What patients want

10 August 2012

Ciaran Devane

At Macmillan, we have for several years had an ambition statement which said we want to reach and improve the lives of everyone living with cancer. We know now (though we did not when we wrote the ambition) that ‘everyone’ means two million people living with cancer in the UK.  We want to reach everyone because irrespective of who you are, where you live or which cancer you have, you should get the best treatment, care and support.

The tricky bit was to understand what ‘to improve’ meant. After much talking to people with cancer, their carers and their clinicians, as well as some research and some thinking, Macmillan published the nine outcomes people with cancer say they want (see table below). They form the basis of Macmillan's strategy and everything we seek to do should be aimed at doing them better and for more people.

What is interesting is how shared the outcomes are with other conditions. Take a look at Fig 1 of the Department of Health's and you will see how Macmillan's nine cancer outcomes have effectively been adapted for another cohort of people.

Furthermore, take a look at the document (produced by the ten leading health charities) and you will see the same logic including early intervention, self-management and co-created health being affirmed across the whole spectrum of patients from Alzheimer's to stroke. My point is that what patients collectively want is clear. It is being well articulated by patient organisations. And it is not rocket science. What it needs is the will to do it, at the right level.

Sitting in England, it can be difficult to escape structural NHS reforms. But it is worth remembering that without an Act, the fundamental situation those of us with a UK role face in Scotland, Wales and Northern Ireland is really no different. The population is ageing, patient experience and outcomes are variable, money is short. In all four jurisdictions, high quality, patient-centred, cost-effective care is the goal. And in all four jurisdictions, the same nine outcomes apply.

That said, having recently joined the band of NHS non-execs in England, I would make the following observation: as we speak, the executives, the managers, the clinical and non-clinical staff of the NHS continue to work superbly to deliver quality day by day, to squeeze budgets, and to simultaneously build the new NHS system in England. One example from the Commissioning Board Authority: we need four thousand people to be functional. Last time I counted we had seventy five, many having to cover their previous role in addition. It will be months before enough people are in place with the new organisational model and behaviour in their blood. The potential impact for good of the new system will not come tomorrow.

When it does come, that impact needs to address the nine outcomes patients want. The good news is the five domains of the NHS outcomes framework will, if that delivery is balanced across the domains, move us along the path. My hope is that once the structural changes the English NHS is seeing are out of the way, we can get on and accelerate the development of the services and pathways patients need.

Ciaran is Chief Executive of Macmillan Cancer Support.

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