One night about a year into the current “reorganisation” (aka upheaval) of the health service, my GP rang at 9.50 pm to give me the results of a blood test. “What on earth are you doing still at work?” I said, grateful though I was for his dedication.

At our next Patients Participation Group (PPG) meeting we had a refreshing and forthright discussion with staff about the real pressure the surgery was under—GPs, nurses, and reception staff alike—to carry on giving us the service we needed and they, as professionals are committed, against the odds, to providing. I think initially there was some wariness that a “PPG” with its “action plan” might just be one more thing in the long line of QOF’s, QIPP’s, DES’s etc sent to keep them firmly wedged between “the rock and the hard place.” But it was at that meeting that we committed ourselves to doing what we, as a local patients group, could do to help tackle that no 1 issue for the whole of our NHS—lack of adequate resources.

I first came to hear of the Avastin/Lucentis issue by chance from a friend visiting from Ireland who is an ophthalmologist. The more I googled about this the more I couldn’t believe it. Drug B costing 10 times less than Drug A (the licensed option), proven worldwide to be just as effective in treating macular degeneration (I know how devastating that is, my dad had it) could not be prescribed in the NHS because Roche, owner of both drugs refused, wait for it, “for commercial reasons,” to sanction the cheaper drug’s use for this condition—and just this one instance is costing the NHS £102m a year! As so often comes to mind since the passing of the Health and Social Care Act in 2012, “you just couldn’t make it up.”

I took this to the PPG network which we have in the London Borough of Harrow where the incredulity at the situation, and more to the point the astonishment that nothing had been done about it, was unanimous. As the election was looming and this is a marginal constituency we decided to raise the issue locally at the CCG meeting and write to Jeremy Hunt and Andy Burnham asking that they listen to the overwhelming cry from the medical profession and “local voters” and get it sorted.

We have had two “fob offs” from Jeremy Hunt, the last one apparently passing the buck to NICE and nothing from Andy Burnham.

I say “fob offs” but when I read the excellent feature in The BMJ it is more than that. In our latest response to the secretary of state we said, “like so much of what is put out for public consumption by all parties in the election hiatus, you rely on the fact that very few of us will actually have access to the ‘full picture’ or the time or necessary knowledge to digest it. That is why it is so important that those in the know such as the doctors and medical professionals cited in this article have the courage and personal conviction to speak out.”

Call me naive but I just can’t believe that this one is not winnable if we work together and keep the pressure up. So please if you are a CCG member, a GP, nurse, consultant, or patient don’t wait for someone else to act—every little counts.

A person who is a great source of inspiration in this respect is Rosa Parks, the American civil rights activist whose decision on where she sat on a bus had such repercussions:

“Stand for something or you will fall for anything. Today’s mighty oak is yesterday’s nut that held its ground.”

Competing interests: I am employed by the London Borough of Hammersmith and Fulham as a Housing Environmental Health Officer.

Robert Sale is a Patient Participation Group (PPG) member at his local surgery and a Committee Member of the Harrow Patient Participation Network, an umbrella group for all of the PPGs in the London Borough of Harrow.