Foreword - "Nothing about us without us"

In 2004 the Department of Health (DH) allocated £2 million to support research focusing on the impact of a National Service Framework for Long-Term Neurological Conditions (LTNCs). One of the first actions was to set up a stakeholder Advisory Group to steer the project.

Determined to ensure the meaningful input of people who use services from the beginning, the Group included three people with direct personal experience of impairment and two carers; together these five people made up a quarter of the total membership. From the start it was considered essential to make sure the voice of those who receive services and their carers was loud enough to be heard:

“… it did feel that we were genuinely an important part of the process and I am convinced that the involvement of service users made a real difference to the form, quality, and focus of the research projects selected and supported." (Conrad)

Although elsewhere progress is being made in the field of patient and public involvement (PPI), it is still rare for service users to be fully involved right at the beginning of a project and even rarer for them to be in large enough numbers to make a real difference:

"As someone with a rare neurological condition, which I have had for over sixty years, the opportunity to be involved in research, at any level, isn't that frequent." (Sandra)

It says something about our belief and commitment that, eight years on, we are all still involved with the Advisory Group. This has taken considerable effort, but we feel it has been worth it. We have played a full role in the initiative through taking part in:

"I felt that my contributions were valued equally with other members of the Advisory Group and made a difference to the way the project was implemented… We have used our life experiences to enrich the research process making sure that disability was represented in the research projects as being a result of society's structures rather than individual illness. I am sure that our involvement with the researchers has made a difference to the way they think about PPI and its value. We have raised important issues and have added value to the research reports." (Christine)

Care was taken to make arrangements that enabled us to be fully included:

 "Meetings were always arranged with full access including communication needs and location, being of primary consideration. … I have received full payment for my expenses together with an attendance fee, paid at INVOLVE recommended rates." (Christine)

When we were not able to get to meetings other ways were found to enable us to take part, including videoconferencing:

"However, modern technology allows participation in other ways and anyone who feels they have a contribution to make to improving services by whatever means should be encouraged to do so." (John)

There is no doubt that we have found the experience to be positive and rewarding.

“It could be the most important thing that anyone might do." (John)

“I learnt a lot about other neurological conditions and services and have been able to share this with others and am now involved with a local disability group." (Gillian)

“The work of the Advisory Group provides an important model of how to achieve patient and public involvement (PPI) in all aspects of research." (Christine)

We hope that the research projects' findings will help to influence future policies, procedures and practice in the delivery of health and social care services.

Christine Barton
Gillian Chedzoy
Conrad Hodgkinson
John Holt
Sandra Paget

Experts by experience
LTNC RI Advisory Group March 2012

 

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