One of the worst parts of IVF is waiting for it to begin. The anxiety of pondering how long you will have to wait for the first consultation, not knowing what happens at each stage and wondering whether it will all work out. You find yourself in a state of flux where life becomes unplannable. Weekends away, big social events, holidays all fall into the category of ‘possibly inconvenient’ as they could in theory be slap bang in the middle of your IVF. It’s just that you don’t know when IVF will start. And IVF is all you can think about.
My estimated IVF timings were wrong, oh so very wrong. In fact, they were out by 4 months and if I hadn’t pushed for an earlier initial consultation, they would have been out by 6. For those who haven’t experienced the nightmare of infertility this may not sounds so bad. “You’ve waited for 3 years already, what’s another 4 months” was one comment I received. But when you have spent a year working towards a particular date in your mind, believing it to be your one shot at having a baby, any movement on that date may induce an emotional meltdown, or two. How did I get it so wrong? A failure to fully understand the process and making overly optimistic assumptions about efficiency and timeframes that bore no resemblance to the previous 3 years of long drawn out fertility investigations.
To avoid my mistakes and to help others to capitalise on my learning in order to avoid sinking into a pit frustration and despair (that joy comes later during the IVF two week wait), I’ve shared my IVF experience in a series of articles, beginning with a question I am frequently asked: How long does it take to get referred for IVF?
Can I have IVF on the NHS?
NICE recommend what IVF treatment it thinks should be made available, including age limits, number of cycles and boundaries for weight and hormone testing. However, funding for IVF is determined by your local Clinical Commissioning Group (CCG). CCGs are responsible for commissioning health care within their local area to meet the health needs of their local populations. The result is that the healthcare one CCG choses to fund (including for IVF) can vary from a neighbouring CCG, producing what is known as a ‘postcode lottery’. You all pay the same taxes, but don’t all have access to the same services.
To find your local CCG you can use the map and postcode look up by Allies. Once you have found your CCG you can then search online for its policy on IVF or other assisted reproductive treatment. If you are having trouble finding the policy document, Fertility Fairness has researched all of the policies in England and put the information into an easy to read spreadsheet so that you can see what your area offers. Your CCG may not fund assisted fertility treatments or may have tighter restrictions than those recommended in the NICE guidelines, for example around age limits, number of cycles offered and time you have to wait before being offered support.
How long do I have to be trying for a baby before I am referred for IVF?
IVF waiting times on the NHS vary hugely. That is because the length of time that you have to be trying to conceive before you will be referred for IVF varies by local area, with some clinical commissioning groups (CCGs) funding IVF (if at all) after only 1 year of trying and others, like mine, referring after 3 years. The link above enables you to check the NHS IVF provision awarded in your area (and it is like an award, a completely random IVF pot luck lottery). The length of time from referral until you are seen by the IVF clinic also varies due to differences in waiting times, driven by capacity and popularity of the clinic. Once referred, the wait can be between a few weeks to a few months. More on that below.
What is the IVF referral process?
Choice of IVF clinics
Once you’ve served your sentence on Infertility Row, and you happen to live in a 'lucky' area of the country then you are eligible for an NHS IVF referral. For us, this process was undertaken through the fertility clinic at our hospital. Depending on the number of IVF clinics in your area, it may be that you are offered a choice of clinics. We could pick between the Victoria Wing at Nuffield Woking, the Fertility Centre at Croydon University Hospital, or Kingston Hospital. Like every other fertility appointment, we had no idea to what to expect and were side swiped by the unexpected need to make a decision on clinics there and then. Isn’t everyone on the NHS just sent to ‘the local IVF clinic’? Apparently not. After looking to my husband, us both shrugging whilst simultaneously mouthing to each other ‘Woking?’ we decided based on no evidence whatsoever that this was definitely the place for us. My view was underpinned by a vague recollection that Woking had OK success rates, probably, I think (was it Woking?) and Joe’s decision was solely based on Woking being the nearest to home. So there it was, over three years of waiting and a year of eager anticipation of an IVF referral and the choice of clinic came down to uneducated guess work. Luckily, it was the best choice we could have made.
Tips to avoid picking your IVF clinic on a whim:
- Ask your hospital or fertility clinic whether you will be given a choice of NHS funded IVF clinics, so that you can consider the options in advance.
- Look on the Human Fertilisation and Embryology Authority website at the statistics for your clinics to allow you to compare success rates.
- Consider the distance and ease of getting to your IVF clinic from home (or work). The appointment schedule when you’re in the swing of things is intense, so access becomes important.
- Ask your hospital or fertility clinic about the waiting times to receive a first consultation for each of your choices, as they may vary considerably. Weigh this against the success rates, as the best IVF clinics tend to be popular and therefore have longer waiting times to start. A longer waiting time isn’t necessarily a strong reason not to choose a clinic if the success rates are excellent.
- Call the clinics and ask to look around the facilities, if you feel this will help you to make an informed choice.
Filling in the IVF referral form
For many couples, the process is for your hospital or fertility clinic to post to you the IVF referral forms, which you complete at home and post back. Our hospital (Royal Surrey) recently changed the process so that couples are invited for an appointment with a fertility nurse where the nurse fills in the forms whilst in your company. This change in process hints at incompetent form filling by Surrey based infertiles left to their own devices. Our IVF referral appointment was scheduled for 1 week before we qualified for IVF on the NHS. The forms ask for your basic bio details (name, address etc), work through the CCG criteria for IVF funding (duration of infertility, previous IVF cycles, any children, body mass index etc), ask whether all the necessary screening tests have been undertaken (Hep B and C, HIV, tubal status testing etc) and attaches any relevant results.
What blood tests are needed for IVF?
The fertility vampires require yet more blood, this time from both partners, checking for HIV, Hepatitis B and C so that the results can be recorded on the IVF referral form. For us, this was taken at the hospital after completing the forms. I had already been checked for HIV and would be checked again (twice) before the year was up. They may let PCOS slip through the net, but they made darn sure I didn’t have HIV.
Our timings from filling in the IVF referral form with the nurse to receiving confirmation of funding from our IVF clinic was 3 weeks and the process was:
- Referral form completed by the nurse at our hospital
- Blood tests taken and results recorded on the referral form
- Form is signed by a consultant at the hospital and sent to the Clinical Commissioning Group.
- CCG processed the form and sent confirmation of funding to our IVF clinic of choice
- We received a letter from the IVF clinic confirming we have NHS funding and it would be in touch with a first appointment date.
Once the referral form has been sent, how long does it take until the first IVF consultation?
Receiving the letter from our IVF clinic confirming NHS funding was a cause for exuberant celebration in our household. Cue the merriment, daydream fantasies of a successful result and obsessive reading of the IVF booklet sent alongside the letter, the only official information for me to read (over and over again).
Every day thereafter I would bounce home from the train and, like a kid on Christmas morning, excitedly sort through our post, eager to discover whether The Letter had arrived. Pizza takeaway flyers, VIP offers from Pets At Home, letters from the council asking us to yet again confirm who lives in the house for the electoral register despite us voting in every election, and a deal on window cleaning (did that go to all houses on the street or had they singled us out?). But never The Letter. Nope. Days turned into weeks and once again I was being taught the value of patience.
And then it came. 6 weeks after receiving the letter confirming NHS funding we then we received confirmation of our first IVF appointment (yippee), for 8 weeks’ time. 8 weeks?! Are they serious? Is this some kind of punishment? This is where I learnt one of my first major lessons of IVF, applicable to life in general: If you don't ask, you don't get.
Do private patients have shorter waiting times for IVF then NHS patients?
I called the clinic to ask whether a 2 month wait was the norm. I politely inquired (hopefully disguising my desperate pleading) as to whether there was any possibility of moving the appointment forward, either through a cancellation or by changing consultants. The clinic were at pains to make clear that there was no difference in waiting times between private patients and those funded through the NHS. None whatsoever. They insisted that the clinic ran more like the equal treatment expected in the Chinese communist dream and less like the hierarchal North Korean state (my words, definitely not theirs). Posh is not favoured over poor when it comes to waiting times. I felt comforted by this, a feeling that would undoubtedly last until our first private round, when I would think that maybe North Korea were on to something with their favouritism.
The clinic explained that when dishing out appointments it did consider the length of time available to take up the offer of IVF (e.g. older women near the age limit for funding may be seen ahead of women like me who had a spare few years). Claire, the wonderful woman who books appointments at the Victoria Wing at Nuffield Woking, explained that the clinic aimed for continuity of care wherever possible. As a consultant at the Victoria Wing, Dr Curtis, was supposedly my consultant at the Royal Surrey Country Hospital also, I was booked with him, despite that not being the first available appointment. “But I never even met Dr Curtis” my desperate pleading becoming transparent. “I was supposed to be with Dr Curtis but I only ever saw a woman registrar”. What I didn’t verbalise was that I was keen for a discontinuation of care with that experienced at my hospital. The notion of another few months of that level of ‘care’ reduced me to a sobbing wreck. Luckily Claire worked miracles, which I understand is Claire's way, and we were given a cancellation slot 4 weeks earlier than our original appointment and still with the wonderful Dr Curtis. Result! As uncomfortable as it felt for an introverted English girl to be what I perceived as ‘pushy’, I learnt that it definitely pays to be firm but sweet, like a peach. I thought of it this way, the worst they can tell me is ‘no’, and I would be no worse off.
Preparation for the first IVF consultation
There are a couple of tests that ideally take place prior to the initial consultation, in order to give the consultant the best understanding of your situation. These tests are booked through the IVF clinic and are:
- Sperm analysis test – your partner’s first visit to the wank room. The sperm is being checked for the usual parameters (volume, morphology, motility etc) to understand whether there is likely to be an issue with fertilisation of the collected eggs.
- Pelvic scan - a transvaginal scan between days 2 and 6 of the cycle and a first date with my new best friend, the twat wand. Checking whether everything is ‘normal’ in there. Number of follicles, any cysts, fibroids, other surprises.
- Blood test for AMH levels – Checking for ovarian reserve and an indicator of how your body will respond to the IVF stimulation drugs. Low AMH may show that stronger drugs are required and potentially less eggs collected. High AMH may point to PCOS and potential overstimulation of the ovaries. The results help the consultant to determine the appropriate drugs doses (known as your drugs protocol).
My appointment for the pelvic scan and AMH blood test happened to coincide with a Friday off work that I had planned to spend with my parents who were visiting for the weekend from abroad. So I took them along with me. Why not, right? A weird family trip to the fertility clinic. My folks did not come into the room with me for the scan (we are not THAT kind of family) but instead I left them together in the waiting room. It occurred to me later that people entering reception must have looked at my retired parents, thumbing through magazines and sipping on tea, and thought ‘blimey, that mature couple in the corner are expecting a miracles from this clinic’. Nobody wants to feel that they are the oldest ones in an IVF waiting room, so really my parents were doing a public service by giving all other patients a boost in confidence.
SMEAR test (within 3 years) – although not an official preliminary IVF test as such, you will have to have had a SMEAR within 3 years of starting your IVF. This wasn’t undertaken at the IVF clinic but booked with the practice nurse at our GP surgery. One recommendation: Don’t mention that you need a SMEAR for IVF, instead just mention that it has been more than 3 years and therefore overdue. This mistake of mine resulted in the nurse snippily saying “Well, we don’t do additional SMEARs just to help you with your IVF” (aw, what a sensitive soul, dealing delicately with my troubling situation) “but we will do it if it is overdue, which it is, so hop on the bed”. It’s odd to think that I used to be embarrassed, awkward and coy when having a SMEAR. Infertility has changed that. Now I’m all “Awh, come on lady. Roll up your sleeves and get stuck in. No pussy footing around (pun intended).” After 3 years of infertility, if it had been a while since a medical professional fiddled with me down below I felt neglected. Was it something I said? Are you seeing someone else? Is it you, not me?
Personal preparation for first IVF consultation
- Vitamin regime - Zita West’s IVF preparation vitamin pack were the vitamins I used to get my body in shape for IVF. They are expensive but contain all the essentials that you need. Although the packaging says the vitamins contain folic acid, be assured that further detail on their website clarifies that it is Folate (as 5-MTHF). Phew! And alternative brand that I love and have also used for fertility and pregnancy is Wild Nutrition's fertility supplements. They make both male and female vitamins male and are a comprehensive high quality blend of purely food grown nutrients. In addition to the above vitamins I also took extra ubiquinol for egg quality (honestly, so expensive it will make you cry) and inositol to help me to manage my insulin resistant PCOS.
- Diet – High protein, organic, freshly prepared, non-processed and reduced alcohol. Not a barrel of laughs, but highly effective.
- Pre-reading – Two excellent books that helped me with IVF were 1) Get a Life. His and Hers IVF Survival Guide to IVF, which is a hilarious book that talks you through the IVF process and the emotional onslaught that is about to begin and 2) It Starts With The Egg, an in-depth look at the research surrounding egg quality and what we can all do to improve it and our chances of having a baby. Prepare to be horrified!
It took almost 14 weeks between completing the IVF form to attending our first IVF consultation. 3.5 months is a long time when you are a desperate woman waiting. But the timing is perfect to get your eggs and his swimmers into fighting shape ready for IVF, as research shows that 3 months is the crucial timeframe to really make changes to egg and sperm quality. So although the wait sucks (and it does, it really does) the only constructive thing I could think to do was to focus on our health and getting my body in a fit state for what was to come.
Coming next in the IVF Series...
IVF Gift ideas - Wednesday 21 February
What happens at the first IVF consultation? - Sunday 25 February