The Excellence Network’s top user involvement teams

Welcome to the Excellence Network, Community Care’s new honours programme which recognises innovative and impressive practice and shares it with the whole of social care. We have been looking for teams that are passionate and committed and have implemented progressive ways of working.

Today we can reveal the teams our judges felt demonstrated real excellence in user involvement. The five teams described over the following two pages have put users at the centre of their services. Over the next three weeks, we will be covering honoured teams in the categories of self-directed care, early intervention and training and development.

All the learning points from these teams and projects – and from many more – can be accessed through our free good practice database

Peter Beresford describes what involvement entails, while, further down, Rowenna Davis examines the honoured teams’ work

Peter Beresford

If ever there were a time when service user involvement had to be centre stage, it is now. With the government committed to a personalisation agenda for social care that prioritises choice, control, self-directed support and individual budgets, it is crucial that arrangements for effective user involvement are in place. If this fails personalisation may just be another forgotten innovation littering social care’s past, adding to its reputation for “initiativitis”.

We need to build on the examples of good practice we already have and make sure we pick up on the key emerging issues. The Excellence Network’s honoured teams offer a gauge of progress so far.

No one can pretend that meaningful user involvement is comprehensively embedded in the UK. Service users and their groups still too often rightly complain of tokenism. But if we acknowledge the importance of some of the priority issues being addressed by projects such as those described opposite, then there is some real chance of achieving the involvement pioneers have struggled for.

Five priority issues for involvement are highlighted for me and echoed in the Excellence Network awards:

1 The first and perhaps biggest issue that emerges is the need to involve everyone on as equal terms as possible. Otherwise, existing barriers and exclusions will be reinforced. That’s perhaps why there has been talk of involvement that goes “beyond the usual suspects”. Too often young and older people have been ill-served when it comes to involvement. Little real change tends to happen as a result of the greatly hyped involvement of children and young people. Unfortunately participatory arrangements also frequently pass many older people by, offering them little real voice. Yet they make up the largest group of social care service users. Projects such as the ones featured on the following pages are a significant sign of progress.

2 Imaginative approaches need to be developed to encourage everyone to engage. This concerns those service user groups facing particular barriers. Involvement has to mean more than meetings, committees, surveys and conventional public speaking skills. Entries for Community Care’s Excellence Network set down markers for how much further we can go to connect involvement with people’s everyday lives.

3 User-run services are crucial. There has long been evidence that service users particularly value such services for the empathy, understanding and appropriate support they can offer. They are especially valued in the mental health field where traditional medicalised responses still so often predominate. It’s encouraging to see a user-led crisis service here (the Leeds team).

4 Involvement should be much more than a neutral technical exercise, which hoovers information from patients, public and service users. It needs to be value-based, seeking to build on and advance values, like those of the social model of disability and independent living, to secure people’s empowerment.

5 Involvement should be a collaborative venture where groups work together to increase people’s control over their lives. That’s the aspiration underpinning the honoured team in the disability section (Stockton). It should be a goal of all involvement – and it’s the one service users talk about most – seeing real change result from getting involved on equal terms.

Rowenna Davis examines the the honoured teams in the User Involvement category

Older people

The Eden Alternative

The Eden Alternative from Accord Housing Association sets out to cure what it calls the “three plagues” affecting older people: loneliness, helplessness and boredom. Across the project’s three residential homes – located in Telford, Oakengates and Birmingham – Eden has created “elder-centred communities” where life revolves around continuing contact with plants, animals and children. The relationships arising from this help to cure the isolation all too often felt by older people. By encouraging older people to garden, grow their own food and help look after animals, Eden’s approach also provides an innovative antidote to feelings of helplessness.

Unlike most residential care homes, Eden’s centres aim to deviate from routines. Staff strive to defeat boredom by creating an environment where variety and spontaneity remain possible.

Part of Eden’s success has been to ensure that the activities it provides are meaningful as well as entertaining, something that staff believe is essential for everyone’s mental well-being, regardless of age.

Their approach seems to be working: following the implementation of its guiding principles, Eden has witnessed a reduction in cases of depression, psychotropic prescriptions and behavioural difficulties among users.

Employees have also benefited. By involving workers in designing the centres’ guiding principles, Eden has reduced staff turnover and greatly increased their enthusiasm and creativity.

Michelle Barker, care and support manager at Eden says: “Implementing the Eden Alternative has given us the opportunity to embrace an innovative vision of a positive future for older people and those working alongside them. Specifically, involving plants, children and animals in everyday life has enabled us to achieve a culture change, and a significant move toward true person-centred practices.”

Children and Families

The Big Bruvver Project Team

Can we ever “reach the hard-to-reach”? Using an innovative and contemporary new model, Staffordshire Children’s Trust seems to have done just that. Capitalising on the popularity of Channel 4’s Big Brother, the trust created a “mobile diary room”, where young people on the streets of Staffordshire were invited to speak for one minute on what it was like to live in their area and what they’d like to see done differently.

Partnership working was essential in getting this project off the ground. Staffordshire’s Fire and Rescue Service agreed to temporarily transform their mobile incident unit into the Big Bruvver Bus. The mobility this offered was essential for accessing local young people, while the unit’s fire engine appearance helped attract immediate attention. In the end, the project took the views of over 300 hard-to-reach young people directly to decision makers, and their views have helped influence policy.

After watching footage from the diary room, district councillors decided not to renew a local curfew order, and to keep youth services open at weekends. The Big Bruvver experience shows that with a little innovation, “hard-to-reach” groups may not always justify their label.

Mental health

Leeds Survivor Led Crisis Service

This service is designed and run by people who have suffered from mental health crises in the past, for people who are suffering in the present. The team, made up of 12 employees and 30 volunteers, provides an alternative to statutory services for mental health sufferers in the heart of Leeds. Services provided include Dial House, a calm place of sanctuary that is open from 6pm-2am Friday to Sunday, and Connect, a telephone helpline that is open every evening. Group sessions have also been established to help the lonely and isolated.

The service is a working example of the benefits of survivor-led services. Staff have been able to draw on their personal experiences to design targeted support. Their past history also fosters a sense of empathy and warmth towards clients, who say that the service feels less judgmental than statutory provision. This is particularly important given that users are often high risk between 40%-50% of Dial House users are suicidal and self-harm presents an issue in about one third of visits.

Users listed their learning points for other organisations as the five elements of effective support: listening treating people with warmth, kindness and respect people don’t feel judged or assessed being in a different and calm environment and peer support.

Learning disabilities

Life and Social Skills

The Life and Social Skills team runs an HFT day service for people with learning disabilities in Kingston, Surrey. When users said that they wanted to work in the centre’s canteen, staff formed a joint working party with users to help turn their request into a reality. Following a consultation with canteen staff it was decided that, following contract expiry, designated refectory workers would be replaced by service users.

One member of the canteen staff was interviewed to become a support worker, and she worked with service users on food hygiene and health and safety issues. Service users were involved at every stage of the changes, and helped produce accessible menus for other users. Up to six users now work in the canteen every day.

They have expanded services to provide morning and afternoon refreshment breaks, and are currently in the process of developing a sandwich-making service for meetings and training events. Two key lessons arise from this team’s experience first, extra funding isn’t always necessary to implement change – by getting users to take on services themselves, you can foster independence and keep costs down. Second, it demonstrates the importance of listening to users, who are often the best sources of successful innovation.

Disabilities

Stockton Parent Support

Stockton Parent Support is run for a group of parents with disabled children. Formed in 1999, it aims to promote and develop parents’ ideas for improving services and opportunities for children with disabilities in Stockton on Tees. The group places heavy emphasis on inclusive activities, and offers disabled users a chance to learn and play alongside other children.

The group organises activities including dance and drama groups, arts and crafts workshops, storytelling sessions, sporting events, cheerleading, pantomimes and music. The group’s experience demonstrates that shared activities are often the best way of building meaningful relationships between children.

It may only have a formal team of seven, but Stockton Parent Support manages to run two participation groups to constantly review their work. The group believes that if participation is to be meaningful, then every decision must be reviewed with users. Together, staff, parents and children have looked at everything from session content and participation rules to venue choices. They have learned that starting consultation on small decisions is a good way to get procedures in place to move on to larger issues. Starting small also helps staff become comfortable with the idea of stepping back and ceding control.

What the judges said

Gary Fitzgerald (pictured), chief executive of Action on Elder Abuse: “I was incredibly impressed by the way in which Accord Housing was applying human concepts to the care of older people, and integrating their care and support into normal societal activities. It has understood what it is to be human, the need to be valued, useful and wanted.”

Kathryn Stone, chief executive of Voice UK for people with learning disabilities: “Life and Social Skills’ HFT started to shift the focus of day services from a traditional model to a user-led model and showed a real involvement of users in plans for delivery of services at a range of levels.”

Andrew McCulloch, chief executive of the Mental Health Foundation : “I have long argued for a range of crisis services including user-led services. Leeds Survivor Led Crisis Service shows us how.”

The other judges were Sue Bott, strategic director of the National Centre for Independent Living, and Chris Hanvey, operations director, Barnardo’s.

This article appeared in the 17 April issue under the headline “Users at the core”