"My care is regularly reviewed, and every effort is made for me to have the support, care and treatment that might be needed to help me to be as comfortable and as free from distress as possible."

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

"I need to know my symptoms are being treated and I can access my GP, equipment and medication when I need to."

"Every time my dad was in pain the staff were very prompt and professional and treated him with dignity and respect."

"I want to talk about what is important to me and be involved in making a plan about my comfort and symptoms. I need to know who to contact if I am struggling at any time of day."

"The team caring for me help to maintain my comfort and wellbeing at the end of my life so that I can achieve the good death we all hope for."

"Having access to timely and skilled pain management delivered with care, compassion, and kindness."

"Understanding of the likely process of dying."

"Knowing that my loved ones are being supported and that this support will be available after I die."

Lancashire and South Cumbria commitments towards making this happen

• We will provide rapid response services to support people to manage symptoms that are causing them distress - e.g. pain, agitation
• We will provide the right palliative, end of life and bereavement care support services that respond to the common causes of distress
• We will ensure that everyone has access to specialist palliative care advice 24/7
• We will provide 7-day access to face-to-face assessment from specialist palliative care
• We will recognise and respond to the needs and expectations of informal caregivers
• We will provide accessible information about different symptom management options so that people can make informed decisions
• We will maximise comfort and wellbeing by ensuring everyone involved in a person’s care has timely access to their individual care and support plan
• We will help people to maximise their independence and social participation to the extent that they want, and for as long as possible
• We will deliver individualised care to the dying person and those important to them

Enablers and responsibilities

Enabler

• 24/7 access to specialist palliative care advice - e.g. regardless of setting, available for professionals, patients, and their significant others, advice line with consultant on-call
• 7-day access to face-to-face assessment from specialist palliative care services - e.g. community and hospital, care homes and specialist units - e.g. learning disabilities, prisons, 24/7 availability of hospice admissions
• Single point of referral/care coordination for palliative and end of life care - e.g. regardless of care setting, care coordination and advice, open to health care professionals, patients and their carers
• Electronic alliative Care Coordination Systems (EPaCCS) - e.g. includes out of hours and ambulance sharing, last days of life care aligned to the five priorities, inclusive of care homes and domiciliary care 
• Anticipatory clinical management planning - e.g. treatment escalation plans, anticipatory medications, processes for regular review of medications including within nursing homes 
• Non-medical prescribers - e.g. within palliative care, education in palliative and end of life care symptoms to nurse prescribers across generalist services
• Palliative pharmacy services - e.g. opening hours and access to palliative and end of life drugs, just-in case boxes
• Dedicated ambulance service - e.g. end of life transfers, including for children’s hospice transfers
• Financial assessment and support - e.g. DS1500, PIP, CHC, tailored advice
• AHP roles within palliative care - social worker, therapy teams: OT, physio and clinical psychology as a minimum
• Rehabilitative palliative care services - dedicated team
• Rapid response services - e.g. regardless of care setting, including for equipment and ambulance conveyancing, access to GP appointments and prescribing for priority patients e.g. gold lines  
• Care for carers - e.g. carer check in, carer breaks, respite, engagement groups
• Care of the dying person - e.g. approach is aligned to the five priorities of care
• Integrated domiciliary care - e.g. dedicated palliative and end of life domiciliary care providers linked to CHC fast track, with appropriate access to patient information, access to specialist services, equipment and medication when required
• Syringe pumps - availability and coordination across care settings including to nursing homes

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
• 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
• Care home contracts
• Community service contracts
• Hospital contracts
• Hospice (including children’s hospice)
• 3rd sector contracts/grants
• IT contracts
• Community and hospital pharmacy
• Pharmacy quality scheme
• Patient transport contracts
• Domiciliary care contracts
• Lead/joint provider contracts
• Equipment contracts

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
• Rapid response teams
• Single point of coordination
• North west anticipatory clinical management planning guidance 9
• Clinical practice summary for palliative care symptoms 11
• Administration of medications protocols
• Syringe pump coordination and availability
• Information Standard for End of Life Care 8
• Carer assessments
• Five Priorities for Care of the Dying 10
• The Well Pathway- Dementia Care 22
• Dying Well in Custody Charter 23

Measurements of success

• Service response times
• Patient Reported Outcome Measures (PROMS)
• Improved carer wellbeing
• 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

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

Best practice examples

St Johns Hospice clinical nurse specialists

Coverage: South Lakes, North Lancashire, and West Yorkshire

Lead contact: maddy.bass@sjhospice.org.uk

Brief description: Set up during COVID, this service allows families to have a break to leave the house for few hours in the day, or to sleep. Or a night sit, to allow the family to sleep overnight. This allows the family to be rested.

Outcomes: Support end of life care at home to meet preferred place of death. Support for the family carer who is vital in ensuring the person who is dying stays at home. Symptom monitoring, with access to DN and H@H, and medical team if required. Advance care planning and supportive discussions.

Psychological services Trinity Hospice

Coverage: Anyone currently receiving care or support from Trinity's family of services or anyone living with or caring for someone who is being supported by Trinity's family of services. A direct family member who is bereaved after the loss of someone who has been cared for by Trinity's family of services.

Lead contact: Dr Andy Sanderson-Thomas, clinical psychologist 01253 952567 dr.sanderson-thomas@nhs.net

Brief description: Support for adults - Trinity Hospice Trinity psychological services and the Linden Centre accept referrals for patients known to Trinity Hospice and their families for in person 1-1 counselling/clinical psychology support. Bereavement and carer therapy groups are offered for 8 weeks, including a children’s group. Art social group for patients. Virtual psychology sessions are available.

Outcomes: The service uses the CORE 10 outcome measure for therapeutic support within the bereavement and carer service. A patient experience questionnaire (including friends and family data) is used for discharged patients within the psychology service.

Emergency Department (ED) project: in-reach into ED and Acute Medical Unit

Scope of coverage: Patients presenting to ED or AMU at Blackpool Victoria Hospital with a life limiting diagnosis

Lead contact: Dr Harriet Preston, (BFWH) Blackpool Teaching Hospitals Harriet.preston@nhs.net

Brief description: Pilot providing timely and responsive targeted palliative care assessment at the ‘front door’. Trialling the use of specialist palliative care trainee advanced practitioners working alongside HPCT providing daily in-reach into ED aiming to:

• reduce unnecessary hospital admissions and GP contacts
• increase the numbers seen achieving their preferred place of care and death
• enhance patient agreed advance care planning including the establishment of ceilings of treatment.

Outcomes: Between 01/02/21-31/1/22 69 patients were supported. Of these 19 (28%) were either discharged appropriately back to their place of residence or to the local hospice on the same day, saving 78 bed days. A high proportion of patients attending without a DNACPR/EPACCS highlights the need for further work to promote anticipatory advance care planning.

Trinity Living Well Services

Coverage: Fylde Coast

Lead contact: Rick Fisher Richard.fisher9@nhs.net

Brief description: Through the employment of rehabilitative approaches, the Trinity Living Well Service provides professional and social support, information, and empowerment to ‘live well’ for those people with a progressive, life limiting condition and those close to them.

Outcomes: The Living Well Service has offered choice to patients who wish to attend an OPA clinic as opposed to being seen in their home. This has on occasion been the only time a person left their home and has led on to sign up at our art group and interaction with others in a similar situation through continuing attendance. We have also been able to support a return to sport, running, community gym access. From a bereavement perspective, we have seen the social support group enable friendships to form for peer support after loss.

Trinity Hospice Spiritual Care Assessment

Scope of coverage: All patients at Trinity Hospice services – inpatient, community and hospital teams.

Lead contact: David Melvin, trainee advanced clinical practitioner, community palliative care team, David.melvin1@nhs.net

Brief description: Following self-reflection and discussions with peers of all grades in the hospice I recognised there was a lack of confidence and competence in assessing spiritual care needs of patients across hospice services.

The project set out to establish if there is a standardised assessment tool used to assess/address spiritual care concerns of patients as part of a holistic model of care encompassing the four main components of holistic palliative care – physical pain, psychological pain, social pain (broken relationships) and spiritual pain.

Following a staff survey and audit it was clear there is no standardised model of assessment in use and staff confidence in engaging patients/families in spiritual care conversations is low throughout the organisation. This suggests patients may have unmet spiritual needs, this could result in patients continuing to experience some ongoing distress as their health deteriorates.

Outcomes: The project has seen the implementation of our own model to assess spiritual pain or distress - the Just ASK model.

The model is based on four open questions that are aimed at engaging patients in conversations about thoughts/feelings and what is important to them. Staff are encouraged to engage patients in conversation and if they are unable to answer any concerns, this is the route to explore referral to the spiritual care team.

To enable the implementation of the model and to address the common themes that were evident from the staff survey spiritual care assessment training sessions are now mandatory for all staff at the hospice. This commenced for clinical staff in September 2022 and will be rolled out for all staff in the hospice to maintain the inclusivity of our organisation.

Just Ask

• When you’ve faced difficult times what has kept you going?
• What matters to you if time is short?
• What would peaceful mean to you?
• Do you have any beliefs that bring meaning/purpose to your life