Sunday 17 August 2014

In limbo...

It’s been quite a while since we’ve been able to give you any news on the blog, so we’ve felt a little out of touch with our lovely friends and readers.

As we write now, it’s still a bit difficult – we are rather in limbo.

It’s been quite a turbulent time lately: we thought we were close to being given an operation date, then we weren’t, then we had some exciting news about funding, now we’re in limbo again… shall we tell you the whole story?

We reached our fundraising target back in May as you know – and due to the generosity of many people continuing so support us, the funds have continued to increase.  We are now up to £70,000. Thank you!

We hit a huge obstacle at about the same time that our active fundraising came to an end.  We were told that rules around NHS co-funding might prevent the SDR operation actually taking place. Elliot’s Haemophilia means that he has to have expensive drugs every other day to reduce his risk of spontaneous bleeds.  These drugs are needed more frequently to ensure his safety during the SDR operation and could potentially cost hundreds of thousands of pounds.   Obviously we would not be able to cover this cost but the NHS is not allowed to co-fund an operation that is partly being paid for out of private funds.

Together with Elliot’s medical teams we were trying to work out if there were ways around this for quite a while.  We considered a campaign for assistance from local politicians and even thought about restarting the fundraising. The Haemophilia team at Great Ormond Street finally decided it would be unethical for us to attempt to pay, because he could need more treatment than our funds could cover.

You can probably imagine that this was getting quite stressful.  We were beginning to wonder if we would ever work it out, when NHS England made an amazing announcement. They are going to fund 120 SDR operations across the UK.  We didn’t quite know how to react! We got straight onto the phone to Great Ormond Street who confirmed that they are one of the centres that will be funded.

Where does this leave us?
It means that the cost of the operation itself is likely to be fully funded.  This is, frankly, beyond our wildest dreams.  The funding of the haemophilia medication may no longer be an issue because we wouldn’t be co-funding.  Likely and may are in italics for good reason – we simply have not had any confirmation yet and there is a lot of work ahead for various NHS departments to agree the process.  We were recently on South Today talking about how difficult the delays are.

When we began our fundraising we could not have imagined that NHS England would have made this decision.  So what to do with the money that you have all raised? Over half of the funds were going to be dedicated to Elliot’s post-op physio for up to two years. 

We hope that you will be as delighted as we are to think that the funds could now be used to help Elliot’s rehabilitation for many years to come.  The NHS may provide a minimum amount of physiotherapy, but the reality of the operation and his condition means that he will need more intense support for many years to come. Being able to provide this privately will have an immeasurable effect on his mobility and hopefully many other life outcomes.

So what now?
Well, we are still in limbo! There is tentative suggestion of a surgery date in October. We are trying to limit our excitement at the moment until we know for sure,  but we promise we’ll keep you informed when we have news to share.

Thank you for continuing to keep us in your thoughts and support us with your well wishes.  We can’t wait until the post operation days when we can finally sit down with confidence and write all our thank you notes and tell you about Elliot’s progress.  That time will come, soon!

1 comment:

  1. May God give immense health to Elliot and May his operation get successful. I am glad that you have got so many funds as per your requirement.