Wednesday, 27 February 2008

Reflections on my first year as Tsar

It is now just over 12 months since I took on the role of National Director or Renal Tsar. It has been interesting and challenging in equal measures. The Department of Health is a State Department supporting the Government in its development of policy and essentially the head office of the NHS managing the delivery of health services to the public. Although the reasons Department of Heath staff get up in the morning is for the same range of motivating factors as the NHS staff – mainly I think to improve the experience and outcome of patients, the work is different. Having spent 30 years on the front line I miss the daily contact with patients and being part of the clinical team solving or more usually managing the problems people and families with kidney disease are facing. I also miss the immediacy of making a decision or the team pursuing an intervention and relatively quickly seeing the impact. Formulating policy and then negotiating the support for implementation can be a slow process.

Not that the Department of Health has been a boring place over the past 12 months. New Prime Minister, new Secretary of State for Health and new Ministers. Professor Sir Ara Darzi elevated to the Lords to lead the next stage review of the NHS and for the first time the NHS have got a Medical Director – Sir Bruce Keogh, previously a Cardiac Surgeon. A new team who are certainly not letting the grass grow under their or our feet! If you have not contributed to the Our NHS Our Future, the Next Stage Review, you should do. Lord Darzi does want to hear from you, make your views known at

One of the most reassuring events I witnessed was a discussion about safety and quality at the NHS Department Management Board. That is where all the Chief Executives of the 10 Strategic Health Authorities, the Permanent Secretary of the Department of Health, the Chief Medical Officer and David Nicholson (Chief Executive of the NHS) and his Director Generals discuss strategy and make investment/disinvestment decisions. There is a saying “culture eats strategy for breakfast” – and here I saw the top team vociferous in their support to put quality before finance.

“Quiet” is not a word I would use to describe the kidney world over the last year either. Getting kidney disease on the agenda of medical and nursing colleagues in primary care has provided much needed visibility. Chronic kidney disease is common, harmful, and treatable. It is now recognised as a public health and government priority. In the first year of the new GP Quality and Outcomes Framework about 2 million people previously not known to have kidney problems have been identified and been placed on primary care registers which is the first step in slowing or even halting progressive kidney disease. Some of you will have heard Gordon Brown talking about kidney disease in his first major speech as Prime Minster on the NHS. If not, you can hear the interview at (8:00 - 8:30 am)

I am often asked what it is like to be a Tsar and what my role is? My job is to represent the needs and improve the outcomes of people and families with kidney disease within the Department of Health and the NHS. Getting the policy right is one thing, turning it into practice is another, therefore a key aspect of my role is helping frontline staff in hospital renal units, realise the vision of the renal NSF for our patients. Part of this job is getting some of the technical aspects of the NHS reforms such as the 18 Week Pathway, Payment by Results and commissioning or renal services right. A much bigger part of delivering the renal NSF rests with the multidisciplinary renal team – our biggest asset – everyone reading this article can make a big difference. I don’t mean working harder or faster, I mean doing the right thing at the right time. Transplant listing people before they need dialysis, discussing supportive and end of life care when it is appropriate, recognising that for many people on dialysis the experience is the outcome, questioning the practice where it does not add value, being efficient. “Easy to say” the thought bubble reads; well yes, but everyone of us is the system.

Joining the Department of Health was a steep learning curve for me. It is a very different environment than an acute Foundation Trust, my kidney team in Whitehall is very different from our multi-professional renal team, some of the skills and competencies do however overlap – communication is king. How many times have we learnt that an adverse incident or complaint arose from poor handover or communication. The Health Service is data rich, turning that in to information and then examining it to gain knowledge is a challenge we all have – be that managing out-patient appointments, rota’s, anaemia management, a dialysis session, a transplant programme or the whole of renal services in England. The information we have is precisely what you record – so if our coding is right not only does your patient get the right treatment but planners also get the information needed to make system improvements.

So looking ahead: what are my predictions? A good friend once told me that with planning you are always wrong – it just depends how much! The World has changed and is changing fast. We know that about 10% of the population have kidney disease, we know that for most people that means an increased vascular risk, not a risk of end stage renal failure. We know that we can slow kidney disease and reduce vascular risk – but to do so people need to be engaged and given the support to make the lifestyle and other changes to reduce their personal risk. We are shifting from an acute, sickness, treatment, care service to a long-term, retaining wellness, managing risk, reducing risk, reducing events system. For those of us in secondary care that will mean a massive shift. Over the last few years we have seen many advances such as the development of supportive and end of life care for patents with advanced kidney disease, we have seen a focus on prevention and another shift we are starting to see is a move from thinking dialysis and transplantation to trying to arrange transplantation before the need for dialysis.

The NHS is a system of care wrapped around the needs of the individual. It sometimes feels like disjointed, bureaucratic organisations trying to balance their books. Our job is to see above that – to see the patients in front of us and to play our role in the NHS system of care.

Tuesday, 12 February 2008

Renal NSF Update February 2008

The Renal NSF update for February 2008 is available here

Wednesday, 6 February 2008

Focus on: Preparing for end stage renal disease

Since the publication of the National Service Framework for Renal Services in 2004, considerable effort has gone into making improvements in renal services. Over the past few years we have seen exciting clinical advancements - such as desensitisation that opens the door for transplantation from previously incompatible donors - and significant service improvements.

Nonetheless, prevalence in England continues to rise by approximately 5% per annum (1) and there is currently no reason to think that this annual increase will fall off. Within this context, it is crucial that all patients receive the most efficient and effective care possible, and have positive experiences right across the care pathway.

I believe that this document, and the practical resources which will accompany it, are important tools for making this happen. Together they should help spread some of the best ideas, and to help everyone with an interest in this area take an honest look at their own services and identify where and how further improvements can be made for patients and staff.

If you want to find out how to improve the service and outcomes for your patients why not attend one of the implementation workshops in York (Royal York Hotel - 3 March) or London (Novotel West, Hammersmith - 7 March) - find out more from Jeri Hawkins or Catherine Davies at the Institute.

(1) UK Renal Registry Annual Report 2006

Expanding dialysis capacity - opportunities in new community hospitals

The inexorable increase in the number of people requiring dialysis was flagged in the community hospitals & services white paper. So it was great to see the policy translated into delivery. The first dialysis unit in a new community hospital was opened at Aldeburgh Hospital in Suffolk on 1 February. This will improve the experience of dialysis for local people and free up capacity at Ipswich Hospital.

All concerned should congratulate themselves on delivering this new service. Carole Taylor-Brown, CEO of Suffolk Primary Care Trust told guests at the opening that the dialysis unit would not have been possible without the generosity of the League of Friends. The money was raised through legacies, donations and coffee mornings. Jean Flick, Chairman of the League of Friends said “all the local people, pubs, women’s institutes and others have given us a lot of money and we are over the moon with the new facility – it’s just fantastic”.

Monday, 4 February 2008

Bedtime reading: Principles for accountability: putting the public at the heart of the NHS

Principles for accountability: putting the public at the heart of the NHS
The NHS wants and needs to be more accountable to patients and the public, says the NHS Confederation in this report

Read more here

Bedtime reading: Dialogue of equals

Dialogue of Equals - The Pacesetters programme Community Engagement Guide
The guide has been written to support NHS organisations participating on the Pacesetters programme to better engage with seldom-heard communities. Read more here

Our NHS Our Future (The Health Foundation's submission Jan 08)

Have you contributed to Lord Darzi's review of the NHS yet? Several of the workstreams - long term conditions, acute care, planned care, children, end of life care to name but 5 of the 8 pathways are relevant to kidney care. That's not to say the other 3 aren't. You may be interested in seeing the response of the Health Foundation which is a charitable foundation that aims to improve the quality of healthcare across the UK and beyond. If you do want to contribute and haven't yet done so, do have a look at Our NHS Our Future - have your say. If you want to know the names of the chairs of the workstreams in your region I am happy to provide them.