Yep. Still here!
So, heard back from North East Essex Clinical Commissioning Group today who have now confirmed that their policy has not changed. Would be disappointing had I not made alternate plans anyway. ‘Don’t worry, hold on until September when the reviewed policy is released’ they said…LOL. No, this hasn’t set us back but it does remind me of the harsh reality that is the injustice of fertility services in the UK.
Not much further forward from last time! We’re still at the same old slog with the same old people and not much further forward in the way of testing! So both the hospital AND the doctors managed to make a total shambles of my many blood tests which is so frustrating as each time I’ve waited ANOTHER cycle to retest! Waiting to repeat my day 19 blood tests (More like day 22 for me as I ovulate late) and contrary to the hospital’s advice I will be using OPKs this month to GUARANTEE I’m testing on the right day!
Nathan’s chromosone test results are in but cannot be disclosed to us until the doctor has seen them. A doctor who works one day a week! Ridiculous. Can’t wait to finish this testing stage and start getting on with some serious stuff.
On a positive note, we’ve found a lovely looking clinic in Czech Republic willing to treat us. We were so off the idea at first but with a lot of thought we’ve decided this may be the best option after all. Not only does it seem to be a very respectable clinic but they have fantastic success rates for a fraction of the cost. One cycle of IVF (including all the essential added extras) at our local clinic is in the region of £12,000! The same cycle in Czech (all in, including accommodation, transport, etc). will set us back £5,000! Still a lot of money but measly in comparison!
We’re currently in the stages of arranging treatment plans, something the NHS are not playing ball with. Currently in the process of liaising with the clinic about further tests they may require and getting our hands on results for tests we have already completed – not an easy task let me tell you! The sooner we can have our test results the sooner we can arrange treatment! Exciting!
In the mean time, I’ll keep preparing! Made some pretty drastic changes in my life to give us the best chances possible! Been following all the advice and guidelines for the 3 months before IVF. Avocado, euck. Maca, even bigger euck. I’m sure it will all be worth it in the end! Must be doing me some good as I’m a stone down, feeling lighter, happier and healthier!
Watch this space!
Well…it’s been a while but I’ve not had an awful lot to say. Today’s a rubbish day, what do I do when I struggle? I write 🙂
Since our appointment on 13th June (8 weeks ago today) we’ve heard nothing, that’s right…nothing. We were instructed to complete various intrusive and painful tests, some of which are over. We were told Nathan requires a chromosome blood test, a result which takes 2 months (!!!) We were told we’d receive the forms for this test within a couple of days, along with an appointment for a further consultation; Well, 8 weeks later and nada! Been chasing every day and constantly fobbed off with the same old rubbish. Having to fight the system as well as nature sucks. Had another morning of various chasing phone calls, to no avail. So now I’m sulking.
Over the last 2 months we decided to be open and honest about our story. I have to say, we’ve been overwhelmed by the support we’ve received, for that I’m eternally grateful. Whilst it’s so warming to see people appear from the wood works to help, it’s bittersweet. It’s so disheartening when you expected more support from your loved ones; especially when feeling discouraged by them at times. Some people don’t even bring it up, or even just send the odd text saying ‘are you ok?’ Oh well, maybe people don’t know what to say or just don’t understand the need for support.
On days like today I just try and remember my passion and silence every thing else, sometimes you just have to be a bit selfish! There’s ALWAYS some-one having a worse day than me, that keeps me grounded. Not sure where I would be without the family and friends who clearly care a lot.
Feeling determined; we may be a long way away yet but we WILL get there.
When deciding to go public with your story you have to be prepared for a certain amount of backlash, this isn’t a decision which should be taken lightly. As already mentioned, stupid people have stupid opinions. Our story has been broadcast over the last week and the responses we have received have been from one extreme to another.
I’ve received a considerable number of messages providing support for my situation but have also had to bear the trolls. From being irresponsible, to being a beggar to being undeserving…blah…blah…blah…
Not really sure what qualifies these people, who don’t know us, in making judgements about our lives. However, it has done what we set out to do which is get people talking. People are definitely talking. People will always have their own thoughts (maybe some should keep them to themselves?) and expressing them is the first step!
I’m happy to make myself look like a total muppet if my story can help just one person, people who actually read my story will understand this.
I would like to point out that at no point have I asked anybody for anything! People who want to help will do. The others are not forced into anything! I have not even stated whether I think the NHS should fund fertility treatment. My aim, from the start, has simply been to raise awareness of this postcode lottery and do my best to provide support where there is a monumental lack of it. People who want to see us as scrounging beggars should feel free to cast their aspersions.When I achieve my dreams all these losers will be history!
Anyway I had a cry, built a bridge and got over it hours ago!
I would like to say a huge thank you to the amazingly kind messages I have received. They have warmed me more than most will ever know.
So…So far I’ve covered the funding in very little detail. At our appointment on 13th June we were advised that there is no funding whatsoever for any kind of assisted fertility in the North East Essex. This is despite the National Institute for Clinical Excellence (NICE)’s reccomendation for funding for 3 cycles. My consultant told us that as we have no exceptional circumstances we didn’t stand a chance. Had we been tested for fertility issues in Suffolk (20 minutes down the road) we would have had all pre-treatments funded plus 2 rounds of IVF. A classic case of the postcode lottery!
I won’t go in to whether I think it should be funded or not but what I will say is…what happened to all or nothing? Whilst our clinical commissioning group say this is not ‘life saving treatment’ neither are sterilisations, vasectomies, reversals, ABORTIONS! It’s also a bit of a kick in the teeth when others receive treatment costing thousands for obesity, drinking, smoking, etc…
So…I contacted some local papers to find out their interest in this postcode lottery. I have been contacted back by 3 papers who seem keen to help raise awareness. In my eyes, even those who are unaffected should be aware of the inequalities we face. Our story is due to be broadcast 3 times over the next week…if that doesn’t raise awareness what will?
I am also looking into setting up a support group for others in a similar situation. There is currently no support available and the whole subject is some kind of taboo. I aim to do whatever possible to change this and comfort others in their time of devastation. I have contacted the North East Essex Clinical Commissioning Group to discuss the policies on their funding. I am awaiting a response from them and hope to meet someone to go over paperwork in the near future.
It’s early days but I continue to pray for children one day. For others who feel the same, I’m not sure if my efforts will make a difference but I know I’ll be damned if i don’t do my best!!
‘There’s always miracles’…’Just relax and it’ll happen’…blah blah blah
Turns out, the topic of infertility can actually be a bit awkward! God there’s so many things you should NOT say to those experiencing infertility. It’s not difficult…just keep it real!! The amount of times I’ve heard that we should just ‘relax’… I couldn’t even make it up! Half the time I just wanna say…’don’t you think I’ve thought of that?’
To anyone not knowing what to say, just be normal! Just say normal things like ‘that’s really rubbish!’ and be a mate! It’s only awkward if you make it awkward.
Infertility doesn’t need to be weird, lets not let the awkwardness or discomfort win!!
So on the 30th June my sister Zoe asked if I would like to join in a half-marathon…the next day! I hastily agreed…not knowing what I’d let myself in for, knowing that I’d done absolutely ZILCH training!
Half-marathon day came round in a matter of hours and we were at the start line! I ‘hit the wall’ so to speak at around 2km. I heard a farmer shooting in a field and seriously considered trying to get myself shot, just for a get-out excuse. I then spent the next 18km hoping for a car to mow me down just for an easy escape!! I’m not really sure how but I GOT THROUGH IT. Afterwards, I did not feel as ‘RUNderful’ as runs I have done in the past and felt like I was dying! With a puke stop on the way, I made it home where I slowly began feeling human again!!
What a horrible start, but that’s exactly what it was. The START of our fund raising. Including sponsors for this, I am proud to say we have hit over 25% of our target in only 12 days!! My faith in humanity has been restored and I love every single one of those wonderful people!!
A few days after this appointment I met Danielle, a close friend, for an emergency afternoon tea appointment!! We put our heads together and Danielle came up with the idea of fundraising.
With very little faith in humanity I agreed to this, without high hopes. We agreed that we would set a goal of £3,000 which would cover pre-treatment procedures such as seeing consultants and additional testing not available on the NHS. For the rest, we will cross that bridge when we come to it!
We agreed to do as much as we possibly can to raise funds for this cause!
My fundraising page can be found at http://www.justgiving.com/crowdfunding/danielle-peat
So on the 13th June we finally had our hospital appointment with the consultant. We arrived with plenty of notice on the ante-natal ward (really?) On arrival we had to wait to be buzzed in along with a (VERY) pregnant couple who decided to try and start a conversation and remind us what a ‘special time this is’…awkward!! We then had to go and check in and were asked what clinic we were there for. It’s even more awkward to announce that you have a hospital appointment with the infertility clinic in front of about 20 expectant couples!!
Upon seeing the consultant we were advised that it would be clinically impossible for a natural conception and that we would 100% require the help of our local clinic, Bourne Hall. Whilst I have heard amazing things about them I was not prepared to hear that there is absolutely no funding for this treatment. This is not due to having previous children or not being suitable but just demonstrates a huge inequality in accessing fertility treatments in the UK. 20 minutes down the road, in a different county, this would be covered…How do you explain that?
We left the clinic feeling pretty much like the NHS had washed their hands of us. We were made to walk back through the ante-natal ward, knowing that to experience the same journey as all the couples there we were facing a price tag of £25,000.
Not knowing how to think or feel we went home feeling angry and confused at everything and everyone and had no idea where to even begin!!
What are fertility issues? What a broad term. Your ‘fertility issue’ is likely to be very different to my ‘fertility issue’. Why do we use such an umbrella? Why do we sweep all our difficulties under the rug named ‘fertility issues’. Why is such a topic treated as such a taboo in the 21st century? Fancy words are created to avoid using words such as ‘vagina’ ‘sex’ ‘pregnant’ ‘period’…
Why should we be ashamed of our fertility ‘issues’ so to speak? I feel no shame in shouting my ‘issues’ loud and clear.
With no support groups in my local area and very little advice available I felt that my ‘issues’ denied acknowledgement and were suppressed, why? As adults, we should be able to discuss this heart breaking and devastating time rather than acting like school boys discussing erections. I have made it my goal to tell my story as honestly as I can, in the hope that others can seek comfort from my words…