Written evidence from the National Kidney
Federation (COM 06)
1. The National Kidney Federation UK Charity
(No1106735) is a Federation of 70 Kidney Patient Association representing
the interests of all renal patients across the UK. The NKF has
been associated with the specialised services commissioning of
renal services since Regional Specialised Services Commissioning
Groups were first setup in 1999. In that time we have represented
our patient's interests as members of the regional/local commissioning
groups and renal services strategy groups (later renal networks)
throughout the country. We welcome the opportunity to contribute
to a consultation on a subject that can have such a direct affect
on long term condition patients and particularly the opportunity
to highlight the exceptional effect changes such as those proposed
can have on renal patient services provision.
2. The Carter review recognised that Primary
Care Trusts (PCTs) were not collaborating effectively in the specialised
services area to the potential detriment of people in need of
specialised care. Despite some progress since the Carter reports
with 10 SCGs now in existence and a revision of the National Definition
Set. The extent of genuine, clinically aware collaborative commissioning
in specialised services still varies widely nationally and, in
many parts of the country is very limited.
3. Although we can only comment on specialised
services and in particular renal services, we would agree with
many of your comments in the Health Select Committee report published
on 30th March 2010, reviewing the progress of commissioning in
the NHS. We particularly share the concerns regarding the problems
PCT's have in commissioning Specialised Services. There is still
a desperate need for continuity and stability in both the structure
and staffing if Specialised Services Commissioning is to deliver
the high quality cost effective services renal patients need.
4. One comment in your report that clearly
illustrates the reality of the problems that renal services and
other specialised services are facing is:
"Worryingly the evidence which we received
indicates that many PCTs are still disengaged from specialised
commissioning. Furthermore, there is a danger that the low priority
many PCTs give to it will mean that funding for specialised commissioning
will be disproportionately cut in the coming period of financial
restraint".
With the transfer from PCT to GP consortium
commissioning this position will not improve and could worsen.
Localism is an important principle but it has its limitations.
Local people need specialised services but they cannot be effectively
funded and provided at a local level. The appropriate commissioning
tier should receive its funds direct and be held to account for
their use.
5. In spite of the problems, a key factor
in gaining the renal services improvements we have achieved to
date was the forming of renal networks throughout the country.
They are made up of all stakeholders including Patients, Clinicians,
PCT representatives, specialised services commissioners etc. In
general terms they develop the forward strategy, identify health
needs, demand models, projections, budgets and delivery plans
in close cooperation with regional specialised services commissioners.
6. We welcome the establishment of an independent
dedicated NHS Commissioning Board and note that the Board will
be given responsibility for national and regional specialised
services, as defined by the Specialised Services National Definitions
Set (third edition 2009).
We also note however that the Liberating
the NHS document clearly states that renal dialysis will be
commissioned by the Board at the appropriate level? Our general
comments are given later in this document but we must first address
this point and state in the strongest terms possible, the need
for the whole of renal services as defined in Specialised Renal
Services (adult)—Definition No 11 to remain in specialised
services and be commissioned by the Board as a specialised service
on a regional basis.
7. In answer to the question raise in the
Liberating the NHS document:
Are there any services currently commissioned
as regional specialised services that could potentially be commissioned
in the future by GP consortia?
On behalf of our renal patient members we can
only repeat the answer we gave in 2008 when asked a similar question
by the National Specialised Services Commissioning Group, National
Definition Set review.
8. The National Kidney Federation could
not support any proposal to remove any part of renal services
from its specialised status as it would have a significant detrimental
affect on the quality and standards of the treatment patients
would receive and quickly return renal services to the "dark
ages" with the postcode lotteries that existed at that time.
The NKF statement and submission to the National
Specialised Services Commissioning Group received quote (NSSCG)
"overwhelming support from all sectors of the renal community".
There are many reasons why renal services should
remain in specialised services:
9. Patient numbers are small and spread
across the country (Circa 14,400 HD patients unit based and 4,265
PD home based). Many of the specialist renal units look after
small numbers of patient (40 to 150). At the same time however
the costs involved in delivering renal replacement therapy are
high.
10. Very few PCTs even with the recent reduction
in number would have renal patients within there compass of care.
Of those that do the renal patient numbers are small and have
very low visibility in general PCT considerations. Although the
inclusion of early detection of Chronic Kidney Disease in the
QOF has raised GP awareness of kidney disease in the scheme of
things only a small number of GPs will ever see or have experience
of renal patients.
11. When patients reach Established Renal
Failure (their kidneys fail) they will need dialysis. Without
this treatment or a transplant they will die. A patient's dialysis
treatment unlike other disease areas requires four to six hour
sessions three days every week perhaps for the lifetime of the
patient. Treatment capacities requirements are therefore treble
that of a normal treatment. Even with renal dialysis units operating
three shifts six days a week most units are now at capacity.
12. Renal services should not be split into
specialised and non specialised services. There is a need to work
closely with the General Nephrology Services as patients in their
lifetime will change modality during their treatment, they may
have a transplant (sometimes more than one) returning to dialysis
each time a transplant fails. The planning for such movement is
enhanced by ensuring that all components of the service for renal
patients is planned and resourced on a regional basis.
13. Patients often have more than one co-morbidity,
diabetes and coronary heart problems being the most common. Treatment
of renal failure requires a multi discipline team of many specialised
consultants and nurses supported by specialist laboratory and
research facilities. The skills required to provide these services
efficiently and cost effectively therefore need to be centralised
in specialised renal units. In the past individual PCT's could
not cover these requirements effectively.
14. Specialised care for people with Acute
Kidney Injury in renal high dependency beds also requires centralisation
to achieve the optimum outcomes for such critically ill patients.
We feel that it would be unwise to separate out the specialised
commissioning arrangements for ESRF, Acute Renal Services, General
Nephrology and Transplantation due to the extensive overlap in
relation to the resources used to provide these services.
15. In the past PCT's have had problems
understanding the "open ended" long term nature of renal
treatment. It does not comply with the norm of detect—diagnose—treat—cure
and discharge. The patients are few and the costs high both in
terms of treatment and facilities cost.
16. With the transfer from PCT to GP consortium
commissioning the PCTs will focus on supporting the establishment
of GP consortia. The danger then is that their already inadequate
commitment to specialised commissioning will wane with potentially
damaging results for patients during the change over period.
17. Another factor to consider is the agreed
implementation of the Payment by Results (PBR) national tariff
in renal dialysis—non mandatory in 2011 but mandatory in
2012. This is the first critical step in the introduction of PBR
in renal dialysis services. Early work is also underway on transplantation
costing.
18. Due to the wide ranging costings that
have existed nationally in dialysis this will be a difficult and
critical changeover period for renal funding and commissioners.
Combined with the changes in commissioning arrangements and the
present NHS financial situation it is absolutely essential this
PBR implementation is closely monitored and reviewed. Failure
to do so could have serious funding consequences.
19. The Renal community has worked hard
to provide a truly patient centred service that ensures the delivery
of high-quality, clinically appropriate forms of treatment designed
around individual needs and preferences' of the patient. We have
come a long way within the present specialised services arrangements
but we still have a great deal more left to achieve. Decisions
on the future of this service have a critical affect on the lives
of the vulnerable patients concerned and we feel strongly that
their needs should continue to be provided within specialised
services.
20. The existing definition set Specialised
Renal Services (adult)—Definition No 11 includes a by
no means complete listing of some outstanding renal issues (home
dialysis, end of life care etc). We would be happy to expand on
this detail if required.
August 2010
| 
