Wednesday, 21 November 2012

Kidney Patients Role in Improving Care

Q: The publication of the new Atlas of information about kidney services provided across the country clearly indicates that there is a huge variation in services patients receive, depending on where they live. This post-code lottery is both unfair and unacceptable. What can kidney patients and KPAs do to improve the provision in their area?

A: Yes, it is a postcode lottery and yes, it is both unfair and unacceptable. The Atlas of Variation in Healthcare for People with Kidney Disease collates data across the patient pathway from early diagnosis, choice of type of dialysis, timing of transplant listing, acute kidney injury and even transport for haemodialysis. It is accompanied by a series of case studies and commentaries provided by experts in kidney care highlighting innovations that could be adopted in your kidney unit. Data from a range of routine sources, the Renal Registry, NHS Blood and Transplant and National Audits have been brought together to provide information about how services work and to give an insight into the quality of care provided locally to people with kidney disease.

Of course, it is important to remember that one size does not fit all. For instance, there is not a magic number we should aim for in the percentage of people receiving home haemodialysis or doing peritoneal dialysis. What we need to aim for is that everybody approaching the need for dialysis gets clear information, is counselled and is supported to make the best choice for them. That is unlikely to result in the same percentage of patients being on peritoneal dialysis in Middlesbrough as in West London. Some variation is appropriate to the needs of the local population being served, but in other cases the variations are unwarranted (unwarranted is the polite for - postcode based, unfair and unacceptable) and cannot be explained on the basis of population differences. No one wants to wait longer than is necessary to be transplant listed. No one chooses to be referred so late they have to start dialysis as an emergency in an unplanned way. Very few people would choose to be managed in a kidney service that does not return accurate data to the Renal Registry because that would mean that the unit is not measuring quality of care. Where peritoneal and home haemodialysis rates are low it is likely many more would choose these options if clinical and management teams worked to break down the barriers to home dialysis. 

The NHS Constitution for England brings together, for the first time, the principles, values, rights and responsibilities that underpin the NHS. For patients, these rights include, for example, the right to be treated in a timely manner - this includes live donor transplantation; the right to be involved in all decisions about their care - this includes the right to be told about and supported in having conservative kidney care; and the right to be treated with dignity and respect. For the Constitution to have a real impact for people with kidney disease, people with kidney disease themselves will need to use the Constitution to help drive improvements to patient care and experience in every clinical encounter and every kidney service. The Atlas of Variation is a great place to start asking questions and begin to explore how together patients and healthcare professionals in partnership can provide answers, innovations and improvements in your own kidney unit. Kidney Patient Associations should be working with hospital Trusts, Kidney Care Networks and the new Local Authority Health and Wellbeing Boards to examine the data and set ambitious plans for action where it is needed.

Unwarranted variation in healthcare is of paramount importance to patients, their carers and loved ones. Its existence can signify that the quality of care that someone received in one part of the country may not be good as if they lived elsewhere. Ascertaining why geographical differences in the quality of care occur is complex and difficult but necessary so that equitable healthcare is available for all regardless of their address. Here are some questions you might want to consider putting into your own words when you have looked at the Atlas, which shows your local data compared to other units and localities.
  • Chronic Kidney Disease 
Detecting CKD is easy requiring only a blood and urine test. If you or a relative are seeing your GP for a long-term condition such as diabetes, ask them whether you need to be screened for CKD. If you have been given a diagnosis of CKD, ask whether your blood pressure is being maintained in the best range for stopping progression of CKD. Are you on the best blood pressure medication possible? If you are taking, several medications are they safe to be taken in CKD?
  • Renal Replacement Therapy
KPAs should ask their renal units if the uptake of RRT matches the prevalence of CKD in the area? How does your unit liaise and foster links with the GP practices? How is your unit planning for their RRT capacity to meet the local demand?
One of the maps shows the proportion of patients who needed to start RRT within 90 days of being referral. If you are on dialysis, how did you start dialysis? Was it planned, with adequate time for you to decide what kind of dialysis you needed? Or did you begin on haemodialysis with a line before having a discussion of whether you would prefer another type of RRT?
Some units have no patients on home dialysis whereas others have almost a third. KPAs should ask their units how much home therapy they are providing. Patients who dialyse at home have better outcomes than those who dialyse in hospital. Is there a discrepancy between provision of home HD or PD? If there is, ask why. You should have the choice of how and where you receive dialysis. 
  • Transplantation
 There are large variations in the rate of live kidney donor transplantation across England and the amount of pre-emptive transplantation being performed. If you receive RRT, when was transplantation discussed with you? KPAs should ask whether their unit has a "transplant first" culture. How many patients receive a transplant before dialysis is required? Though transplantation is not appropriate for everyone, it is the form of RRT with the best outcomes.
  • Acute Kidney Injury
AKI is a rapid decline in kidney function. People with CKD are particularly susceptible to AKI. In many cases, AKI is easily avoidable through early recognition. KPAs should ask whether their trusts have early warning alert systems in place. And is a clinical audit of AKI being performed?
  • Transport
Transport to dialysis is a frequent cause of distress for patients. KPAs: ask your unit who is responsible and accountable for patient transport arrangements. Are there incentives for patients who can make their own way to do so?
None of the data in the Atlas is new. It is all drawn from the standard NHS databases and various annual reports. In a way, the Atlas of Variation is holding a mirror up for us to see the variation in general practice, kidney units and hospitals across England. It shows the good, the bad and the ugly of kidney care. Of course, every kidney service cannot and indeed should not be the same. Communities in Devon and Cornwall are different from those in Birmingham and Coventry. That said, the Atlas does reveal that where you live determines the service you will receive and it should provide a stimulus for healthcare planners and funders, General Practitioners and kidney care healthcare professionals and most important of all patients and local kidney patient associations to examine the quality of care provided in your kidney units and general practices.

I would urge all kidney patients and carers with their local KPAs to look at the maps; to discuss the maps with doctors and nurses and Chief Executives; to ask questions and expect to be involved in drawing up action plans to improve care. People with kidney disease are very powerful, few patients realise that questions and comments from patients are heard and do make a difference. That is quite right, only patients and carers know what it is really like to have kidney disease, only patients and carers can really judge the quality of service they receive. The NHS is going through difficult times, patients must shape the service. Use the Atlas of Variation to do that. Ask those questions and remember, if the answer is "oh well, that's the way it is around here", keep asking "why?" until you get a proper answer. People reading Kidney Life have the understanding, you have the power, and you therefore, have the responsibility to help improve services in your local community. No one else can do it better.


Acute Kidney Injury in Edinburgh

The Royal College of Physicians of Edinburgh attracted a large and diverse audience to its UK Consensus Conference on Acute Kidney Injury (AKI) last weekend. Supported by NHS Kidney Care it examined three main themes in the management of AKI:

-         the role of fluids,
-         e-alerts,
-         biomarkers

All areas that are not covered in the NICE AKI Clinical Guideline due to be published for comment on World Kidney Day – 14th March 2013.

The consensus event was developed against the backdrop of the NCEPOD Report – Adding insult to injury  that showed widespread clinical failings, resulting in 50% of patients who died receiving an inadequate standard of care. Professor Sir Ian Gilmore, immediate, past President of the Royal College of Physicians of London and Professor John Feehally, President of the International Society of Nephrology, co-chaired the consensus panel that heard thoughtful presentations from colleagues across the UK and international experts. There were also some excellent posters describing a range of research studies and quality improvement projects in AKI from Scotland and England.

The key recommendations included:
-         doing the basics well; improving training and education of clinical teams, agreeing referral criteria for specialist input, and scoring systems that better defined patients at risk of AKI needs to be developed and validated for wider use;
-         A system of e-alerts, in which doctors receive automated instant messages advising them of abnormal biochemical results, indicating that their patient has evidence of AKI, should be implemented throughout the NHS. This will facilitate rapid treatment and medication adjustments. A national group should be established promptly to develop the standards for e-alerts; and
-         All hospitals must have fluid therapy guidelines that will aid resuscitation of patients, and identify the fluids that are most appropriate for replacement and maintenance.

Optimal care could save up to 12,000 lives a year and produce substantial savings. There are things that can be done now to put the NHS in a better place to effectively implement the NICE Clinical Guidelines on AKI when they come out early next year. E-alerts are not a quick fix. They need leadership to be accompanied by training, agreed cared bundles and clinical audit and leadership. Fluid therapy should be guided by repeated evaluation of volume status. Clinical assessment of volume status is difficult and there is no short cut for regular re-evaluation based on history, cumulative fluid balance, daily weights and clinical examination.
The consensus conference concluded that there are lots we know that we need to do now. A systematic approach to AKI as part of the risk assessment and management for all acutely unwell patients is required, but there are still a lot of unanswered questions across the whole spectrum of Acute Kidney Injury not least, in the three areas of biomarkers, e-alerts and fluid therapy. Improving basic care has to be our first priority – make 2013 the year of identifying and improving AKI in the NHS.

Wednesday, 7 November 2012

Yesterday in Parliament

While Americans were focusing on their election, matters in the United Kingdom Parliament turned to Adult Polycystic Kidney Disease. Madeline Moon, Labour MP for Bridgend had been successful in the speakers’ ballot and chose Polycystic Kidney Disease as the topic for the ‘End of Day Adjournment Debate’ on Tuesday 6th November 2012.

Anna Soubry, the Parliamentary under Secretary of State for Public Health congratulated her honourable friend on securing the debate and paid tribute to the excellent work undertaken by the Polycystic Kidney Disease charity.  Anna Soubry went on to emphasise the importance of raising awareness of Chronic Kidney Disease, commenting that although 2.3 million people are now on primary care registers for CKD in England there is more work to do. She underlined the importance of research, citing the three studies, which are being hosted by the National Institute for Health Research, and drawing MPs attention to the TEMPO (Tolvaptan Efficacy and Safety in Management of Autosomal Dominant Polycystic Kidney Disease) reported at the American Society of Nephrology meeting in San Diego last week.

The Minister concluded by speaking about the importance of the quality of life in people with chronic kidney disease. Drawing attention to the Quality Standard for CKD published last year by NICE, which clearly states that patients with a genetic family history of Polycystic Kidney Disease should have access to specialist care, and support to optimise their quality of life and clinical outcomes.

Social care in the last year of life

With an increasingly elderly, frail and co-morbid population, the need to coordinate health and social care is becoming more and more apparent. One could argue that integrating health and social care is the big issue facing the NHS and our care services.

The Atlas of Variation in social care published earlier this year, examined the quality of social care services in England. Like our Atlas of Kidney Care and the other health care atlases, it showed high variation in access, uptake, costs and quality – a postcode lottery. The social care atlas mapped its data to the Adult Social Care Outcomes Framework:
-         Enhancing  the quality of life of people with care and support needs;
-         Delaying and reducing the need for care and support;
-         Ensuring people have a positive experience of care and support;
-         Safeguarding adults whose circumstances make them vulnerable and protecting from avoidable harms.
A large read across to the NHS Outcomes Framework don’t you think? Any reasonably minded person can see the link between the various outcome frameworks from Public Health, NHS Outcomes, by which the Secretary of State for Health will hold the NHS Commissioning Board to account, the Commissioning Outcomes Framework to help deliver on those health aspirations and the Social Care Outcomes Framework. If they were all playing in concert, it would sound more like Schönberg than Mozart would. The staff in the various sectors are not working together yet, and we do not routinely join up information. Good health care leads to recovery and return to normal living. Poor health outcomes have their consequences in the lives of families of those affected, in the metrics of the Department of Work and Pensions, along with the social care needs of the individuals.
When it comes to the last years of life, social care needs are clearly as relevant as health care intervention. In conservative kidney care it really is not about the kidney, it is about the individual their experience, their family, carers and friends.
An atlas of variations in social care: an analysis of the quality of social care services in England, June 2012. MNP Health Mandate

What role should social care play to support someone at the end of life to die in his or her own home? In addition, how can health and social care services work together to make this choice a reality?

A thoughtful and groundbreaking study published by the Nuffield Trust adds significant weight to the argument that with the right support people could die at home, as they wish.

The report vastly improves our understanding of the costs of caring for people at the end of life and encourages a debate on what role integrated, coordinated care can play in keeping people at home in their last days.

“Our ageing population and over stretched health service means that the NHS will not be able to meet the rising costs of people being admitted to hospital unnecessarily at the end of life.”    Ciaran Devine CEO at Macmillan Cancer Support and Non-executive member of the NHS Commissioning Board

You will not be surprised to learn that understanding patterns of health and social care at the end of life also, reveals the large variations in access, uptake and costs.

 Understanding Patterns of Health and Social Care at the end of life, October 2012. Nuffield Trust 

The Nuffield Trust work shows that the cost of caring for someone in hospital increases sharply in the final few months of life- especially for emergency care. The costs can be as much as £90,000 per person. Social care costs, however, are more predictable and constant and home care is on average considerably cheaper than hospital care. Note the different scales on the vertical axis comparing the hospital and social care costs in figure 4.4 from the report above.

Care for people at the end of life needs to improve as a matter of urgency. This Nuffield  report chimes with what I have heard from kidney, primary care and social care professionals, about how it is often help with small things, can make a big difference fro patients and families, and is crucial to keeping people out of hospital at the very end of life. We should seize the opportunity of the current flux, we find ourselves in health, the financial challenges our Local Authority, and Health and Wellbeing boards are under to make step change  improvements in end of life care and deliver on the NICE QualityStandards.