Written evidence from the Urology User
Group Coalition (CFI 12)|
is essential that patients with continence and urology problems
are able to access the products/devices which are best suited
to their individual needs, both to ensure the best clinical outcomes
and to provide value for money to the NHS in the long term. However,
this does not always happen in practice.
the Government has no plans to change the current arrangements
for supplying prescribable urology products, it is not clear how
they will work within the new system, or indeed they will work
better than they do at present.
agree that there is a useful role for clinical engagement in commissioning,
but are concerned that GPs and other primary care practitioners
do not have the required specialist knowledge to be able to ensure
that their patients have access to the best urology products for
their individual needs.
are concerned about the potential conflict between patient choice
and commissioners allocating resources.
would welcome more information being made available about how
local accountability will work in practice.
1. The Urology User Group Coalition (UUGC) represents
the estimated half a million continence appliance users who rely
heavily on urology products and services to maintain their health
and wellbeing. We are also representative of many people with
the vast range of clinical diagnoses that usually require continence
management to be integrated into care and treatment pathways.
These include the long term conditions of cancer, stroke, spinal
cord injury, MS, spina bifida, Parkinson's disease and other neurological
2. We welcome the opportunity to respond to this
inquiry. This response will focus on clinical engagement in commissioning,
the conflict between patient choice and commissioning, and local
3. For patients with continence problems, it is essential
that they have as much choice as possible over the devices they
use to help them manage this condition. This includes catheters,
but also products such as urinary sheaths, drainage bags and other
4. Currently, access to urology products in primary
care is determined by the new arrangements under Part IX of
the Drug Tariff for the provision of stoma and urology appliances
- and related services - in primary care. This was published
in 2009 after an extensive review and consultation, and came into
force in April 2010.
5. Part IX of the Drug Tariff lists the products
which have already been assessed as being safe and effective,
suitable for GP or nurse prescribing, and providing value for
money to the NHS by specifying the price which the NHS should
pay for each device. The enables urology product users to choose
from a comprehensive range of devices, so that they are able to
select and use the device which best meets their individual needs.
6. Many patients rely on specific urology products
to cope with dexterity and other impairments as well as for their
comfort and wellbeing. To a person not using them, two urology
appliances may seem very similar- but for the people who use them,
even slight variations can cause serious discomfort, impeding
their mobility, their ability to live relatively independent lives,
and even lead to an increase in infections. A less than optimum
product can stop self-care and create further care needs causing
over reliance on carers - and can prevent both patients and relatives
who need to care for them from working. This neither delivers
effective commissioning of quality care nor enhanced patient outcomes.
7. However, some PCTs have chosen to formulate their
own local arrangements outside of the Part IX arrangements, including
restrictive product formularies, which limit the number and range
of products available to patients in the area. This produces a
postcode lottery for these devices, going against the aims of
the national arrangements.
8. PCTs may intend that the development of their
own arrangements ensures quality, value for money and the best
clinical outcomes, but this is simply replicating a process which
has already been carried out in developing the Drug Tariff, while
further restricting patient choice. The amount of bureaucracy
involved in accessing products which are not included in local
formularies is often prohibitive, and many patients are not aware
of their rights. Furthermore, there is a general lack of knowledge
among practitioners as to what the Drug Tariff and the Part IX
9. Patients have also found difficulty in accessing
the number of products which they need. Provision of continence
products should be decided according to clinical need. However,
according to the National Audit of Continence Care, "66%
of PCTs impose a limit on provision".
10. While we understand that the current Government
has no plans to replace the Drug Tariff as the mechanism for supplying
urology products to patients, it does risk being undermined by
the developments outlined above. The Drug Tariff is a system which
provides commissioners with the necessary range of products, ensures
value for money for the NHS, and an appropriate choice of products
for patients, while avoiding a postcode lottery in access to products.
If the aim is to create a patient centred NHS, then it is important
that patients with complex, long-term conditions are able to have
a degree of certainty that they will be able to access the products
which they need to in order to manage their conditions.
11. At the moment, it is not clear how this will
function in the reformed NHS. The move towards greater patient
choice and involvement could of course be positive if it works
well in practice, allowing patients a proper say on a matter of
great individual importance. However there is the risk that GP
consortia, led by non-specialists without a detailed knowledge
of the needs of urology appliance users, may simply decide to
carry on using the same formularies which have been used by PCTs,
continuing to restrict patient choice.
12. We support the Committee's previous conclusions
about the importance of clinical engagement in commissioning.
We also agree that it is essential that this engagement draws
from a wide a pool of practitioners as possible in order to deliver
the maximum benefit to patients.
13. Most individuals who have incontinence problems
are suffering from a long-term condition such as cancer, stroke,
spinal cord injury, MS, spina bifida, Parkinson's disease and
other neurological conditions. These conditions are complex and
multi-faceted and require a number of different treatment options.
14. Our concern is that GPs do not have the specialised
knowledge of continence products and the individual needs of their
patients to effectively advise them on the best treatment options.
While two urology products may seem very similar to a GP, small
differences can have a big impact on the life of the person using
the product, particularly their ability to be independent, to
work, and to have a social life. The same can be said of community
nurses, who are often more involved than GPs in the day-to-day
care of continence product users, but similarly lack specialist
knowledge of urology products.
15. This presents a particular problem when PCTs
implement restrictive formularies which try to limit the products
which patients are able to access. Although patients are technically
entitled to any product listed on Part IX of the Drug Tariff,
they often do not have sufficient knowledge of their rights and
of the available products to be able to access them. If neither
GPs nor community nurses understand what their patients are entitled
to or the effect that inappropriate provision can have on a patient,
then they are not in a position to ensure that their patient is
receiving the best treatment. As mentioned above, it is not yet
clear if and how GP consortia will differ from PCTs in the ways
in which they make urology products available to patients.
16. While it has been confirmed by the Department
of Health that they do not currently plan to change the arrangements
governing the supply of urology products to patients, it is not
yet clear how the reforms to commissioning will affect arrangements
for patients to access urology products. We would be very keen
to see those responsible for commissioning in the future take
steps to improve their knowledge of specific areas, such as continence,
where GPs may not have a great deal of specialist knowledge.
17. This could take a number of forms, including
designating a lead commissioner for each consortia on specific
areas or ensuring that tailored training and information is made
available to commissioners making decisions on issues such as
formularies. In areas such as urology care where national policy
arrangements and the Drug Tariff underpin patient choice, these
should be upheld and not restricted further. While this also underscores
the importance of ensuring that patients are able to make their
voices heard, it should not be forgotten that they also need to
be aware of their rights to access certain products, something
which is not always the case at the moment.
18. As mentioned in the Committee's original Report,
there is also a need to increase the involvement of specialists
in commissioning decisions, in order to ensure that specialist
knowledge is reflected in the decisions taken.
19. We have taken note of the fact that the current
Government are very keen to increase the role of patient choice
within the NHS, and support this direction of travel. However,
we agree with the Committee's previous Report that there is a
potential conflict of interest between patient choice and commissioning,
particularly at a time of increased pressure on resources.
20. As mentioned, many PCTs have already put in place
restrictive formularies for urology products, with the intent
of limiting the choice that patients have over their products.
Although all these PCTs state that patients are able to access
any products which are listed in Part IX of the Drug Tariff, in
practice this does not happen because neither patients nor healthcare
practitioners are fully informed about the range of available
products and what exactly patients are entitled to access. This
demonstrates the very real potential for conflict between patient
choice and the allocation of resources by commissioners.
21. In fact, this often does not end up saving money
for the NHS or the wider public sector in the long term. Due to
the invasive nature of many continence products, any difficulties
experienced can result in a need for hospital treatment meaning
that such arrangements actually run the risk of raising the cost
of treating people who use continence devices.
22. The average cost for the admission of emergency
urethral catheterisation resulting from infection, is estimated
in the region of £1,500 per patient, per visit. In addition,
if patients are forced to change products, they must first be
clinically assessed before being prescribed with alternatives.
In specialist care, the associated and potential costs of such
procurement initiatives are a considerable expense for PCTs and
could potentially far outweigh any initial savings.
23. There are also the additional costs which result
from patients being unable to work or maintain an independent
lifestyle due to inappropriate provision of products. There are
examples of individuals represented by the UUGC being housebound
and reliant on carers for many years due to the fact that the
products which they have used have not offered them the confidence
and independence to leave the house for extended periods.
24. A further example of the kind of arrangements
which give cause for concern is the recent tender for urology
products issued by NHS Supply Chain (NHSSC), the organisation
which supplies into secondary care settings. However, the new
tender proposes to offer an off-script home delivery service to
patients in primary care settings, which would see NHSSC becoming
the "manufacturer" and supplying products directly to
25. There seems to be a lack of understanding within
NHSSC about the different needs for continence care in primary
care and secondary care - patients in hospitals using catheters
or other products over a short term basis will obviously have
different needs and concerns to those patients with long term
conditions who use continence products to help them cope with
day to day life, and has not been recognised in the proposals.
26. In addition to this, there is a concern that
such proposals will undermine Part IX of the Drug Tariff, which
provides price protection for the NHS and manufacturers supplying
products. If manufacturers can no longer afford to supply products
to patients, then this will have a direct effect on patient choice.
The proposals also threaten to remove patient choice over how
they receive their product (at the moment they are able to fill
prescriptions via a pharmacy or via a dispensing appliance contractor,
both of which could be undermined by the NHSSC proposals for an
off-script home delivery service given its dominant position in
27. The danger is that a national formulary could
develop out of restricted supply routes, replacing Part IX of
the Drug Tariff, and limiting patient choice further. NHS Supply
Chain have said that their aim is to achieve £1 billion of
savings to the NHS by 2016; however forcing patients to use inappropriate
continence products could undermine this if it ends up costing
the Government more money overall due to increased infections,
greater need for carers, the inability of those with long term
conditions to remain in employment, etc. It is important that
the overall picture is considered, rather than aiming to simply
make crude short term savings, and that patient interests are
put at the heart of decision making.
28. National developments such as this run a real
risk of undermining efforts at the local level, by GP consortia,
to increase patient choice and the role of patients in decision
making. While these decisions are of course not made by GP consortia,
they will inevitably impact on the arrangements in place for supplying
urology products through primary care and will not support GPs
in securing the best options for their patients.
29. The Secretary of State for Health has maintained
that there is no potential for conflict between GP commissioners
making clinical decisions and allocating finite resources, on
the grounds that the first duty of the GP will always be secure
the best interests of their patients. However, the developments
above show that there is a real potential for conflict between
making the best clinical decisions and allocating resources, something
which is only likely to increase in the current climate. We do
not feel that sufficient reassurances have been given that this
situation will be avoided under the new framework, particularly
as GPs will have little control over developments such as those
coming from NHS Supply Chain.
30. Therefore, we would welcome more information
on how GP commissioners will be supported to obtain the best treatment
for their patients, based on clinical considerations.
31. In particular, we would welcome more detail on
the role of the NHS Commissioning Board in promoting quality and
consistency and ensuring that a postcode lottery does not develop
for access to products once decision making is devolved down to
such a local level. Sir David Nicholson, the NHS Chief Executive,
has recently said that the role of the Commissioning Board will
be to safeguard the "core values" of the NHS, ensuring
a fair and comprehensive system across the country, promoting
the NHS constitution, and championing the interests of patients.
We understand that the Board will support consortia by providing
a national framework for local commissioning. However, we would
be interested in further detail on how problems can be drawn to
the attention of the NHS Commissioning Board and what steps they
will be able to take to promote patient choice and improved clinical
32. The UUGC agrees with the Committee that there
should be greater accountability of commissioners for their commissioning
decisions. It is vital that patients are able to make their voices
heard and explain to those commissioning services on their behalf
how they will be affected by the decisions they make. We agree
that more information needs to be made available about how this
will work in practice.
33. The UUGC agrees with the Health Select Committee
that more information is needed on how the areas of clinical involvement
in commissioning, on the interaction between commissioning and
patient choice, and on how GP consortia will be held accountable
at a local level. Bladder and bowel dysfunction are conditions
where patient choice is paramount in order to ensure dignity and
quality of life, and we are very keen to see how the new commissioning
arrangements will affect choice in urology products.