H005 Joined-up care in Huntington’s disease: the reality reported by people living in England
Year: 2024
Type: conference-abstract
Abstract: Background The WHO suggests joined-up care as a solution to meet people’s complex care needs. Huntington’s Disease (HD) is one of the most complex diseases, affecting not only one individual but families across generations, requiring integrated care amongst different professionals and sectors. Nevertheless, there is no record of person-centred integrated care experiences in HD. Aims To assess integrated care in England from the perspective of individuals and families living with HD. Methods The Integrate-HD survey was co-designed with people with lived experience of HD and was open for seven months in 2023. The survey was available in electronic and paper formats and was advertised via social media and charitable organizations. Data was analysed using descriptive statistics and content analysis. Results A total of 153 participants took part, covering 94% of the English counties. Using the person-centred care definition from National Voices, more than half of the people ranked care very poor, poor or had a neutral opinion. Findings reveal fragmented care, postcode lottery and serious unmet needs in mental health and social care. Conclusions People living with HD in England experience fragmented care and highlight urgent improvements needed in mental health and social care access. Future research needs to look at implementing good practices cross-country and at managing obstacles to integration, to achieve better person-centred outcomes.
Authors: Sandra Bartolomeu Pires, Dorit Kunkel, Nick Goodwin, Christopher Kipps, Mari Carmen Portillo
Language: English
Subfield: Cellular and Molecular Neuroscience
Field: Neuroscience
Domain: Life Sciences
Open Access status: gold
Funder: Sage Therapeutics
OpenAlex ID: W4402374845