The Kidney Alliance (KA) is an umbrella organisation
formed in 1998 by The National Kidney Federation, The British
Renal Society and the Renal Association with an aim to bring together
the patients' voice and professionals committed to kidney care.
The organisation aims to promote prevention
and early identification of kidney disease and high quality treatment
for all patients at risk from or identified with kidney failure
on an equal and uniform basis throughout the UK.
British Renal Society
Renal Association
British Transplantation Society
British Kidney Patient Association
Kidney Research UK
National Kidney Federation
British Association of Paediatric Nephrologists
Renal Nutrition Group
Royal College of Nursing, Nephrology Nursing Forum
Association of Renal Managers
Association of Renal Industries
The following comments represent a consensus
opinion from all member organisations.
SUMMARY POINTS
— We are concerned that GP Consortia will
need to commission a wide range of services within renal care
on which the level of knowledge will be understandably variable.
We would like to see specialist advice made available to Consortia,
without creating conflicts of interest with potential providers,
to ensure that decisions are not only appropriate for local need
but also appropriate for the needs of patients throughout the
care pathway.
— We would like to see the views of patients
built into commissioning decisions in specific therapy areas by
utilizing the specialist expertise of local patient groups.
— We are concerned that the proposed local
systems to scrutinize decisions are complex and may discourage
patients from engaging with them.
— We would like to see clear systems of
accountability and responsibility established at local and also
at national level where services are commissioned nationally.
— We would like to see quality standards
include minimum service standards that should be common to all
GP consortia and all providers.
— We would like to see all dialysis services
continue to be commissioned as a national specialized service
and we are concerned that any move away from this could put at
risk the lives of patients. This is particularly important for
children's renal services as kidney disease in children is rare
and provision of services will need to take into consideration
the critical mass required for clinical effectiveness.
1. CLINICAL ENGAGEMENT
AND COMMISSIONING
1.1 Renal care requires the commissioning
of a wide variety of services. These vary from basic lifestyle
and dietary advice to specialized services such as dialysis, organ
transplantation, cancer treatments and end of life care. This
huge range of services needs to be carefully integrated for renal
patients and to be supported by vital ancillary services.
1.2 The consequence of this wide range of
services on commissioning is that it is likely that many patients
will be simultaneously receiving services that have been commissioned
via different routes (eg locally commissioned services and those
commissioned as national specialized services).
1.3 This places a great deal of pressure
on the commissioners in GP Consortia to make appropriate decisions
across diverse areas of service involving many different components,
but always with renal care at the centre. In our view, this is
likely to be at odds with the understandable inclination to commission
a specific service component in the same way for all its potential
uses in order to try to achieve maximum efficiency. We therefore
believe that GP Consortia commissioners will require significant
specialist renal care support to ensure that their decisions relating
to services in this field are appropriate.
1.4 If such support comes from Trusts that
are likely to be commissioned to provide the care, this creates
a potential conflict of interests. However, we do not believe
that adequate expertise on all aspects of renal services will
exist within GP Consortia and we would be concerned if commissioning
decisions were to be made without such input.
1.5 In our view, GP Consortia will require
access to independent, specialist advice. In addition, quality
standards will be very important and should set out the services
that are considered essential (including ancillary services that
support treatment such as dialysis).
1.6 The views of patients are crucial in
shaping services. It will be far more effective (as well as constructive)
to have local patients involved in shaping services, not just
holding the Consortia to account. Local patient groups have valuable
specialist knowledge that would be vital in informing commissioning
decisions and GP Consortia should be encouraged to involve them
in relevant commissioning decisions and service planning. In the
adult and paediatric settings, parent/patient reported outcome
measures would be useful in ensuring positive experiences and
improving choice.
1.7 The development of renal networks is
essential. These would act to link the pathway and involve the
multi-disciplinary team together with patients and carers.
1.8 The Chronic Kidney Disease pathway from
diagnosis to treatment in Primary care through to specialist clinics,
renal replacement therapy including home therapies and transplantation
requires a high degree of integrated care across primary and secondary
care and social care by local authorities. Putting commissioning
in the hands of primary care will not help to integrate this,
which is why we have always supported specialised commissioning
for advanced CKD, which will progress to end stage renal failure.
Even under the current system there are perverse incentives between
social care and secondary care whereby NHS Trusts have both a
healthcare and financial incentive to discharge patients as soon
as they are fit with appropriate care packages in place while
social care agencies have an incentive to place barriers to discharge
in order to delay/avoid funding a care package. Any new commissioning
structure must have integration at its heart.
2. ACCOUNTABILITY
FOR COMMISSIONING
DECISIONS
2.1 We believe that there is a distinction
to be made between patient opinion on the choice of services and
expert patient opinion on what those services should consist of.
The former is about the local community exercising its choice
on local priorities, whereas the latter is aimed at ensuring that
the provision of those services chosen is appropriate to meet
the needs of patients.
2.2 As stated under section 1, we would
like to see greater emphasis placed on consultation between GP
Consortia and local patient organizations. We believe these interactions
should be transparent so that the extent to which patient views
have been included in commissioning can be scrutinized.
2.3 We believe that the NHS Commissioning
Board should have a role in reviewing the commissioning decisions
of all GP Consortia, identifying and challenging anomalies. Also
we agree that the NHS Commissioning Board should have responsibility
for commissioning specialized services (see later section).
2.4 Health Watch should be the watchdog
for local commissioning. However, this will place upon it similar
pressures to those of the commissioners themselves because it
will naturally focus across the local situation and priorities,
but in addition it should scrutinize local services in specific
disease areas on a top-to-bottom basis. The latter will require
specialist knowledge and insight that may or may not be available
locally.
2.5 The processes by which Health Watch
will fulfill its role require more detailed explanation. The way
in which the role of Health Watch integrates with that of its
parent organization, the Care Quality Commission, needs considerable
clarification—particularly the degree to which the regulator
will influence the watchdog.
2.6 Where commissioners face hard choices,
there must be adequate facilities for independent appeals to be
made. This should include specialized services that are commissioned
at national level. However, it is not only the choice of services
and treatments that should be subject to appeal, but in a similar
way, the processes by which the choices available are developed
should also be open to appeal. This includes not only existing
NICE processes (taking into consideration the development of Quality
Standards) but also the definition of tariffs—especially
pathway tariffs by Monitor.
2.7 No matter how management of the NHS
is configured, we remain clear that the ultimate responsibility
lies (and should continue to lie) with the Secretary of State
for Health.
3. INTEGRATION
OF HEALTH
AND SOCIAL
CARE
3.1 We understand the concerns regarding
the interests of providers—particularly as the proposals
open up the possibility of the involvement of a much broader group
of providers. However, we would be concerned if the desire to
achieve a more balanced situation between the commissioners and
providers were to impede the availability of specialist advice
and information on services, because it would be unrealistic to
expect commissioners to be expert in all therapy areas.
3.2 We believe that quality standards will
be helpful in guiding commissioners, but that more help will be
required, including access to independent expert advice. For example,
it would be theoretically possible for a provider to offer kidney
dialysis at a lower cost by excluding ancillary services such
as patient counseling to save money. However, patient counseling
has a direct benefit on concordance with dialysis and excluding
it would increase the risk of patients under-dialyzing, leading
to serious (and potentially costly) complications.
3.3 It would be helpful for quality standards
to include clear minimum acceptable standards. If services fell
below these, this would trigger immediate, automatic intervention
by the NHS Commissioning Board and/or Care Quality Commission.
3.4 We have concerns regarding service reconfiguration
and local decisions of a similar nature. The proposed system of
local monitoring and scrutiny is fragmented and complex. We are
concerned that this will have a detrimental effect on team working
and co-operation making it more difficult for such decisions to
be made. We are also concerned that the resulting culture will
not safeguard examples of good practice, which would often come
from interdisciplinary cooperation.
3.5 Whilst the White Paper places great
emphasis on outcomes, with which we agree, we also believe that
the retention of a few key process measures is vital, for example
the goal for 85% patients on dialysis to have vascular access
provided through a fistula or a graft within a defined period
of starting dialysis—which is likely to have a direct outcome
on patient mortality and experience. Such measures may help to
move forward changes to services and guide what changes are necessary.
We believe they will also play a useful role in encouraging innovation
during the interim period. However, we have serious concerns over
the absence of appropriately developed overarching indicators
to support many of the outcomes domains. We understand that such
development takes time, but our concern is that by the time they
have been developed and have begun to produce useful data, many
of the important decisions regarding the review of the NHS will
already have been taken.
4. RESOURCE ALLOCATION
4.1 Resource allocation based on the headcount
within a GP Consortium would seem to provide a sensible basis
for building budgets. However, there will be some services that
will require a more strategic view in the allocation of resources.
The focus of national specialized commissioning will tend to be
on rare conditions. However, we would not agree with the view
that national specialized commissioning and commissioning of services
for rare conditions are one and the same. There are some specialized
treatments that should be commissioned at national level despite
being widespread in their use. Kidney dialysis is one such example.
4.2 By commissioning dialysis services at
national level, the use of budgets will be much more efficient
and this will help to maintain value for money. Commissioning
at a national level would allow for:
(1) Efficiency in provision of facility.
(2) Maintain a consistent approach to the patient
pathway.
(3) Be cost effective by setting universal quality
standards, offering choice, of therapy and encouraging a holistic
approach to renal replacement therapy.
(4) Conversely, GP consortia may deprioritize
dialysis services due to small patient numbers requiring renal
replacement therapy and the high cost; this would be exacerbated
in paediatric services, where the condition is already extremely
rare.
4.3 We do not think that risk-sharing arrangements
between multiple GP Consortia would meet the requirements of dialysis
commissioning. For example, the provision of dialysis must be
maintained whatever the circumstances (for example if a GP Consortium
were to get into difficulty) since the lives of patients depend
on regular access to this treatment. The loss of dialysis service
by even a day can put lives at risk.
4.4 Risk sharing between consortia would
be fraught with difficulties because different consortia would
be likely to have different levels of risk, making it harder to
reach agreement. For example, clinical practice suggests that
rural PCTs are likely to have a lower requirement for renal replacement
therapy compared with inner city PCTs.
5. SPECIALIST
SERVICES
5.1 The national definition set for national
specialized services is under review. The prevalence of a disease
and the frequency with which a service would be utilized is commonly
regarded as a crucial factor in determining a specialized service.
However, when this factor was placed into the existing national
definition set, it was intended to be used as a guide and not
as a prescriptive definition on which to rule in, or out, any
specific service. The Kidney Alliance is concerned that this situation
is about to change so that only services for rare conditions would
be included in the definition set.
5.2 The scope of the NHS Commissioning Board's
remit for specialised services needs to be clearly defined. It
is very important that the incidence of conditions requiring low
volume services be accurately identified. In the Alliance's view,
the only credible basis for doing so is the current edition of
the Specialised Services National Definitions Set. This should
be in its entirety, though subject to regular revision.
5.3 We have set out our reasons for maintaining
dialysis as a national specialized service in section 4. We believe
that the continuity and consistency of service required by kidney
patients who rely on dialysis cannot be achieved through local
or regional commissioning and we are firmly of the opinion that
any move away from national commissioning will place lives at
risk.
5.4 We would therefore like to see commissioning
of dialysis services remain at national level and for these services
to be funded independently.
5.5 We would like to see more detail on
the proposed arrangements for commissioning national specialized
services. We would also like to see the new Advisory Group on
National Specialised Services (AGNSS) establish close links with
relevant patient organizations and for them to be involved in
the Group's decision-making processes.
5.6 We would also like to see established
processes at national level by which disputes over decisions on
national specialized services could be taken up and resolved and
also by which proposed changes to the national definition set
could be scrutinized. This may be a role for Health Watch at national
level, but such detail needs to be clarified as a matter of urgency.
October 2010
