Background Living with a neurological condition greatly impacts on quality of life (Cella, Nowinski, Peterman et al., 2011). 70% of respondents in the 2016 Neurology Patient Experience Survey identify that living with a neurological condition frequently restricted engagement in activities (‘Falling short: how has neurology patient experience changed since 2014?’,Neurological Alliance, 2017; ‘Parity of esteem for people affected by neurological conditions…’, Neurological Alliance, 2017). The Neurological Alliance (‘Parity of esteem for people affected by neurological conditions…’, 2017) identifies significant gaps in neuropsychological and neuropsychiatric services.
Aims To develop a patient-centred, supportive ‘hub’ for those living with complex neurological conditions. To meet physical, mental, social, psychological and spiritual needs to enhance quality of life to live and die well.
Method Increasing demands for neurological palliative rehabilitation presented an opportunity to develop neurological services. A two-hour once a week group was piloted to develop a central ‘hub’ for patients and their families to access holistic support throughout the patient journey. Funded by charity.
The programme includes components that endorse self-management strategies, increase function and support wellbeing (Tiberini & Richardson, 2015). Rehabilitation for those with palliative neurological conditions focuses on a multi-disciplinary holistic approach to enhance quality of life for patients and their families (Tiberini & Richardson, 2015; National Institute for Health and Care Excellence, 2016). Therefore, group work and one-to-one therapies including mindfulness, exercise, art therapies, complementary therapies and social support are offered. Advance care planning and referrals to external supportive services are addressed.
Standardised quantitative outcome measures from The Outcome Assessment and Complexity Collaborative (Witt, Murtagh, de Wolf-Linder et al, 2016) are implemented. Qualitative word clouds are also collated to illustrate benefits to patients and their families.
Results The hub has been established for ten months with an average of 17 patients plus a family member attending weekly. Word clouds identify that patients and families feel; relaxed, positive, valued, supported and inspired. In addition to finding the hub friendly, social, helpful and calm.
Conclusion The neurological hub offers unique coordinated services to the patient life journey and beyond. The intention is to create a yearly programme offering increased opportunities and knowledge to patients and families.
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