I Survived Stage 4 Cancer - Now NHS Funding Refusals Could Cost Me My Chance to Have Children

I may lose my chance to have biological children because the NHS is refusing to fund fertility preservation now that the damage doctors warned me about is actually happening - even though there is still time to protect my fertility AND the funding is there for every young girl before chemo who have time.

That is the injustice at the heart of this petition.

I was diagnosed with stage 4 blood cancer at just 24 years old.

I had a huge mass in my chest and went from planning my future to spending 150 days in hospital and undergoing roughly 800 hours of intensive chemotherapy.

Ideally, I would have frozen my eggs before chemotherapy, but my treatment had to start urgently. Delaying potentially life-saving cancer treatment was not realistically an option.

Thankfully, I survived. I am now three years cancer-free.

But surviving cancer does not mean the effects of treatment simply disappear.

We applied for egg freezing funding after chemotherapy - while there was still time.

After chemotherapy, I still had a reasonable ovarian reserve.

That was exactly why my specialists wanted fertility preservation considered. At that point, I still had a good number of eggs available and egg freezing was very much possible. But the specialists also knew something important:

My ovarian reserve could fall quickly after chemotherapy. It was a documented phenomenon. So we did not apply for funding because my fertility was already gone. We applied because there was still something to protect, and because the doctors knew that window might not stay open for long.

The NHS refused the funding.

Since then, the decline my specialists warned about has happened. My ovarian reserve marker has now more than halved in around a year. If I had been able to freeze my eggs earlier, specialists believed one cycle may have been enough. Because of the delay, I may now need two or three cycles to try to collect a suitable number of eggs. And if my ovarian reserve falls significantly again, egg freezing may no longer be a realistic option at all.

That is what makes this so upsetting. We asked for help while my fertility was still relatively well preserved.

The specialists warned that it could decline quickly. Funding was refused.

Now that predicted decline is happening. And I am still being refused. This is not a case of asking the NHS to reverse damage once it is too late.

It is the opposite. We tried to intervene before it became too late. That opportunity is getting smaller while I fight the system.

Before chemotherapy, fertility preservation is funded and encouraged for all young women, because there is a recognised risk that treatment may damage fertility.

That makes sense. But what happens when someone cannot delay urgent treatment? And what happens when the fertility damage doctors warned about actually starts happening? Why is it not there after? 

Before treatment:

“This chemotherapy might damage your fertility, so preservation may be necessary.”

After treatment:

“The predicted damage is now happening, but you do not fit the funding pathway.”

How can that make sense?

The risk has not disappeared.

It has become reality.

And there is still potentially time to do something about it.

I challenged the decision.

I submitted further Individual Funding Requests.

I complained.

I escalated.

And I am still being refused.

At what point does somebody become eligible?

Do we really have to wait until the damage is worse?

Fertility is not something you can restore once it has gone.

Waiting until a woman's ovarian reserve has deteriorated further before accepting that the problem is serious defeats the whole purpose of fertility preservation.

Why is fertility not one of the first things checked after cancer treatment?

My experience has also exposed what I believe is a much wider problem. If certain chemotherapy is known to damage fertility, why is there not a clear national pathway for what happens afterwards? 

Why is fertility not one of the first things properly reviewed when a young patient finishes treatment?

Why is there not a point where somebody says:

“You survived. Now we need to check what this treatment may have done to your fertility.”

Young women should not have to know what ovarian reserve testing is. They should not have to recognise the signs of premature ovarian insufficiency or early menopause themselves. They should not have to know exactly what questions to ask.

And they should not discover years later, when they are ready to start a family, that their opportunity to preserve their fertility disappeared long ago. Sometimes it feels as though everything is focused on getting us through cancer treatment and then we are simply left to work out the consequences ourselves.

I am not the only woman this is happening to. Through campaigning, I have met and spoken to many other women in similar situations.

Some say fertility was barely discussed.

Some did not realise their treatment could affect fertility until afterwards.

Some only thought to ask after hearing other cancer survivors talk about it.

Some have told me that by the time anyone properly investigated their fertility, they had already entered premature menopause.

But there is another part of this that people do not see: many women are simply too exhausted to fight the system.

Cancer treatment is exhausting. Recovery is exhausting. Living with the long-term effects of treatment is exhausting.

Then patients are expected to understand commissioning policies, gather evidence, submit funding requests, challenge refusals, complain, appeal and keep pushing when they are told no.

Not everybody has the energy to do that. Not everybody has the confidence, support or strength to keep fighting while also trying to rebuild their life after cancer. I have been able to keep pushing. Many others cannot and I believe that is why this gap exists.

Access to fertility preservation should not depend on whether a cancer survivor has enough fight left in them to become a campaigner.

Being too exhausted to appeal does not mean the system worked. It can mean the system wore you down.

That is why I am continuing this fight for more than myself.

NICE guidance is not enough

I've been to parliament and since, National NICE fertility guidance has moved in the right direction. They now say that anyone with a past medical condition or who has undergone medical intervention should have access to fertility preservation if their future fertility is at risk.

SINCE THIS, I HAVE STILL BEEN REFUSED. I have written to the ICB asking how cancer is not a medical condition and chemo not medical intervention and as expected, heard nothing back. They have even flat out refused to meet me to explain their refusal. 

NICE clinical guidelines are recommendations for NHS care, but they do not automatically create the same mandatory funding requirement that applies to certain NICE technology appraisals. Local commissioners still have a major role in deciding how guidance is implemented and what they will fund.

That means national guidance can recognise a problem, yet a patient can still face refusal locally. Which is what has happened to me- since the updated guidelines. How on earth can my ICB argue that stage 4 cancer is not a medical condition and chemotherapy not a medical intervention?

I find that extraordinary.

What is the point of having national evidence-based guidance recognising that people are at high risk of fertility problems because of medical treatment if a patient's access to preservation can still come down to how an individual local commissioning body interprets its own criteria?

Guidance is important. But guidance without a clear, enforceable national funding pathway still leaves patients exposed to a postcode lottery.

That is exactly why this petition is asking for more than another recommendation.

We need a system that actually guarantees a clear route to assessment and appropriate fertility preservation when cancer treatment is causing the very harm doctors predicted.

There is a huge gap between cancer treatment and fertility care. The NHS understands that cancer treatment can damage fertility.

That is why fertility preservation exists before treatment. But once treatment ends, responsibility becomes far less clear.

Who monitors fertility? Who refers the patient? Who decides when preservation becomes urgent? Who funds it?

That is exactly where young cancer survivors can fall through the cracks, as a lot of young peoples' cancers are found too late to delay treatment for egg freezing as we are 'too young' for cancer.

The NHS recognises the risk before treatment. But when that exact risk begins to become reality afterwards, there does not appear to be a clear or fair route to act.

I asked the people making these decisions to meet me. I was told a meeting would not change the outcome. I found that incredibly dismissive.

I do not want cancer to decide when I become a mother. It is all I have ever been sure about. I am now 28. I desperately want children.

But I am not in a position to have one right now, I am trying to rebuild my life after cancer, doing everything right, I had to change my career due to immune system damage after chemo so now am trying to build a business whilst suffering other long term effects of chemo.

That should be okay. Instead, I constantly wonder whether I need to rush my entire life because I am frightened about what my fertility might look like next year.

Should I start trying for children now? Should I bring forward one of the biggest decisions of my life?

Should I abandon the timeline I imagined because chemotherapy damaged my fertility and the NHS will not fund preservation?

That is an enormous emotional burden. I have already lost part of my twenties to cancer and recovery.

I want to enjoy the life I fought so hard to keep.

I want to become a mother when I am ready.

Not because I have been frightened into it.

Cancer already dictated enough of my twenties.

Why should it now get to dictate when I become a mother?

I have taken this fight everywhere I can

I have challenged the refusals.

I have complained.

My case has gone to the Ombudsman.

I have appeared on BBC Newsnight and other news coverage.

I have taken this issue to Westminster.

I have spoken to MPs, campaigners and fertility organisations.

I have taken the issue to the Health Minister.

I have raised concerns around NICE guidance and shaped the updated guidelines.

I have put deeply personal medical information into the public domain because I believe this problem matters far beyond me.

And still I am fighting. Which begs the question- How does someone actually change something clearly so unjust?

This should not depend on your postcode. A young person's life should not depend on where they happen to live or which Integrated Care Board makes the decision.

This petition is calling for two clear changes-

1. A national fertility follow-up pathway after cancer treatment.

Young people receiving treatment known to threaten fertility should receive appropriate information, follow-up testing, specialist review and referral where clinically appropriate.

2. A clear and consistent NHS funding route for fertility preservation after cancer treatment when treatment-related fertility decline is happening and preservation is still possible.

National guidance alone is not enough if local commissioning decisions can still leave patients without treatment.

Cancer treatment saved my life.

I will always be grateful for that.

But surviving cancer should mean having a future too.

I should not now have to spend years fighting the NHS for the chance to protect the future I survived for.

And other women should not have to use what little energy they have left after cancer fighting a commissioning system simply to protect theirs.

Cancer took enough from us.

It should not take our chance to have children too.