10. Evidence submitted by Breakthrough
Breast Cancer (PPI 42)
1. INTRODUCTION
1.1 Breakthrough Breast Cancer is the UK's
leading breast cancer charity and is committed to fighting breast
cancer through research and education. Breakthrough has established
the UK's first dedicated breast cancer research centre, in order
to obtain 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.
1.2 Our memorandum reflects the views of
Breakthrough and members of its Campaigns & Advocacy Network
(Breakthrough CAN)—which is made up of 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.
1.3 Breakthrough welcomes the Health Committee's
inquiry into Patient and Public Involvement in the NHS. Breakthrough
believes that in order to ensure a truly patient-led service,
it is essential that the systems and structures are robust and
meaningful so that the patient voice is heard at all levels of
planning, commissioning, delivery and evaluation of health and
social care.
1.4 Breakthrough welcomes the Government's
commitment to establish an effective Public and Patient Involvement
in health system. This policy and practice should be one of the
key vehicles the Government uses to make its vision of a patient-centred
NHS a reality. Breakthrough staff and CAN members would be willing
to provide oral evidence to this inquiry, if the committee would
find this useful.
2. What is the purpose of patient and public
involvement?
2.1 Breakthrough Breast Cancer believes
the purpose of patient and public involvement is to enable the
patient and publics to help shape local healthcare services so
that they truly reflect the needs of the population they serve.
It is important that patient and public involvement structures
do not simply become another means by which a complaint about
local services can be raised.
2.2 It is important to get both patients
and the public involved as they may have different health priorities,
all of which should inform the design of local healthcare services.
2.3 It is very important that patients and
the public have a stronger voice at a national as well as a local
level and the Government should ensure that the National Voices
project considers carefully how best to harness the expertise
of any new, local initiatives designed to involve patients and
the public.
3. What form of patient and public involvement
is desirable, practical and offers good value for money?
3.1 Breakthrough Breast Cancer would like
to see forms of Patient and Public Involvement that are well planned,
structured, staffed and resourced.
3.2 Some Breakthrough CAN members involved
in Patient and Public Involvement Forums have told us that the
protocol and bureaucracy involved in moving their work plans forward
left them feeling disillusioned and frustrated:
"I wanted to provide some information to
the South West Breast Screening Quality Assurance Reference Centre
from our Patient and Public Involvement Forum on our headed notepaper
and found the procedure of meetings and committees involved in
getting a simple information request approved very frustrating."
Quote from Breakthrough CAN member, Cornwall
3.3 Patient and public involvement should
be part of a simple and streamlined decision-making and change-effecting
process.
3.4 The constant change and reform of patient
and public involvement in health structures has also left many
of those involved feeling disillusioned and frustrated. It is
now important for the Government to put in place a system that
is effective and given time to "bed down".
3.5 Patient and public involvement systems
and structures should enable patients, the public, health care
professionals and other stakeholders to formulate a shared agenda
to improve patient services.
3.6 One example of how Patient and Public
Involvement can directly lead to tangible improvements in service
delivery is Breakthrough's Service Pledge. This project,
initially piloted in 2003 and now involving 10 breast units throughout
England and Wales, enables staff and patients to work in partnership
towards a patient-centred breast service. Beginning with patient
questionnaires and patient interviews carried out by trained members
of Breakthrough CAN, the Service Pledge asks patients to
speak up about what matters most to them. This often differs to
what staff may assume is a patient priority. For instance, patients
may simply want seating to enable them to chat to one another
in the waiting room.
3.7 Examples of improvement goals to date
include a photographic guide to surgery results, a waiting-times
board that communicates to patients the cause of delays and a
community drop-in service for patients in a rural area.
3.8 The end product of the project is a
Service Pledge leaflet, produced by each breast unit taking
part, which publicises to all patients the existing service available
and also a minimum of three patient-led improvement goals. A generic
Service Pledge is enclosed.
4. How should LINks be designed?
4.1 As well as providing opportunity for
those already involved in Patient and Public Involvement, it is
important to attract a wide diversity of people to get involved
in the new LINks. This will require new and innovative ways to
get people involved so that the membership of LINks truly reflects
the make-up of the population they will serve.
4.2 There should be a clear means by which
the new LINks are able to access the views of patients and the
public, as well as a means by which matters can be raised with
the new LINks. Where LINks wish to involve an adviser for a particular
review ie of breast cancer services, they should be encouraged
to contact patient advocacy groups such as Breakthrough CAN.
4.3 It is important to remember that those
involved in patient and public involvement are usually volunteers
who often have busy lives. The new networks should be made flexible
enough for people to get involved as much or as little as they
would like depending on their circumstances.
4.4 Through supporting and training members
to become patient advocates in their own right, Breakthrough CAN
aims to increase the influence of patients and the public in decisions
regarding all breast cancer and wider health issues. Similarly,
members of the new LINks, especially those with language, learning
or transport difficulties, should be provided with adequate training
and resources to support their role.
4.5 It is important that LINks work closely
with local authorities to help shape healthcare provision for
the local community. This relationship should be characterised
by transparency and accountability.
4.6 LINks should be mindful of their need
to focus on less obvious issues that affect patients, like access
to complementary therapies, welfare benefits, costs of travel
for patients and the promotion of local NHS services.
5. Wider public consultation and Section
11 of the Health & Social Care Act
5.1 Breakthrough welcomes the opportunity
for local people to be engaged in discussions around the changes
to local NHS services.
5.2 A number of Breakthrough CAN members
have told us that NHS Trusts are failing to engage with local
people about changes to local NHS services. They have told us
that their Trusts are not pro-actively telling the public about
proposed changes and seeking their views.
"I feel strongly that the Royal Cornwall
Hospital Trust did not fully engage in a proper consultation process
with regards to the recent and ongoing reconfiguration of local
services. The local Patient and Public Involvement Forum served
a Section 11 notice on the Trust as well as the Local Authority
Overview and Scrutiny Committee but it was not acted upon and
no formal explanation as to why not was provided."
Quote from Breakthrough CAN member, Cornwall, who
felt that by the time consultation was introduced the real decisions
had already been taken[6].
"I feel strongly that the consultation on
the Bristol Health Services Plan, with implications for local
breast care services, was carried out without any real effort
to engage with local people. Only six people commented on the
proposals for breast care services. Test Research, part of Mori,
did a telephone survey of 654 adults in Nov 2004 and discovered
that only 20% were aware of proposals for breast services."
[7]
Quote from Breakthrough CAN member, Bristol.
6. RECOMMENDATIONS
FOR ACTION
6.1 The Department of Health should commit
to maintaining a workable system for patient and public involvement
in the long term rather than the short term. There is a real danger
of patients and the public losing enthusiasm for the principle
of user involvement if the systems are constantly changed and
poorly communicated. Patients Forums were in existence for only
three years before it was decided that they needed to be changed.
Such changes may be necessary for the long term future of patient
and public involvement but can be unsettling for staff and volunteers
involved in the system and many Breakthrough CAN members feel
that the new changes need to be given due time to "bed down".
6.2 The Department of Health should review
the current roles and responsibilities of stakeholders including
the Healthcare Commission, Local Authority Overview and Scrutiny
Committees, Independent Complaints Advisory Service, the new NHS
Centre for Involvement and Foundation, Trust boards and members
councils as well as all NHS Trusts in light of the proposed new
LINks. This is necessary in order to clearly define their roles
and responsibilities, and their relationship to each other.
6.3 It is important that the Department
of Health considers how the role of the new LINks will develop
alongside other existing and proposed initiatives designed to
involve users and share best practice where applicable. Cancer
Network Partnership Groups, Patient Advice and Liaison Services,
peer review, community petitions, patient choice, the National
Voices project and the new NHS Centre for Involvement are
all examples of where LINks could and should have strong working
relationships to avoid duplication, co-ordinate work and identify
where they can add value to each other. It is also important that
the work of LINks is joined-up with broader Government initiatives
where they could add value, like the Government drive for Third
Sector involvement in public services.
6.4 Breakthrough Breast Cancer welcomes
the Government's efforts to empower Local Authority Overview and
Scrutiny Committees but in addition, every effort must be made
to ensure that those committees are working effectively with
local NHS Trusts and the new LINks to shape and deliver improved
healthcare locally. Some Breakthrough CAN members have raised
concerns that Overview and Scrutiny Committees do not currently
operate as an effective check and balance on NHS Trusts because
the Committees are perceived as not being independent from NHS
Trusts.
6.5 Breakthrough CAN members have told us
that the effectiveness of Patient and Public Involvement Forums
varies across the country. Breakthrough recognises efforts to
ensure that the new LINks are flexible but recommends that basic
expectations and core standards of engagement should be established
to ensure a level of consistency across the country.
6.6 There should be an annual evaluation
of LINks and any common themes in terms of the patient experience
should demonstrably feed into new Department of Health initiatives
to improve the experience of patients. This evaluation could be
incorporated into the Healthcare Commission's Annual Health Check,
although it is important that the Healthcare Commission seeks
concrete examples of meaningful engagement with LINks from Trusts,
rather than asking them simply to tick boxes to confirm that they
have consulted with them.
6.7 The Department of Health should consider
reviewing how Section 11 has worked in practice, by approaching
NHS Trusts, patients and the public that have been involved, as
well as the Healthcare Commission. The wording used in Section
11, "substantive change to patient care", needs clarification.
The Department of Health might wish to consider issuing guidance
supporting the operation of Section 11 in practice and good practice
examples of Trusts that have actively engaged with the public[8]
should be shared. Thought should also be given as to how the new
LINks will fit into ensuring that Section 11 works effectively.
Vicki Nash
Breakthrough Breast Cancer
8 January 2007
6 The Department of Health publication Keeping the
NHS Local: A new direction of travel, specifies that options
for change must be developed "with people, not for them"
right from the outset, "before minds are made up". Back
7
As stated previously, Breakthrough CAN members would be willing
to provide oral evidence to this inquiry, if the committee would
find this useful. Back
8
For example, Liverpool PCT's Big Health debate. Back
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