New expressions of humanity help dispel fear and protect the mental health of bereaved families
BackgroundPolicy throughout the United Kingdom promotes involvement of patients and public members inresearch to benefit patient care and health outcomes. PRIME Centre Wales is a national researchcentre, developing and coordinating research about primary and emergency care which forms 90%of health service encounters. In this paper, we describe our approach to public involvement andengagement in PRIME Centre Wales (hereafter called PRIME), in particular: how this approachhas developed; ways in which public members contribute to PRIME activity; the strengths andlimitations of our approach, challenges and future opportunities. PRIME ensures work is relevantto service users, carers, the public and policy makers by incorporating comprehensive patient andpublic involvement in every phase of our work ApproachPRIME has policies and processes to enable and promote successful public involvement andengagement across research activities. This ensures public perspectives and patient experiences areintegrated throughout research development, implementation and dissemination and in managingand delivering PRIME strategy over a 10 year timescale. A public/patient group called SUPER is akey resource providing wide-ranging perspectives via email and face-to-face discussion. We collectinformation on processes and experiences to assess value and impact, to guide ongoing involvementand engagement. A funded post provides leadership and support to staff and to public/patientcontributors to facilitate collaborations. DiscussionA stable, well-resourced structure has provided the timescales to build strong relationships andembed diverse approaches to public involvement and engagement within PRIME. Researchers andpublic contributors have committed to collaborations, developed knowledge and skills and sustainedrelationships. Effective approaches incorporate values and actions which, when operating together,strengthen processes and outcomes of public involvement and engagement. ConclusionSupportive context, motivation and time are necessary to foster values and practices that enableeffective public involvement and engagement. PRIME has embedded public involvement andengagement across research activities and structures. Central is the public/patient group SUPERoffering experience-based expertise to add value to the research cycle. This innovative model, alignedwith best practice, enhances relevance and quality of primary and emergency care research to benefitpatients and the general population.
The concurrent assessment and treatment of mental health disorders and palliative illnesses is complex. Affective disorders are more prevalent in people who need palliative care. Identifying the most suitable place of care and multi-professional multidisciplinary teams to provide support can be challenging and bewildering for professionals and patients. Mental health clinicians may be left with a sense of therapeutic nihilism, while palliative care teams can feel limited by the mental health resources available for treating those living with significant physical and mental health needs. We discuss the fictional case of a gentleman with metastatic bowel cancer who has developed symptoms of depressive disorder and identify how taking a pragmatic patient-centred approach can offer a route through potential dilemmas when seeking to provide individualised care based on needs. We used lay person experience alongside our own experiences of novel mechanisms for cross-specialty working in order to direct psychiatric trainees’ approaches to such cases.
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