Community Focused Palliative Care in Bala (Or how relevant is the ‘Big Society’ concept to the delivery of Palliative Care in the Community?)

Background Previous Needs Based Assessment Rurality and isolation = Bala Increasing demand and expectation for services Drive to deliver services closer to home Resources (financial, staffing, transportation) ‘Big Society’ concept New technologies Tebbitt 2004 Sugar Report 2008 Primary & community services strategic Delivery programme, Setting the Direction - community-based services across Wales that are reliable and accessible irrespective of where people live Policy Documents ;A Question of Balance, the Wanless Review, Designed for Life, One Wales and the recent NHS reforms all point towards strengthening primary and community services and reducing the pressures on acute hospitals

Aim To analyse provision of palliative care for a range of life limiting conditions in a rural community with a view to establishing what enhancements to care could be provided by the community themselves To identify what enhancements / changes in delivering care were thought to be useful and / or acceptable

Concerns about project Impact on Public Generating expectations from the community Adverse media / stakeholder reaction to possible shortfalls in services Impact on Health Care Professionals Service review ‘fatigue’ HCP perceptions of purpose of project

Methodology Exploration of community options Meetings with health care professionals delivering palliative care in Bala Meetings with Bala community Recommendations Next Steps

Community Groups Themes discussed: Population demographics Sense of community in Bala Ability to deliver more care for each other in the community Differential access to services Potential for skilling up volunteer lay people in elements of care Potential use of technology

Health Care Professionals Semi-structured questionnaire Patients population How identify? Who delivers care? What were the strengths of the palliative care provision? How could arrangements be improved (within existing resources)? How easy was it for patients to remain at and die at home? What were potential barriers to this?

Results Community Groups Health Care Professionals Bala Rotary Bala Age Concern Merched Y Wawr Identified local community members Health Care Professionals Medical (GPs) Nursing (DNs, CDN, H@h, SPCCNS)

Community Groups (1) Significant shift in demographics in rural areas in North Wales Public do not see a role in delivering personal care for others Public acceptance to see routine tasks performed by support workers Impinging on social support profile

Community Groups (2) Recognise the potential benefits and keen to exploit opportunities of technology Community eager to discuss health solutions Travelling is a significant issue

Health Care Professionals (1) Patient Populations Seen as range chronic diseases however patients with dementia were less likely to be perceived as palliative care patients. How identify Wide range of routes Regular meetings (MDTs and GSF)

Health Care Professionals (2) Who delivers care Seen as responsibility of all, though cancer still perceived as more likely to have SPCT involvement by generalists Other resources for some of the other conditions or ported out Dementia seen predominately the responsibility of mental health team Particulat issue around dementia care

Health Care Professionals (3) What were the strengths of palliative care provision Close knit community and teams DN team Communication between teams H@h MDT meeting Flagging to OOH services Particular individuals were siggled out

Health Care Professionals (4) What were the weaknesses of palliative care provision Night cover, W/E, BH Access to I/P facility DN staffing When acute deterioration occurred admit to Wrexham Logistics Despite the access to 7 day working in Bala from H@h (which was long standing) this was still seen as a significan issue

Health Care Professionals (5) How could arrangements be improved (within existing resources)? Syringe Drivers Access to respiratory nurses (O2) Skype More staff particularly Night cover, W/E, BH Logistics (Liability arrangements, 4X4!) Access to I/P facility Appointment of new consultant Skype – whilst there was some view that tecnology there was this could not replace physical element of roles iie managing syringe drivers

Health Care Professionals (6) How easy was it for patients to remain at and die at home Generally yes BUT… What were potential barriers to this Lack of family / staff Mental health issues Difficult symptoms Patient choice Verbal discussions not formally recorded Issues about OOHs and acute deterioration Whether they were prepared to accept support. One no due CDN due to issues regarding carer and nursing numbers

Conclusions Demographics different and changing Public and HCP view demographics differently The ‘Big Society’ appears to have a limited role in delivering health care There remain concerns about EoLC within existing resources Dementia in particular appears to be regarded differently in rural areas The public appears to be keener to look at the role of newer technology than HCPs

Limitations of study Numbers small Public groups may not be representative Expressing interest not the same ask changing practice!

Next Steps Feed back to teams Development of needs based coding for a range of life limiting diseases Focus on management of dementia 3 Pilot projects on the use of telehealth to support Palliative care in community hospitals Care homes Rural communities