Jonathon Hope: why we must focus on patients when times are hard

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Jonathon Hope gives a frank and moving account of his experience as a patient with kidney failure and his work as Chair of the Guy’s, King’s & St Thomas’ Kidney Disease Modernisation Initiative.

More on transforming patient experience

  • Find out more about our Point of Care project
  • This was part of our Transforming patient experience annual conference, in 2011. This conference showcased the best of the Point of Care programme and provided a forum for clinical and managerial staff to explore the possibilities for achieving truly patient-centred care in the NHS.

Comments

Louis Kleinman

Organisation
SELCN
Comment date
17 November 2011
Jonathon was as moving on the video as he was at the conference

Karen Edmunds

Position
NHS employee, disabled person and carer,
Comment date
18 November 2011
Should be required viewing by everyone in the NHS - both providers and commissioners. It shouldn't just move us but rather make us determined to act to make a change. As Jonathan says it's about people's quality of life.

James Munro

Position
Director of Research,
Organisation
Patient Opinion
Comment date
19 November 2011
Jonathon Hope makes some excellent points - especially striking for me was that it took 22 years of using NHS services before anyone asked his opinion about how they might be better.
He finishes with perhaps the most provocative and important point of all: that he now sees his illness as a gift with which he can help others.
Yet it seems almost impossible in health care to move staff to the point where they understand that patients and carers are not just ignorant and needy recipients of care, but may have something to give too.

Tess

Comment date
20 November 2011
I have a long-term genetic renal disease that causes progressive kidney failure. I have never been asked my opinion in 30 years.

Katy Hancock

Position
Shared/Self Haemodialysis Care Educator,
Organisation
Sheffield Kidney Institute
Comment date
21 November 2011
Jonathon eloquently described the very best reasons for encouraging and facilitating patients to be more involved in their haemodialysis. We have been piloting shared and self care on the Peter Moorhead Unit since Aug 2010 and Jonathon's feelings are mirrored by the patients on our unit. A sister pilot is also going on at York Hospital and we are now planning to role the idea of shared and self care out to other units across Yorkshire and Humber. A number of our patients are regularly involved in Shared Care Forums and "have your say meetings" and are 2 are project board members for the shared care pilot. I could go on and on! Its wonderful to hear Jonathon wax lyrical about his experiences and to know that shared and self care really is the best way forward.

Katy Hancock
Shared haemodialysis care educator
Peter Moorhead Haemodialysis Unit
Northern General Hospital

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