The dialysis summit at the House of Commons attracted a big audience that filled the Thatcher room on 12 July. Evan Harris MP from the All Party Kidney Group chaired the meeting and kept us pretty much to the agenda. We did stray a little into transplantation as you might expect for at least 3 reasons. Evan is passionate about the subject, it is key issue for many people approaching or on dialysis and of course it is National Transplant Week. In addition to the MPs the audience included patients, carers, advocates, commissioners, dietiticans, renal nurses, renal consultants, colleagues from industry and of course the National Kidney Federation Officers and secretariat who had arranged the day.
Capacity was of course identified as a key issue but there was an in depth discussion about patient choice and experience - Alan Watson (Consultant Paediatric Renal Physician from Nottingham) highlighted the psycho-social needs of people of all ages with end stage renal disease - and indeed their families. The transfer to adult units provides a stark contrast to what is available in childrens services. Our NSF Workshop on transitional care highlighted that in 2006. The key person in places where transfer works well is often the youth worker. The issues are generic and my colleague Sheila Shribman, Childrens and Maternity Tsarina has made some specific recommendations for good practice in her report "Transition: getting it right for young people". I am expecting our action learning sets from Birmingham and Great Ormond Street to identify the principles and provide pathways that will be useful up and down the country.
I was asked to do a scene setting presentation and focussed on 3 main areas - preparation and choice, capacity and patient experience (including safety). It was good to hear the progress has that has been made on vascular access - of course it is not all sorted but I am asking the Cleaner Hospitals Team, as they visit every Trust to discuss MRSA, to aks Chief Executives to fully implement the Winearls Report. It provides clear, measurable and acheivable recommendations.
There was also a discussion about "crash landers". Edwina Brown (Consultant Renal Physician, West London Renal Centre), cited the Danish approach of establishing such patients on peritoneal dialysis rather than haemodialysis which is the UK default. Jonathan Kwan (Clinical Director, St Helier Hospital), strongly advocated attendance at the formal "pre dialysis education sessions" for such patients. Home therapies, speed of transplant listing, transport of course and commissioning arrangements and pressures were all hotly debated. It was good to have commissioners in the room and I think that all appreciated Paul Jennings' (CEO of Walsall PCT and a member of my Renal Advisory Group), comments that "commissioners start from what's right for the patient and then look at how it is financed and procured". I can't quite remember who commented, but it was clearly stated from an experienced point of view, that the West Midlands must be a Nirvana. A discussion about access to the newer and more expensive phosphate binding agents ensued - so even Birmingham isn't yet perfect! The issue of supplementary prescribing by dietitians was flagged as a barrier to more efficient working and achieving better phosphate control. I will certainly be exploring supplementary prescribing further.
The first slide I showed was from the British Renal Society Patient Survey 2006 - the one that shows that less than 10% of patients get away from their base unit for more than 2 weeks every year. Bob Dunn (National Kidney Federation Advocacy Officer), made the point that the situation is worst for the eldest and poorest of our patients who are more likely to holiday in the UK than other parts of Europe. But it is not just holiday dialysis - away from base unit dialysis is needed for work, family commitments, pleasure and leisure. It is something that we must sort out