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• Information Access toolkit
  • About the Toolkit
  • Overview of the Toolkit
  • How to use the Toolkit
  • How this Toolkit was developed
  • Information is important
  • Section one: Setting up systems
  • Section two: Providing a named contact
  • Section three: Information about local services
  • Section four: Information on managing a condition
  • Section five: Information about social inclusion
  • Section six: Assessing information needs
  • Resource Pages
• Communication skills project

This toolkit was developed by the Information Access Project at the Brain and Spine Foundation. The project was coordinated by a project officer who conducted most of the consultation and wrote and designed the toolkit. The work was overseen by a project advisory group which included people from voluntary sector organisations, the NHS and the Commission for Social Care Inspection, as well as individuals affected by neurological conditions. Many of those on the project advisory group had been involved in the development of the National Service Framework (NSF) for Long-term conditions. The project was conducted in association with the Neurological Allianceand the Long-term Medical Conditions Alliance (LMCA) and was funded through a grant from the Department of Health.

Consultation was carried out with people affected by neurological conditions in focus groups throughout the country. They were asked about the key issues and obstacles they faced in seeking and obtaining information.

Discussion was also held with regional alliances of neurological voluntary sector organisations and at a workshop of national voluntary organisations that support and represent people affected by neurological conditions.

A mini literature review was conducted of relevant studies to draw out the main messages about providing information for people affected by neurological conditions.

Health and social care professionals were consulted in discussion groups and through a questionnaire survey about the information sources they found useful, the gaps in information available and the issues they found difficult to address.

A draft text for the toolkit was then written taking into account the findings of the consultation exercises. All those who expressed an interest in being involved in the project were given the opportunity to review it (about 250 people) including people affected by neurological conditions, health and social care professionals, voluntary sector employees and volunteers.

The revised text was then put onto this website so that it could be piloted (tried out) before we launch it more widely later this year.

Please note that by clicking on the 'text resize' link on the top right of each page, you can adjust the size of the text to suit you. You can also click on the 'Easy read version' link.