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Guest editorial Wednesday 18 May 2011: Why the NHS cannot afford to skimp on patient engagement

Mike Hobday, Macmillan Cancer Research Head of Campaigns, Policy and Public Affairs, suggests that the efficiency gain £20 billion nettle can be grasped alongside reconfiguration, if we deploy the NHS’s key under-used asset: co-production with patients.

Many of us who have spent our years debating health policy and politics have personal experience of at least one of the myriad ‘save our hospital’ campaigns that Britain has seen over the last twenty (or more) years. For politicians, fighting for the most visible symbol of the NHS that their constituents love has been a no-brainer; certainly ever since David Lock, once the Labour MP for Kidderminster, dared to accept the clinical advice that his hospital was underperforming in its treatment of his constituents.


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No wonder Andrew Lansley is finding it hard to make a decision on the future of the Chase Farm Hospital - there are at least two Conservative seats at risk, and a general election in four years time.

It’s a basic and universal tenet of health policy that care needs to shift from hospital setting to the community. We want to support our ageing society to manage our various long-term conditions, and we want to provide the right support in the right place. This is often closer to home than the local District General Hospital.

Yet none of this support is affordable unless actual costs are reduced elsewhere. New self-management support is merely an additional item on the NHS’s bottom line costs, unless the hospital wards that are no longer needed are shut down.

’The NHS, both locally and at Richmond House, has singularly failed to offer a convincing case.‘But still, despite the urgency, the NHS, both locally and at Richmond House, has singularly failed to offer a convincing case. When my local Primary Care Trust recruited its non-executive directors, a plethora of accountants (if you’ll forgive the imprecise collective noun) were appointed and very quickly grasped the unaffordability of the present configuration of healthcare.

Even more quickly, the local public grasped that the consequent changes were accountancy-led.

The public are not stupid. Cost cutting looks like cost cutting, and isn’t inherently attractive - especially when local politicians of all parties are busily building their support by offering up an alternative vision, where the hospital remains intact.

The £20 billion question
With £20 billion in efficiency savings to be found, we need an urgent answer to the simple question - how can the public be persuaded to accept (and vote for the politicians who accept) necessary re-configurations of services?

Andrew Lansley thinks he has the answer - given that hospital doctors singularly failed to don their white coats, and take to the public stage in support of their PCT financial paymasters, he’s decided to force GPs to do so. Your local, friendly GP will be able to sell hospital closure far more effectively than the wisest NHS manager - and will indeed have to do so when responsible for the financial bottom line.

Yet this analysis misses the strongest tool in the box - the patients themselves. Patients have the motivation and expertise to help to redesign the services they need, and the subsequent ability to help sell these changes to the public.

Take cancer care at end of life, for example. NAO statistics from 2008 show only 25% of cancer patients die at home.

Yet Macmillan’s research suggests that 73% would like to spend their final days at home if the support they needed (access to pain relief, out-of-hours care and support for their family) were available.  The lesson is clear - cancer patients would tend to support a substantial shift from hospital to home-based care. There would still be a need for some hospital-based palliative care, but less. Ward closures could be presented, quite rightly, as the natural consequence of better cancer care.

So why doesn’t Macmillan rise to the challenge, and launch a national campaign for ‘less hospital beds’? Perhaps we should - but in fairness, the responsibility to engage with and give voice to the patient experience and expertise is a shared one. The NHS has a part to play too!

And it shouldn’t be difficult. Numerous patient groups have a vested interest in enhancing community or home-based support. Tragically, even scandalously, their voice is still to be mobilised.

In cancer, in mental health, in a variety of conditions, expert patients have been recruited and trained. They are anxious to share their experience in order to benefit future cohorts of patients, and to help shape the development of our social care system. Macmillan alone has 2,700 trained ‘cancer voices’ able to do this.

Yet it’s unrealistic to expect patients to speak up if they are not able to contribute. Engagement, at the very simplest level, must be a two-way street.

It’s welcome news that the debate on the NHS health reforms, in particular the pause, has led to an acceptance that nurses, pharmacists and hospital doctors have a role to play in the commissioning of our health care. But the case for genuine patient representation on the boards of GP commissioning consortia, and amongst the non-executive directors of the NHS commissioning board is a compelling one. It needs to be made more loudly.

We can recruit the help we need. But this must mean more than just personal experience as a patient or carer, it requires a thorough understanding of the patient perspective.

Only then can we reconcile the healthcare system we want with the one we can afford.