Update on Information Access Project
20 October 2005
Since the project began, in July 2004, a number of focus groups have been held with people with neurological conditions and their carers. A review of relevant recent literature has also been conducted, and some consultation with health and social care professionals has been carried out through discussion groups. In addition, a questionnaire was distributed during the Summer (2005) to professionals who are involved in the care of people with neurological conditions. A total of 104 questionnaires were returned by a range of people including specialist nurses, consultant neurologists, occupational therapists and physiotherapists.
Survey results
There are some interesting findings with 75% of professionals who responded saying that they frequently gave patients the details of voluntary organisation helplines and websites. In focus groups people with neurological conditions often complained that no one had ever given them such information and they had stumbled on it “by accident”.
Relatively few respondents said that they provided information in forms other than verbal or written information. This is of concern when we consider that some people with neurological conditions may have difficulties remembering verbal information and may also have difficulties with reading due to impaired eyesight and tremor.
It is clear from the comments made by some respondents that they do not always recognise their important role in helping people to access information. Time constraints were often mentioned as barriers. Also a number of respondents mentioned the lack of access to computer terminals and printers as a barrier to sourcing and providing information.
Health professionals found information requests relating to welfare benefits, complementary therapies, prognosis and sex / relationship issues particularly difficult to deal with. This very much reflects the experiences of service users as reported in focus groups and the literature.
It was interesting that some professionals perceived an onus on patients and carers to be pro-active in seeking information. Service users often need support to ask questions and not all will proactively seek information; even when they require it.
Finally, only 1% of respondents said that there was a budget set aside in their department or service for the provision of information. This is important as it is likely to indicate whether information provision is considered in the planning and management of the service. Other responses clearly suggested the need for an information strategy or policy.
What next?
Consultation will continue over the Autumn with health and social care professionals. An outline toolkit is being drafted which will be piloted with people with neurological conditions, carers and health and social care professionals. It is proposed to launch a final version on the web in Autumn 2006. The Brain and Spine Foundation is also exploring how to produce some elements on paper in addition to the electronic version.
