infertility

Deciding To Write To Our Local Care Commissioning Group

Deciding To Write to our local ccg

For those of you who don’t know a Care Commissioning Group (CCG) are the people in charge of deciding what funding, rules, and processes are put in place for the NHS groups (doctors, hospitals, clinics, dentists) They receive their guidelines from The National Institute for Health and Care Excellence (NICE) and then the CCG board sit and decide which guidelines will be put in place and with which criteria.

For example, NICE guidelines state that “In women aged under 40 years who have not conceived after 2 years of regular unprotected intercourse (less for those with pre-diagnosed fertility conditions)or 12 cycles of artificial insemination (where 6 or more are by intrauterine insemination), offer 3 full cycles of IVF, with or without ICSI. If the woman reaches the age of 40 during treatment, complete the current full cycle but do not offer further full cycles” and there is no mention at all of whether one partner can already have children or not. However Southampton CCG assisted conception criteria states “Treatments for sub fertility will be funded if the couple does not have a living
child from their relationship or from any previous relationship. This includes a
child adopted by the couple or in a previous relationship” which as I’ve said before doesn’t seem fair to me.

All across the country there are different CCG’s and each one with a different set of rules. I don’t believe this to be fair, but mainly my question was “why?”  So I decided to find out. On Thursday night I wrote the following email and sent it to my local CCG and to NICE, while I’m still awaiting a response I hope people will start listening.

 

Dear whomever it may concern,

Recently I’ve been thinking about some things and I’m hoping you can answer them for me. After years of irregular/non existent menstrual cycles, weight gain, excessive hair growth, and frequent abdominal pain I was officially diagnosed with Polycystic Ovarian Syndrome (PCOS) at the age of 21 in November 2014. I was placed on a contraceptive pill, told that there may be fertility issues in the future but not to worry because I was “still young” and sent on my merry little way.

Now here I am nearly three years later, married and trying for a family. The downside to this? My periods are still incredibly absent, I don’t ovulate, the weight gain has been insane, and I’m finding that it is increasingly difficult to get help let alone be listened to. Yet that isn’t the reason for this letter, no the reason I’m writing to you is regarding Southampton CCG’s rules regarding NHS funded fertility treatments such as IUI’s (Intrauterine Insemination) and IVF (In Vitro Fertilisation)

At an appointment with Southampton’s Fertility Clinic I was told that my best options would be weight loss (with no actual advice on how to lose weight while battling with a hormone imbalance) and then the next step would be six months worth of Clomid. If that were to fail then IUI and IVF would be the next steps. That was of course until my husband mentioned that he has a son from a previous relationship, and I’ll be honest I already knew what was coming but that didn’t stop it from hurting  – “in that case the options of IUI and IVF would have to be self funded and wouldn’t be available to you through the NHS”  I guess my question to you all at the CCG team is – Why is it that you’re more than happy to help and then all because my husband has a child I’m suddenly not entitled to have one of my own?

NICE guidelines say that  “In women under the age 40 offer 3 full cycles of IVF with or without ICSI” – I have studied these guidelines within an inch of their life and there is no mention of meeting any other criteria other than that. While I understand that NICE’s guidelines are just that and that it is the decision of each individual CCG, I myself and many others are finding ourselves confused over these rules as being completely honest they don’t seem very fair.

Southampton’s CCG rules state that IUI and IVF isn’t available to couples if one of them has a child/children from a previous relationship, but if you really think about it this ruling isn’t fair. I completely understand that these things cost money and take up valuable NHS resources and that cuts must be made somewhere as the NHS is expensive to run, but I hope that you can appreciate my confusion as to how you think it’s okay to  turn round to someone and say “your partner has a child so unfortunately you can’t have any of your own.” Short answer, it isn’t.

You base your rulings on whether my husband has children with another woman but let me ask you this, why does my husband already having a child mean that I’m not allowed to be a mother myself? Would you tell a fertile woman the same thing if she married a man with children? Upon learning this small piece of information you get to make a massive decision that impacts someone else’s life, a decision that honestly shouldn’t even be yours make in the first place. There’s no enquiring into how often we see said child, or how involved we are in their life, you just hear that there is already a child and say no outright. No if’s, buts, or maybe’s about it. Yet you all fail to miss one thing when you’re so harshly making your decision – yes my husband may have a child, but I do not. Regardless of how involved I may be or the relationship I may have with his child, I am not their mother. I never will be, and I would never try to be. Yes welcoming someone else’s child into your life is a big thing and is a role of responsibility but it is not the same as being a parent yourself, and why shouldn’t I be allowed to experience that for myself ?

I have to ask, why does my husband’s history get to decide my future? If I broke my leg would you tell me I couldn’t have an x-ray because my husband had broken his leg three years before me? If I needed my appendix removed would you tell me I couldn’t because my husband had his removed a year ago? Or god forbid I ever had cancer, would you tell me I couldn’t have tests because my husband once had a cancer scare?- while these scenarios may seem illogical to you, I hope you see the point I am trying to make. My husbands history should have no effect on the medical treatment that I, my own person should receive.

Infertility is a disease, so why can’t I have treatment needed? Why does my treatment for a condition that effects me and me alone, depend on the circumstances of others? I understand that the board members of CCG’s are usually mostly male and will unfortunately probably not sympathise with my argument but I hope I can at least be listened to.

A woman can walk into her GP surgery and claim the size of her breasts is making her miserable and she leaves knowing that in a few weeks time she’ll have a nice new set of boobs on the NHS for free. Whereas I have a genuine medical condition caused by a hormonal imbalance and the way my pituitary gland works, where side effects include weight gain. infertility, mental health issues, as well as causing a genuine feeling of disgust and hatred towards my body for being a “failure” yet I’m told I can’t have any help. How is this fair?

I realise that I’m one person and I’m unlikely to change anything but my god am I going to try, but first I’d like an actual explanation as to why this decision is made, and a good reason at that. If I hear nothing back or the answer seems to generic and like I’m being fobbed off, I’ll write again. I’ll write to my MP, to Parliament, and to NICE if necessary if that’s what it takes to get genuine answers.

The NHS is a fantastic service that I am more than grateful for, I just feel like sometimes when these decisions are made you forget you’re dealing with actual human beings with their own lives. It’s easy for you to say no to something when you don’t see the level of destruction it causes afterwards, and I’d like to start changing that. These things take time and I’m going to put that time in, but for now all I need to know is … Why?

 

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infertility

How Our First and Only Fertility Appointment Went…

How our first and only fertility appointment went...

It’s taken me a little while to find the right words for this post because honestly I really wasn’t sure how to put it into words, but as I mentioned in my previous post our first appointment with the fertility clinic was Monday 7th August at 9.30 am, and I can wholeheartedly say it was an absolute disaster. I’ll admit that that Monday morning I actually felt a little excited and I finally felt like things were heading in the right direction for us, unfortunately I was very wrong.

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infertility

We Start Our Fertility Clinic Appointments In One Week…

we start our fertility clinic appointments in one week...

If you read the title and are a little shocked trust me you aren't the only one. When we went to the doctors for a referral at the end of May and had all our tests done, we were told that there was a four month wait for an appointment with our local fertility clinic. I said this was completely fine as we had the wedding, the move, and our honeymoon coming up so maybe it'd be nice to do those things without adding the stress and worry of fertility appointments too.

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infertility

“You’re Just Too Ashamed To Admit You Don’t Want Kids”

We start our fertility clinic appointments in one week..

Now that I’m back in the swing of things I think it’s time to continue with my “Things Not To Say” Series, and where better to pick up from than the one sentence that makes me want to scream until there’s no air left in my lungs. “You’re Just Too Ashamed To Admit You Don’t Want Kids” Continue reading ““You’re Just Too Ashamed To Admit You Don’t Want Kids””

infertility

From EllanPaige to MeetTheWicks…

From Ellan Paige to Meet The Wicks

So you may have noticed that my name on here has gone from EllanPaige to MeetTheWicks. This change is because Mitch and I sat have been talking and we decided that along with my blog, the best way to get my message out there really is YouTube. Lots of people have said this to me over the last few months and if I’m honest I’ve been too scared and lacked self confidence.

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infertility

Dare To Dream by Izzy Judd, And A Little Giveaway

Dare To Dream by Izzy Judd

On Thursday 29th June 2017, a book I had been waiting for what felt like forever was finally released, Dare To Dream by Izzy Judd. For those of you that don’t know who Izzy is, she is a former member of the electronic string quartet group Escala, wife of McFly drummer Harry Judd, and mother to 18 month old Lola. Some of you may be wondering why I was waiting so eagerly for this book, while others may already know Izzy’s story or remember my previous post last year thanking her for everything she’s done. Like so many of us Izzy really struggled with fertility. She has PCOS, sadly had a miscarriage, and has been through IVF, but instead of keeping quiet she’s decided to use her voice and public status to speak up about fertility issues and start the conversation.

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infertility

It’s Not A Competition

It's Not A Competition

If there’s one thing in life I’ve never understood it’s people going out of their way to try and top something you’ve done in the hope that they’ll be bigger and better than you are. Sometimes even going as far to take your ideas and palm them off as their own to see if they’ll gain more recognition for it than you did. I will never ever know why people can’t just let you have your moment and be happy for you, I suppose it’s quite sad really but it’s also rude and quite upsetting.  Unfortunately though these people don’t seem to understand the effects of what they’re doing especially when it comes to taking something you’ve put so much time and effort in to.

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infertility

A Chemical Pregnancy

A Chemical Pregnancy

I told myself last night that I wouldn’t write this post, yet here I am. I’ve realised as the day has gone on that I need to write this, not only for me but because when I started this blog I promised I’d be honest about documenting my journey and if I don’t write it then I’m not being completely honest with anyone.

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infertility, PCOS

Infertility and My Mental Health

Infertility and my mental health

It’s no secret that I’ve battled with depression and anxiety since the age of about 13 years old. The depression would come and go whenever it saw fit and eventually left me alone in 2015. My anxiety however has remained a constant for the last ten years. Most days are pretty manageable but others are crippling where even getting out the door becomes the hardest thing in the world. I can’t go to new places alone, I’m yet to join everyone from work on a night out, and I would rather the ground opened up and swallowed me instead of having to meet someone new but that’s just who I am now.  Recently though the depression has made it’s way back in, but this time things are different and I know exactly what’s caused it… our good ‘friend’ infertility.

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