Written evidence from the Cystic Fibrosis
Trust (COM 03)
— This is a representation from the Cystic
Fibrosis Trust, which is one of the specialist conditions for
which there is a National Definition Set (Number 10).
— The Cystic Fibrosis Trust (CF Trust)
has been actively involved in trying to improve the arrangements
for commissioning Cystic Fibrosis (CF) services for many years.
After a great deal of frustration, the CF Trust was very pleased
when the Carter Report was accepted by Lord Warner and was implemented.
For the first time there were clear plans in place to commission
CF, which is one of 34 specialist conditions, in a cohesive and
constructive way.
— Whilst matters have undoubtedly improved
as a result of the Carter Report, the Cystic Fibrosis Trust has
been disappointed in two respects. First, it has been patchy in
terms of geographical area as to which commissioners have actively
engaged with the CF service and which have not, and secondly,
in that many recommendations within the Carter Report adopted
by Lord Warner have not as yet been implemented. Of particular
importance is the delay in designating appropriate specialist
CF centres and clinics to offer CF care.
— The CF Trust has worked systematically
to put the tools in place to deliver excellent CF care. These
include appropriate and agreed national standards of care, as
embodied in the CF Trust's consensus document Standards of
Care—Standards for the Clinical Care of Children and Adults
with Cystic Fibrosis in the UK 2001, the National Definition
Set Number 10 (third edition), and the paper produced at the request
of the specialist commissioners e Care, Network Care, Shared
Careo at the request of the specialist commissioners the Trust
has developed a clinical care pathway, which will be launched
and available both to clinicians and those affected by CF later
this summer.
— The other initiatives in which the CF
Trust has been heavily involved are firstly a programme of peer
reviews, whereby a vast majority of specialist CF centres and
a large proportion of specialist CF clinics have been thoroughly
reviewed by an expert peer review panel and their findings have
been made available to the commissioners as well as to the Chief
Executives of the hospitals hosting the services in question.
Secondly, the CF Trust has for some years had a national clinical
database and is working with the Department of Health to use this
database to allocate the funding for CF care via an annual banded
tariff. The work to agree this tariff has been ongoing for the
best part of two years. In conjunction with the Department of
Health the CF Trust has obtained detailed data for an annual package
of care for around 2,000 CF patients in England. The CF Trust
is currently addressing a number of outstanding issues, including
how high cost drugs should be incorporated in the tariff, especially
nebulised drugs which currently may be prescribed by the GP rather
than by the hospital, the costs of shared care arrangements for
children with CF and the additional costs for particular categories
of patients, such as those in their first year of diagnosis that
require a great deal of support, those with atypical mycobacterium
infection, women with CF who become pregnant, and patients who
are post transplant and who continue to seek their care with their
local CF centre rather than their transplant centre. Patients
in the latter category tend to include those whose transplant
has not been particularly successful and those that live at a
distance from the transplant centre.
— With these tools, the CF Trust would
hope to be able to address many of the questions in the consultation
document and would see CF as an example as to how commissioning
of the highest standard can be achieved for a complex life-threatening
disease.
To comment on the particular themes identified
in the invitation to submit written evidence, the Cystic Fibrosis
Trust would make the following observations on those which are
relevant to CF.
1. CLINICAL ENGAGEMENT
IN COMMISSIONING
The CF Trust has worked closely with commissioners
throughout England where they have been responsive and willing
to be involved. The CF Trust has had particularly fruitful relationships
with the commissioners in the North West, the South East, the
West Midlands and South Central. The commissioners from these
areas have attended peer reviews and have responded to peer review
reports when they have received them. They have discussed with
the CF Trust the need for additional specialist CF centres in
their area, and they have also considered how they might designate
CF centres, possibly using the CF Trust peer review programme
as a base. As the peer review panels comprise four clinicians
(two consultants from other parts of the country to the centre
being peer reviewed, and two other multidisciplinary team members,
including nurses, physiotherapists and dietitians), a strong relationship
between clinicians and commissioners has already been forged.
The Standards of Care consensus document and the clinical care
pathway address issues of clinical practice in some details, and
these have been encompassed within the National Definition Set.
In terms of GPs, CF care is a tertiary referral
service, and although there has been a role for GPs to date, specifically
in terms of prescribing some of the everyday drugs involved in
CF care, as well as some of the higher cost nebulised drugs, and
in offering support at the palliative care stage where appropriate,
most CF care comes from the specialist CF tertiary referral centre.
The CF Trust would very much welcome a scheme whereby all drugs
were controlled by the centre, in the sense that they would be
resourced to fund them and they would be able to prescribe appropriate
drugs. However, it is important that a convenient method be devised
of delivering these drugs to patients, either in their own home
or to allow them to collect them from a pharmacy close to their
own home. CF patients rely on a very heavy burden of daily medication
to ensure the best quality and length of life, and as they often
live quite a way from the specialist CF centre, it is unreasonable
to ask them to attend the centre every few days or every week
or so for prescriptions.
2. HOW OPEN
WILL THE
SYSTEM BE
TO NEW
ENTRANTS?
Most hospitals offering CF care have been doing
so for many years, and most are appropriate to be offering such
care. However there are some hospitals offering CF care with an
under resourced and a poorly educated team, and this should be
addressed via designation. In terms of new entrants offering care,
there is a clear opportunity within CF for this to happen in the
near future, as it is recognised that there is an urgent need
for a number of new adult centres, as the number of adults with
CF is increasing significantly year by year. There has already
been an attempt to move forward in this respect in the North West,
where invitations to develop a new adult centre were invited,
and three hospitals currently not recognised as specialist CF
centres put themselves forward for consideration. After a thorough
review of their applications, it was hoped that a decision would
be made and the location for a new centre would be agreed. Unfortunately,
it appears that this has not happened and this initiative is now
on the back burner. However, as long as it is clear that any provider
is wishing to offer the highest quality of service and is not
simply wishing to offer CF care because it thinks it will be lucrative
and the job can done "on a shoe string", the CF Trust
would welcome new entrants.
3. ACCOUNTABILITY
FOR COMMISSIONING
DECISIONS
The CF Trust always involves patients or the
parents of children in its peer reviews and on all its committees.
It also employs seven Expert Patient Advisers, who all have CF,
and whose job is to ensure that they and their fellow patients'
voices are heard in whatever decision making processes are in
hand. The CF Trust recognises the importance of patient choice
and the appropriate funding following the patient to the service
of their choice as long as it is a designated one.
In terms of the NHS Commissioning Board, the
CF Trust is pleased to learn that specialist conditions will be
commissioned directly by the national Board rather than by GP
fund holders, which gives a great deal of reassurance about equity
and quality of care. However, the CF Trust is keen to know how
the strategic planning arrangements will be developed.
4. HOW WILL
THE NEW
ARRANGEMENTS STRENGTHEN
COMMISSIONERS AGAINST
PROVIDER INTERESTS?
As commissioners will control the budget, they
will be in a position to withhold funding from providers who are
not offering an appropriate level of care or who are not using
their budget in a proper manner. Vulnerable patients, such as
those with CF, will be protected by the various measures already
outlined to establish their level of care. Most importantly, outcomes
via Port CF, the national clinical database for those with CF,
will give a clear indication as to where care is of a high standard
and where it is not.
5. HOW WILL
THE PROPOSED
SYSTEM FACILITATE
SERVICE RECONFIGURATION?
This is an area which the CF Trust finds unclear
in the proposed new arrangements. As already identified, it is
important that services continue to be developed to meet changing
circumstances, such as the increasing number of adults with CF.
Attempts to develop new specialist adult centres have been made,
but have not been achieved successfully to date. Whether the national
NHS Commissioning Board will take on this responsibility or whether
there will still be specialist commissioners who have responsibility
for their own area is not clear. The CF Trust is firstly of the
opinion that whoever has the responsibility must have the authority
and the money to make it happen, otherwise it will be another
level of bureaucracy attracting heavy salaries but with little
to show for it.
6. RESOURCE ALLOCATION
In terms of resource for CF care, the work in
which the CF Trust has been involved with the Department of Health
to establish an annual banded tariff for the care of those with
CF should provide an answer for appropriate allocation of resource.
Depending on the severity of their condition, and the amount of
care required to keep well, a tariff for a year's worth of care
for each patient will be agreed. This will follow the patient
to the centre of their choice, as long as it is a recognised designated
specialist CF centre. This would negate the need for tiers of
committees to try and decide on what the appropriate funding should
be. Each patient would then know that the resource needed to provide
appropriate care for them had been made available to their hospital.
They would have the power of moving to another designated centre
if they felt their service was inadequately resourced. They would
also have access to all of the consensus documents and the clinical
care pathway, which has been developed at the suggestion of the
specialist commissioners to ensure patients are getting the necessary
care to ensure the longest and the best quality of life.
7. SPECIALIST SERVICES
On the specific question of specialist services,
the CF Trust is very pleased that specialist services will become
the responsibility of the national NHS Commissioning Board. The
CF Trust would be pleased to learn whether it is intended that
the national NHS Commissioning Board will hold the funding for
the care of all those with CF and will distribute it as has been
agreed to date with the Department of Health according to the
national clinical database run by the CF Trust and approved by
the Department of Health, to the hospitals providing care for
patients whose data is captured on this clinical registry, which
it is estimated will be over 95% by the time the new arrangements
come into play. For the first time, the appropriate costing of
a CF service has been addressed in considerable detail, and although
there are a number of outstanding areas of work to be completed
over the next few months, it is expected that a robust funding
agreement which will form the basis of excellent CF care throughout
England will be available from April 2011.
To conclude, the CF Trust welcomes the new arrangements
but recognises that more detailed work needs to be done to ensure
these laudable aims are met. It must be ensured that the appropriate
tariff is in place, that it gets to the appropriate provider,
and that they in turn ensure it gets to the frontline of the service
in question and is not held back for other purposes or to meet
hospital deficits. It is also important that robust arrangements
are in place to ensure the necessary strategic planning of the
service for future developments.
August 2010
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