Learning to Involve - Empowering service users and carers to work with public sector bodies

'Learning to Involve'

Introduction

The people truly qualified to judge whether our Health and Social Care Services work well are those who rely on them - the customers and their carers. But too often it is difficult for them to make their voices heard and explain to those providing the services what improvements could be made and how that might be achieved.

The innovative ‘Learning to Involve' project is helping to change that. It gives service users and carers the skills and confidence to speak up and the opportunity to speak out at forums and at training sessions, where around 150 Health and Social Care professionals a year throughout Devon are now gaining a new perspective on the effectiveness of their services.

Background

‘Learning to Involve' aims to empower service users and carers to work with public sector bodies and take part in shaping public services. And here, it is important to emphasise that Health and Social Care provision often affects carers as much as the users of those services - and they are also generally marginalised and isolated.

It's a joint agency project, developed and led by Exeter Council for Voluntary Service, with service users and carers and statutory partners. The foundations were laid back in 2000, but it has grown considerably since then, in both size and form, in line with the acceleration of the government's own ‘empowerment agenda'.

Prior to this, service users and carers were already being recruited onto forums by advocacy and carer projects, with the support of project workers. But it had become clear that to be really effective, they needed training - especially when they began to face greater responsibilities such as chairing the forums or participating in staff training and interviewing. As is often the case, there was also a risk of overloading the same small group of people with requests for involvement.

So, Exeter CVS developed an accredited version of ‘Speaking Up' training for service users with mental health and learning difficulties, carers and community groups. The 30 hour-long course gives them the expertise and confidence to take part in meetings and ‘speak up'; altogether, more than 300 service users (check) have learnt how to help train professional staff through these sessions. (Note: far more have been trained, but only about a core of 50 are currently involved in delivering this training)

At the same time, a range of public bodies were focussing their attention on the learning and development needs of their staff. They all recognised that patient, user and carer involvement was a vital requirement for the provision of high quality health and social care and that to achieve this, the agencies responsible would have to provide relevant training for all concerned. This led to Devon County Council and Exeter CVS joining forces with health authorities across the county to create the other strands of the ‘Learning to Involve' project - introducing carers and users directly into staff training programmes.

It is run by two staff. One, at the Exeter CVS, is responsible for recruiting, training and supporting the service users and carers. The other was based within the NHS and now at Devon County Council (joint agency post) and focuses on establishing the professional staff learning and development activities.

The carers and service users themselves come from many different backgrounds and are often both economically and socially disadvantaged.

Meanwhile, the roll call of participating organisations has grown to include Exeter CVS, voluntary, community and advocacy groups, the County Council, Devon Partnership Trust, the Devon and East Devon Primary Care Trusts (PCT is Devon-wide now), and the Royal Devon and Exeter NHS Foundation Trust.

Case Study Detail

‘Learning to Involve' is now running right across Devon, from the city of Exeter to the more remote rural areas.

Its goals are to foster innovative partnership working between the Public and Voluntary Sectors, and workable and sustainable protocols for involvement across Health and Social Care. It also works with carers and service users to encourage their active participation in staff development.

In collaboration with the Learning and Development departments of Health and Social Care services, users and carers were able to design and help present a range of training packages for staff at both front line and managerial levels. To take just two, ‘In My Shoes' cultivates customer care training for mental health staff, while ‘Real Lives' highlights carers' needs. All aim to break down barriers and develop a better understanding between those who provide services and those who use them; the sessions end on practical steps that can be taken to improve service delivery.

This approach to the continuing professional development of health and social care staff has also allowed carers and service users to speak directly to public sector bodies and explain the impact of attitudes, policies and procedures on their lives.

The project's potential benefits for the users and carers are fivefold. They can influence and improve the services they receive; it raises awareness of their situation; it provides the opportunity to meet others facing similar challenges; it fosters confidence and new skills and it is therapeutic, particularly for those with mental health issues.

It also meets a range of ambitions for Exeter CVS by helping to strengthen the voice of the Voluntary sector, promoting active citizenship and community empowerment and offering opportunities for voluntary and community groups to work together.

Meanwhile, the Health and Social Care bodies were keen to cement this principle of involvement firmly into their learning and development programmes, ensure continuing training opportunities for staff and the service users and carers who wish to take part - and provide the support for them to do so. 

Results

Hard data is limited to the number of service users and carers involved and the number of people trained on the different courses. During 2007-08 these were, respectively:

• In My Shoes:  250 staff and 33 carers and service users
• Assessment staff training:  48 staff and 6 carers and service users
• How to involve effectively:  42 staff and 6 carers and service users
• Induction for new staff:  96 staff and 20 carers and service users

The project has met a number of challenges. For instance, it's been difficult to establish whole-team training sessions, within individual bodies or across agencies, which would be more effective vehicles of change. Progress on cross-agency initiatives generally has been slow because of the time required from all parties.

There have also been signs of a lack of commitment to the training by some staff, who have given it a low priority - which may be due to otherwise unrelated issues such as internal reorganisations affecting morale. This has led to some sessions being sparsely attended or even cancelled, leaving service users and carers disappointed and de-motivated. 

However, the anecdotal evidence of success emerging from the learning and development programmes themselves is very strong. For instance, the feedback from training delivered to managers at the Devon Partnership Trust was overwhelmingly positive:

"I was surprised by how much more emotive the whole subject was by using direct users/carer experience and actually hearing that from them in person rather than just reading an account."

"The training was very powerful and it reminded me of why I wanted to work in mental health in the first place. I would like all staff to have an experience of this kind."

"The session brought into sharp focus the impact of how we deliver services on the everyday life experience of people using them. I take so much for granted in my life; freedom to make my own choices, take control of my own life, do what I want when I want and this is not always supported by what we as service providers plan or do. I could feel that service users felt defined by their symptoms and diagnosis and not their personal qualities, values and beliefs."

Some staff started to identify service developments that could emerge from the training:

 "We are working towards delivering recovery orientated services in the Trust. I understand that if this is to be achieved we need to change culture and expectations and that training, awareness raising, supervision etc are all an important part of this process."

"Service user engagement is really important...I would like to see further involvement in the delivery of clinical training and in designing jobs and recruitment processes."

Meanwhile, the feedback from those who delivered the training included:

"For me, as a carer, it was the level of involvement that struck me - everyone really working hard and contributing, so much laughter, so much kindness." (A carer facilitating an In My Shoes session for mental health staff)

"Because of the involvement I have had in the ‘Real Lives' carer awareness training, my confidence has grown and this has helped me in other parts of my life." (A carer helping to train Health and Social Care staff)

"Because of the work I have been doing on the In My Shoes programme, I have now qualified as a trainer and can work with the professionals on an equal basis." (A mental health service user)      

From the Exeter CVS perspective, the project is successfully helping to develop better partnerships between public and voluntary sectors in Devon. It is breaking down the barriers between those who provide the services and those who use them, offering the chance to work together to improve services, and demonstrating to public sector staff how to involve clients effectively.

It is also giving carers and service users throughout Devon a real opportunity to use their skills and knowledge in a meaningful way and enhance their personal development, leading in some cases to paid work.

Within the public sector bodies, the value of this training has been well-recognised and it is being extended to include the Children and Young People Services; further work has also been launched regarding older people and those with learning disabilities. Involvement activities are now firmly established in a range of learning and development programmes, meeting key Health and Social Care directives. Examples include a ‘Patient and Public Involvement Champions' programme at the Royal Devon and Exeter NHS Trust, mandatory ‘customer care' training at the Devon Partnership Trust, and the County Council-led ‘Safeguarding Adults' programmes. And more service users and carers are being encouraged to take part.

Conclusion

This project's achievements have in part been made possible by the national policy development towards user-led services within the Health and Social Care arena.

Meanwhile, empowerment at community or neighbourhood level by Local Authorities has become an explicit government goal and will come into force in April 2009 with the ‘Duty to Involve'.

That said, empowerment at local level is not a new concept; it has always been a guiding principle of community development. But many public body decision-makers still regard it as a new idea - the main challenge is to get them to see beyond mere ‘consultation' and explore the real meaning of empowerment.

The tangible progress made by the ‘Learning to Involve' project should not fail to inspire even the most sceptical empowerment practitioners: being able to change the attitudes and thinking of public body staff and managers through joint learning with service users - and for the latter to enjoy the experience - is powerful stuff indeed and should, surely, be a vital element of every empowerment process, whatever its context.