Memorandum from Breakthrough Breast Cancer
1. INTRODUCTION
Breakthrough Breast Cancer is the UK's leading
breast cancer charity and is committed to fighting breast cancer
through research, campaigning and education. Breakthrough has
established the UK's first dedicated breast cancer research centre,
in order to realise our vision: a future free from the fear
of breast cancer. Breakthrough campaigns for policies that
support breast cancer research and improved services, as well
as promoting breast cancer education and awareness amongst the
general public, policy makers, health professionals and the media.
Breakthrough's Campaigns & Advocacy Network
(Breakthrough CAN) is a network of over 657 individuals and 97
organisations. Many members of Breakthrough CAN have personal
experience of breast cancer as well as being involved in and working
alongside their local NHS to try to deliver better treatments
and services for people affected by breast cancer and their families.
Breakthrough welcomes this inquiry into public
services. Our memorandum focuses on the need for service users
to be involved in the planning, delivery and evaluation of public
services, which requires resources and time.
2. Can public services learn from the way
that either non public sector organisations or overseas governments
make use of user experience in service delivery and design?
Public services can learn from the voluntary
sector which is already co-ordinating its experience of user-involvement
to create a standard of best practice in the sector. This standard
and the performance indicators developed to measure and evaluate
progress of user-involvement towards best practice, should be
shared across sectors, which can help reduce duplication of resources.
User-involvement is not an end in itself—it
is a process by which to facilitate better decision making and
more relevant services. The "user-involvement in voluntary
organisations shared learning group", National Voices, and
the NHS Resource Centre for Patient and Public Involvement continue
to set a precedent for shared learning across the voluntary and
public sectors. Public services can particularly learn lessons
in engaging with hard-to-reach, minority, and marginalised communities
and groups from voluntary sector organisations.
3. Is it possible to set minimum standards
for public services? If so, how is this best done?
Yes it is possible. The present approach, with
regards to health and social care, is through Department of Health
National Minimum Standards and waiting time/treatment targets.
Targets can play a positive role in establishing good practice,
and as a tool, help measure patient experience and satisfaction
with services.
Overall, the approach should be to set standards
based on the views of patients, rather than just imposing them
and then consulting. With regards to patient involvement, this
is outlined in Section 11 of the Health Act 2004, which requires
all trusts to consult with patients before making major changes
to services.
A good example of patients and health professionals
setting minimum standards for their local breast cancer services
is Breakthrough's Service Pledge for Breast Cancer. Further information
on the Pledge can be found in 7.
4. What role do measures of customer satisfaction
have in assessing the standards of public services? How should
user views be monitored? How can the cost effectiveness of user
surveys and feedback mechanisms be assessed?
Customer satisfaction is an indicator for good
practice and legitimate representation of the needs and interests
of service users. In addition to providing the opportunity to
comment on the quality of the existing service, users should have
an opportunity to comment on what they feel was missing from their
experience, and to suggest changes and solutions to resolve known
and perceived problems.
User views should be monitored using diverse
methods that have been selected for their appropriateness and
accessibility. As a general principle, involving users in the
design of evaluation methodologies, such as surveys, focus groups,
and user-panels increases the relevance and accessibility of that
method.Wherever possible, service users should be consulted about
their views and experience of services before, during, and after
their time as a user of that service.Cost effectiveness can often
be measured against the cost of an organisation making mistakes,
handling on-going complaints, or even litigation, had the consultation
or evaluation not taken place. Similarly, such a consideration
will need to include the costs associated with, and implications
likely to flow from, the loss of public confidence in the service
provided.
5. What constitutes best practice in responding
to complaints about public services?
Complaints procedure best practice should provide
an uncensored and safe opportunity to feed in strong or controversial
views. There should be a clear, jargon-free, complaints procedure
available in a variety of formats and languages, clearly communicated
to service users. There should also be a clear time-scale for
responding, resolving, or taking a complaint to the next level.
6. Is information about complaining easy
to find and accessible?
There are several routes a service user can
use to complain about the health service. Service users can formally
complain via the Independent Complaints Advisory Service. The
Healthcare Commission is also involved in the complaints procedure.
Service users can also approach the Patient Advice and Liaison
Services (PALs) or Patient Forums to make a more information complaint.
However, the number of routes available to raise a complaint may
also lead to confusion for some service users who may not feel
they know the most appropriate route.
7. Should users be more directly involved
in service delivery? If so, how can this be achieved?
A good example of patient involvement in design
and delivery of public cancer services is Breakthrough's Service
Pledge for Breast Cancer. The Service Pledge is a tool that enables
patients and healthcare professionals to work in partnership towards
better local breast cancer services. Through consulting patients
about what improvements matter most to them, a locally produced
Service Pledge sets out the standards patients and staff believe
are important and encourages them to work together towards meeting
these improvement goals.
With increasing demand on healthcare professional
time, there is scope for service users to get more involved in
"supporting" the delivery of public services. The growing
role of the voluntary sector in both health and social care is
in some cases key to the success of the service. In the US, volunteers
are used in hospitals to support patients, and chaperone them
between departments. A good example is Johns Hopkins University
Hospital, where the number of volunteers outnumbers staff (1,600
vs 1,500). An aging population presents a large pool of people
who could be willing to donate time to ensuring that patients
are provided with the practical information (eg helping to direct
patients around a hospital building), emotional support and companionship
which some healthcare professionals feel they are no longer able
to provide.
Members of Breakthrough CAN have been involved
in supporting various elements of service delivery, from supplying
information for booklets and leaflets for newly diagnosed breast
cancer patients, to facilitating meetings between Patient Forums
and local healthcare managers to ensure a quality breast screening
service is in place:
"After my meeting with local healthcare
chiefs I now feel confident that the new breast screening service
in Exeter will be of the highest standard, offering a flexible
and accessible service for all women in the area. Exeter Primary
Care Trust (PCT) is working closely with the NHS Breast Screening
Programme to ensure this."
Quote from Breakthrough CAN member, Devon
Another Breakthrough CAN member is Vice-Chair
for her local Cancer Network:
"Having the patient voice heard here is
really important. A lot of the Partnership Group's work is about
ensuring a more patient-centred approach to cancer treatment is
implemented locally."
"I'm really proud of what we have achieved
at the Cancer Network. Patient representatives have helped develop
a best practice award for patient-centred care and helped develop
and run welcome evenings for radiotherapy patients at the hospital,
for example. We know that's made a big difference to how people
feel about their treatment."
A quote from Breakthrough CAN member, Sussex
"We also set up our own, task-focused
working groups that take up issues. We prioritise, like follow-up
appointments for breast cancer patients and training staff to
treat newly diagnosed patients sensitively. We also identified
that some GPs were unaware that a genetic test for breast cancer
is available and are working to communicate better with GPs to
end this."
Women have also told Breakthrough how radiotherapy
services could be improved from a service user experience. For
example, volunteers could show service users around the radiotherapy
unit before they begin treatment to help them familiarise themselves
with the service and to meet the staff. The development of peer
matching with ex- service users could also be promoted so that
women can talk through their treatment with someone who knows
the process. The idea of a "volunteer mentor" appealed
to many women:
"Having a mentor figure when you arrive,
to show you where to wait, where the toilet is, someone who is
there for you and can answer some of the more personal questions
you might have about treatment would be fantastic"
Quote from Breakthrough CAN member, Essex
8. How valuable are advisory panels in the
design and delivery of public services?
Advisory panels can be useful, but the key to
a successful advisory panel is representation, influence and transparency.
It is therefore important that the remit and influence of an advisory
panel has been clearly communicated to both staff and user representatives
to ensure this device has a clearly delineated function within
decision-making processes.
In preparing recommendations on how to meet
a Government commitment that all people with breast problems will
be seen within two weeks by a specialist following a GP referral,
Breakthrough created an advisory panel. Representation on the
panel was from healthcare professionals from across breast cancer
services as well by patients. The panel proposed a new advanced
nurse practitioner role for breast care nurses to ease capacity
in the breast clinics and help meet the target.
Members of Breakthrough's advisory panel now
sit on the Department of Health breast cancer working group which
is taking forward the advanced nurse practitioner role.
9. Are there situations where the views and
experience of service users are irrelevant?
There may be instances where the decision in
question does not have relevance or influence to the life and
experience of the service user, and therefore not appropriate
or applicable to them. It is important for public services, and
any organisation engaging with users, to re-consider which decisions
are currently understood by "meaningful and relevant",
and ensure that their definition reflects the views of their user
group, rather than what is convenient or cost-effective for the
organisation or public service.
February 2007
| 
