Lessons from Orchard Hill and Cornwall. United Response’s learning disability services show the importance of person-centred planning

The Orchard Hill inquiry exposed a lack of person-centred planning. One national charity’s approach, however, has transformed the lives of people with learning difficulties, discovers Graham Hopkins

The opening recommendation in the Orchard Hill report recognises the “fundamental importance” of individual person-centred plans. Their lamentable absence was at the root of the appalling services provided to 186 people with learning difficulties in south London.

As Orchard Hill and last year’s Cornwall scandal prove, moving people into the community isn’t enough. Once there, everyone deserves the chance to participate actively in their lives, rather than have things done for them. In 1998, the charity United Response wanted to take things even further, and began pioneering “person-centred active support”.

Practice development co-ordinator Bev Ashman says: “Engagement means actively participating, rather than merely being present, in the range of activities and social interactions of life. National research shows that non-disabled people are engaged for about 90 per cent of their waking day, but this drops to an average of 11 per cent for people with learning difficulties in community settings. Changing this meant radically rethinking approaches to caring.”

Person-centred active support, originally developed by the Tizard Centre, University of Kent, is defined as “providing enough help to enable people to participate successfully in meaningful activities and relationships, so that people gain more control over their lives, gain more independence and become more included as a valued member of their community”.

Ashman says: “The approach changes for each individual, but it can be applied to anything from helping people prepare food to taking public transport or finding work. It enables people to become more involved and make their own choices by breaking down tasks and activities into manageable chunks and ensures the support provided by staff is matched to the individual’s needs and preferences. Support is consistent to ensure that a single method for each activity is established, making learning easier.”

Working with the Tizard Centre, United Response independently assessed the support provided to 249 service users in 2000 and then again in 2005-6. “The first assessment found that one-third of people were ‘largely disengaged’, ” says Ashman. “Although that was better than other studies, we felt this wasn’t good enough.” This figure was to drop impressively to 14 per cent, while the number of people engaged for more than half their time rose from 13 to 31 per cent.

Professor Jim Mansell, founder of the Tizard Centre, says: “In the past five years, 75 per cent of the people United Response supports with severe learning difficulties have become more independent.”

Ashman adds: “Figures alone don’t tell the story real lives do. Take Sheila. Her involvement was limited to watching staff carry out activities around the house. She was largely disengaged, reluctant to go out and distressed about her weight, often making her aggressive and challenging, and many days she didn’t want to get up.”

Through person-centred active support, staff adapted the way they organise activities and developed new ways to support Sheila. “They introduced a morning routine so Sheila knows when to get up,” says Ashman. “They help her to do the parts of activities that she can do with their help. Sheila now gets herself up in the morning, washes, dresses and tidies her room. With staff help, Sheila has put together word and picture cards to help her remember which foods are healthy. She uses the cards to help her make a meal plan for each week.”

Sheila enjoys her independence and has become a lot more confident. She now regularly enjoys going out and seeing shows and is supported to work one day a week.

Despite its successes, Ashman warns that person-centred active support is not a simple answer. “It doesn’t yield instant results and requires patience, persistence and good management to implement properly. It must be constantly reassessed and updated. But it can move us a little closer to the goal of seeing people with learning difficulties live the rich, full and active lives we all deserve.”

Lessons learned
● Person-centred active support saw a significant number of people more engaged in activities, which led to three-quarters of the people surveyed improving their skills.

● Consistency of approach and regularity of routine are crucial to getting the best results.

● Practice leadership is vital, and staff skills must be developed to support people to engage in everyday life.

● Additional training and information sharing opportunities should be provided for staff who support people with severe learning difficulties and complex needs.

● Person-centred active support is not about the mere introduction of new forms and procedures – it is a rethink of the way we support people.

● For an information pack e-mail valuedlife@unitedresponse.org.uk

Contact the author
Graham Hopkins

This article appeared in the 1 February issue of the magazine, under the headline “The meaning of life”