What a six-year-old girl’s story tells us about NHS funding

Cases like Katie’s help us to engage with the consequences of political decisions and weigh our priorities for the ballot box far better than another story about the funding crisis or waiting times

As The Independent’s health correspondent, I come across heartrending tales as often as I delve through piles of dry press releases and academic journals. But a story this week helps explain better than most the tension at the heart of the NHS, and the difficulty we face on a daily basis when choosing what stories to focus on and how we cover health.

Six-year-old Katie Stafford’s family has launched a legal challenge against the NHS after she was denied funding for Orkambi, a cutting-edge cystic fibrosis drug that could prolong her life. The treatment helps CF sufferers keep their lungs clear, slowing by 40 per cent the damage and scarring that will make a lung transplant a lifesaving necessity for many of the 10,000 people with the condition in the UK. But at £101,000 per patient per year, the drug is not routinely funded by the NHS and Katie, who also has a learning disability, was not deemed to meet the exceptional circumstance criteria.

Anyone reading can understand instinctively a parent’s fight for funding. I’m sure the people who made the tough decision to reject the consultant’s recommendation are no different. But as much as we would wish it otherwise, the NHS does not have enough money to help everyone anymore – and an eight-year funding squeeze, during which demand only increased, has not helped matters.

The decision about which drugs the NHS will fund is taken by the National Institute of Health and Care Excellence, or Nice – a name which belies the cold calculus of its role.

It’s very easy to see it as the body which reduces the lives of people like Katie to lines on a spreadsheet, but the reality is that each drug it recommends is paid for at the expense of someone else’s care.

Cases like Katie’s help us to engage with the consequences of these political decisions and weigh our priorities for the ballot box far better than another story about the funding crisis or waiting times.

We also have to be aware that by oversimplifying or ignoring the realities of these decisions, such cases can become ideological cudgels with which to beat those in a no-win situation.

It’s hard to deliver both sides in every health story and every headline – but that’s what I strive to do.

Yours,

Alex Matthews-King

Health correspondent