Most of my involvement over the last year as a member of the UK Renal Registry Patients’ Council has been with Think Kidneys. When I started I found a very different pace to previous experience. I received 20-30 emails a day and I didn’t understand most of them, or how to respond. It was like being thrown into a fast flowing river or coming in half way through a foreign language film! I got the sense of the workstream discussions quite quickly, but any contributions are from my professional management background not as a patient.
There can be a real communication problem here for patients. No lay person entering a specialist discussion likes to stand up and ask questions that show they don’t understand what’s going on; the safe course is to keep quiet, after all the meeting is there to get business done not to act as a training session for you. The risk is that patients may not have the confidence to make put forward their views, especially in the more technical workstreams and that could render their attendance as being of little value. Induction and glossaries help, but the more that can be done to assist the process of getting up to speed the less risk there is that the patient voice will be lost.
The thing that has made the most difference for me was a recent Think Kidneys team meeting. It gave me a good overview and I began to understand both the project and how my workstream fitted into it. I felt part of the team through the group discussions, which were more informal than workstream business meetings. It made me more aware of the achievements and sheer enthusiasm and professionalism of the enterprise, all managed in a very informal, friendly way. I’m proud to be part of a group like that. I suggest events like these should be mandatory for all patient reps – you get such a huge payoff for the time spent, and the opportunity to present a clear and informed patient voice.
In summary? Well, looking back over the last year there is one overwhelming impression – of welcome, patience and a genuine desire to enable patients’ perspectives. But please NHS, fewer acronyms and abbreviations!
Peter Naish
Peter originally trained to be a priest and studied theology at King’s College London. Most of his career has been spent in areas of social concern and social justice. He was CEO of the Equal Opportunities Commission, involved with housing associations, chaired the National Federation of Housing Associations and was a member of a National Inquiry into Housing chaired by the Duke of Edinburgh. He was a member of the government’s Social Security Advisory Committee for several years. Best of all he ran a large animal shelter for three years.
He was a Special Trustee at the Great Ormond Street hospital, Chair of a Bedford Family Centre and of Amber valley Homestart. Peter and Sue, his wife, were on the verge of adopting two children after a year’s training, having purchased a house near schools and playground in a different part of the country when what seemed to be flu turned into AKI. He barely survived. The adoption couldn’t go ahead and life changed for both of them, utterly. Coping with that was traumatic, and still is, the scars don’t go away.
After ten years, eight on CAPD, Peter had a transplant seven years ago. The energy that gave him has let him get involved with renal projects and to give something back for all the care and support he’s had from the renal community. He is involved with a number of Renal Registry projects, nationally and locally. Peter’s interest in housing continues with his membership of an audit and risk committee of a local housing association.
Peter lives in Derby with his wife Sue and elderly bearded collie Rufus. Life now is reading, music, walking the dog and beginning to write poetry again