Statistics tell us that 1 in 2 will face a cancer diagnosis in their lifetime. Flipped on its head, that means 1 in 2 of us will never know what it feels like to be told that they have a potentially life threatening illness. In seems incredible then, that some of us have the privilege of shaping, managing and leading services for patients affected by cancer without ever truly walking in a cancer patients’ shoes.
Fortunately in Greater Manchester, we’re doing things differently. We recognise that the sharing of experiences and opinions from those who have lived and breathed cancer or ARE living and breathing it, can help make sure that the care provided is what people really need. We realise that the more intelligence we have, the more likely we are to be relevant and meaningful, hence the Macmillan funded User Involvement service in operation. The service, established in 2015 involves a bank of circa 100 volunteers who have all been affected by cancer in some way. Some carers, some former patients in remission, and many patients currently LIVING with the disease.
I’ll be honest, I was sceptical at first (sorry Claire!) but after six months in post, I can confirm, it’s definitely not a tick box exercise. This is genuine co-production. Our “experts by experience” are a crucial and substantial piece in the service improvement jigsaw, with the same gravitas as the Clinical Oncologist, the same equal voice as the Surgeon, and the same seat at the table as the Clinical Nurse Specialist. User involvement is the true golden thread entwined in ABSOLUTELY EVERYTHING we do, to the point where it’s not even a “thing”, it’s just normal run of the mill practice. It’s second nature. There’s a noticeable and genuine shift in authority here that’s embedded at every level.
Having worked in the health and social care arena for over six years in a variety of settings, it’s clear that this service is like no other user involvement offer I’ve seen – for a start it’s the only public sector job I’ve had where I’ve been interviewed/vetted by a member of the public – and rightly so! If that doesn’t say something about the Greater Manchester Cancer ethos, I don’t know what does! Coming into the team with a fresh pair of eyes, the Greater Manchester Cancer User Involvement model is definitely a feature that stands out to me and I can’t help but wonder why there aren’t more models and elements of routine practice like this adopted more widely across our region?
Consumer insights seem to be well versed in the private sector with mystery shopper schemes; customer surveys; and consumer “testing labs” to drive innovation. In fact, instantaneous customer feedback has become standard for successful brands to help them trail blaze. The public sector is no different. So why does it feel one step removed?
The uniqueness and originality of the Greater Manchester Cancer/Macmillan User Involvement model flourishing in a resource-strapped system can almost feel luxurious… but it’s a necessity. The richness of insight shared in this forum is uncanny and on another level to that derived from anonymous surveys.
There’s something unique and precious about those who have lived experience of cancer and we’re fortunate to be gifted with voices with a shared understanding of need who can craft solutions to make cancer services in Greater Manchester better.
The fact is, how do we have any chance of meeting patient expectation (let alone exceed it) without their input?