Memorandum from Age Concern
1. SUMMARY
1.1 Age Concern supports older people to
make their views heard and involves older people in its work (the
submission provides examples). Voluntary organisations can share
some of their learning since successful engagement with individuals
is easier when services are local and have a client-focused ethos.
1.2 The minimum standards regulators require
public services to meet should also be citizen-facing guarantees
of service. Quantifiable minimum standards are welcome; they have
restricted "postcode lotteries", driven service improvements
and can prevent covert rationing. Qualitative standards should
set minimum benchmarks but also drive continuous improvement.
Human rights and anti-discrimination legislation provide important
standards for driving improvements in quality.
1.3 Customer satisfaction measures are helpful,
but a range of techniques need to be used, including outreach
to excluded groups. Data should always be broken down by age,
as well as race, gender and disability, and an age equality duty
should be introduced to make this mandatory. High satisfaction
can equate to low expectations.
1.4 There should be more user involvement
across many public services, but there is no one-size-fits-all
model. NHS user involvement has been undermined by repeated institutional
changes, although involving individuals as "expert patients"
has been a success. Our response suggests some principles for
user involvement.
1.5 Older people are over-represented in
some formal involvement processes but this seldom reflects the
diversity of older people. Engagement processes should not practice
age discrimination but instead widen the range of people involved
in every age group.
1.6 Consultation and user involvement needs
to be carefully designed. The issue is not usually "what"
should be consulted on, but "when" and "how".
Deliberative techniques and the use of expert representatives
can both be important. Voluntary organisations representing a
constituency have a responsibility to reflect the diverse views
and needs of their clients and to support and motivate them to
engage with services.
1.7 There is a place for formal advisory
panels and other "opt-in" mechanisms but services must
also find other ways to involve marginalised groups, including
many disadvantaged older people. Involvement mechanisms need not
undermine elected politicians, who should ensure the needs of
all their constituents are being served.
2. INTRODUCTION
2.1 Age Concern England (the National Council
on Ageing) brings together Age Concern organisations working at
a local level and 100 national bodies, including charities, professional
bodies and representational groups with an interest in older people
and ageing issues. Through our national information line, which
receives 170,000 telephone and postal enquiries a year, and the
information services offered by local Age Concern organisations,
we are in day to day contact with older people and their concerns.
We take a close interest in the involvement of users in public
services and are a member of the National Consumer Council's Public
Service User Forum.
2.2 We are pleased to be invited to submit
evidence to the inquiry. This submission reflects the range of
perspectives Age Concern brings to the issue of public involvement
in services. Age Concern itself acts as a representative of older
service users at local, regional and national level. We do this
in two ways, first, by directly representing older people's views
and, second, by advocating on behalf of older people, drawing
on our evidence and expertise relating to needs, effective practice
and public policy. Age Concern also acts as a channel for public
bodies to reach older people, in particular by organising consultation
activities with disadvantaged and marginalised groups of older
people. Just as importantly, we are, after the NHS, the second
largest provider of services to older people in the UK. We set
ourselves high standards for involving older people in our own
governance and service delivery. A growing amount of Age Concern
provision can be considered to be a core public service and therefore
the remit of this inquiry extends to much of what we do.
2.3 In recent years we have published two
reports of relevance to the inquiry. Public Involvement and
the Commission for Equality and Human Rights by Clare Collins
argued that the CEHR should play a major role in promoting the
involvement of disadvantaged and under-represented groups, and
place user involvement at the heart of its own work. The report
led to the Commission being set up with a duty to consult on its
plans. Rights for Real: Human Rights, Older People and the
CEHR by Frances Butler argued that the Human Rights Act has
not fulfilled its potential as a tool for improving the dignity
and respect shown to service users; their involvement in decision
making; and the balancing of competing needs.
2.4 This submission offers some reflections
on each of the committee's questions. We do not have operational
expertise on some of the issues the committee is considering,
so our answers are not intended to be comprehensive in their scope.
3. RESPONSES
TO QUESTIONS
(1) 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?
3.1 There is always scope for sharing effective
practice between the public, private and voluntary sectors, both
within the UK and internationally. Age Concern is committed to
developing and sharing good practice on involving older people,
although we do not claim to have all the answers or to be perfect
exemplars. We want to draw to the committee's attention to several
examples of our practice, which may be of wider interest. These
are set out in section 4 of this response.
3.2 In general we believe that public services
can learn from what voluntary organisations do well. Small voluntary
organisations, including many local Age Concerns, can excel at
tapping-into and reflecting the needs of their users. They also
tend to have the nimbleness to change what they do in response
to feedback. This suggests that size matters. It is one important
argument in favour of the Government's enthusiasm for devolving
power to the neighbourhood level or to individual business units
within the public sector. A caveat is needed, however. There is
no guarantee that decision-making at lower level, closer to users,
will automatically improve involvement. After all a smaller organisation
will usually have less capacity or professional specialisation
and effective involvement needs skills, time and money.
3.3 The values and culture of an organisation
are also very important. A real organisation-wide commitment is
probably the single most important factor in successful user involvement.
It is this ethos that makes much of the voluntary sector different
from public services, as they have traditionally worked. Although
charities have in the past been criticised for being too much
"for" rather than "of" their users, the sense
of mission created by charitable objectives means that voluntary
organisations are well-positioned to embrace involvement. Public
services come from a different starting point, with accountability
upwards and sideways rather than downwards, more rigid bureaucracy,
and a greater tendency towards being captured by "producer
interest". All this implies that it is harder to get the
culture right in the public sector—and that concerted leadership
is needed at every level.
(2) Is it possible to set minimum standards
for public services? If so, how is this best done?
3.4 Transparent minimum standards for public
services are an important tool in improving the quality and accountability
of services. In general our view is that there should not be separate
standards "for the public" and "for the service"
(ie separate "Citizen's Charter" style guarantees, over
and above the core standards against which services are inspected
and regulated). Instead we believe that mainstream internal standards
should be properly communicated to the public and mechanisms should
be available for individuals to complain if they are not observed.
3.5 For example the NHS Standards for Better
Health are a set of "core" and "developmental"
standards which NHS trusts and commissioned services are assessed
against by the Healthcare Commission. The "core" standards
are meant to be achieved at all times, but recent reports from
the Commission show this is not yet the case. Age Concern believes
that information about the existence of the standards should be
made widely available to the public. We also think that individuals'
reported experiences of services should be a guide to whether
standards are being met or not.
3.6 Improved communications about the NHS
standards would set out citizens' rights and responsibilities
with respect to services, and more generally would facilitate
the involvement of patients and the public. Patients would be
empowered to challenge any failure to meet the core standards,
giving them a more equal relationship with NHS providers. This
would also create a powerful incentive for the NHS to promote
engagement with the aim of proactively identifying areas of weakness.
As a by-product, frontline NHS staff, who are also members of
the public, would become more familiar with both the existence
and the content of the standards.
3.7 We have recommended to the Department
of Health that a leaflet on the standards should be delivered
to every household in England and that, as a minimum, information
should be available in all health and care settings and incorporated
into existing channels of information and advice for the public.
Particular attention should be paid to meeting the needs of people
who do not read English or who need information in other formats.
Quantifiable Standards
3.8 There are clear examples where the setting
of minimum standards has driven improvements in performance. For
example maximum limits for NHS waiting times have created an individual-focused
guarantee, which has acted as an important addition to targeting
average waiting times. By contrast in social care there are no
clear standards relating to waiting times for assessments or care
packages; this means that it has been relatively easy for services
to increase waiting times in response to financial pressures.
Targets based on the experience of every individual have real
meaning for people and greatly improve transparency; they are
a form of "bottom up" accountability. Information relating
to the average experiences of a group of service users is relevant
to service managers, policy makers and politicians; this is "top
down" accountability. We believe both are important. In recent
years however the latter have taken precedence over the former
and we recommend that the committee considers the case for a shift
in emphasis from targets based on averages towards universal minimum
standards.
3.9 There has been some criticism in the
media and parliament of guaranteed NHS standards (eg guaranteed
maximum waits for inpatient treatment and GP appointments). This
criticism has taken two forms. First there are concerns that targets
are poorly designed and create perverse outcomes (eg reports of
people being unable to make advanced bookings for GPs and of "unofficial"
waiting times prior to an initial hospital appointment). These
sorts of problems emphasise the importance of well-designed targets
that are closely linked to outcomes for the individual. We acknowledge
that the Government has made an effort to refine targets in recent
years. But it also shows the need for wider standards relating
to customer service, so that services are geared towards meeting
the needs and preferences of users across the board, rather than
just achieving specific measures.
3.10 This is not just an issue for the NHS.
Age Concern is aware of example of inappropriate or incomplete
standards across the public services. For example a rural local
authority developed a Local Area Agreement target to improve the
take-up of concessionary bus passes by older people. This target
bore almost no relation to the transport needs of older people
in the area, where the main issues were an inadequate bus network
(leading to low demand for concessionary passes) and a prohibition
on using bus concessions across district council boundaries.
3.11 The second criticism of NHS standards
has been that they restrict the ability of service providers to
prioritise according to need. We are less sympathetic to arguments
along these lines, although standards should not be so numerous
or onerous that a provider's room for manoeuvre is entirely constrained.
That said, Age Concern has traditionally favoured more rather
than less central prescription regarding what individuals can
expect from services. This is on the basis that the older people
are consistently opposed to "post code lotteries" and
prefer to see nationally uniform services.
3.12 We acknowledge that our position may
appear to come into conflict with the aim of encouraging services
to be more responsive and accountable to local communities. We
believe however that a place will always remain for transparent
and demanding national standards, particularly on issues that
matter to people everywhere. We also support local services going
above and beyond these standards (either at their own initiative
or in response to Local Area Agreements and similar negotiations).
In these cases, services should be transparently explain the standards
users can expect locally, rather than only relying on lower national
standards. Local Area Agreements should also be used to break
down service "silos" by defining and communicating to
the public a single set of standards relating to all the services
available in the area.
3.13 The impact of not having uniform and
transparent standards can currently be seen in social care, where
access to services is becoming more restricted. There is a national
framework for determining care needs (Fair Access to Care Services)
but local authorities decide what level of need makes someone
eligible for support based, rather than this being laid down by
national standards. The Commission for Social Care Inspection
has reported that due to current funding difficulties many authorities
have recently decided to only offer services to people with the
highest levels of need. Other authorities are managing resources
by introducing waiting times for assessments and services (see
paragraph 3.8). These decisions are not the result of local "responsiveness"
or "accountability" but the national crisis facing social
care funding. If there were tougher national standards on what
local authorities must provide, we believe this would prevent
covert rationing and expose the financial problems to national
scrutiny.
Qualitative Standards
3.14 The examples of waiting times and eligibility
for care relate to clearly measurable outputs. However, work by
the National Consumer Council and others has shown that satisfaction
with public services is determined just as much by people's experiences
of services as by measurable outputs. People's perceptions depend
on the environment in which they are delivered and, above all,
on the way they are treated by the staff who serve them.
3.15 Improving the way older people are
treated by public workers is a top priority for Age Concern. In
2006 the Healthcare Commission, Audit Commission, and Commission
for Social Care Inspection published Living Well in Later Life,
a joint report on progress in the implementation of the Department
of Health's National Service Framework for Older People. It concluded
that ageism, patronising or thoughtless behaviour, and a lack
of respect for older people were all commonplace in health and
care services. In response the Department of Health launched A
New Ambition for Old Age which emphasises the central role
of dignity in care and which has been followed up by a ministerial
campaign.
3.16 Minimum standards have some relevance
to improving the "qualitative" aspects of services.
In particular they are important as a baseline for setting out
what is completely unacceptable. For example Age Concern's Hungry
to be Heard campaign is targeting health workers to ensure they
follow existing standards and guidance to ensure that all older
people in hospital receive the food they need and any help they
require to eat it. In our view it is scandalous that nutrition
in hospital should be a cause for concern at all, but while this
continues to be the case it is essential that core NHS standards
exist on this issue.
3.17 On the other hand, many of the issues
around quality are less susceptible to minimum standards, because
they relate to "how" things are done and the attitudes
of workers. In these instances enhanced experiences are more likely
to be best achieved through a culture of continuous improvement
rather than bare compliance. Minimum standards as traditionally
understood therefore have less relevance.
3.18 In recent years Age Concern has been
considering the role of equality and human rights legislation
as a set of legal standards that have the potential to do more
than set out basic minimum thresholds. In 2006 we published Rights
for Real which argued that the Human Rights Act (and wider
human rights) provide a set of values and machinery for improving
the quality of services. Human rights require service providers
to approach questions from the perspective of the dignity, autonomy
and equality of each service user. The Human Rights Act means
services should consider human rights issues across all their
activities, balance the competing claims of different citizens,
and hear the views of those affected by their decisions. Age Concern
therefore believes the Act is a ready-made tool for instilling
a culture of respect and user involvement at every level of an
organisation.
3.19 The role of equality legislation is
also important. In 2006 age discrimination law was introduced
for the first time, but only in the fields of employment and adult
learning. Age discrimination legislation in the delivery of public
services would guarantee that people of all ages receive services
that are non-discriminatory and appropriate to their needs. But,
as with human rights law, legislation on age discrimination would
not just be about minimum standards but improvements over time,
since it would impose a requirement that as services improve for
one age group, all should benefit equally.
(3) 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?
3.20 Age Concern believes that customer
satisfaction measures have an important role to play in assessing
service standards. For example we welcome the proposals in the
recent local government White Paper for a greater focus on individuals'
experiences and perspectives in the national assessment of local
authorities.
3.21 But on their own, customer satisfaction
measures are not sufficient. In our experience high customer satisfaction
can reflect low expectations as well as high quality. Across many
services older people tend to report higher customer satisfaction,
in spite of other evidence that suggests they frequently receive
a worse service than younger people. This phenomenon may arise
from different attitudes to public services from a less consumerist
generation or ignorance about what services may be on offer to
others. In addition people with low incomes or living in disadvantaged
areas can also have low expectations of services, and poorer older
people may be doubly affected. Customer satisfaction measures
should not therefore be the only measure of service users' experiences;
objective national standards remain essential.
3.22 In addition, there are limitations
to the methodologies of many customer satisfaction measures. "Opt-in"
surveys have obvious flaws in terms of access and inclusion. People
with disabilities, who have language or literacy barriers or who
lack confidence are less likely to respond. It is therefore important
that statistically robust samples are used, which adequately reflect
the diversity of the users. Additional measures also need to be
used targeting people who would be missed by a survey (eg people
who are housebound, carers, people living in residential care).
There are also limits to the kind of information that can be gathered
in quantitative surveys. Carrying out qualitative research that
focuses on experiences, but also expectations and ideas for the
future should be a key part of customer satisfaction initiatives.
Examples could include focus groups that explore people's attitudes
to feelings about services while deliberative or visioning/scenario
techniques could be adopted to explore where services people would
like to see in the future.
3.23 It is essential that all customer satisfaction
measures take full account of the diversity of the population.
Public services are now expected to consult and analyse data in
order to identify differential impacts relating to race, gender
and disability (under the three statutory equality duties). Age
Concern believes that the same approach should be mandatory for
age. We are campaigning for the Government to introduce an equality
bill at the next Queen's Speech which would include an "age
equality duty". In the mean time we recommend that Government
departments, inspectorates, professional organisations and the
Commission for Equality and Human Rights promote age-based monitoring
and evaluation as good practice, throughout the public services.
(4) What constitutes best practice
in responding to complaints about public services?
3.24 Age Concern is regularly "copied
in" to complaints from individuals about public services
like the NHS, particularly when people feel their concerns have
not been addressed in the first instance. The issues highlighted
by older people and their carers are that their concerns have
not been properly considered; that an apology has not made; and
that no explanation has been made about how a problem will be
prevented in future. Our experience is echoed by the Healthcare
Commission's comprehensive 2007 report A Spotlight on Complaints
and we welcome the good practice it sets out, much of which applies
to all public services.
3.25 We believe that the key to complaints
is to consistently follow some fairly straightforward principles:
— Services should have a procedure
in place, use it, and keep it up to date. The procedure should
be prompt, transparent, easily accessed and actively promoted.
— As well as simply responding to individuals,
information about complaints should be systematically analysed
so that the implications for policy can be considered.
— Service leaders should be directly
involved in the process.
— The equality and human rights implications
of any complaint should be taken into account.
(5) Is information about complaining
easy to find and accessible?
3.26 We do not have any national evidence
with which to respond to this question. From anecdotal evidence
our impression is that access to complaints processes has improved
in recent years, but there is still variable performance.
3.27 We are concerned that websites and
contact centres could emerge as the only way to access complaints
procedures. While these channels are welcomed by the majority
of the population, including many older people, the most disadvantaged
in society can find them unsuitable. It is important that public
services maintain other ways to complain. These could include
use of: face-to-face offices; partner organisations, such as voluntary
organisations; and advocates, where people have difficulty in
communicating for themselves.
(6) Should users be more directly involved
in service delivery? If so, how can this be achieved?
3.28 In recent years there has been much
discussion about the value of involving users in the running of
services. It is not in doubt that some degree of involvement is
essential for the delivery of any responsive and effective service;
involvement can also increase people's "ownership" and
satisfaction with services. But the extent to which user participation
is feasible and desirable is likely to vary on a case by case
basis. The issues that need to be considered include:
— Do individuals have the time, commitment
and capacity to become involved? Will their involvement make enough
of a difference that they feel the process is worthwhile and worthy
of ongoing support?
— Are those who become involved representative
of the majority of users who do not actively engage, including
the most disadvantaged? Will the whole community benefit from
the commitment of a small group who become actively engaged or
will the engagement of the same "usual suspects" skew
priorities?
— What should the balance of power
be between the influence of a committed minority of involved users,
the decisions of elected politicians, the judgement of professionals,
and the availability of personal choice for each user?
— Do improvements in the responsiveness
and quality of the service justify the extra costs of involving
users?
3.29 Age Concern does not have a single
position on exactly what shape and form user involvement should
take. The range of considerations we have outlined means that
the scope for involvement should rightly vary. In particular the
extent to which user involvement extends up the "ladder of
participation" (from information-provision, through opinion-gathering,
to active control, oversight or "co-production") will
depend greatly on the extent of public enthusiasm. However, in
general we believe that efforts to engage users have not gone
far enough in many parts of the public services. It is desirable
that the further extension of collective "voice" accompanies
the roll-out of personal "choice" in the design of services.
3.30 At present there are particular concerns
about structures for public involvement in the NHS. Systems for
patient and public involvement have been subject to significant
change and uncertainty. Within three years of their establishment,
Patients Forums are to be abolished and replaced with Local Involvement
Networks covering both health and social care. Uncertainty about
both the organisation of involvement and the timescale for change
has left some parts of the country with little or nothing in the
way of a structure for involvement. The organisation of patient
and public involvement in the NHS has rarely acknowledged that
the main population group using services are older people—and
that the frailty of some of these people prevents involvement
through the traditional mechanisms of meetings, surveys etc. As
a result of this, many older people with the greatest need for
health and social care services, and who have greatest experience
of services, are often excluded from patient and public involvement
activity. Age Concern has recommended that there should be an
explicit requirement in the arrangements for patient and public
involvement to seek out the views of those who have had recent
experience of services and that the work of Local Involvement
Networks should be required to focus on those in greatest need
of health and social care support.
3.31 While NHS mechanisms for "voice"
have been in disarray, there has been more progress in developing
models for individuals to be "co-producers" of healthcare.
This goes beyond the "choice" agenda (which relates
to lifestyle choices and the personalisation of services) to encompass
the active involvement of patients in care. Through the Expert
Patient Programme, there is increasing acknowledgement that, with
appropriate training and support, people with long-term conditions
are best placed to manage their own health, seeking advice and
input from experts when needed. Patients are also well placed
to share their expertise with others suffering from similar health
problems. This aspect of "co-production" ensures that
service users can be "givers" as well as "takers".
Providing opportunities for older people to contribute to the
community, whatever their health, is key to promoting wellbeing
and good mental health (this issue is discussed in the First Report
of the UK Inquiry into Mental Health and Wellbeing in Later Life,
which Age Concern supports).
3.32 We suggest the following principles
for successful engagement:
— Mechanisms for involvement should
be driven by what users want and operate on a scale that is relevant
to them. The relative success of tenant management in social housing,
compared to the lack of enthusiasm for public involvement in NHS
foundation trusts, may be partly explained by the former being
chosen rather than imposed, and by the very different geographic
scales on which they operate.
— The needs of those who do not voluntarily
engage (often the most vulnerable and marginalised) must not be
overlooked. Strategies for hearing the voices of the most marginalised
must be developed to sit alongside "opt-in" engagement
mechanisms.
— User engagement must have a genuine
influence on the decisions that are made and its impact must be
communicated. Involvement will not be sustainable in the long-run
if participants do not believe they can make a difference. Therefore
feedback on what has happened (or not) as a result of people's
comments and ideas, with reasons, should be provided in a timely
and accessible way.
— Participation costs should be budgeted
for at the planning stage, including travel and expenses (refreshments,
care costs), interpretation and signing, advocacy and support
for people with disabilities
— If individuals are involved in consultation
as representatives of a wider group, they should be offered practical
help, support and resources as necessary to communicate with their
constituency. Mechanisms should be in place to ensure such individuals
have legitimacy with those they are intended to represent.
3.33 Turning specifically to the role of
older people, it is noteworthy that some groups of retired people
can be over-represented in formal user involvement initiatives.
The reasons for this are that older people tend to have more available
time and more long-standing connections to their local community.
It may also be true that today's older people have a greater commitment
to civic participation than younger generations (this could be
a "cohort" effect in which case the pattern would be
expected to change over time). However, older people are also
major users of many public services and spend more of their time
in the local neighbourhood than other groups, so this over-representation
is not necessarily inappropriate, if it represents a greater "stake"
in services.
3.34 The high numbers of older people involved
in some engagement processes does not, however, mean that public
services are necessarily tapping into the voices of older people
in all their diversity. Often the committed minority of people
who engage in user involvement come from fairly similar backgrounds,
in terms of class, race, and age. Older people who do not participate
tend to include the most excluded and marginalised (for example
people aged over 85, older carers, people living in isolated rural
communities, people from minority ethnic backgrounds, people in
residential or nursing homes, and people with long-term disabilities
and health conditions). In 2004 we commissioned a report on this
issue from Dr Clare Collins (Public Involvement and the Commission
for Equality and Human Rights) which proposed that the CEHR
should play a key role in promoting inclusive involvement (both
to public services and in its own work). Techniques for reaching
out to marginalised groups include recruiting voluntary and community
organisations to act as intermediaries, and involving service
users in the design and conduct of research and evaluation.
3.35 From time to time Age Concern hears
of incidents where older people have been prevented or discouraged
from taking part in involvement mechanisms because of concerns
that other age groups are under-represented. While we support
efforts to include all sections of the community in user involvement,
we strongly oppose any direct or indirect age discrimination.
For example many registered social landlords do not permit people
aged over 65 or 70 to sit on their boards. We fear that efforts
to reduce the number of older people participating in user involvement,
even if appearing well intentioned, may reflect deeper ageist
attitudes, which see older people as a single homogenous group
rather than as diverse individuals. We recommend that public services
who are concerned by the diversity of those they engage with seek
to reach out to a wider range of people of every age, rather than
pitting one generation against another.
(7) Are there certain types of decision
which are more suited to consultation than others?
3.36 We do not believe that there are any
decisions that should in principle be "off-limits" to
consultation with the public or organisations speaking on their
behalf. However there are a range of considerations that should
affect the nature of the consultation:
— What level is the decision being
made? It is not appropriate to consult where there is no room
for manoeuvre because decisions are being imposed from above (eg
EU or national level). Consultation should take place at the tier
the decision is made and clearly explain the range of choices
available (for example budget constraints).
— When should the consultation take
place? There is no point in consulting once a decision has
been made. "Cosmetic" consultations following political
decisions cause anger and disaffection. For example Age Concern
is aware of local authorities which recently consulted on tightening
eligibility for social care after they have set their annual service
budget. If influencing change is not possible adequate information
about the reasons for decisions should be published instead.
— Is technical expertise or specialist
information needed? In these cases it may be appropriate to
consult informed representatives who speak on behalf of an interest
group, as well as seeking the views of individuals. However the
choice of consultation technique is also important. In recent
years deliberative techniques have been used to gauge public reactions
to complex policy decisions, such as reform to the pensions system
and the NHS.
— Is it appropriate for values or
prejudices to be invoked? There are risks in consulting on
moral decisions, where majority opinion may not take sufficient
account of the interests of vulnerable minorities. This can obviously
be an issue with respect to religion or immigration. It also affects
older people, particularly in the sphere of medical ethics. For
example in 2005 the National Institute for Health and Clinical
Excellence drew up draft internal guidelines which suggested that
age could in certain circumstances be a legitimate criterion for
refusing treatment. NICE explained that this position drew from
the views of a citizens' panel. The guidance was changed following
campaigning from organisations like Age Concern.
2.31 Our conclusion is that the issue is
not usually "what" should be consulted on, but "when"
and "how". The timing of the consultation, the way questions
are framed, the information available to respondents, and the
techniques that are used are all essential for achieving a fair
and robust consultation process.
(8) Do official consultations typically
manage to capture the views of the right people? What kinds of
consultation are most effective in engaging with the appropriate
people?
3.37 Our response to this question draws
on many of the points made earlier in this submission. Consultation
always risks being restricted to the "usual suspects"
and public services must constantly assess how they can ensure
they consult in an inclusive way.
3.38 Consulting with professional organisations
working with a client group, such as Age Concern, is an important
addition to consulting users directly since we tend to have a
sound understanding of the needs of those service users who would
not normally get involved in consultation processes themselves.
Local and national voluntary organisations can also act as a channel
for public services to reach disadvantaged groups who would not
proactively participate in a consultation. Age Concern provides
this at national level through a dedicated Consultation Service,
and many similar channels exist at local level (see section 4).
However, the costs for organisations in taking on these roles
needs to be recognised, and suitable financial and other support
provided to ensure that consultation is effectively and that funds
intended to provide direct services to a client group are not
diverted.
3.39 Voluntary organisations have a heavy
responsibility to ensure that the positions they articulate reflect
the views or needs of their constituency in an inclusive and representative
manner. Age Concern is acutely aware that we need set high standards
in involving older people in our own influencing and campaigning
work in order to be seen as a credible voice for older people
(see section 4). Voluntary organisations also need to work to
support and motivate the people they work to get involved with
engagement processes more widely. Disadvantaged older people have
not traditionally engaged with the services they use; and service
providers, sometimes including voluntary organisations, were slow
to recognise the value of involving older people. This contrasts
to the situation for younger disabled people, where disabled people
have themselves agitated for representation and influence.
(9) How valuable are advisory panels
in the design and delivery of public services?
3.40 Advisory panels have the advantage
that they make is possible to engage in an ongoing informed dialogue
with individuals. Members are able to build up a body of knowledge
and engage with policy makers on a relatively equal footing. Indeed,
at national and local level Age Concern carries out much of our
influencing work through membership of advisory panels, as representatives
of older people. Often simply sitting at the table is enough to
ensure that policy makers are forced to think through the impacts
of their decisions for older people.
3.41 However there are a number of dilemmas
too:
— What is the status and remit of members
of a panel? Are the members representing a perspective or a constituency?
If the latter should they have obligations to gather views on
behalf of others?
— Should members be elected to confer
legitimacy or is this just another way of raising the barriers
to participation and restricting engagement to "usual suspects"?
— Are the members sufficiently representative
of the wider community? For example older people are represented
in many local communities by Seniors' Forums or Older People's
Advisory Groups which carry out valuable work but whose memberships
can be self-selecting and not particularly diverse.
— Should professional representatives
such as voluntary sector staff be included, to reflect the experiences
of people they work with? This is a trade-off between direct representation
and enhancing the expertise and range of perspectives brought
to the table (see paragraph 3.38).
— If advisory panels really are expert,
representative and inclusive, why are they only advisory? Should
they have direct control over decisions? How can this be achieved?
(10) How does user influence relate
to wider issues of democratic accountability?
3.42 At national level, formal consultation
and informal lobbying by representatives of users is an established
part of the democratic system. In recent decades the extent and
quality of consultation has increased, and there is little doubt
that this has improved the information available to policy makers
and their accountability to different groups within the population.
This has benefited the democratic process.
3.43 At local level, there is potential
tension between user involvement and democratic accountability
to both national and local politicians. This is particularly so
as user involvement moves up the "ladder of participation"
and users (or rather a small sub-group of users) have greater
control or influence. As discussed earlier, Age Concern believes
that national democratic accountability needs to have a place
in the delivery of local services, because most people do not
want to see wide variations in standards and outcomes based on
postcode. There are other constraints which will always limit
the scope for users taking decisions, including the need to take
on board professional advice and work within existing budgets.
These issues apply to local services whether they are provided
by elected local authorities or unelected bodies such as NHS trusts.
3.44 In the case of local government there
is however the additional need to manage potential conflicts between
elected members and the involvement of users. Age Concern does
not have views on exactly what balance should be struck between
user influence and formal democratic institutions, as circumstances
will vary widely. We believe however that local politicians should
have an important role in ensuring that the needs and views of
service users in all their diversity are taken into account (particularly
where the users involved are relatively small in number and unrepresentative).
Elected members should therefore aim to understand the perspectives
of people who do not engage with formal user involvement mechanisms.
3.45 The reality however is that there is
much more to do to create vibrant civic participation through
both democratic and non-democratic structures. The quality of
the decisions that are arrived at comes down to the skills and
experience of the individuals involved (whether they are elected
members or service users) and the relationship they have with
their professional advisers. Improving community decision-making
involves supporting people develop skills to make the most of
both democratic and service-user channels.
(11) How should measures of public
satisfaction take account of complaints about policy rather than
administration?
3.46 From the perspective of individuals
there is no clear distinction between policy, administration and
practice. The key issue is instead at what level a decision is
taken, and whether the information being gathered has the potential
to affect change; public satisfaction measures will not have an
impact if the team which has commissioned the survey does not
have the authority to respond to what it reveals. It is therefore
important that customer satisfaction data is fed-up to senior
management within services, and is shared and collated between
services and at Whitehall level, to ensure that lessons are learned
for policy makers at every level. We recommend that the committee
explores how, as local services take greater ownership of their
own customer satisfaction processes, the benefits of nationally
consistent methodologies and systems are not lost.
(12) Are there situations where the
views and experiences of service users are irrelevant?
3.47 We are not aware of any situations
where the views and experience of users are completely irrelevant.
For example we believe that reviews of back-office and IT functions
should focus on the needs of the customer, and this should involve
direct engagement with service users. For example Age Concern
(and individual older people) were invited by the Government to
be involved in the "transformational government" initiative,
even though this is mainly focused on systems issues, such as
IT and data-sharing.
4. EXAMPLES OF
AGE CONCERN
PRACTICE
4.1 Quality Standards—Age Concerns
in England are members of a federation with common quality standards.
In order to meet these standards Age Concerns must demonstrate
their compliance with our Statement of Expectation on Involving
Older People. There is a regular cycle of peer assessment.
"We expect that an Age Concern will be
able to show that it is led by what older people want. It will
value and encourage their active involvement in all aspects of
running the Age Concern, including identifying needs and gaps
in services and activities, raising issues on which Age Concern
should be campaigning, and participating in the planning of income
generation initiatives.
The Age Concern will do this by providing
evidence of how it:
— collects the views of a wide range
of older people, including existing service users and people who
have previously not been involved (1.1);
— responds to the views of a wide range
of older people through feedback, signposting to other services,
or providing direct services (1.2);
— knows about existing services and
activities in the geographic area it works in, and highlights
gaps in existing local services (1.3);
— helps older people to present their
own views (1.4); and
— takes account of older people's views
when planning services and activities (1.5).
Additionally, if an Age Concern works
with partners to involve older people or has paid staff then it
will also provide evidence of how it:
— knows the number and range of older
people who are involved as trustees, volunteers or paid staff,
and how these compare with the community profile in the geographic
area it works in (1.6);
— plans to develop the number and range
of older people as trustees, volunteers or staff to more broadly
reflect the community profile (1.7);
— shares good practice in involving
older people, within the federation and with local and regional
partners (1.8); and
— passes older people's suggestions
for campaigning and income generation to appropriate parts of
the federation (1.9)."
4.2 "Issue Selection" Procedure—Age
Concern England's trustees have mandated the charity to develop
a robust and transparent procedure for gathering and considering
all inputs from older people and organisations working with older
people. The aim is to ensure that the views of older people lie
at the heart of how we select the issues on which we campaign
and influence. All inputs from any channel (website, correspondence,
helpline call etc) are logged. Specialists assess those relating
to their subject area on a monthly basis. They provide feedback
to individual inquiries and prepare briefings on the views expressed
to alert colleagues to changing patterns of inputs. A regular
"issue selection" meeting of directors and senior managers
considers these reports and assesses how they should steer our
decisions about campaigning. For example, the process led to Age
Concern deciding to play a leading role in campaigns on post office
closures and funding cuts for adult learning.
4.3 Involvement in policy development—Age
Concern England's board approves the charity's position on key
policy issues on a rolling-basis, following thorough reviews of
relevant evidence, including the views of older people. When no
existing information on older people's views is available the
charity commissions research in advance of any policy position
being discussed by the board. We also commission focus groups
to test older people's reactions to Government policy proposals.
For example we published What Older People Want from Community
Health and Care Services to feed into the Department of Health
consultation leading up to the publication of Our Health, Our
Care, Our Say. In recent years we have developed our use of
deliberative research techniques. These have included focus groups
where participants are provided with information and briefing
(for example on the Human Rights Act) and all-day or two-day citizens'
juries and panels (for example on pensions reform and the future
of the family). The success of professionally-facilitated deliberative
events has encouraged local Age Concerns around the country to
organise their own more informal listening events on major policy
issues. For example 30 Age Concerns organised events on pensions
reform.
4.4 Facilitating marginalised older people
to have a voice—Local Age Concerns operate projects
to feed the views of hard-to-reach older people into local services.
For example the "Talk Back" project, hosted by Age Concern
Wakefield and District, gathers the views of frail and housebound
older people, using trained volunteers to build up a trusting
relationship. The project involves home visits and support for
people to keep diaries which record their day-by-day experiences
of care services. The project led to service users reporting greater
satisfaction with care services and improved self-esteem (evaluation
report available: A Right to be Heard by Jenny Willis)
4.5 Training for older people—Age
Concern has developed a "Voice and Choice" training
pack and course, which aims to help older people to get involved
in consultation activities. The materials are aimed at people
with no experience of involvement to boost their confidence and
skills.
4.6 Facilitating the involvement of minority
communities—Age Concern also aims to facilitate the
involvement of older people from minority groups, including people
from ethnic minority backgrounds and lesbians, gay men and bisexuals.
"Opening Doors" is a national programme raising awareness
of the needs of older LBG people, including work to support them
make their views heard about services. We also support the development
of forums of older people from minority ethnic backgrounds. For
example the Leicestershire and Rutland forum was initiated by
a local Age Concern and since its inception has been entirely
led by older people themselves. At national level Age Concern
facilitates a Black and Minority Ethnic Forum made up of community
groups working with BME older people around the country. The forum
influences our selection of issues to campaign on (eg entitlement
to Pension Credit during temporary family visits overseas) and
elects one of the charity's trustees.
4.7 Carrying out consultation for public
services—The Age Concern Consultation Service is a national
fee-charging service which helps public, private and voluntary
services consult with groups of older people. It organises focus
groups with participants recruited through networks of older people
who are in touch with local Age Concerns. Similar services are
frequently arranged at local level with Age Concerns acting on
behalf of local authorities or NHS trusts.
4.8 Developing good practice for public
services—several Age Concern projects have focused on
developing new methods or good practice in involvement. For example
three Age Concerns in the East of England were commissioned by
the Commission for Social Care Inspection to develop approaches
to consulting people with dementia and their carers about the
services they receive.
January 2007
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