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Fiona Loud

Policy Director British Kidney Patient Association

Taking care of care


Week in week out we get the relentless message that the NHS isn’t doing a good enough job, is letting patients down and is going to, or already has, failed.

This message can act as a self-fulfilling prophecy if we do not take care of care.

But every day we in the third sector hear from and support patients who are receiving care from the NHS. It’s not always perfect by any means and we can and should challenge where appropriate. But thousands of patients are being kept alive by dialysis or have received a transplant. These people know their bodies really well, because for most of the time they are caring for themselves. They are mostly very grateful to the NHS but frustrated as what they see is duplication of effort, illogical cost-cutting. They also have big challenges in quality of life – dialysis is a restrictive and challenging regime with what are frequently unpleasant side effects.

My contention is that patients really hold the key to saving the NHS but the NHS has to trust us and work together with us to collaborate in solutions, and empower us to do so.

Firstly I would like to talk about empowerment for people with long-term conditions. Most of them are experts in their own bodies – help them to self-care, which means educate and enable. And when they need to self-refer, let them do that.  For example let’s say someone on dialysis needs help at the weekend but their local hospital does not specialise in dialysis. Should they go to their specialist unit?  Should they be seen by a generalist? Our patients report that going to the hospital with the specialist unit is the best way to get the care they need, but by being seen by a generalist first there can be a decision on whether to admit or send home.  

Secondly, listen to us – don’t ‘include’ us, but work with us.  Let me give a parochial example – 2 years ago in anticipation of changes in the NHS the kidney community took the proactive step of pooling our resources to create a series of ambitions for future care.  The concept, design and project management were initiated by close working between patients and healthcare professionals. There was a 50/50 split in the work and the output is a resource from which at least 3 important programmes of work have developed. But now NHS England is reorganising the way it deals with specialised services, and has forgotten to include patients and practitioners in its plans.

What we do not need is another reorganisation.  We need clinical leadership, accountability and less political meddling.

We are ready, able and willing to work together. Our patients want to engage in their own care. There is no one way ‘to save the NHS’. But there are untapped resources out there who can help

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