Palliative Medicine:Scoping the level and extent of service provision to people with intellectual disability at end of life Poster Presentation

Background: Concerns exist about the end of life care
that people with intellectual disabilities receive. This population
are seldom referred to palliative care services and
inadequate data sets exist about their place of death.
Aim: To scope the extent of service provision to people
with intellectual disabilities at the end of life by specialist
palliative care and intellectual disability services in one
region of the United Kingdom.
Methods: As part of a larger doctoral study a regional survey
took place of a total sample (n=66) of specialist palliative
care and intellectual disability services using a postal
questionnaire containing forty items. The questionnaire
was informed by the literature and consultation with an
expert reference group. Data were analysed using SPSS to
obtain descriptive statistics.
Results: A total response rate from services of 71.2%
(n=47) was generated. Findings showed a range of experience
among services in providing end of life care to people
with intellectual disabilities in the previous five years, but
general hospitals were reported the most common place of
death. A lack of accessible information on end of life care
for people with learning disabilities was apparent. A few
services (n=14) had a policy to support this population to
make decisions about their care or had used adapted Breaking
Bad News guidelines (n=5) to meet their additional
needs. Both services recognised the value of partnership
working in assessing and meeting the holistic needs of
people with intellectual disabilities at end of life.
Conclusions: A range of experience in caring for people
with intellectual disabilities was present across services,
but more emphasis is required on adapting communication
for this population to facilitate them to participate in their
care. These findings could have international significance
given that studies in other countries have highlighted a
need to widen access to palliative care for this group of
people.

Making the law accessible to non-lawyers: effects of different kinds of expertise on perceived usability of online legal information services

To help design an environment in which professionals without legal training can make effective use of public sector legal information on planning and the environment - for Add-Wijzer, a European e-government project - we evaluated their perceptions of usefulness and usability. In concurrent think-aloud usability tests, lawyers and non-lawyers carried out information retrieval tasks on a range of online legal databases. We found that non-lawyers reported twice as many difficulties as those with legal training (p = 0.001), that the number of difficulties and the choice of database affected successful completion, and that the non-lawyers had surprisingly few problems understanding legal terminology. Instead, they had more problems understanding the syntactical structure of legal documents and collections. The results support the constraint attunement hypothesis (CAH) of the effects of expertise on information retrieval, with implications for the design of systems to support the effective understanding and use of information.

New Technology and Researchers’ Access to Court and Tribunal Information: the need for European analysis

We discuss the limitations and rights which may affect the researcher’s access to and use of digital, court and administrative tribunal based information. We suggest that there is a need for a European-wide investigation of the legal framework which affects the researcher who might wish to utilise this form of information. A European-wide context is required because much of the relevant law is European rather than national, but much of the constraints are cultural. It is our thesis that research improves understanding and then improves practice as that understanding becomes part of public debate. If it is difficult to undertake research, then public debate about the court system – its effectiveness, its biases, its strengths – becomes constrained. Access to court records is currently determined on a discretionary basis or on the basis of interpretation of rules of the court where these are challenged in legal proceedings. Anecdotal evidence would suggest that there are significant variations in the extent to which court documents such as pleadings, transcripts, affidavits etc are made generally accessible under court rules or as a result of litigation in different jurisdictions or, indeed, in different courts in the same jurisdiction. Such a lack of clarity can only encourage a chilling of what might otherwise be valuable research. Courts are not, of course, democratic bodies. However, they are part of a democratic system and should, we suggest – both for the public benefit and for their proper operation – be accessible and criticisable by the independent researcher. The extent to which the independent researcher is enabled access is the subject of this article. The rights of access for researchers and the public have been examined in other common law countries but not, to date, in the UK or Europe.

Risks to patient confidentiality when communicating health information to blind and partially sighted patients.

The research reports on a survey of 228 blind and partially sighted persons in 15 health authorities across Scotland. The survey reports data on patient experience of receiving health information in accessible reading formats. Data indicated that about 90% of blind and partially sighted persons did not receive communications from various NHS health departments in a format that they could read by themselves. The implications for patient privacy, confidentiality and wider impact on life and health care are highlighted. The implications for professional ethical medical practice and for public policy are also discussed. Recommendations for improved practice are made.