56. Evidence submitted by Macmillan Cancer
Support (PPI 111)
EXECUTIVE SUMMARY
— The purpose of patient and public
involvement is to improve the patient experience by ensuring that
health and social care services are responsive to patients' needs
and wants.
— A variety of methods of patient and
public involvement are required to improve the patient experience.
— All forms of patient and public involvement,
including informal involvement, must be well-resourced.
— Long-term funding should be provided
to fund user involvement facilitators for cancer network partnership
groups.
— Users should always be involved in
the governance structures of health bodies.
— User involvement needs to be at the
heart of the commissioning process and encouraged by inclusion
in performance measures, Payment by Results and contracts.
— LINks must be independent of the
Department of Health and local authorities.
— LINks should consider the whole of
the patient experience.
— Members of LINKs should be compensated
for lost earnings and reimbursed travel expenses.
— LINks must be properly funded and
resourced.
— The Department of Health should identify
where there might be overlap of interest with other LINks.
— LINks should contribute to complaints
procedures and processes and lead activities to establish satisfaction
with services.
— The development of LINks should be
kept under review to ascertain if a lack of statutory powers is
hindering the ability of LINks to effect change.
— Overview and Scrutiny Committees
should formally ask for evidence from LINks at least twice a year.
— OSCs, trusts, commissioners and regulators
should explain how they have worked with LINks in their annual
reports.
— The guiding principle of LINks should
be that they are user representative bodies.
1. INTRODUCTION
1.1 Macmillan Cancer Support is a UK charity
working to improve the lives of people affected by cancer. We
provide practical, medical, emotional and financial support and
push for better cancer care. A core part of Macmillan's work is
to support and take part in patient and public involvement. By
providing funding and support to cancer network partnership groups
and self-help and support groups, Macmillan encourages partnerships
between users of healthcare services, healthcare professionals
and carers to improve healthcare services. We have embedded CancerVOICES,
a national network of over 500 cancer service users, into our
activities and we also support the national partnership forum
that brings together members of all the cancer network partnership
groups to influence cancer services.
2. What is the purpose of patient and public
involvement?
2.1 Macmillan believes the purpose of patient
and public involvement is to improve the patient experience. User
involvement can take a variety of forms but should ensure that
health and social care services are responsive to patients' needs
and wants. Macmillan uses the term "user involvement"
to include patients and carers, any of whom may wish to contribute
their views and experiences to improve the patient experience.
The Department of Health's 2004 publication, Patient and Public
Involvement in Health, sets out the benefits of patient and public
involvement, including increased patient satisfaction, improved
relationships with health professionals and influencing NHS policy.[37]
— The purpose of patient and public
involvement is to improve the patient experience by ensuring that
health and social care services are responsive to patients' needs
and wants.
— A variety of methods of patient and
public involvement are required to improve the patient experience.
Case Study—Patient experience, Arden Cancer
Network
A laryngectomy patient had a hospital procedure
that required an overnight stay in hospital. After the procedure
he was given oxygen and the mask was placed over his nose and
mouth. He in turn moved it to his neck and was admonished by nursing
staff for doing so. The patient and his carer then worked with
the user group, the Laryngectomy Association, and the Royal College
of Nursing and Emergency Services to develop a training programme.
It has been devised specifically for resuscitation techniques
for "neck-breathers" and these training sessions are
delivered to emergency service staff including ambulance and fire
crews and nursing staff.
Source: Arden Cancer Network
Partnership Group End of Grant Report 2006
3. What form of patient and public involvement
is desirable, practical and offers good value for money?
3.1 Macmillan supports a range of patient
and public involvement methods. User involvement mechanisms should
allow for all individuals to have a say in the service they receive
personally as well as collectively and must be well-resourced.
We believe that all forms of patient and public involvement offer
value for money, as involvement mechanisms usually rely on voluntary
activity. Costs are incurred, often in the form of a paid facilitator,
administration and reimbursement of expenses, but these costs
are relatively inexpensive when compared to the service improvements
that user involvement achieves.
Case Study—Communication tool, 3 Counties Cancer
Network
Patients and carers felt that they did not have
enough basic information at the beginning of their journey. User
groups, the Cancer Network Partnership Group, Network Site Specific
Groups (NSSGs), Clinical Nurse Specialists (CNSs) and Network
staff all contributed to the development of a patient information
folder, launched in March 2006. It is now given to all newly diagnosed
cancer patients in the network, giving pointers to further information,
contact details of key staff and sources of support.
Source: 3 Counties Network
Partnership Group End of Grant Report 2006
3.2 Methods for involving patients and the
public range from one to one involvement in consultations with
clinicians to formal local and national user involvement structures,
covering both specific disease areas and generic health and social
care issues, including Patient and Public Involvement Forums (PPI
Forums) and self-help and support groups. Macmillan has supported
the establishment of over 700 self-help and support groups by
providing grants and training. Self-management by a patient of
their own care is another method of involvement, an example of
which is the Chronic Disease Self Management Programme, part of
Macmillan's Living with Cancer project.[38]
This programme is run by people who have had a cancer diagnosis
for others with a cancer diagnosis and helps participants to get
more out of life by action planning and goal setting.
3.3 The Department of Health patient involvement
agenda has tended to focus more on formal patient involvement
structures, and though the Health Select Committee's inquiry is
focussing primarily on formal methods of involvement, the importance
of patient involvement during informal interactions between healthcare
professionals and patients should not be forgotten. We believe
the culture of the NHS needs to change so that patients are routinely
involved in decision making in partnership with clinicians. Healthcare
professionals should be provided with appropriate training as
part of their core medical training and ongoing professional development,
including the provision of advanced communication skills training
as required. The wider use of evidence-based decision making tools,
"power questions",[39]
and written treatment plans should be explored. Macmillan believes
that support and information is also key to facilitating greater
patient involvement in decision making. For informal methods of
public involvement to work successfully, healthcare professionals
need sufficient consultation time with patients, proper support
and must understand that listening to and working with patients
and the public requires a different relationship, one of listening
and facilitation.
3.4 Macmillan, in partnership with the Department
of Health, has developed a successful model of user involvement,
the Cancer Partnership Project. The project provided pump priming
funding over three years for user involvement facilitator posts
to support partnership groups in cancer networks. These groups
bring together cancer service users and health professionals and
are now established in all of the cancer networks in England.
Partnership groups consist of around 15 patients and meet on average
every month. They are supported by staff, ideally a minimum of
a full-time facilitator and part-time administrator but in some
networks user involvement is not seen as important and staff resource
is significantly and inadequately less.
3.5 The Cancer Partnership group model recognises
that users and healthcare professionals have a common interest
in working to improve the quality of care and, as such, is a unique
and effective approach, signalling a change in the culture of
the NHS towards real partnership working. Users are represented
on the Network Board and its various sub-committees and also take
part in the peer review process through which networks are audited.
An independent evaluation of the Cancer Partnership Project showed
that partnership groups have brought about tangible improvements
in information, communication of bad news, transportation, parking,
waiting times and the design of new buildings.[40]
The evaluation also found that partnership groups functioned better
when supported by a dedicated facilitator rather than a health
professional for which facilitation was a secondary role. However,
since the project funding has stopped, some of the groups have
struggled to secure sufficient long-term NHS funding. Macmillan
believes it is essential that long-term funding is provided to
enable user involvement facilitators to continue to develop partnership
groups.
Case Study—Communication of significant news,
North East London Cancer Network
The effective communication of significant news
was identified as a key area in supporting cancer patients and
carers when they are given sensitive, life changing information
concerning their health and wellbeing. The Patient Partnership
Group provided positive and negative experiences of the communication
of significant news, along with examples of policies and a protocol
that health professionals can follow. A cancer service user representative
took the evidence to the Palliative Care Advisory Board and this
led to the development of a resource to support the communication
of significant news between patients, carers and health professionals.
The Palliative Care Advisory Board are hoping to develop a Network
wide policy on the communication of significant news in the near
future.
Source: North East London
Cancer Network Partnership Group End of Grant Report 2006
3.6 The Government needs to ensure that
user involvement is embedded into the commissioning and provision
of health and social care services, so that the patient voice
is at the heart of service improvements. Macmillan believes users
should always be involved in the governance structures of health
bodies, to ensure the patient voice is heard at strategic and
operational levels of organisations. Measures for encouraging
user involvement should be introduced into performance measures
and could be included in reward mechanisms such as Payment by
Results, perhaps through the development a QOF-style system of
quality indicators.
3.7 Macmillan also believes that users must
be involved in the commissioning process. The user voice is currently
not well represented in the commissioning of services yet in the
new NHS environment there will be more emphasis on better commissioning.
Local Involvement Networks (LINks) could bring together users
to contribute to commissioning decisions, for example, in priority
setting, ensuring that non-NHS providers comply with their contracts
and ensuring that local services reflect the needs of the local
population. A requirement to consult and involve users should
be a condition of funding for all providers supplying the NHS
and should be included in the Commissioning Framework and the
NHS model contract. Introducing such measures would ensure that
all providers, including private providers, consult and involve
users routinely.
Recommendations
— All forms of patient and public involvement,
including informal involvement, must be well-resourced.
— Long-term funding should be provided
to fund user involvement facilitators for cancer network partnership
groups.
— Users should always be involved in
the governance structures of health bodies.
— User involvement needs to be at the
heart of the commissioning process and encouraged by inclusion
in performance measures, Payment by Results and contracts.
4. How should LINks be designed?
4.1 LINks will be a new formal method of
user involvement, replacing PPI Forums. Macmillan welcomes the
fact that LINks will build on existing user involvement bodies
rather than inventing new structures. LINks should play a role
in building the capacity of existing user involvement structures
to ensure the user voice influences the development of health
and social care services.
4.2 LINks offer the opportunity of bringing
together users and user organisations to engage in discussion
and debate across the whole spectrum of local health and social
care services and to hold local services to account to effect
change. If LINks simply run box-ticking, paper based consultations
then this opportunity will be lost. Patients and the public with
an interest in health or social care or of specific areas should
come together to focus on general issues through LINks and identify
common areas of work informed by their own experiences.
4.3 Remit and level of independence
4.3.1 It is imperative that LINks are independent
of the Department of Health and of local authorities and are free
to consider all aspects of health and social care. The geographical
remit of LINks will allow members to scrutinise the whole patient
journey, from primary and social care, through to secondary care,
including both NHS and private providers, to hospices and nursing
homes. In this respect, LINks will have an advantage over PPI
Forums, which were attached to individual trusts. With the introduction
of choice in health care, and where users are given more control
over their own social care provision through personal budgets,
it will be important that LINks take a wholly encompassing view
of health and social care, and use their user perspective to hold
providers and commissioners to account across the full range of
health and social care services.
Recommendations
— LINks must be independent of the
Department of Health and local authorities.
— LINks should consider the whole of
the patient experience.
4.4 Membership and appointments
4.4.1 LINks will bring together the public,
patients, users and organisations representing patients or users,
resulting in a wider membership base than PPI Forums. One of the
problems of PPI Forums is that they have a small membership which
is not always representative of the local population. The Government
has said that members of LINks may choose to appoint or elect
a panel or board to represent them and make decisions.[41]
PPI Forum members were initially appointed by the Commission for
Patient and Public Involvement in Health and now this function
is conducted by the Appointments Commission; the potentially wider
membership base of LINks offers an opportunity for an individual
LINk to make decisions about its own governance and membership
structures, which is welcome.
4.4.2 To encourage wide-ranging representation
and encourage participation, Macmillan recommends that members
of LINks are compensated for lost earnings and reimbursed travel
expenses. LINks should also encourage user involvement within
local organisations, by providing training and sharing best practice
and provide advice and support to the local community on how to
access health and social care complaints systems.
Recommendation
— Members of LINKs should be compensated
for lost earnings and reimbursed travel expenses.
4.5 Funding and support
4.5.1 If LINks are to be successful, they
must be sufficiently funded so they can effectively bring together
users and user groups within their geographical remits. Details
of the funding formula for LINks are yet to be announced. The
ability of LINks to engage effectively with local users and user
groups will depend heavily on the skills and resources of host
organisations, though the Department of Health will issue guidelines
on the standards of service and a model contract.[42]
4.5.2 We believe that LINks would require
at least the same amount of staff resource as PPI Forums. PPI
Forums are usually supported by two to three full time equivalent
employees. Administrative costs of LINks are likely to be higher
than those of PPI Forums as the host organisation will be servicing
a larger membership. There are around 550 user organisations for
cancer patients in England, all of which would be eligible to
join their local LINk and there will be many more organisations
supporting other users throughout the country, plus individuals
representing their community who would be eligible to join.[43]
4.5.3 Local authorities will hold the budget
for LINks and issue the contract for local host organisations
to support LINks. There is a danger that this will mean that the
independence of the host organisation may be compromised. Local
authorities must ensure that tendering procedures for awarding
contracts to host organisations are transparent and independent.
Recommendation
— LINks must be properly funded and
resourced.
4.6 Areas of focus; Relations with local trusts;
Complaints
4.6.1 A LINk will be established for each
local authority with a social services remit, whereas PPI Forums
are currently established for individual trusts. As LINks will
be set up for each local authority with a social care remit, LINks
may overlap with each other, particularly if they set up sub-groups
to scrutinise hospital trusts or other services, as trusts are
not fully coterminous with local authorities. Coupled with the
introduction of choice in healthcare, which means that patients
may travel further afield for care, it is likely that not all
the users of a particular health and social care service will
belong to the same LINk. LINks will need to work closely together
and each LINk will have to decide how far its remit stretches.
The Department of Health should identify where there might be
overlap of interests.
4.6.2 In a 2005 report, the Health Ombudsman
noted that the NHS complaints system is not centered on patients'
needs. The report also noted that a significant number of complaints
cut across more than one NHS organisation, which means that LINks
may be better able to effect change due to complaints, as they
will have a wide geographical remit.[44]
The report also noted that there was potential to involve Patients
Advice and Liaison Services, Independent Complaints Advisory Services
and PPI Forums in reviewing complaint procedures and we recommend
that LINks takes a role in scrutinising the complaints procedures
of trusts. LINks should work closely with PALS and ICAS and should
be notified if there is a recurring pattern of complaints. LINks
should also take the lead in conducting consultations and gathering
information to establish satisfaction with health and social care
provision.
Recommendations
— The Department of Health should identify
where there might be overlap of interest with other LINks.
— LINks should contribute to complaints
procedures and processes and lead activities to establish satisfaction
with services.
4.7 Statutory powers; Overlap with other bodies
4.7.1 It is disappointing that LINks will
not have statutory powers. We recommend that the establishment
of LINks is kept under review, in particular to see whether a
lack of statutory powers hampers the activities of LINks. If LINks
are to bring together patients and the public to improve the patient
experience, then they must have the ear of trusts, commissioners,
providers, and regulators so that users' views are heard and acted
upon. A review of the LINks pilot sites should also be conducted
to identify whether a lack of statutory powers is hindering activity.
4.7.2 As LINks will not have statutory powers,
it will be essential that LINks and Overview and Scrutiny Committees
(OSCs) work closely together, so that LINks are effecting change
through the statutory powers of the OSCs. We recommend that OSCs
formally ask for evidence from LINks at least twice a year.
4.7.3 LINks will also need to work closely
with regulators to coordinate inspections and share findings.
The Healthcare Commission and other regulators should seek the
views of LINks when conducting annual checks and specific investigations.
It might also be appropriate for LINks to provide regulators with
reports or alert regulators to possible bad practice. LINks must
form positive working relationships with the Boards of Governors
and Directors and members of local Foundation Trusts; Foundation
Trust members could join LINks. We recommend that OSCs, trusts,
commissioners and regulators include details of how they have
worked with LINks in their annual reports.
4.7.4 In the Government's response to "A
Stronger Local Voice", it states that a Visiting Code of
Conduct will set out guidance for LINks that wish to conduct visits
and that inspectors or visitors of health and/or social care services
should have the "right" skills and training.[45]
It is important that sufficient funds are provided for such training.
The Code is yet to be published but Macmillan believe that the
"rights" it will contain should not preclude the majority
of LINk members from conducting visits or require users to undertake
extensive training. The guiding principle of LINks should be that
they are user representative bodies and they should not require
their members to become semi-professional in order to participate
in some of their activities. We would urge the Department of Health
to consult on the Code.
Recommendations
— The development of LINks should be
kept under review to ascertain if a lack of statutory powers is
hindering the ability of LINks to effect change.
— Overview and Scrutiny Committees
should formally ask for evidence from LINks at least twice a year.
— OSCs, trusts, commissioners and regulators
should explain how they have worked with LINks in their annual
reports.
— The guiding principle of LINks should
be that they are user representative bodies.
4.8 National coordination
4.8.1 Effective coordination at a regional
and national level will be essential if LINks are to represent
users and achieve change across social services and the NHS; users
will inevitably have concerns or views that are replicated regionally
or nationally. Macmillan has been involved in the development
of proposals for "National Voices", an umbrella body
bringing together national organisations representing users. It
is not yet clear whether "National Voices" will be established,
nor is it clear how LINks would interact with "National Voices"
once LINks are established. We hope that LINks and "National
Voices" would work closely together.
5. In what circumstances should wider public
consultation (including under Section 11 of the Health and Social
Care Act 2001) be carried out and what form should this take?
5.1 Section 11 confers on each Strategic
Health Authority, Primary Care Trust and NHS trust a statutory
duty to make arrangements with the aim of involving patients and
the public in the planning and decision making processes of that
body, if changes will affect the operation of the health services
for which the body is responsible. In relation to Health Authorities,
this covers both the hospital and community health services for
which they are responsible and the family health services provided
by practitioners in their area.[46]
5.2 Consultation should be conducted through
a variety of channels, including public meetings, speaking to
local user groups, surveys, polls and so on. Circumstances where
consultation should occur include significant changes to local
services such as relocating or closing a unit but it would also
be appropriate to consult on the detail of service provision,
for example, car parking charges at the local hospital.
6. CONCLUSION
6.1 Well-resourced patient and public involvement
mechanisms can bring about real changes in NHS services. The Government,
providers and commissioners must embed patient and public involvement
at all levels of the NHS and involvement must not be tokenistic.
Macmillan broadly supports the proposals for LINks. However, their
success will be dependant upon funding, the skills of the host
organisation and the ability of LINks to bring together users
within a local community and coordinate activity regionally and
nationally. Governance and funding arrangements have yet to be
made public. We recommend that the Health Select Committee conducts
a follow-up inquiry into the operation of LINks once they are
fully operational. LINks must be independent, have the interests
of all users at their heart and establish effective working partnerships
and dialogue with Overview and Scrutiny Committees, local health
and social care services and regulators.
Laura Thomas
Macmillan Cancer Support
January 2007
37 Department of Health, Patient and Public Involvement
in Health: The Evidence for Policy Implementation, 2004. Back
38
Developed by Stanford University in the USA, and through the Long
Term Medical Conditions Alliance and the Expert Patients Programme
in the UK. Back
39
Power questions are designed to empower patients by asking the
right questions of their clinicians during consultations. Back
40
Sitzia, J, Cotterrell, P, Richardson, A, Formative Evaluation
of the Cancer Partnership Project: Final Report, 2004, Independent
evaluation commissioned by Macmillan Cancer Relief and the Department
of Health. Back
41
Department of Health, Government responses to "A stronger
local voice", 2006. Back
42
Department of Health, Government responses to "A stronger
local voice", 2006. Back
43
NICE, Improving Supportive and Palliative Care for Adults with
Cancer, 2004. Back
44
Office of Parliamentary and Health Ombudsman, Making things better?
A report on reform of the NHS complaints procedure in England,
2005. Back
45
Department of Health, Government response to "A stronger
local voice", 2006. Back
46
Explanatory notes, Health and Social Care Act 2001. Back
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