H04 National care framework for huntington’s disease

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


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.


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.


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.


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

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