How to lobby your CCG about fertility treatment?

Feb 17, 2020

We’re back with the second episode of the Tea Break Pod. In this one we chat about the 10-year storage limit for egg freezing and how you can become empowered to challenge your CCG.

#Extend the limit

First up we chat about the Progress Educational Trust who, back in October last year launched their #ExtendTheLimit campaign about gamete and embryo storage, including extending the 10-year storage limit for eggs frozen for non-medical (social) reasons. Last week the Government announced a public consultation into this issue. This is great news and we wait to hear the outcome on this and will keep you posted.

Here you can take a read of some of the case studies The Progress Educational Trust have shared which illustrate just how negatively the 10-year storage limit impacts women……..

Elizabeth Hamilton (a pseudonym), 46, froze her eggs nearly 10 years ago and is now fighting to avoid having her eggs destroyed against her wishes in 8 months’ time. She says: ‘The effect the 10-year storage limit is having on me is colossal: I’m constantly anxious about time running out. I feel like a ticking time bomb every day. The options available keep racing through my mind. Do I have a child with my current partner even though we are not ready; do I just pick a random donor and go ahead with it on my own? I don’t want to make the wrong decision for my future. But one thing is sure, I really do want to have my own children.

Sharon Jones, 34, froze her eggs two years ago in the hope of preserving her fertility for the future. She had considered freezing her eggs in her 20s but was put off from doing so because of the 10-year storage limit for social egg freezing. She says: ‘Extending the 10-year storage limit for social egg freezing would mean so much not just for me, but for other women too; it would mean we have been heard and can now be hopeful. It would mean we move one step closer to reproductive equality and, having frozen my eggs, it would reduce the anxiety and pressures of using them before their 10-year use-by-date, enabling a less-pressured journey to potential motherhood.‘

‘Making the decision to freeze your eggs for social reasons is in itself a difficult, stressful, costly, emotional and overwhelming process; a change in the law on social egg freezing would mean that in future women will be able to make medically-informed decisions, without having to factor in fighting a battle with an arbitrary, unscientific law too.’

Carolyn froze her eggs 10 years ago. She is now a mother after becoming pregnant naturally but was forced to move her frozen eggs last year to avoid them being destroyed because of the 10-year storage limit. She says: ‘Because of the 10-year storage limit I had to face having my eggs destroyed or take the costly and very inconvenient measure of moving them to another country. If I want to use them now, I’ll have to undertake treatment in Spain – all because of an arbitrary piece of legislation.’

TV presenter and scientist Dr Emily Grossman, 41, went through 4 cycles of egg freezing at age 38 in a bid to preserve her fertility. She says: ‘There is no medical reason for eggs to be destroyed after 10 years. The 10-year storage limit is completely arbitrary. It is ludicrous that women who had the courage to break taboos and freeze their eggs 10 years ago are now facing the destruction of potentially their best chance of becoming a biological mother. I would be devastated if my eggs were destroyed at 48, if I wasn’t in a position to be able to use them by then.’

Getting empowered to lobby your CCG

Next up, we chat with Laura Hardman who shares her experience of lobbying her CCG with regards to the Postcode Lottery and fertility treatment cuts in her area.

Laura and her husband felt really empowered to speak up and challenge her CCG to continue offering IVF on the NHS. Before lobbying her CCG Laura approached Fertility Network UK for support and guidance. This really helped her feel confident to approach her CCG.

Laura raised concerns to her CCG with regards to unnecessary waste, lack of research and how couples are pushed into IVF too quickly. A few months later Laura received a phone call with the great news that her lobbying had been successful and her CCG had agreed to continue to offer 2 IVF cycles on the NHS.

Laura tells us why we should all feel empowered to challenge your CCG or health care professionals when you are not offered the treatment you are entitled to. As Laura says, infertility is not a lifestyle choice, nobody chooses this path.

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