Is the answer "yes" to all the questions?

Patients value a more patient-centred approach and more time in their consultations. Time is a fixed resource. How can healthcare professionals spend more time in value-added consultations. Two further questions that raises is “how do we do things differently?” and “what do we stop doing?”. Identyfing the low or no value activities and interventions is one way of unlocking resource. The right people, in the right place at the right time with the right information – it may seem like a slogan from the 90s - but remains as true today. If the information that’s needed isn’t there, if the environment isn’t conducive or if the right people, and that may be carers or relatives, aren’t in the room, the care planning meeting (because that’s what a consultation is), will not be of either high quality or be productive.

We need to gear our system so that patients answer “yes” to the following questions:

1. Have you had enough support from local services or organisations to help you to manage you health?
2. How confident are you that you can control or manage your health?
3. Did you discuss your goals in caring for your health?
4. Were you involved as much as you wanted to be in decisions about your health care and treatment?
5. When you think about your healthcare in general, how often do you receive the health care YOU need WHEN you need it?
6. Do you think support and care you receive is connected and working for you?

Easy to say, easy to agree with (I hope), less easy to do, even more difficult to measure? Well these questions or something similar could be used to assess patient engagement. Planning for people who need renal replacement therapy pays big dividends in terms of quality of care, the experience and the outcomes for patients. It also releases time – avoidable admissions, prolonged lengths of stay and low/no value outpatient consultations by getting it right at the planning stage

Renal NSF update April 2010

The Renal NSF update for April 2010 is available here.

Invest in engagement

The Picker Institute have launched a new web tool to help the NHS unlock some of the benefits of effective patient and public engagement in health called “invest in engagement”. Picker have analysed evidence from 280 high level research reviews relevant to patient and public engagement in health. These are organised into 6 domains that are based on priority areas for the NHS in England:

• improving patient experience
• building health literacy
• choosing appropriate treatment
• supporting people to manage their own conditions
• promoting health and reducing health inequalities
• engaging the public in services to make them responsive and accountable

The report highlights communication, training for health professionals as leading to better patient satisfaction and the value of patient centred consulting styles and longer consultations. These interventions may help to improve health outcomes and encourage better self care. In choosing treatment the evidence appears to be even stronger that patient decision aids will:

• Increase patient involvement in decision
• Lead to better understanding and treatment options
• More accurate perception of risks
• Improved quality of decision making
• Appropriate impact on update of screening
• Does not increase patient anxiety
• May reduce intervention rates
• May be cost effective

Invest in engagement is neatly packaged and includes information on “best buys” as well as video clips and detailed analyses of the literature.

Improving choice for kidney patients: home haemodialysis

The first of these NHS Kidney Care workshops kicked off in Manchester today. The focus was on Standard 1 of the Renal NSF

“all children, young people and adults with chronic kidney disease are to have access to information that enables them, with their carers, to make informed decisions and encourages partnership in decision-making, with an agreed careplan that supports them in managing their condition to achieve the best possible quality of life”.

Mark Brady, our kidney CMO intern who is working with the team this year, showed the Renal Registry data for the North West.

As ever, the patient stories are one of the most powerful forces for better access to home therapies. Sandip Mitra (Consultant Renal Physician, CMFT, Manchester) recounted the struggle a 38 year old man with diabetes and renal failure had in fitting in with the hospital based haemodialysis regime. By 6 months he was becoming disruptive, confrontations with staff were occurring and he is now able to describe how resentful he was of having to spend 3 evenings a week in the dialysis unit after a full days work. Self needling wasn’t in fact the insurmountable barrier to home dialysis that it was initially thought to be. Psychological support and training tailored to his personal needs were required. Now that he’s at home, the renal unit staff feel the patient has been transformed, the family think they have got their real husband and father back. The patient is in control. Adhering to a rigid hospital regime, as much as the time commitment and the direct effects of 3 times weekly dialysis is difficult and the stress often plays out through personality and behaviour changes.

Even more powerful than clinicians recounting their anecdotes are patients who get up and tell their stories:

Stuart Segal (home haemodialysis patient, Liverpool)
spoke about how easy it was and how much better he feels on daily dialysis describing it as “a doddle”.

Jean (Stuart’s wife – an accountant not a clinician)
said “nobody told me I would be responsible. The whole of my life runs around 2 hours a day – well 3 hours with the set up and cleaning". "I can’t cope – but no-one is listening”. Jean quite rightly pointed out that it’s not fair for carers to be “hung out to dry” and emphasised the need for respite care.

Darrell Mortimer (home dialysis patient, Preston)
speaking eloquently about the benefits of tailoring his home haemodialysis to suit his particular needs, agreed that the strain and stress on the family was enormous and that not only regular respite care but some formal structured approach for carers is needed.

Costs, productivity and efficiency were discussed in detail. There are some real difficulties in getting accurate costs to compare home and hospital dialysis. In the national costings, transport hasn’t been included, reduction in drugs – erythropoeisis stimulating agents and phosphate binders hasn’t been considered and on the flip side, costs for carers isn’t captured. But, whichever way you cut it, home dialysis does cost less than hospital based treatment.

Nesta Hawker (NW Specialised Commissioning Manager) explained quality indicators, commissioning for quality and innovation and tariffs in a simple, but not simplistic, way so that all in the room could understand how the NW Commissioning Team are using these policy levers to drive up quality and drive down unacceptable variation. I was pleased to hear Nesta’s mechanism for avoiding unintended consequences – to speak to people, staff and patients and to examine data. One size does not fit all.

The workshop was the high point and a straw poll suggested that all 40 participants found the event useful. Local barriers and potential solutions were identified and explored but I am not going to steal the thunder of the NW home dialysis action plan. Getting the resource in the right place, having a patient centred culture, thinking about and involving carers in designing services and actively working towards shared decision making for all were some of the key themes.

There are some funds to support this – new money as well as savings from hospital dialysis costs. High quality care for kidney patients means home dialysis is a real option for those patients who make that choice.

Watch out for the NHS Kidney Care “improving choices for kidney patients: home dialysis” roadshow coming to a venue near you shortly so you can have your say and help shape the future of kidney service in your Kidney Care Network.

Rare diseases

The Chief Medical Officer’s annual report on the state of the nation’s health and wellbeing always has some important nuggets, often allows a peak into future policy areas and over the years has focussed on a number of topics very relevant to kidney care including hospital acquired infections, health inequalities and transplantation.

In his last report, Sir Liam Donaldson highlights the quality of care and inadequate service model for many people with rare diseases. The charge is that the NHS has not kept pace with the explosion in the knowledge about these conditions. This is definitely true for many primary kidney diseases such as Cystinosis, renal tubular acidosis and even polycystic kidney disease to name a few. Individual rare diseases affect in the region of 5 in 10,000 people. But taking all the different forms of rare disease together, it’s a different story. In all, 1 in 17 people in England has a rare disease (approximately 3 million people); rare diseases are often severe, chronic, difficult to manage and diagnosed late. Many people do not have access to specialist services. Rare diseases are also neglected by pharmaceutical companies, who are reluctant to invest in new treatments. But molecular clinical science is providing new insights into the underlying mechanisms of injury and repair leading to a better understanding of these diseases including the rare kidney diseases. In turn, new therapeutic targets are emerging and drugs that can radically transform the natural history and outcomes are becoming available.

Liam Donaldson recommends

• Strengthening the network of reference centres for rare diseases to enable better coordination of specialist services, including the transition from paediatric to adult services.
• Ensure that adequate numbers of specialists are trained so that future service needs can be met.
• Appoint a National Clinical Director for rare diseases to oversee the development of clear standards and pathways for the treatment and surveillance of rare diseases with national registers to support service planning and delivery as well as research.
• Strengthen research, including translational research with economic incentives to develop and market medicines for the “orphan diseases”.
• Raise public and professional awareness of this neglected group of diseases.
• Support international collaborative efforts to share information and resources for rare diseases.

If I didn’t know better I would think that the CMO was one of the co-authors of the draft Renal Association and British Association of Paediatric Nephrology report “Rare Kidney Diseases: an integrated strategy for patients in the UK” that was put together by the steering group after a one day, yes one day, event but also with a lot of pre-work and planning back in September. I am hoping the final renal rare diseases report will see the light of day soon. It will provide a framework for work in this area and I would argue could be a model for other services.

Acute Kidney Injury Delivery Board

The AKI Board met at the Department of Health in late March to consider how best to respond to “Adding Insult to Injury”, the NCEPOD report into AKI and how to ensure that lessons are learned and recommendations implemented. The group includes acute physicians, kidney care and intensive care network managers, intensivists, renal physicians and nurses, pharmacists, biochemists, radiologists and informatics experts as well as NHS Kidney care and Department of Health policy colleagues. They have identified a series of workstreams from education, risk assessment, early identification, access to specialist radiology, renal and intensive care expertise, e-prescribing and capacity within the system.

In terms of agreeing definitions, using the same language, engaging with colleagues outside of intensive care and specialist kidney services and implementing standard reporting and audit, AKI is about 5 years behind the CKD story but the parallels are clear.

Given the importance of AKI as an indicator of those who are acutely unwell, its association with prolonged length of stay and increased mortality, I am hopeful that we can, as a system, make progress at scale and pace to improve the quality of care for those with AKI.

A NICE clinical guideline on AKI (up to the point of requiring renal replacement therapy) has been agreed but there is much to do locally and nationally so we are ready and waiting to rapidly implement that NICE guideline when it is published in due course.