic, so the only people who were being treated in the first stages of the pandemic after the 23rd of March, that was, were people who were in an emergency situation.
What we said in terms of fertility is that patients who were having cancer surgery, for example, and needed fertility preservation would still be allowed to go ahead and our clinics would stay open for those patients to store gametes and embryos. But also, we would allow as many patients as possible to try and finish their cycles if they had started. And we know that there was a different response from clinics, and you can imagine that they were trying to manage, as well as all other NHS hospitals, some clinics carried on with those cycles, and then collected eggs or frozen eggs or embryos. But some patients we know had their cycles cancelled earlier than the 15th of April. And all I have to say is it was up to the clinic to decide whether they could go ahead. Some of them of course, had already lost staff to the front line. They’d had some of their equipment used for testing for virus testing from the embryology lab, and some of them also had staff who were self isolating or who’ve been diagnosed.
We do know there’s been a massive increase in patients seeking counselling support. But if you actually talk to counsellors, some patients are asking different questions. Some of them are clearly distressed, not being able to have treatment. Some of them are very fearful of the virus and what impact it might have. So counsellors tell us they’ve seen an increase in patients who were just seeking help to deal with their general anxiety, not necessarily ready to talk about the implications of their particular treatment and what that might mean. So we do know that there is support out there and I’m sorry to patients who didn’t quite get what they wanted, perhaps from their clinic.
We’ve had to rely on professional guidance. So from the UK bodies from the British fertility society and of and the clinical scientists, but also from Europe and America, who advised similarly to stop treatment, until we knew a few more things, and their guidance has been very similar to the UK all along. And the Royal College of Obstetricians and gynaecologists also had to think about whether they considered there was any risk in early pregnancy. And they’ve also issued a couple of sets of guidance. So I think everybody has issued at least two sets of guidance over the last four weeks from the professional bodies. We’ve issued a number of letters to clinics explaining our requirements. And we’ve also tried to communicate with patients as best we can.
The professional bodies have issued their latest guidance, which is cautious optimism.
I think this is the most difficult decision the FDA has ever had to make in 30 years really and the board and the staff have tried so hard to get it right. One of one of our criteria, quite rightly, was that there was no, or that there was as much evidence as possible to say there was no increased risk in pregnancy. And when I was thinking about it this morning, as a patient, you know, pregnancy is somewhere over the rainbow, isn’t it? It’s a long, long time away. And if you are trying to think about having treatment, it’s probably not even possible in some cases to even think that you might get that far. But we have to try and balance those needs and our understanding of what patients are going through with the practicalities. And if the Royal College or if there was evidence from around the world that pregnancy was riskier for women or for their babies, then we needed to be able to say that to patients well, understanding that that’s their dream. And it might be a very long way away.
Order of patients being treated:
I don’t think we’re in a position to instruct clinics on the order that they need to treat patients in because they will know all those patients or couples individually. What we know from the government’s and it’s quite an interesting position in England is that Scotland Northern Ireland have all committed to not disadvantaged patients as treatment restarts. So we are assuming that clinics would treat patients in the order in which they were there to have treatment. If someone has a particular issue with low AMH, for example, then we’d encourage them to talk to their clinic and ask whether there’s been any detriment. It’s only actually a couple of months since we asked treatment to stop, but to really talk to their clinic, and in terms of starting again then and when patients might expect to be seen. And it’s important to understand that some clinics will be ready to start almost immediately because they’ve been planning during this downtime, and other clinics may not be able to start immediately because they might not have their staff or their equipment back there might be relatively small.
Updates on the HFEA website:
On a daily basis, we will put on our website, which clinics are open, and which are still in process. So for example, you know, if you live in Birmingham and there are five or six clinics, we will tell you that three of them are open, it’s up to the clinics to decide there isn’t a specific date at which all clinics will start treatment because it’s very important for them to have looked at their staff to put their plans in place, looked at the risks and decided how they can offer a service because it we’ll talk about the new normal, don’t we? The new normal will be very different. There will we will have to have social distancing and waiting rooms. There. have to be distancing as far as you can between staff and patients. Many of the early consultations will have to take place over video or phone. And the clinics might operate a longer day to space patients out. And they will have to source enough protective equipment to make sure that patients and staff are still safe. So there’s a lot for clinics to do. We’re going to do this by our self-assessment process, which is how we do inspections. So all clinics will have to fill out a self-assessment questionnaire to tell us whether they’re ready, and how they’ve considered the risks and what their new procedures are. And they all ought to be talking to their patients right now, irrespective of the time to opening because they should be providing support, and they should be answering their patient specific questions about where they are in the queue. So that self assessment questionnaire can be a claim this can apply to us with a completed questionnaire next Monday from the 11th Have May, and our inspectors will turn that around in a few days and authorize clinics to reopen. But it won’t be all of them. And I know that’s so difficult.
Patients will have to be seen properly by medical nursing, administrative staff, you will have to understand where you are in the queue, which hopefully is what it was six weeks ago. And you will have to understand maybe that clinics can’t potentially treat quite as many patients as they did back in March. Due to social distancing and to spreading patients out over a longer day. We all clinics patient says we all want to treat as many patients as soon as possible.
Treatment in England:
We are urging NHS England to make those fair decisions as well for all patients, the majority of patients who were treated in England, it is actually up to a local clinical commissioning group to fun treatment. So I think that the first decision if you are a patient in England, is to receive that assurance from your clinic that you are still in the same place in the queue as it were, or if you have a particular decision that you ask your clinic for help and advice separately Do you know there are some patients who are worried about funding. And we know that that is still a decision for Clinical Commissioning Groups, we are pressing NHS England, I have no powers in that area at all. But we’re pressing the government who are who think that patients should be treated fairly. And we are pressing NHS England and the CCG to make sure that that happens. If you are a patient and you are approaching the cutoff age for funding, which will make you very anxious, in the same way that we worked with the government last week to extend the tenure storage limit for gametes and embryos, we hope that there will be similar sympathy for patients who are approaching the limit and an extension so that they can still access NHS funding. I don’t have an answer on that. I’m really sorry. But all we can do is work in the background as hard as we can to try and make sure that happens. So again, if you have a particular funding issue, please speak to your clinic.
Donation, of course falls into two categories, doesn’t it people with a known donor who they might take along during their treatment, and people who use an unknown donor through their clinic. So I guess if you are needing donation treatment and you are using an unknown donor, then you are still in the same position as you were before the lockdown. Those gametes will still be will already be in the clinic or frozen for treatment. And that doesn’t seem to present any particular issues as long as you can undergo the counselling that often accompanies donation treatment. So that doesn’t seem to be a particular problem. If you have a known donor, someone in your family or a friend who is involved with your treatment, then again, as long as they’re well and you’re well and clinics can accommodate the social distancing and the things that are required, then that wouldn’t seem to be a particular problem. What clinics will probably have to do is ask patient questions about whether they’ve been diagnosed positive with the virus or whether they’ve had any symptoms in recent weeks and potentially also ask those questions when clinics and or their donor start to arrive for treatment.
So we’ve talked about, for example, clinics, testing or patients testing the temperature when they arrive. But we know that temperature is notoriously unreliable. So clinics are thinking about the best way that they can put the professional guidance into practice. But at the moment, although there are extra barriers and processes around donation, as long as your clinic can cope, and you and if it’s a known donor are well, then that would seem to be okay. The difference we have with Europe and it’s important to say this because people will be aware that the European guidance from ESHRE came out a few days before the British guidance which is due out shortly. The lockdown restrictions have been lifted in some countries like Germany or Denmark, and therefore treatment has started a little earlier simply because their countries are opening up and fertility treatment is something they feel they can offer. But the extra guidance because those countries have wider testing programs has suggested that all patients should be tested for the virus before they start treatment. And if it’s positive, you will be asked to wait. That can’t happen in the UK because we don’t have testing to the same degree. So if we can’t yet test all NHS staff on the front line, and we can’t yet test all patients who go in for surgery or there we’re working up to both of those, it would seem impossible to be able to test fertility patients specifically for the virus but clinics will have to put in the hours to follow NHS guidelines, which are to test for patients undergoing surgery, but not to test for the virus in day case patients.
What patients should do next:
I think the most important thing is to try to get through to your clinic because the questions that you have now about when you can start treatment how The appointments will work, where you are on the list, and whether there are any additional requirements will be specified by those clinics and we will let you know via the website who’s open and where you can go.
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