Fund future fertility for childhood cancer patients fairly.

Fund future fertility for childhood cancer patients fairly.

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Rebecca McGuinness started this petition to NHS England and

(Photo above by Carine Bea of myself raising awareness of the issue.)

Research has highlighted that the inequity of access to fertility treatment is also affecting childhood cancer patients/ survivors of cancer, some whom are having to rely on charity donations to preserve their fertility for the future. I want to help these reseadchers, medical professionals/charities/organisations and most importantly cancer patients and their families have one less thing to Worry About!

I want all cancer patients throughout the UK to have equal access to funding for Fertility Preservation and Storage Funding lastly much longer if not indefinitely especially those who have cancer as babies/ young children.  I want to thank the charity Candlelighters for funding this research and those medical professionals, charities and organisations fighting for cancer patients when it comes to fertility issues.

My name is Becki McGuinness and the reason I started this petition is because I have personal experience around this very issue. 

At 21 years old, I was diagnosed with bone cancer of the spine and sacrum. I underwent six months of chemotherapy and a further six weeks of radiotherapy, and later survived. But after treatment I was devastated to learn that she had gone through early menopause, and hadn’t been offered fertility preserving measures even though I asked for it and in my personal exprience I had more than enough time. I always dreamed of being a mother, so the loss was devastating. 

I started The Cancer and Fertility UK Campaign to make others aware that they can freeze their eggs, embryos, and sperm before cancer treatment to preserve their fertility. I was warned that there was a chance I could become infertile, but not to worry about it as it doesn’t happen to everyone.
I was never told to watch out for certain symptoms that were early menopause signs.

There needs to be a specialist nurse who knows about cancer and fertility too. Much later, I went to a gynaecologist and it was a kick in the teeth to be told they could have saved my fertility, no one fought for my fertility even though I wanted to save it.

It doesn’t feel like they see the whole person, what you will lose and how it will affect you, by the time I was told I had cancer I was told I had “no time” to save my fertility – but they were talking over a month in my case.

An anonymous cancer survivor told me "This is so important for young children suffering with cancer and needs more input. I had NHL in 1984 at the age of 4 and had no fertility follow up after treatment. Please change this for others as its crucial for life choices."

A cancer patient called Lauren Shute on the University of Leeds website said: (Quotation from article link below)

 “If I decide I want children in future, my tissue could be put back into my body to restore my fertility. And because my tissue is being stored for so long, I don’t feel any pressure to have to rush to make a decision about this, so I’m really fortunate.

“I feel so grateful for the opportunity this has given me, but also sad and often guilty that this is not available to all the children that need it. It seems unfair to me that there could be funding for this for one person but not for someone else, especially when we have the capability now to do these procedures.

“I was lucky that there was money available through a charity to preserve some of my ovarian tissue, but more stable funding for tissue preservation through the NHS would be amazing, to ensure every child gets the same opportunity I had.”

"Young people who survive cancer risk missing out on the chance to have children, due to inequalities in fertility preservation services across the UK, new research has found. 

Fertility preservation involves collecting sperm, mature eggs or tissue from the testicles or ovaries to freeze and store until needed.

The researchers from around the UK, led by the University of Leeds and Leeds Teaching Hospitals NHS Trust, are calling for central NHS funding to be made available to ensure equality of access to fertility preservation for all child cancer patients across the UK.

About 1,800 children aged 0-14 years are diagnosed with cancer each year in the UK. For up to a fifth of these the disease – or its treatment – causes significant damage to their reproductive organs and threatens their future fertility. National and international guidance is that fertility preservation treatment should be available and should be offered if appropriate in these cases. But the research found serious inconsistencies in what children are offered.

The main inconsistency was that mature sperm and egg storage, for children who had gone through puberty, was generally funded by the NHS, but testicular and ovarian tissue storage for younger children or older children too unwell to store mature eggs, was generally not funded by the NHS.

The research team analysed questionnaire responses on the issue from 18 of the 20 specialist children’s cancer centres in the UK, 13 in England and five across the devolved nations. The centres were asked about referrals for the different fertility preservation options, how these were funded and how long the funding lasted.

All the centres had made referrals for collection and storage of sperm and ovarian tissue, and fifteen centres had made referrals for collection and storage of testicular tissue. However, only six across the UK had made referrals for egg collection and storage, and this ranged from three of the five centres in the devolved nations to none at all in the Midlands and East of England.

Funding sources were also very unequal. Funding for fertility services is currently determined by local clinical commissioning groups, and so varies by region.

Of the 15 centres who did know their funding sources, all said NHS funding was available for sperm storage for post pubertal boys, and nine (60%) said it was available for mature egg storage.

All centres in the devolved nations were able to access NHS or research funding for testicular and ovarian tissue storage. But in England nine of the 10 centres said no NHS funding was available and they relied on charitable sources to fund this service.

The research also showed a wide variation in the length of time that storage for mature sperm and eggs was funded, with money for less than five years in some cases, while in others, storage was funded indefinitely.

In addition to calling for centralised funding which must cover an appropriate storage period, the researchers also recommend that a national advisory panel be established to help clinicians decide which children should be offered the choice of preserving fertility. The panel would be made up of experts from different disciplines, including oncologists, gynaecologists, psychologists, fertility experts and surgeons.

These recommendations would help to reduce geographical disparities, according to co-author Professor Helen Picton, a biomedical scientist and oncofertility specialist from the University of Leeds, who is also Scientific Director of Leeds Fertility at Leeds Teaching Hospitals NHS Trust.

Professor Picton said: “Luckily cancer in children is relatively uncommon, but that makes it harder for clinicians to decide if the treatment will have an impact on future fertility.  As the outcomes of cancer treatment continue to improve it is becoming increasingly important that young patients have the opportunity to access fertility preservation services that will enable them to safeguard their future fertility and improve their quality of life after surviving cancer.  Having an expert team available to provide advice and support will help ensure a more consistent approach is used across the country.”

The research was conducted on behalf of the Children’s Cancer and Leukaemia Group, the umbrella body for the specialist centres. Professor Richard Grundy, from the University of Nottingham, who chairs the group, said: “Having survived a life-threatening illness, it behoves us to maximise the quality of that survival; options for fertility preservation provide vital future hope for children and their parents. It is axiomatic that such options should be available uniformly across the UK.”

Co-author of the research, Dr Sheila Lane, a paediatric oncologist from Oxford University Hospitals NHS Foundation Trust, and Clinical Director of the Future Fertility Programme Oxford, a service offering fertility preservation treatment to children in England, said: “The impact of infertility at a very young age is devastating. Daily we see the difference being offered fertility treatment makes to children and their families. At diagnosis, it offers hope and a vision of the future many cannot believe will be possible and in the long term it gives them confidence to make relationships knowing that their life choices are not defined by their cancer and infertility. Central funding and equity of access to fertility treatment for both boys and girls is essential. We need to be able to offer to our children the treatment they deserve and is available in other countries with similar health care systems.”  

The research was funded by the children’s cancer charity Candlelighters." -

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