Abstract
There are extremely high levels of respiratory ill health across NI which can be devastating for the person and family in terms of physical and psychological ill health which places a significant pressure on health services, as the second leading cause for hospital admission. Within Belfast we asked patients to tell us about their lived experience through the creation of a video which was presented to the Department for Health to lobby for improved respiratory services. This stimulated the development of a Respiratory Service Framework for NI 2009 and from that came funding to develop an integrated respiratory service which would be co-designed to meet the holistic needs of patients from diagnosis to the end of life stage of life. The team is made up of respiratory nurse specialists, physiotherapists, occupational therapists, dietetics, clinical psychologist, physiologist, GP, an admin team and is led by a Respiratory Nurse Consultant. The service has developed over the years. There are 1500 people on the caseload for long term condition management, 450 requiring home ventilation and over 700 patients on home oxygen therapy. The patients are referred for exercise and self-management programmes so they become experts in their own condition. They are sign posted to local Chest Heart and Stroke for ‘Being in Control’ Programmes and a social network. There are many partnerships with external agencies such as Warmer Homes that contribute to the person’s wellbeing. It was the Belfast Trust Patient Support Group who lobbied the DoH for the development of community based respiratory services. The patients and carers were involved in the development of the standards of care through workshops. We always involve our service users to test any change or development enhancing our service delivery. We developed seamless respiratory services across the ICP from hospital to community based care, link to General practice and deliver diagnosis, education and support, self- management programmes which were co-produced/co designed. The team have enhanced skills adapted to the needs of our client group over the years. We have never had a compliant into the service in 20 years and it has surpassed any performance management targets through the ICP. A RQIA report commended the team as an exemplary for the UK. Respiratory care requires a holistic assessment of their needs and case discussions because the plan of care has to consider the physical, emotional, social and psychological needs of each person. Cohesive team work requires leadership and shared vision. This is enhanced when it covers community and secondary care. The team need to have frequent patient focused meetings which focus on patient centred care. Sharing educational opportunities to remain up to date with all clinical evidence is essential. Disseminating good practice across NI and the UK. Celebrating successes, involving patients and carers and listening to feedback. Continually striving to provide the highest quality service to our patient cohort. Contributing to the work of Asthma and Lung UK in the All Party Political Group with people impacted by respiratory disease to ensure improved services across NI.