Increasing emphasis is being placed on the need for advanced care planning (ACP) at the end of life. The Preferred Priorities for Care (PPC) document is a patient-held record promoted by the End of Life Care Strategy as an ACP tool to promote discussion and communication amongst patients, family and health care providers. However, little research exists into evaluating its effectiveness or exploring patient and carer views, particularly in non-malignant disease. Because the majority of patients with Motor Neurone Disease (MND) lose verbal communication, early discussion of patients' wishes and preferences, a central aspect of ACP, is vital. This study examined MND patients' bereaved relatives' experiences of using the PPC document and their perceptions about its impact on end-of-life care using qualitative methods. Key findings adding to existing literature were that the PPC document was felt to have little impact on end-of-life care amongst this patient group and that there was a perceived lack of awareness of the document amongst health care professionals (HCPs), in particular hospital staff. This was felt to limit the effectiveness of the document. This has obvious implications for practice, looking at awareness amongst HCPs and ways to improve this situation, particularly in light of the current pressures to meet patient preferences at the end of life.

The multi-faceted nature of the problems faced by someone with motor neurone disease requires a knowledgeable multidisciplinary team approach. Where available, generally, such services are only provided on an out-patient basis meaning that hospitalised patients are frequently admitted to non-specialist wards where understanding of their needs is limited.Little is known regarding the in-patient care received by patients. Our objective was to address this by exploring the experience of hospitalisation following a diagnosis of motor neurone disease from the perspective of family carers of those diagnosed with the illness. MethodThis was a qualitative secondary analysis of pre-existing data from two previously published, separately conducted, qualitative studies. The study involved interview data from 18 bereaved carers and 3 current carers of family members diagnosed with motor neurone disease in Northwest England. ResultsThe findings reveal dissatisfaction with the in-patient care received which impacted negatively not only on patient and carer enthusiasm for future hospital admissions but also on carer bereavement. ConclusionPatients with motor neurone disease have specialist needs which are not always met during hospital admission, particularly to non-specialist units. The in-patient care provided for these patients must be improved as must the knowledge and understanding of the illness amongst healthcare professionals who treat them.

Aim To establish a volunteer service for patients nearing end of life to provide compassionate listening, comfort and companionship. Method We established a partnership steering group and secured a 3 year grant to set up a volunteer companion service for the Royal United Hospitals Bath, building on an existing companion model at Dorothy House Hospice. We agreed a volunteer role profile, recruited volunteers, provided specific training and supervision. We developed referral criteria and information resources for patients and their families, for hospital staff and for volunteers. We tested the model on three wards and then agreed a roll out plan to all wards. Results Despite the COVID-19 pandemic the service has rolled out to 19 wards. We have recruited four cohorts of volunteers and currently have 25 active volunteers. The service has received 86 referrals and supported 71 patients. The volunteers have provided 319 support visits and 618 hours of companionship. The reasons for referral have included: no family support (n=7), limited family support (n=37), respite break for family (n38) and support for family (n=3). Conclusion The Compassionate Companion Service is making a huge difference to patients, their families and staff. Sometimes it is the little things, the small acts of kindness, the holding of a hand, the words of comfort and being present that give so much support to those nearing end of life and to their loved ones. We plan to roll out to all wards this summer and have service funding for a further three years.

Background Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) discussions and decisions form an integral part of advance care planning. Although DNACPR is a medical decision, doctors have a legal duty to involve patients and relatives. However such conversations can be difficult, requiring good communication skills and an understanding of the legal position. We recognised a lack of training and clarity regarding DNACPR and the law amongst physicians and looked at ways to bridge this gap. Summary of work Simulation has been well recognised as an effective method to teach communication skills. 1 The aim was to develop a simulation-based education session for senior doctors, to clarify the legal position regarding DNACPR and to give them an opportunity to practise discussions in a safe, supported environment. The sessions were developed following a successful bid for network Multi-Professional Education and Training funding. 5-8 candidates participate in a 3 hour session. A pre-briefing clarifies the legalities around DNACPR. Each session comprises 3 bespoke scenarios using patient actors, with candidates playing the part of the doctor. Video-playback is used to assist the debrief process. As a result of the success of the initial programme the training has been rolled out to a first cohort of 13 senior community nursing staff who have completed advanced communication skills training. Summary of Results Since 2015, 21 sessions have taken place with a total of 85 attendees, including a wide range of medical and nursing staff. Evaluation has been extremely positive. 99% of candidates agreed or strongly agreed that they felt more confident about the legal position regarding DNACPR. 70% strongly agreed that they felt more confident undertaking DNACPR discussions with patients and relatives and 89% strongly agreed that they would recommend the course to colleagues. Qualitative feedback includes comments such as 'Excellent! 'should be mandatory' and 'everyone should do this.' Feedback from the intial nursing cohort was also overwhelmingly positive and following their training all have held DNACPR conversations with patients and completed DNACPR forms. Discussion, conclusions and recommendations Having a dedicated simulation centre at the trust has been invaluable. The main challenge has been encouraging attendance and several sessions have been cancelled because of lack of candidates. We are currently exploring the feasibility for the program to become part of mandatory training. Following the successful roll out to community nursing staff we will be looking at extending the training to nursing staff within the acute trust.