"I get the right help at the right time from the right people. I have a team around me who know my needs and my plans and work together to help me achieve them. I can always reach someone who will listen and respond at any time of the day or night."

What the citizens of Lancashire and South Cumbria say this means for them

"When decisions are made, they are shared with all the relevant healthcare teams, preventing repetition and delays."

"I have one contact number to someone who can help me find the support or answers I need so I don't have to ring around different services to get help."

"Everyone that can help me works together to make things easier for me and my family."

"I need to know my family are looked after and supported."

"Timely interventions from a familiar person."

"I need to tell to tell my story only once."

"I have a great team around me. 24 hour access to care from a team of people who know me and my needs"

"I need consistency of care from people who know me."

"I need to know my care can be provided 24 hours a day 7 days a week."

"Everyone helping me knows my needs and my plans and works together to look after me."

"I need to know that the people who look after me can access up to date information about me."

"I'd like to have one point of contact who can coordinate all my care, saving me the worry."

"Psycho-social support for those dying and those around them. Multi-agency, multi-professional teams supported by pooled funding working effectively with the 3rd sector."

Lancashire and South Cumbria commitments towards making this happen

• We will commission joined up palliative, end of life and bereavement care services across health, social and the VCFSE sector so that services understand how they fit together and where to signpost or refer onto
• We will coordinate multi-disciplinary team working across palliative and end of life care services
• We will meet the needs of diverse groups by establishing integrated care and support pathways e.g. the homeless, learning disabilities, dementia, frailty and old age, children and young people
• We will enable the sharing of care records across services so that the right information is available at the point of care
• We will ensure that people at the end of life, and those important to them always have a point of contact, day, or night where their care and support can be coordinated
• We will empower people to access palliative and end of life services by providing up to date service directories
• We will ensure that your palliative and end of life care is coordinated by a named person

Enablers and responsibilities

Enabler

• Electronic Palliative Care Coordination Systems (EPaCCS) - e.g. shared across health, social and third sector organisations, shared with the ambulance service and out of Hours, including clinical management planning documentation e.g. DNACPR, escalation plans
• Key worker/named person - responsible for reviewing the overarching care plan, named GP
• Single point of contact/ coordination for palliative and end of life care services - e.g. from triage, care coordination and advice, open to health and social care professionals, patients, carers 24/7
• 24/7 specialist palliative care advice to include hospice advice and admissions where clinically appropriate, coordinated palliative consultant cover across place or ICS
• 7-day working - e.g. across all core services involved in palliative and end of life care including equipment and transport
• Integrated commissioning - e.g. active partnerships that bring together providers and commissioners to collectively plan services, responding as a whole system approach to locally identified needs
• Multi-disciplinary approach - e.g. cross sector MDT meetings including social care, hospital integrated discharge summaries, integrated care pathways (including for diverse needs), neighbourhood teams
• Virtual wards - specifically for palliative and end of life care and involving the GP
• Transition pathways - between children and young people, and adult palliative and end of life care services
• Care of the dying - rapid discharge/ transfers, nurse verification, expected death notifications for OOH
• Out of area coordination - local pathways take into consideration cross boundary working including transportation and admission and discharge for people with palliative and end of life care needs, medication, and syringe pumps.

Commissioner Levers

• Underpinning guidance detailed on page 11-4
• Specialist level palliative and end of life care services specification (adults) 5
• Advice line service specification
• Enhanced health in care homes framework 6
• NHS Continuing Health Care fast-track pathway 18
• EPaCCS digital roadmap
• Universal Principles for Advance Care Planning 7
• NHS Virtual ward guidance 19
• NHS Chaplaincy guidance 20
• Clinical leadership and peer leadership throughout ICS, ICP and place-based partnerships
• Joint strategic needs assessment
• The Well Pathway - Dementia Care 22
• Dying Well in Custody Charter 23
• Care committed to me 24
• UK Commission on Bereavement 26
• Standard KPI’s across provider contracts
• Primary care contracts
• Community service contracts
• Care home contracts
• Hospital contracts
• Hospice (Including children’s hospice) grants
• 3rd sector contracts/grants

Provider Levers

• Named clinical and board executive lead
• Organisational palliative and end of life care strategy
• Place based partnership groups
• Annual audits
• Incident reviews
• Job roles and responsibilities
• Data sharing agreements
• Education and training
• MDT coordination
• 7 day working
• Single point of coordination
• North west anticipatory clinical management planning guidance 9
• Palliative and end of life care virtual ward guidance 12
• Information standard for end of life care 8
• Rapid discharge pathways
• Care after death: registered nurse verification of expected adult death guidance 13
• Out of hours notifications
• Joint working with Children’s and Young Peoples services
• The Well Pathway- Dementia Care 22
• Dying Well in Custody Charter 23

Measurements of success

• % Reduction in hospital admissions during the last 90 days of life
• % Reduction in hospital admissions from care homes for those identified as palliative
• % Reduction in hospital admissions for people with a dementia diagnosis that are identified as palliative
• % Increase in achievement of preferred place of care/death
• Survey of service users and bereaved people (consider Place or ICS wide approach)
• National Audit for Care at the End of Life (NACEL)
• Patient case studies
• Reduction in the number of end of life care related incident reports
• Reduction in the number of end of life care related complaints
• Number of GP Practices holding at least 10 GSF meetings per annum
• Increased % of patients on the palliative care register
• Increased % of people on the palliative care register that have an EPaCCS

NB: Baseline data should consider skewed data arising due to COVID-19.

Best practice examples

Enhanced integrated system partner working for end of life care on Fylde Coast 

Scope of coverage: Fylde Coast population footprint

Lead contacts: Dr Gillian Au, medical director Trinity Hospice g.au@nhs.net & Jackie Brunton, EOL lead Blackpool Teaching Hospitals NHS Trust j.brunton@nhs.net

Brief description: From the well-established integrated Fylde Coast EOLC strategic group (running since 2010) we set up a Fylde Coast system partners end of life care working group at the start of the pandemic. Meets monthly, virtually, with engagement from hospice, community, hospital, OOHs service, care homes, social care, public health, primary care and NWAS - to:

• Share situational awareness of areas on the Fylde Coast recognising that there are challenges
• To ensure and agree that issues are appropriately understood and escalated to the ICS
• To be responsive to changing requirements/direction
• To update the end of life pathways action log
• To discuss case studies and share learning experiences for shared understanding and problem solving.

Outcomes: Clinical symptom management guidelines for community, hospital, and care homes. Specific Covid advance care planning guidance for care homes. Sufficient supplies of end-of-life care anticipatory drugs and key documentation. End of life care training and support for all Fylde Coast care homes. EPaCCS, ACP and ceilings of treatment. End of life care training and support for local peripheral hospitals, primary and community care. Commissioning of a private ambulance service to ensure timely end of life care discharges and transfers. Promotion of our 24/7 SPC advice line to all system partners. Established daily morning system palliative and end of life care “Safety Huddles” virtually with key partners sharing daily EOLC “SitRep” reports. Used learning from case studies to identify gaps in co-ordination or continuity of care, understand and address these collaboratively. Launched “Our Compassionate Fylde Coast Communities” May 2022. Escalated gap for social care packages for EOL fast track discharges - Bid gone to ICS to commission specific service for this.  Development of policy for carer administration of s/c EOLC meds in community pilot. EOLC virtual wards service development updates.

EPaCCS quality improvement project

Scope of coverage: Blackpool Teaching Hospitals, Fylde Coast

Lead contact: Lorraine Tymon Lorraine.tymon@nhs.net

Brief description: Increased awareness, understanding, usage and development of patient EPaCCS records. Associated projects looking at engagement with specific staff groups (e.g CNS’) to promote timely ACP conversations that are then developed into EPaCCS records.

Regular and accessible training and support available to staff to ensure they are aware of and know how to access EPaCCs records, aim to support patients being cared for in their preferred place of care.

TNA completed to ascertain levels of knowledge pre project - will be repeated post project with aim of seeing improvement.

Outcomes maintenance of the number of EPaCCS records in existence across the Fylde Coast. Longer term measurement to look for reduction in inappropriate ED presentations for people who are at end of life. Empowering staff to advocate for their patients as they know their wishes in advance.

Single point of access fast track palliative and EOLC care

Scope of coverage: Pennine Lancashire

Lead contacts: Anne Huntley, Pendleside Hospice, Carol Evans, East Lancashire Hospice, Jayne Lothian, commissioner ICB Pennine

Brief description: All continuing care fast track referrals for palliative and end of life care are now sent to either Pendleside Hospice or East Lancashire Hospice dependent on where the patient lives. The hospice then coordinate hospice at home, Marie Curie and domiciliary care night sits to patients in these localities. Fast track day referrals are sent to continuing health care for allocation hospice at home provide RN support into patients including syringe drivers, just in case drugs etc. supporting district nurses with their caseload.

Outcomes: Response time is usually less than two hours from referral for night sits if referral received between 7:30am and 10pm Monday until Sunday.

• Patients who wish to stay at home for end of life care have are able to do so
• Admissions to hospital are prevented
• Patients receive better continuity of care
• Domiciliary care agencies feel better supported by hospice services and are provided with the necessary information to care for patients
• Patients received their preferred place of care
• More patients receive hospice at home in the community

Enhanced supportive care for cancer services

Scope of coverage: At present the service provides early palliative care input for patients in Central Lancashire with UGI, CUP, lung or stage 3 (first relapse) and 4 ovarian cancer alongside their active oncology treatment (but hoping this will expand to other cancer sites over the next year with the recruitment of an ACP).

Lead contact: Dr Kate Stewart and Tomoko Lewis (LTHTR) Katherine.stewart@lthtr.nhs.uk and Tomoko.lewis@lthtr.nhs.uk

Brief description: Early palliative care input provided alongside active oncology treatment. The service has specialist medical and nursing input, with access to other hospital-based services (e.g., dieticians, clinical psychology). The service is predominantly delivered through:

• outpatient clinics
• inpatient support. 

Palliative care input into cancer MDTs to identify patients who may benefit from early palliative care support.

Outcomes: Improved patient experience/ quality of life

• Reduction in overall healthcare costs (primarily through reduction in emergency/unplanned admissions to hospital and reduction in length of stay)
• Reduction in the need for aggressive interventions and promoting in better care in the last days/ weeks of life.

Care home support service - Cheshire

Scope of coverage: Cheshire East & Cheshire West places

Lead contact: Karen Finch-Burke kare.finch-burke@eolp.org.uk

Brief description: Care Home Support Services: Home Page | The End of Life Partnership (eolp.co.uk). The care home support service provides a responsive service offering dedicated advice, training, and education to support proactive care, centred on the needs of residents, including enabling residents to live well and plan for end of life.

Working together with residential, nursing, learning disability, mental health and dementia care homes we will help you to identify areas for development. This maybe specific to the care of individual residents, opportunities for staff development and/or your leadership team within the home. Each home will then have a co-designed individual support plan that reflects your priorities. The care home support service is a fully funded NHS commissioned service provided to all residential and nursing care homes within Cheshire West and East place.

Outcomes: This service launched in 2022 is being monitored and reported for quarterly outcomes via a dedicated data dashboard.