Over the past few decades the NHS has made very good progress detecting and treating cancer. This has been a fantastic achievement, but as a result we’re facing a new challenge: how do we care for and support the vast numbers of people surviving or living for years after a cancer diagnosis?
For many people, a diagnosis of cancer means more than just a physical illness that is treated by surgery or chemotherapy. It means anxiety and depression, lost income and worries about how to pay the rent. It means struggling with meeting caring responsibilities or even just looking after themselves while dealing with long term treatment side effects like fatigue or memory loss.
Research from the Scottish Cancer Patient Experience Survey that showed that while 94 per cent of people rated their care as good overall, when it came to having their wider emotional, practical and financial support needs met, many people said they didn’t get enough support.
This, combined with research showing that the number of people living with cancer is expected to reach 360,000 in Scotland by 2030, from 220,000 in 2015, means that the need to find new and more effective ways to support people with cancer is clear. However how to create and embed that change, is not.
Attempting to change how the NHS operates is perhaps one of the most challenging undertakings anyone can face. Any single NHS hospital is one of the most phenomenally complex organisations to ever have been created, containing passionate, hard-working people who work relentlessly to give patients the best possible care.
So, when someone comes along telling them what they are doing isn’t good enough, that they need to change and that the outsider knows exactly how to fix everything, it’s not surprising they’re met with scepticism.
The NHS isn’t a machine where a lever pulled in one area creates predictable and controlled change along the line. It’s an ecosystem. And every hospital and health board has its own unique finely balanced system, honed over the years to fit the needs and challenges of the local area.
When you expand that to consider how hospitals work with primary care, social care and charities providing services, the ecosystem becomes a jungle.
However, that doesn’t mean that change is impossible. It means it needs to be done right.
That means getting comfortable with trying new approaches on a small-scale and being prepared to learn from failure as well as success.
This is the ethos of Transforming Care After Treatment (TCAT) programme, being delivered by partners including Macmillan Cancer Support, the Scottish Government, the NHS, local authorities and a range of charities.
The programme is made up of 25 different projects across health and social care. They all have the same aims – to give people with cancer back control and make sure they get the care and support they need and want based on their individual circumstances.
Where the projects vary is in how these aimed are achieved.
The challenges in delivering cancer care and support to those people on the Western Isles or the Borders aren’t the same as in Glasgow or Edinburgh. That means the solutions can’t be identical either.
The strength of TCAT is that it understands this and from the outset allowed projects to find their own way of working, so long as the outcome was high quality of care and support for people with cancer.
One example of this flexibility is the assessment of support needs that is a core element of TCAT. Almost every project offers this, however some are offering the assessment face to face, others on the phone. A few are even offering it online, teamed with face to face contact when the person with cancer wants it.
Of the 25 TCAT projects, 13 have been completed and have reported. There is something to learn from every one of them. With another 12 to report, there is no doubt TCAT will provide health and social care services with a rich well of best practice and learnings that can be used to improve cancer care and support in every area of Scotland.
Some brilliant examples of best practice that have already started to spread from TCAT, with patients and staff the biggest cheerleaders for the new approaches. However we can’t become complacent.
Changing how the NHS operates is tough. Changing the entire cancer care system including social care, will be momentous.
We can do it, but it means every health and social care leader across Scotland looking at the best results from TCAT programme and challenging themselves to replicate those results in their own areas. They might need to do it a bit differently and that’s fine. What matters is that the growing number of people with cancer get the same good quality care and support for as long as they need it.
Jeff Ace, chair of the Transforming Care After Treatment programme and Chief Executive of NHS Dumfries & Galloway.