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.
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 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.