Memorandum from Mencap
Mencap is the UK's leading learning disability
charity, working with people with a learning disability, their
families and carers. We believe people with a learning disability
should have choice, opportunity and respect with the support that
they need.
Mencap welcomes the opportunity to participate
in this consultation on how public services can more effectively
involve service users in the design and provision of services.
Mencap feels that more effort and creativity needs to be used
when consulting with people with a learning disability on these
matters. We would be very happy to provide oral evidence to the
Committee if required.
INTRODUCTION
The principle that users of public services
should be involved in decisions that affect them is now generally
supported. Service users have knowledge and expertise that would
complement that of policy-makers and service providers, helping
to improve the quality of services.
The process of involving people with a learning
disability in research and policy work is a continuing challenge.
Differences in interpretation as to what effective consultation
involves and its practical implementation have led to frustration
amongst service users and professionals alike. Meaningful involvement
requires constant reflection to ensure that the personal experience
of the individual is respected and as well as providing for genuine
involvement. This can be achieved by anticipating the communication
and support needs of people with a learning disability and meeting
them.
Also a recent and important piece of legislation
that relates to people with a learning disability is the Mental
Capacity Act which enshrines the principle that a person must
be assumed to have capacity unless it is established that he or
she lacks capacity. A person is not to be treated as unable to
make a decision unless all practicable steps to support him or
her to do so have been taken without success. Also a person is
not to be treated as unable to make a decision merely because
they make an unwise decision.
If a person's capacity to make decisions is
limited, they are not to be seen as lacking capacity, instead
they should be supported so that they can make as many decisions
as possible and offer their opinion on all issues that affect
them. These principles are directly relevant to policy-making
and service design and provision.
CONSULTATION RESPONSES
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?
During the recruitment process at Mencap, a
prospective employee will be interviewed by a panel of people
consisting of senior people that work within the relevant department
and they will also be interviewed by a panel of people with a
learning disability. As the prospective employee will be representing
people with a learning disability, Mencap as an organisation feel
that it is important for people with a learning disability to
be actively involved in choosing who will work with them and on
their behalf.
Since it started in 1999, Mencap's National
Assembly has played a key role in informing Mencap's policy and
campaign work. At least one third of the elected National Assembly
representatives must be people with a learning disability and
in fact around half of the members have a learning disability.
The Assembly played an essential role in the consultation of Mencap's
strategic plan, Choice, Opportunity and Respect and Mencap's new
corporate identity. This ensures that Mencap is campaigning on
the issues that people with a learning disability feel are the
most important.
At Mencap a group of learning disabled facilitators
are employed to aid Mencap in consulting with people with a learning
disability. The Listening to us consultancy team work within
Mencap's accessibility unit and a large part of their work is
giving advice to Mencap and other organisations about how to make
information easy to understand for people with a learning disability.
They have developed a way in which people with
a learning disability can participate in service design called
Past, present and future where the service user discusses
where they used to live/work or go to school and what was good
and bad about it. The service user then talks about where they
live now or what they do now and again what is good and bad about
it. The individual then talks about their future aspirations.
This can help to build better services.
These examples demonstrate how people with a
learning disability can play a substantive role in the development
of policy.
2. Is it possible to set minimum standards
for public services? If so, how is this best done?
It is possible to set minimum standards for
public services which no service should ever fall below. This
can be achieved through nation-wide consultation and examining
data on complaints.
The Every Disabled Child Matters campaign seeks
to ensure that the Government's Every Child Matters agenda delivers
for children with disabilities. One of the campaign aims is for
a specific, enforceable duty on local authorities to assess and
provide for the needs of disabled children and their families,
with a minimum entitlement to family support and short break services.
This would be termed as a "core offer".
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?
Public services have generally used satisfaction
surveys to capture the views of their service users in the past.
As with any communication with their service users, the format
in which they are presented should be developed with service users
in order to identify the most effective forms of communication.
This would need to involve all minority groups of people with
a learning disability including those with the highest support
and communication needs.
4. What constitutes best practice in responding
to complaints about public services?
Best practice would involve taking into account
the individual needs of different groups in the design of complaint
procedures so that they are accessible for each group. A person
with a learning disability may need support in making a complaint
and may need to do so in a format other than text, using graphics
for example.
Public bodies should collect information on
complaints and on appeals in a regular and systematic way and
feed this into future policy decisions. They should also update
the person who lodged the complaint at regular intervals and in
way that suits their needs.
5. Is information about complaining easy
to find and accessible?
Mencap can not comment about whether information
about making a complaint about each and every public service is
easy to find and accessible. However under the Disability Discrimination
Act 2005 Disability Equality Duty, introduced in December 2006,
every public body should be acting to ensure that people with
disabilities are treated equally. For people with a learning disability
this would involve considering their communication and support
needs and ensuring that information was presented in an accessible
format. A single point of contact for impartial information on
where to make a complaint could be helpful.
Mencap has developed the Listen up toolkit
which enables children to make complaints about the services they
use. Many of the best practice guidelines outlined in this toolkit
can be used when developing complaints procedures for adults with
a learning disability. The toolkit helps children to realise they
can make choices about the services they use and to feel confident
that their views and concerns will be taken seriously. The toolkit
also contains resources that enable the children to make a visual
representation of what part of the service they are not happy
with and how it makes them feel which is then used as a visual
record of the complaint which can be submitted to the relevant
person.
Case study: Cornwall Partnership NHS trust
In October 2004 East Cornwall Mencap Society
wrote to the Healthcare Commission (HCC) and the Commission for
Social Care Inspection (CSCI) raising serious concerns about the
care and treatment of people with a learning disability using
services provided by Cornwall Partnership NHS Trust. A joint investigation
was launched which found instances of physical, emotional and
financial abuse of service users.
The mechanisms that should have protected people
using the Trust's services failed. There was a lack of systematic
and effective processes for managing the performance of these
services and the complaints procedure was ineffective:
Information about complaints was available in
an accessible form, but the process was not promoted effectively
and did not cater for people who had more challenging communication
needs. During our visits, we saw only one area in the learning
disability directorate which had information on how to complain
in an easy to read form that was easily accessible to people using
the services and their carers and relatives. The Trust's board
acknowledged that the number of complaints and compliments was
lower than expected.[4]
6. Should users be more directly involved
in service delivery? If so, how can this be achieved?
Service users should be involved in service
delivery as this will ensure that services are fit for purpose.
This can be achieved through public consultation but again the
needs of people with a learning disability will need to be considered
so they can be involved in a meaningful way. If the consultation
involves people responding to questions then the questions should
be presented in an accessible format or perhaps in audio format.
Sufficient time should also be allowed for people to respond.
If public meetings are to be held then people
should be supported so they can share their opinions. This could
involve providing sign language interpreters or people should
be given supporters to assist them in participating. Also a "traffic
light system" could be used where people use colour-coded
cards to illustrate their views on a subject where a green card
signifies "yes", a red card signifies "no"
and an amber card signifies "maybe" or "undecided".
7. Are there certain types of decisions,
which are more suited to consultation than others?
Following the introduction of the Disability
Discrimination Act 2005 Disability Equality Duty in December 2006
all public bodies have a legal duty to actively ensure that disabled
people are treated equally. This should include consulting with
service users on all issues that will affect them. If decisions
are complex then efforts should be made to make these decisions
accessible to people.
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?
Mencap as an organisation represents people
with a learning disability but people with a learning disability
should be given the opportunity to offer their opinions. This
can be hard for people with a learning disability but advocacy
groups are enabling more people to speak for themselves.
Self-advocacy is speaking up for and representing
your own interests. It is what most of us do most of the time.
For people with learning disabilities and other vulnerable people,
self-advocacy is usually carried out with the support of a local
self-advocacy group.
Such groups are increasingly being run and staffed
by people with learning disabilities themselves. These include
groups such as People First, Taking Part, Speaking Up, and Voices
Into Action.
It is therefore imperative that government departments
make contact with advocates and self-advocacy groups when they
wish to consult with people with a learning disability. Organisations
such as People First, and the pioneering work of research organisations
like the Norah Fry Research Centre have led the way in user involvement.
Many people with a learning disability need
information in an easy-read format. This means writing information
using clear words that are easy to understand and using images
to help illustrate the points being made.
If the Government wants to effectively consult
with people with a learning disability then government departments
must produce documents in a format that can be easily understood
and responded to by people with a learning disability.
Case study: Welfare Reform Green Paper
The Welfare Reform Green Paper was published
on 24 January. Welfare reform is a key area of policy, which will
affect people with a learning disability. However the DWP did
not publish an easy-read version until 27 February. Guidance was
sent to all government departments in 2001 stating that the provision
of accessible information is good practice, and should be a special
priority for information aimed at disabled people, and for information
that seeks a response from the audience. The Welfare Reform Green
Paper, a consultation document about policies which will affect
disabled people, falls into both of these categories.
This meant that people with a learning disability
had significantly less time in which to respond to the Green Paper,
and the effect of this could be deemed as discriminatory under
the Disability Discrimination Act. The deadline for submissions
was then extended to compensate for this but we can not be sure
how much impact these submissions had on the development of policy
as we can not be sure that the writing of the policy was delayed
until after the deadline extension.
Mencap's accessibility team has worked with
some government departments when they are producing an easy-read
version of consultation papers.
In particular, Mencap would like to consider
children and adults with profound and multiple learning disabilities
who are among the most marginalised people within our society,
they have some of the highest support needs and are more reliant
on services. People with profound and multiple learning disabilities
(PMLD) have more than one disability which can include both sensory
and physical disabilities in addition to a profound learning disability
Consulting with people with PMLD is much more
complex than consulting with people with a mild to moderate learning
disability and it will not be achieved through documents in accessible
formats. Most people with PMLD find it difficult to understand
what other people say. However people with PMLD communicate in
lots of different ways through verbalisation, changes in facial
expressions or changing their behaviour.
Consultation with the parents and carers of
people with PMLD is appropriate in some instances but not all.
People with profound PMLD should be included in the consultation
process and be supported so they can share their experiences.
Effective consultation will need creative solutions. However consultations
with people with PMLD need to occur within a meaningful context
of what directly affects them. This will probably relate to service
delivery in the main.
There are a number of initiatives that have
demonstrated how people with PMLD can be included. Peer advocacy
refers to someone who has had similar experiences and who is prepared
to commit to a long-term and one-to-one advocacy relationship,
and speak up for and represent an advocacy partner's interests.
Informal peer advocacy relationships have been
common amongst people with a learning disability because of the
way in which people with learning disabilities have been forced
into each others' company and cut off from the rest of the community.
Now peer advocacy is emerging as an advocacy movement in its own
right.
Peer advocacy has always had close links with
self-advocacy. Peer advocates are usually supported by self-advocacy
groups, other forms of group advocacy, citizen advocates, or a
combination of these.
A person with PMLD can communicate through story-telling
where they share past experiences through re-enacting situations
or through the use of objects that represent activities therefore
demonstrating their thoughts and feelings. Other initiatives have
used film footage of events where the individual can control what
is being shown as a way of communicating their feelings.
Mencap is hoping to develop a toolkit which
will show the different ways in which organisations and bodies
can consult with people with PMLD.
9. How valuable are advisory panels in the
design and delivery of public services?
Advisory panels can provide valuable information
to aid in the design of services but effort must be made to ensure
that the panel members are representative of wider views. Public
bodies need to examine where they are recruiting people from and
how widely they are recruiting. If these panels are not made up
of service users but of representatives of organisations then
care must be taken to ensure that again they represent the views
of wider groups of people.
10. How does user influence relate to wider
issues of democratic accountability?
People who use public services should be consulted
about their choice of, and satisfaction with, service delivery
especially socially excluded groups whose opinions are harder
to attain. In 2001 the Government published Valuing People,
a White Paper which set out how the Government would provide new
opportunities for children and adults with a learning disability
and their families to live full and independent lives as part
of their local communities. Four key principles of rights, independence,
choice, and inclusion lay at the heart of the Government's proposals.
Five years on there have been improvements for
people with a learning disability in some aspects of their lives
but not all. As mentioned above in July 2006 a joint Healthcare
Commission (HCC) and Commission for Social Care Inspection (CSCI)
report revealed the physical, emotional and financial abuse of
people with learning disabilities at Cornwall Partnership NHS
Trust.
The HCC also recently published a report on
Sutton and Merton Primary Care NHS Trust's services for people
with a learning disability. The investigations into the services
found that the overall model of care promoted dependency and people
were cared for rather than supported to be as independent as possible.
The views of people with learning disabilities were seldom heard
and few staff had any specialist training in ways of communicating
with people with learning disabilities.
This demonstrates yet again that some professionals
working within service provision still discount the views of people
with a learning disability despite guidance from central government.
More needs to be done to achieve a cultural and attitudinal shift.
Therefore people with a learning disability need to be included
and consulted with on every aspect that affects them to achieve
this.
11. How should measures of public satisfaction
take account of complaints about policy rather than administration?
Mencap is not in a position to provide a response
to this question.
12. Are there situations where the views
and experiences of service users are irrelevant?
Service users should always be consulted about
any decision that will affect them. It may not always be possible
to meet the needs and wants of service users and their needs may
sometimes be in direct opposition to the priorities of policy
makers who must take other factors into consideration such as
budgetary constraints, but service users should always be given
the opportunity to give their opinions especially socially excluded
groups who are harder to reach.
February 2007
4 Joint investigation into the provision of services
for people with learning disabilities at Cornwall Partnership
NHS Trust (HCC, July 2006). Back
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