Background The clinical experience of people living with Huntington’s as they navigate the health system to manage this long term condition is important as this has links with their care and everyday quality of life.
Aims The current study aims to examine the patient experience of people living with Huntington’s disease, and also explore receptivity to psychological input.
Methods The Huntington’s patient experience within the UK was examined using patient experience survey data from the Neurological Alliance. The use of psychological and counselling services were examined in the context of different allied health services, and we contrast this with our experience of discussing psychological input with patients.
Results For Huntington’s disease, occupational therapists (25.6%) were the allied health service most utilised, closely followed by speech and language therapists (23.1%) and then physiotherapists (20.5%); in comparison, psychologists, dieticians and social workers were more rarely seen (10.3%) with counsellors seen the least (5.1%). The data also showed that a significant proportion of patients felt neutral to negative about how they were told of their condition (33.3%), their care and treatment options (51.4%), and additional sources of support (56.8%). Our clinical experience indicates that patients are interested in psychological input from a clinician experienced in working with Huntington’s.
Conclusion We conclude that Huntington’s relevant psychological input may be under-utilised in Huntington’s and can be useful given the reception from patients.
- patient care
- allied health
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