Dr Nick Tupper blog: Kidney patient’s call for help from NHS

019-2World Kidney Day takes place on Thursday this week, providing an opportunity to highlight the importance of kidney health.

This year’s campaign will draw the public’s attention to what can be done to protect kidneys and to help those who already have the disease.

It has particular significance for me this year after hearing the story of James Fenwick, a 32-year-old Doncaster man diagnosed with chronic kidney disease nine years ago who then received a live donation of a kidney from his dad.

Sadly, his transplant failed seven years later, when his partner Emma Ross was seven months pregnant with their first Charlotte, and he had to start dialysis three days each week. At the same time he was hit by a number of other health problems, including pneumonia and painful bone deterioration, which knocked them both sideways.

The prospect of managing so many life-changing issues at the same time took its toll emotionally and James suffered what he described as a mental meltdown. As the pressures mounted up he had asked for some counselling support but was told it was not available to dialysis patients.

James told his story on a specially produced video which was shown at our CCG Governing Body meeting a couple of weeks ago and Emma came along to answer some questions. We aim to have a patient story at the start of every meeting. It’s an opportunity for our clinicians to hear a Doncaster patient recall their experience of NHS care so we can see what lessons can be learned as a result.

Based on their experience, James and Emma asked for counselling to be available to families following diagnosis of chronic kidney disease and the start of dialysis, to help them get to grips with what will be a major change to all their lives.

It was a moving to hear, as it takes tremendous courage to be filmed recounting a low period of your life. We’re now looking at how we can enhance services to help people who are in a similar situation to James and Emma.

Meanwhile, Emma has the bit between her teeth and is also championing her cause with national kidney charities with some success. She contacted Kidney Research UK and their chief executive added her support, saying “you have raised a serious and significant issue in the management of patients with kidney disease and we will do what we can to amplify your message”.

James’s story underlines how important it is for NHS organisations like ours to listen to patients and to act where we see that improvements need to be made. Striving to achieve good outcomes and experience for patients is something that motivates all clinicians. It’s why we get up in the morning.

It’s a never-ending journey, but I believe patients now have a much louder voice than ever before.

Watch James’ story here:

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