In the second of our series of blogs to mark Friends and Family Test Spotlight Week, a patient living with long term conditions explains why feedback is so important:

In an average year I have 34 appointments, roughly once every 10 days. This is without emergency A&E visits, blood tests etcetera

Consequently, the NHS is really important to me, not just the fact that it is there, but it is important to me that it works in a way that suits me.

My interactions with the NHS are not just defined by the number of days spent at appointments. It has a knock on effect on my life in general, my work, relationships and so forth.

Does the NHS always work for me? No, of course not: it surely cannot accommodate all of our wants and needs. But, as someone who regularly “walks the patient journey” through the NHS, I feel strongly that the unique perspective gained during all of these interactions gives us a powerful voice in the decision making processes in the NHS.

From the car parking, cafes and toilets, to treatments, operations and discharge lounges – and everything in between – we are able to comment on the quality of each of the services we receive.

Often we have constructive comments to accompany any criticism we have, for example staff could provide feedback that a headache clinic is inappropriately lit for patients and propose that the clinic is relocated. With patient involvement what would become evident is that access to a spare consultation room as a quiet room would be adequate to solve this problem.

Where patients often have a unique comment to make is where the journey takes a wrong turn or two! While we do experience each department, each commissioned service or pathway, what we also experience is the interplay between them: when the doctor prescribes a medication that the pharmacy does not stock, when you need a CT scan before your next appointment but the scan is scheduled for a month after the follow up, when appointments are made available a month in advance and it means you have to take unpaid time off work as it is too late to change shifts.

We offer a practical viewpoint when all others bring a purely hypothetical one.

We can, and are, encouraged to provide feedback at most appointments we attend nowadays. We need to give this feedback, no matter how small it seems – it is a piece of the larger jigsaw – as long as where we offer criticism we offer realistic solutions too.

It is important that it’s not just a feedback process: suitably ‘qualified’ patients should be involved in the development and commissioning of services to ensure they ‘make sense’ to start with.

Leading the way here is NHS England who place emphasis on embracing the patient voice in all areas of their work. Since I became involved with NHS England I have been asked to participate in more events than I could have imagined and my experience feels genuinely valued.

This week I will be given a voice at the national Patient Insight and Feedback Conference in Leeds. It’s another chance to remind people that patients are not just numbers and targets. We are the people with first-hand experience.

I have learnt a lot of things in my 20 years as a patient living with complex long term illnesses, however, I do like to remind people that I also learnt a lot in my decade at university and my 35 years of life.