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?