Thursday, 10 July 2008

Second national kidney transplant patients' forum 28 June 08

Listening to patients can be difficult. Not because they use difficult and incomprehensible language but because they may have things to say that make me, as a healthcare professional and now policy advisor uncomfortable. The National Kidney Transplant Patients Forum, now in its second year, provides an opportunity for people who have received a kidney transplant to get together, to share experience, learn from one another and make some of the points that might not otherwise be heard. The forum hasn’t been set up with rules and regulations so nothing is off limit. It seems to me a good way to engage with patients.
People want to know lots more about the drugs they are asked to take – how they work, what side effects, how do you really know you are on the right dose? People want to know about getting back to work – the stories and the work arounds I heard provided a rich tapestry. Nutrition, diet, recipes.
By the very nature of the condition and the self selection to attend the group may not be truly representative as they say on Question Time. Not that unrepresentative though – people from far and wide, of all ages, from all backgrounds and cultures but with one unique thing in common – the gift of a kidney.
Meeting with patients in these kinds of settings is easily the most satisfying aspect of the job I am doing at the moment. The views and comments help shape policy and deliver implementation strategies. Public and patient involvement in every aspect of the NHS is one of the key levers in bringing about transformational change – apologies if that sounds a little bit of a buzz phrase – but put more simply, doing the right thing, in the right place, at the right time, every time.
Dr Faieza Qasim (Consultant Renal Physician, Manchester Royal Infirmary) has been the organising force behind the forum but those attending the forum have shaped the programme and set the agenda. The programme and workshops were, quite rightly, dominated by patients and carers with healthcare professionals including Bernie Boruch (Renal Social Worker), Jon Courthold (Clinical Psychologist), Marc Vincent (Senior Renal Pharmacist) and Emma Goulding (Clinical Scientist, Tissue Typing) providing great support and information; but I think the questions were really being answered by the patients working together.
Marinella Crane did a marvellous job on sorting out logistics for the event which was held at Chancellors Conference Centre. The venue is set in extremely convivial surroundings in Manchester (no, that is not an oxymoron!) and 28 June was a beautiful sunny day. I had been asked to give a short presentation on “improving outcomes in advanced Kidney disease”. I talked about safety, experience and outcomes of care – 3 of the key patient facing dimensions of quality. Of course I learned more from listening than from talking.