Advice on making an individual funding request

[starfivebyfive]

Hi,

Has anyone successfully made an NHS England individual funding request? My Mum has had a reoccurance of her stage 3 ovarian cancer. For some reason she was not offered Avastin as first line treatment, which is funded on the NHS. There is strong evidence it works for second line, but its not NHS funded yet in these circumstances. Any advice would be much appreciated.

We have asked her consultant who is currently considering this.

Hoping it does not come to the private route but has anyone had any experience of this for Avastin?

Thank you

[Neona]

No experience of this but would be interested in any answers

[koffeekat99]

I’ve just made an IFR for an unrelated treatment and condition. The rules are quite cumbersome as the IFR route seems to be about making treatment available in exceptional circumstances but also proving it will work and not be detrimental. You must have the support of a doctor as they are meant to make the formal request.As long as your doctor will support your request then give it a go. If not possible and its to do with policy then could you write to your MP?

[starfivebyfive in reply to koffeekat99]

Thank you. Can you let me know how it turns out for you? Hope its successful.

[koffeekat99 in reply to starfivebyfive]

Hi. My IFR was initially turned down as they said it needed more evidence to prove benefit was exceptional. We appealed as we felt they hadn’t considered all aspects of my case and the appeal was successful.This was for my other chronic condition so not cancer related. However if you can find something in your case that you think is particularly relevant and hasn’t been properly considered, you could ask your doc if it’s worth an appeal. It only took a few days to hear back on appeal.

It does seem to be very hard to qualify for IFR unfortunately as it has to be exceptional.

Did your mum miss out on Avastin initially because of rule changes? Maybe that won’t affect a lot of people as new cases would get Avastin under the latest rules?

[starfivebyfive in reply to koffeekat99]

Thanks will discuss an appeal with mumand doctor. She missed out in first line due to the pandemic. She moved to Scotland from England as it was the best place for her to shield in the pandemic and be supported/cared for. Pretty exceptional in my book.

In Scotland avastin is only given for stage 4 not stage 3 like in England. So she missed out for that reason.

[koffeekat99 in reply to starfivebyfive]

Definitely speak to doc re appeal. Mine was because of a move where CCGs had different policies. I agree that your mums case sounds like the kind of thing the IFR could reasonably cover as its about geographical differences in policy, a pandemic and as you say there is evidence that Avastin could still be of benefit. Doc could write a covering letter drawing attention to what you just said. Good luck.

[starfivebyfive in reply to koffeekat99]

The individual funding request board still rejected the request unfortunately. It was not seen as exceptional enough circumstances. If moving to shield due to a global pandemic is not exceptional circumstances i don't know what is... Thanks for advice and hope others have better luck.

[koffeekat99 in reply to starfivebyfive]

Sorry to hear this. I’m told it’s very difficult to get an IFR approved but I think it’s always worth trying.I hope there is other treatment for your mum.

X

[OvacomeSupport Partner My Ovacome Team]

Hi there starfivebyfive

Thank you for your post. I see you’ve had some replies from our forum community so just wanted to share this Macmillan resource about what you can do if a treatment is not available: macmillan.org.uk/cancer-inf...

I hope this information is helpful for you and your mum. Please don’t hesitate to get in touch on 0800 008 7054 if you would like to talk things through with a member of our support team. We’re here Monday – Friday, 10am – 5pm.

Best wishes

Annie

Ovacome support

[starfivebyfive]

Hey all, just to let you know the request was unfortunately unsuccessful. Hope anyone else has better luck. Feedback was that circumstances were not exceptional. Cheers

[Nicky100]

You could also try crowdfunding, which I did. x