The role of a user led organisation
What do we mean by “user”?
The term “user” refers to people who use support services in a local
authority area. This includes people with disabilities, such as those with
physical impairments, sensory impairments, learning difficulties or
mental health issues. It also includes informal carers (as opposed to
paid personal assistants). It also includes parents of disabled children,
people with life-limiting and chronic illnesses, people with acquired brain
injury, people with HIV / AIDS, and people identified with alcohol and
substance misuse issues. It also includes other users of services such
as asylum seekers, people in the criminal justice system and victims of
domestic abuse. In short, in includes anyone who uses or who would be
eligible to or benefit from using support services from a local authority
social services department. (People who would benefit from a service
but are not currently using one may include those who don’t through
choice, self-funding, lack of knowledge of support services, or exclusion
due to eligibility criteria.)
These categories are what we might call “client groups”. It’s also
important to remember when thinking about service users that
geography and demography are also important. This means that user
led organisations should seek to include people not only from the above
client groups, but also from all geographical areas within a local
authority, both urban and rural, and also have representation from the
locality’s demography, such as people from BME (black and minority
ethnic) groups and LGBT (lesbian, gay, bisexual and transgender)
groups.
What is a user led organisation?
A user led organisation is one that is run and controlled by people who
use services. Such an organisation can be said to reflect three basic
criteria – values, power and knowledge – which differentiate them from
traditional voluntary sector organisations.
 Values: these are around independence, involvement and peer
support
 Power: the organisation is controlled by service users
 Knowledge: this refers to the lived experience of service users,
who become “experts by experience”
Within the core set of values, independence refers to independent living.
This doesn’t mean service users doing everything themselves, but being
able to access support to enable them to live independently.
The Department of Health has also issued 21 criteria that reflect what a
user led organisation should aspire to. Few user led organisations meet
all the criteria – they represent, rather, a “gold standard” of what a user
led organisation could be. However, there are some key areas that an
organisation would need to meet in order to be user led:
 That a minimum of 50% of the board of trustees is made up of
service users, and 75% of the management committee
 That the organisation promotes independent living and the social
model of disability
 That the organisation provides information, advocacy and peer
support
What about small groups who aren’t constituted but are clearly
controlled by service users?
There are many small groups which do not have a formal constitution
and do not offer services but are clearly run by service users. This may
include MS groups, Stroke groups, Alzheimer’s groups etc. These may
be affiliated to larger organisations that are not user led, but
nevertheless the small group remains run by users. These would more
likely be referred to as “self-help groups” or “peer support groups” rather
than user led organisations, however the key attribute of being user led
and crucially the peer support are important factors in larger user led
organisations. These smaller groups may also hold a wealth of client
specific expertise that is not available to larger user led organisations.
This is where consortiums or coalitions of user led organisations come
in.
What is a user led organisation consortium / coalition?
There are many different models of user led organisations. One that is
quite popular is what we might term the “hub and spoke model”. This
means there is a central user led organisation at the hub which has
smaller user led organisations as spokes. This benefits the smaller
organisations because it means they can have access to information
and funding streams that they might not have if they continued to work in
isolation, and also that people who need their support could more easily
be signposted to them. It also benefits the hub organisation because it
can then reach out to a diverse range of people within the community. It
benefits the individual in the community because they are better served
by a connected, communicating set of user led groups. And it benefits
the local authority because they are better able to engage with all
sectors of the community, including hard to reach groups.
What would a user led organisation do?
The role of a user led organisation is to give service users a powerful
voice in the shaping of support services within a local authority. It is also
about giving service users better access to information, advocacy and
peer support through the sharing of lived experience and expertise
gained by people who are service users. It seeks to empower service
users and champion their rights to overcome barriers and become full
and equal citizens within the community. It differs from some traditional
voluntary sector organisations in campaigning for the human rights and
equality of services users rather than providing traditional, charitable
services.
A user led organisation may do a number of the following to achieve this:
 Work as a ready-made model for a local authority to engage with
all sectors of the service user community in terms of the design,
planning, delivery and monitoring of services
 Provide peer-based information and advocacy, as well as more
general peer support. This capitalises on the expertise of service
users and their lived experience of receiving services. It
empowers those who use such services to go on to provide that
service for others
 Offer “experts by experience” training to social workers, home care
staff and other local authority and private sector provider staff
(much like the Experts Patient Programme in the NHS)
 Carry out access audits and inform on the Disability Equality Duty
 Provide peer-based support for people on personal budgets
(including direct payments)
 Provide peer-based brokerage support
One of the key points related to the first bullet point above is how a user
led organisation can work in co-producing services with the local
authority. Co-production is about putting service users and service
providers on an equal footing in the design of services. It is about
empowering service users to have a key stake in how service delivery is
designed, achieved and monitored. It is about moving away from the
provision of generic services (where people are fitted into pre-existing
services) and providing services tailored to individuals. In addition to
empowering service users, it is about empowering frontline service
provider staff to be able to engage in finding flexible ways of achieving
equality for service users and not being constrained within pre-designed
local authority systems.
Why have a user led organisation?
Apart from the obvious benefits to everyone outlined above from having
a user led organisation, it’s important to recognise that the direction of
social care provision is moving towards what we call personalisation and
the transformation of adult social care, which can be summarised from
the co-productive methodology of designed social care outlined in the
above paragraph. There is cross-party commitment to this model of
changing social care, and it will become more and more important in the
coming years. A thriving, sustainable user led organisation is the key
way in which the transformation towards personalisation can be
achieved.