H04 National care framework for huntington’s disease

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Abstract

Background

Government commissioned SHA to develop a National Care Framework for HD followed by localised versions for each health region.

Aims

To develop a measureable, integrated health and social care model that guides providers and empowers HD families. Online format allows Framework to be kept up to date.

Method/techniques

Developed by expert group representing families, psychiatry, psychology, neurology, neuropsychology, genetics, rehabilitation, dentistry, GPs, speech and language therapy, dietetics, physiotherapy, occupational therapy, care homes, palliative care, social work and academia. Then subject to national consultation.

Results/outcome

National Framework backed and launched by Government. Localised versions published in 3 regions. Baseline surveys of staff and families conducted – to be repeated in 3 years to determine impact.

Conclusions

Framework widely welcomed, both nationally and internationally, as excellent model for HD and other conditions.

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