IntroductionFollowing 4 years of community neuro-palliative multidisciplinary teams in Hertfordshire, the gap of a community co-ordinator for newly diagnosed patients with rapidly progressive neurological conditions emerged as a priority.MND71HD30PSP22MSA12CBD4AimsTo assess the impact of an innovative co-ordinator role assessing community neurology and palliative care needs at diagnosis of five rapidly progressive neurological conditions. To examine impact on patient experience, non-elective hospital admissions and place of death.MethodA pathway was developed direct from neurological diagnosis of five rare conditions-Motor Neurone Disease(MND), Progressive Supranuclear Palsy (PSP), Huntingtons Disease (HD), Cortico-basal degeneration (CBD), Multisystem atrophy (MSA). The community co-ordinator assessed their neuro-palliative needs soon after diagnosis, gave information, referred to appropriate community services, and then acted in a clinical consultancy role to staff and patients.ResultsTotal number of patients referred and assessed during January 2012 – May 2013=139The most frequent onward referral was to specialist palliative care=75 (54%).31 (22%) have died, 27 (87%) in their preferred place.Eastern Region Public Health Observatory data showed reduction in elective and non-elective hospital admissions for people with these diagnoses by over 50% in 1 year. Cost of the co-ordinator post and administrative support is 60k per annum.Patient experience –a baseline questionnaire revealed gaps in current service. Comparison after 1 year of the service will be presented. Anecdotally it has made huge improvements to many patients' lives and improved knowledge and skills of community staff, which can be applied in managing patients outside this project.ConclusionsThe model appears to have been successful providing improved quality of co-ordinated community clinical care while reducing hospital costs. It is cost-effective and provides timely specialist support, working through existing workforce. It could be a model for managing other rare long term conditions, and to increase access to palliative care for other non-malignant conditions.
Introduction A growing body of literature suggests that living with a complex, rare and/ or progressive neurological condition can have significant impact on a patient and families/ carer psychological and emotional wellbeing (McLeod and Clarke 2009). Many patients are invisible to the health care system (Day 2012). Leventhal's Self Regulation theory will underpin understanding of the coping strategies adopted. Leventhal and proponents of this theory suggest that we are active participants in our health care (Leventhal, 2003, Helder 2002). Therefore, if we are able to recognise patients' illness representations we can better coordinate care to suit those who receive it. Bowen's Family Systems Theory will be referenced when discussing the experience of the patients' nominated family member. Aims and Methods To investigate the patient and carers experience(s) of living with a complex neurological and palliative diagnosis. Secondary data was used from the analysis of the service evaluation study of the ‘My Needs Now’ project hosted by Hertfordshire Community Healthcare Trust. Results A number of themes emerged namely, Professional Knowledge and Understanding, Time and Progression, The Family, and Coping Strategies. It is apparent that health professionals need to develop their specific knowledge about complex, neurological and palliative diagnoses and engage with patients and carers as individual cases distributing knowledge appropriately. Whilst patients and carers must adopt a range of coping strategies allowing them to both reactively and proactively engage with support over the course of the disease. Conclusions Health professionals should facilitate the development of knowledge with any patient or carer who wishes to expand their understanding of the disease they are living with. Similarly, the duality of knowledge between patient and carer should be respected and the desire for information must never be assumed.
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