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

Comments: 5


Jonathon Hope

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.


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#948 Louis Kleinman

Jonathon was as moving on the video as he was at the conference

#952 Karen Edmunds
NHS employee, disabled person and carer

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.

#953 James Munro
Director of Research
Patient Opinion

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.

#954 Tess

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

#957 Katy Hancock
Shared/Self Haemodialysis Care Educator
Sheffield Kidney Institute

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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