IVF Treatment on the NHS

This is a story about why I wouldn’t want IVF treatment courtesy of the NHS. This is my story and not a reflection on everyone’s experience of NHS treatment. Nor is it a reflection of everyone who works for the NHS. It is simply my story and my opinion.

After the outcry and attention surrounding the NHS upping the age limit for IVF treatment and the woefully poorly written blog on the Mothercare website (now kindly removed due to its ill informed nature), in which the author speaks about how no woman (with a few exceptions) should be granted access to IVF Treatment on the NHS, I thought you may all like a different take on things. So this is about why I would not want the NHS to treat my infertility, nor would I want any NHS funded IVF. Again this is a personal story so if you are going through IVF courtesy of the NHS, your experience may be very different. And hopefully it is.

My story starts back in 2009, when I first started trying for a baby. After months of trying, I took myself off to the doctors for initial blood testing. When I got the results back the doctors said she would be referring me to the “specialist” at the hospital, as my hormone levels were, and I do quote, “not quite there yet”. At the time I didn’t think much of the comment as I was very new to the fertility world and assumed that having been on the pill for so long, it would just take a little while for my hormones to return to the right levels.

I had to wait months for an appointment. When I finally got my appointment, I was beckoned into the consulting room, where there were two student doctors sitting inside as well as the specialist. He asked me what the doctor had told me about my test results, I answered him, and at this point, he turned to the student doctors, and laughed. Yes that right folks, he laughed at me, chuckling, “hormones not quite there yet – hahahah”. He laughed like I was a naive, clueless, little girl, and frankly I probably was at the time. I had not idea what to expect or what would unfold at this meeting. Can you imagine how that felt, given I was feeling pretty horrendous about everything anyway?

I was then informed by the specialist that the problem was with my hormones, especially the FSH level, and it was that, that was preventing pregnancy. He then asked me if I was having any hot flashes, told me I was menopausal and said that my only option would be donor eggs or adoption. Astounded much??!!

He lent across the desk and handed me a piece of paper, written on it was the names of 2 local private IVF clinics. He said the NHS would not treat me for any aspect of my condition because I didn’t meet the criteria for treatment and I would be too difficult to stimulate at IVF stage.Plus it wouldn’t be worth it because my eggs would be poor quality.

To say I was stunned is an understatement. Talk about ZERO bedside manner, compassion or thoughtfulness. I was only 32.

As I got up to leave he stopped me, seemingly stunned that I wasn’t crying. Not one to shy away from a confrontation, I said to him that if he refused to treat me, I would go find someone that would. The man simply had no compassion and no sensitivity to the situation. The enormity of it was overwhelming to me. He may have dealt with many women all in the same situation, but this was my life and he couldn’t even be bothered to treat me with any respect or empathy.

I eventually ended up having 2 rounds of IVF at a local clinic which was utterly soul destroying. In my opinion that clinic gave me some seriously sub-standard care, especially as I later discovered that the horrible specialist I had met at the hospital was actually a consultant there, and had been let go or encouraged to leave, due to never getting a woman pregnant. His skills and expertise in the area of IVF and fertility were clearly, nil. The man was simply just not up to the job. Or lacked the motivation and drive to get it right.

So after practically saying “ta ta” to my sanity after these 2 failed rounds of IVF, I got online and googled my ass off to find the best clinic in the UK. Which lead me to the very wonderful, ARGC. I owe them so very very much. Yes I paid them £15K for the pleasure but I still owe them. Their commitment to find a solution to my individual problem. Their creative use of drugs to maximise success.  Their extensive testing.Their commitment to immune testing too. Mr T is quite simply an angel. We are so very lucky to have him in the UK.

It is my understanding that the NHS do not test immunes, they do not prescribe things like steroids, they do not use blood thinners to help implantation etc. I also understand that they do not work at the weekend, so its tough luck if you need your eggs collected then, you just have to wait.

Once my care was passed back to the NHS from the ARGC at 12 weeks pregnant, I found that there was a serious gap in their knowledge of how to care for ladies who had gone through IVF, as I was still on certain drugs – progesterone, aspirin and clexane. My mid wife was so baffled by my journey, my IVF and the drugs I was still on that she promptly referred me back to the hospital to see another specialist this time.

This specialist, again totally baffled by why I was still on drugs and why I had been prescribed the majority of my drugs in the first place,  told me to stop taking everything, advice I promptly ignored. By this point my disillusionment with NHS treatment and care was huge!

My experience of infertility care by the NHS is very poor. I haven’t accessed much NHS care previously, I don’t go to A&E lots, I don’t even have an NHS dentist, but the one and only time I needed them, they failed me.

Maternity care at the hospital was something else entirely and I actually found that very good indeed, in fact, I was shocked at how good it was. There was a time I considered having the baby in a private hospital just so I wouldn’t have anything to do with the NHS. I’m not quite as angry now thankfully!

It is my option (and my opinion only – so please don’t take offense), that the NHS simply does not have the skills, the innovation, the ability and the motivation to treat those of us with fertility issues that are not straightforward. They are unable to think around a problem and come up with any creative solutions. It is my opinion that they are baffled by anything new, anything innovative and a little “left field”.Their solutions are very off the peg as the desperately try to force you into a “one size fits all” solution. Sadly I am left with only negatives thoughts and feeling about the NHS.

IVF is heartbreaking and scary. Its the most god awful rollercoaster ride you will ever experience. And a failed IVF is hell. Therefore IVF treatment on the NHS for me given that myself and my husband both have fertility issues, would have been a pointless exercise and a waste for all involved.

There is no denying the NHS is seriously stretched and something needs to be done, but my experience was a nightmare.

Connect with me more:

I sell fertility tea go to http://www.assistfertility.co.uk

Twitter: @assistfertility

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9 responses to “IVF Treatment on the NHS

  1. Brilliant post Jo! I can relate to this almost as if I’d written it myself! We had almost the exact same experience (although haven’t gone down the IVF route – yet). I went through all the usual tests and scans with the GP and then we were referred to the specialist, which we waited months to see. The very last test I had done was the Day 1-3 FSH blood test (surely this one and the Day 21 Progesterone test should be done in the very first stages before you start having scans and Hycosy’s etc?!) We started all of this in June last year and only got to see the consultant in January this year. And exact same as you, we were in this really drab, cold room, he came in with a student (never asked if it was ok), he told us quite brutally that I had a high FSH and low AMH (never really explained what it was, just said it was a hormone imbalance), was close to menopause, that the NHS would not fund us for IVF and we should consider donar eggs!! We were so shocked and devastated. He had no bedside manner either, you’d think he was talking about a probem with my foot, not the emotional, sensitive issue of trying desperately for a baby.We just feel so let down by the NHS and it’s all down to budgets and statistics – they woudn’t want us impacting on their success rates if they gave us IVF and it failed.
    But now that we’ve done our research, I don’t think we’d feel confident having it through the NHS anyway. Exactly as you say, we get the impression that it’s just the bog standard and therefore your chances probably aren’t as good.
    Interesting to hear that you experienced this back in 2009, and here we are in 2013, and my husband and I have just been dealt with in the same way – so nothing’s changed then!
    We had a private consultation at Lister Clinic in London last week and it was super. The doctor was lovely and gave us some hope. Although we still know that this may be an uplhil battle, it’s all doom and gloom like the first doctor made out it to be. Just a shame that it may end up costing us a small fortune!
    Anyway, we are giving ourselves another 3 or 4 months of trying naturally and if not, then we will head down the private IVF road at Lister.
    Again, well done on writing such a great post!
    Sue
    x

    • Hi and thank you so much for reading and your comment.

      Feedback I’m getting is that a lot of people in exactly same position with NHS. It’s not good. Such a shame! I’ve paid my taxes etc give me a bit of service!

      What was your FSH? My initial was 19.8, 20 is considered menopause. But this month after testing my FSH is 7.2, totally normal! Can give you some tips for lowering if you are interested?

      Are you on twitter?

      • My FSH is 17 and AMH is 1.1.
        I have just had it retested and waiting the results so fingers crossed it hasn’t got worse!
        I’m doing all the tricks in the book: weekly acupuncture, wheatgrass, maca, Co Enzyme Q10, folic acid, Zita west vital Dha, vitamin e… Eating healthier, excercising… Also just ordered some DHEA as suggested by the doc at Lister. He said I’m not going through the monopause now, so not to panic. He said I’d probably have 2 or 3 years of irregular periods leading up to this. My periods are very regular now and I am ovulating which is good. They did an antral follicle count which showed 7 follicles on my left ovary but nothing much on my right. But he said they can definately work with the 7 on my left with short protocol stimulation, should hopefully get a decent number of eggs.
        Oh and I’m also drinking nettle tea, raspberry leaf and chamomile!
        But open to anymore tips if you have?’ Lol!
        Sue
        X

      • Looks like you are doing everything I did so I can offer anything else!!!

        When I got pregnant I was doing both Yoga and Pilates and trying not to stress about things as fsh can increase if you are stressed.

        I like Zita West vitafem boost. Two excellent ingredients in that good for “ageing” eggs. Ive taken DHEA – watch out for the spots! Mine were awful but you may be lucky. Be careful too as its a “mother hormone”. Your body can turn it into other hormones. Mine turned it into progesterone which could have affected my ivf. Stop taking it when you start ivf.

        Remember your eggs take 90 to mature. So treat them well now and they will be at there best in a few months.

        If you like herbal tea, and I did, drank gallons whilst I ttc, have a look at my website http://www.assistfertility.co.uk. I sell a blend of tea partly good for balancing hormones. It’s great and I certainly credit it in part with my fantastic fsh result this month.

        Above all, don’t give up hope. Things may seem horrible right now but you’ll get there in the end. Where there is a will there’s a way.

        Lots of support on twitter so join if you haven’t already

        If I can help in any other way please get in contact

      • Thanks for the advice! I’m also a bit nervous about the DHEA but willing to try it if it helps! If it doesn’t agree with me then I will stop. Do you mind if I re-blog your post on the NHS as I think it’s really good and would like to share it on my blog if you don’t mind?
        Not on twitter-yet! X

      • Let me know how you get on with DHEA. Of course I don’t mind you re blogging it! Thanks for the complement!

        Lots of love Jo

      • Ok will do, thanks Hun! X

      • Forgot to say, one of my ovaries doesn’t work either. Max nos of eggs I get is 8. But you only need one at the end of the day, so don’t worry about that.

      • True, it only takes one! X

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