"What makes me happy?"

Art can be a very personal thing. I myself like alsorts of different styles of painting , sculpture and performance art but particularly if there’s some fun involved – be that Holbein’s “The Ambassadors” which can be seen at the National Gallery in London – one could spend a lifetime working out what all the symbols mean – or Kristof’s wrapping of the Reichstag in a large white blanket! So my test is does it make me smile or think?

Being asked to judge the World Kidney Day childrens’ art competition came as a bit of a shock – I’m not widely known as an art critic . But it was one of those pleasant tasks that make the “it’s not just about the kidney” point fabulously well. Children were asked to draw, paint or colour-in on the theme of “What makes Me Happy?“ and the 3 categories were under 7s, under 12s and under 18s.

There were stunning drawings and colourings from all 3 age groups . Happy faces, sunshine, flowers – as one might see in any primary school art class up and down the land. Some of the boys had drawn tanks, cars – a Hummer I think, and play station consoles for the title “what makes me happy”. Kidneys were prominent and came in all shapes and sizes from the children who had received the gift of life.

They all made me smile so judging on my criteria was extremely difficult, the winners speak for themselves. Children and young people from the UK's paediatric renal units competed an the winners were (under 7s) Evelina Children's Hospital, (under 12s), Birmingham Children's Hospital and (under 18s), Yorkhill Children's Hospital.

One of the colourings by a 9 year old girl on dialysis made a big impression on me – “me having a a drink on dialysis”.

Poignant and worth more than a thousand words. I would just like to say well done children and thank you to the sponsors Gambro.

The waiting game – some people wait longer than others

A few years ago, the then Chief Medical Officer Sir Liam Donaldson drew attention to the limbo that people could find themselves in waiting for a suitably matched transplant in a chapter of his annual report on the state of the nation’s health entitled “The Waiting Game”. It highlighted the shortage of available organs in the UK in comparison to other countries, raised the issue of presumed consent and attempted to describe the reality of waiting for an organ to become available. Since then the Organ Donor Taskforce has reported and its recommendations are coming into force. The number of people on the organ donor register has increased from 13 million to over 17 million; but the wait isn’t over for more than 7,190 on the kidney donor waiting list.

Of course there are many more of the other 18,000 on dialysis and others with advanced kidney disease not yet on dialysis who have opted for transplantation but haven’t yet been assessed and listed. When does the clock start? It depends on your perspective.

Delays in transplant listing are a major cause of inequity. Dr Rommel Ravanan (Consultant Nephrologist) and colleagues at the UK Renal Registry and NHS Blood and Transplant have recently reported variation between renal centres in access to kidney transplantation. They looked at all the patients under 65 years old starting renal replacement therapy between 1 January 2003 and 31 December 2005, a total of nearly 8,000 people, and followed them up for 2 years to see who was transplant listed. They also examined a proportion of patients on the waiting list who received a transplant within 2 years of listing by following up 4,061 people on the waiting list before 31 December 2006 until the end of 2008. They found that after adjustment for case mix, that is the differences between patients at different centres, there is significant variability between renal centres in transplant listing, time to inclusion on the list and likelihood of transplantation. After adjusting for all the factors they could, Rommel and his colleagues found that, depending on which renal unit you attend, your chance of kidney transplantation from a donor after cardiac death of a living kidney donor within 2 years of being registered for transplantation, might exceed 40% or be less than 10%.

Such a big variation can only be explained by differences in the way renal centres practice. The authors comment that individual centres’ practice patterns determine the effectiveness and efficiency of the patient’s pathway, beginning with a diagnosis of end stage renal disease and progressing to renal transplantation. The report got less additional media coverage than I was expecting but the results have been keenly awaited by the kidney community. Each kidney centre has been sent details of their own performance. Of course, such a report doesn’t tell the whole story. In the absence of comprehensive patient specific data the results should be interpreted with caution; but each team should now be examining their own practice patterns. I would hope that most are involving their Kidney Patient Associations in those discussions about cutting out delays in time to listing and improving access to transplantation.

Of course all care is local and looking at local kidney care network and transplant data as well as looking at the national “league tables” will generate the questions about practice and quality. In the North West an annual regional transplant activity report has been produced for many years – it helps drive quality and improvement in outcomes. Titus Augustine (Consultant Transplant Surgeon & Clinical Director) and Sue Martin (Consultant Clinical Scientist & Transplant Lab Director), Central Manchester NHS Foundation Trust have recently circulated their 2009/10 report. As usual it’s full of fascinating information. The definition they employ for time to listing is from the formal referral by the kidney care team to the patient being placed on the national transplant waiting list – how come that time varies from 78 to 117 days in the adult units? What do our paediatric colleagues do differently to be able to list the children with 38 days?

Better transport saves the NHS money

People were all reading through the meeting papers and I noticed Neil Parrott (Consultant Transplant Surgeon, CMFT) looking quizzical and smiling to himself. It was the British Renal Society Workforce Planning Meeting in 2001 or 2002. When it came to the introductions and review of the last meeting’s minutes, all was revealed. Neil has been put down as representing the British Transport Society rather than the British Transplant Society! As the person who had checked the minutes beforehand I was a little flustered but we all chuckled and moved onto the agenda. Perhaps we should have taken the misprint as a serendipitous signal and considered transport within the scope of “The Renal Team, A Multiprofessional Renal Workforce Plan for Adults and Children with Renal Disease”, transport after all is a key quality of life issue for those on haemodialysis.

It is therefore fitting that the first renal specific example of good practice to be published on NHS Evidence is transport services for dialysis patients provided by Southend Hospital NHS Trust. In 2008/09 the transport costs for about 130 patients on haemodialysis were £277,000. Jacquie Tansley and Maggie Farrell also had concerns about the quality of transport. When reviewing their local results in the National Kidney Care Transport for Haemodialysis audit undertaken by the Information Centre, the Southend team, crucially involving patient representatives, realised for instance that transport planning arrangements hadn’t taken patients’ addresses and potential driving routes into consideration. Poor co-ordination was leading to poor quality and inefficiencies. By mapping patient addresses and adjusting dialysis times to accommodate regrouped home addresses, better transport services were put in place.

Taking a co-ordinated, systematic approach Patrick Harnett (Consultant Renal Physician) and the team at Southend Hospital were able to demonstrate a cost saving of £164,000 per year and that would be a saving in excess of £25.5M for the NHS in England - think how we could use that saving for more benefit for people with Kidney Disease. The amount of time patients now wait for transport has been greatly reduced, improving patient experience of care.

Better transport arrangements can improve quality and save money. As we all prepare for the forthcoming National Transport Audit, in October, I am sure that Patrick, Jacquie and Maggie will be getting lots of calls.

Related blogs:
Use iView to get the most out of the Patient Transport results
FOR ACTION: Patient Transport survey results launched
Patient Transport Survey 2008, first phase launch
Two in three patients take part in patient transport survey
Patient transport matters - be part of improving it