Health knowledge made personal
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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?
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.
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. Published in Kidney Life - Autumn 2012 |
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