Our son Jake is 13. He suffers from a rare genetic progessive disorder, Leigh's Syndrome. It has paralysed him and left him in a wheelchair. He is in constant pain from muscular spasms. His drugs don't work like they used to and he has a dislocated hip and ankle. His highly experienced consultant wants him to have an operation to help him suffer less pain. It's an exceptional operation - not the norm but his consultant and doctors think it is worth trying.

On the 26th Febuary 2014 a committee sat and decided to deny an Individual Funding Request of £9828.00. The principle reason they gave were all economic. They amounted to arguements that "others will want it" and "policy on expenditure will need to be changed at a national level." We wonder they have looked at his life expentancy and don't think it's worth the investment.

There is not much else that can be done. We could lose Jake like we lost his brother Robert. But as his parents we will move heaven and earth to make sure he has as painfree a time whilst he is with us. He has suffered enough.

Meanwhile, the NHS will go on funding boob jobs, highly paid management consultants and hundreds of thousands in payouts to managers they make redundant only to rehire a few weeks later. In comparison, Jake's Individual Funding Request is a drop in the ocean.

If you think the NHS needs to prioritise patients in its budget setting and reconsider the pallative care investment for Jake, please sign below and pass this on as widely as you can.