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.
