North Lancashire s End of Life Pathway

Transcription

1 North Lancashire s End of Life Pathway 1 Historical Context/ Background 1.1 The overall strategic vision for NHS North Lancashire with regard to end of life care is that it will develop its services to support individuals to die, as far as possible in their place of choice, pain free and with dignity, through increasing the use of the relevant support tools and the level of support for them and their families 1.2 The Vision is set out in the PCT s End of Life Strategy which has been developed by the End of Life Operational Group and ratified by the End of Life Reference Group. Representation includes: NLPCT - includes Medical Director, NHS North Lancashire (chairs the Reference group) commissioners, finance, Public Health, Quality Standards & Effectiveness, GP & Provider services, Cancer Lead Blackpool PCT Care Homes Facilitator, End of Life Clinical Lead Voluntary sector e.g. hospices, Rainbow Trust Children s Charity, Cancer Care, MND Association & Neurological Alliance PBC End of Life Lead Secondary Care - Lead Cancer Nurse, University Hospitals of Morecambe Bay (UHMB and Blackpool Victoria Hospital (BVH) Consultant Paediatrician, BFWHT, Chaplaincy Team Leader, BFWHT Others - Research Fellow, International End of Life Observatory, Clinical Nurse Specialist, Croston House, Cancer Help, Hospices, Local Authority & Cancer network, Nursing homes representatives Patient representatives - LSCCN, Cancer Patient Partnership 1.3 The End of Life agenda is primarily a qualitative one, ensuring that the experience is as positive as is possible at a time of grief and difficulty. As a result the aim of the work is not to re-design the pathway unless there are significant qualitative benefits, rather than might the case with other pathways where the re-design is motivated by a need to reduce cost. 1.4 Work has been on-going on developing and implementing a number of initiatives since the local strategy was agreed in 2007/08. Set out below is a summary of work that has been undertaken as well as some which is planned. 2 Current interventions The NHS North West End of Life Pathway Model has been adopted within NHS North Lancashire s End of Life Care Strategy. This is shown below and identifies the key stages in the patient pathway. 2.1 Advancing Disease GP Practices and Care Homes with Nursing are encouraged to utilise the Gold Standards Framework which assists in the identification of patients in the last year of their lives. All patients should be offered a Preferred Priorities for Care (PPC) document to identify their wishes and needs and these should be communicated to all relevant health and social care staff. The PPC should be reviewed on a regular basis and at key stages within the patient journey. Practices and care homes are encouraged to meet on a regular basis (at a minimum of 3 monthly) to review their supportive care registers. 2.2 Increasing Decline Just in Case Drugs policy should be adhered to and additional information should be shared with all relevant health and social providers. 2.3 Last Days of Life the Liverpool Care Pathway for the Dying is used in most care settings. Page 1 of 5

2 2.4 Bereavement protocols individual GP practices and care homes are encouraged to develop bereavement protocols. NHS North Lancashire participates in a Bereavement Strategy focus group at Cancer Network level Advancing disease Increasing decline Last Days of Life First Days after Death Bereavement 1 year 6 months Death 1 year The North West End of Life Care Model Whilst the above are all encouraged and some work is on-going in each there are gaps in support and provision. 3 Challenges and Gaps The PCT acknowledges that there are a number of gaps and challenges at each stage: 3.1 Advancing Disease; Early identification of patients whose disease has reached a stage where on-going treatment is not useful and palliative care is the most sensible option. This is a particular issue for patients with a non-cancer diagnosis. Added to this is the need to communicate this between secondary and primary care so that the relevant support can be given. Use of the standard end of life tools is not as consistent as it could be. Recent surveys of Primary Care and Care Homes suggests that knowledge and use of the tools is variable. 3.2 Increasing Decline: At the time of commencing the work in this area, a Just in Case Drugs policy was not in place. Sharing of information between different health professionals was not consistent, particularly with Out of Hours GP Services and Ambulance Services. Psychological support was not available to the patients and carers. 3.3 Last days of life The Liverpool Care pathway was not used as consistently as it could be across the patch. Patients, their families and professionals highlighted difficulties in enabling patients to die in their place of choice particularly at home due to lack of trained carers in understanding the dying process. 3.4 Bereavement protocols - Services for families post bereavement are not consistent and require review and improvement. The sources of information which have been used to assess the pathway and existing performance or benchmark against good practice are: A further survey is being undertaken by Lancaster University for the District Nursing Service. Surveys of GPs, Care Homes and Carers regarding particularly the use of the end of life tools. Details can be made available Improving outcomes guidance for palliative care The national strategy for end of life care The Cumbria and Lancashire Needs Assessment for Palliative Care. Page 2 of 5

3 3.5 Range of Providers: The PCT commissions services from two very good hospices; St. John s in Lancaster and Trinity Hospice in Blackpool. These give added value and have worked to support the pathway from a specialist point of view and have been actively involved in the development of the local strategy and with improving the care of patients who are dying across the PCT area. There are also many other providers of services at the end of life again all of whom have been involved. One of the key commissioning functions has been to bring these providers together around a single strategy and to agree the improvements needed to the processes, rather than fundamentally designing a single pathway. This has service to maintain the ability to provide individualised pathways to best meet the presenting need. North Lancs Locality Characteristics: Population of 323,400, population increase of approximately 6% expected by 2013 with a 13% increase in the over 65 year s population. 4 Initiatives to redesign 4.1 In undertaking this work the key impacts are expected to be: An increase in the number of patients who are enabled to die at home or in their place of choice. An increase in the support to carers and families of those bereaved. The revised milestones which have been set of these as part of the strategy plan are set out below: Milestones 2009/ / / / /4 Increase % of deaths occurring at home 19% 22.5% 25% 27.50% 30% Increase % of deaths in 25% 27.5% 30% 32.5% 35% preferred place of death The % of carers receiving a carer s break, carer s service, advice and information following an assessment or review (LAA NI 135) 24.6% 25.7% 25.7% 25.7% 25.7% Other benefits expected are as follows: Increased usage of all end of life tools. Improved pain control for those at the end of life Improved information sharing between organisations so that patients and their families have better support and management. Whilst the main benefits of this work are believed to be in improving quality of care and end of life experience there are also potential cost savings. An audit of 30 patients at the end of life in the acute trust showed that 27 of them did not wish to be there. The average cost of each of those episodes was 4,000. Whilst not all of the episodes could have been avoided, at least some of them could have been. It is unlikely that support in the community over the relative short period of time would have cost the same amount. A requirement for re-design by Providers is not anticipated; however, we expect that quality improvements will be made. These will be monitored through contractual arrangements which the PCT has with all providers. A number of initiatives have been undertaken over the last 2 years, some of which are aimed at providing additionally and others are improving the commissioning arrangements with providers: Page 3 of 5

4 4.2 Advancing Disease Involvement in the Triple Aim project and development of protocols between secondary and primary care to identify when a patient has reached the palliative stage of their disease. This will also look at how information can be better shared between providers and with patients and carers Focus on the improved use of Preferred Place of Care discussions and work with patients and their families. Introduction of GP MacMillan Facilitators to the Fylde and Wyre areas of the PCT to improve the links between primary and secondary care. Development of the use of the Gold Standards Framework in Care Homes. 4.3 Increasing Decline Provision of 24/7 telephone help lines by both Hospices to support professional and families at this time. Increased provision of Clinical Nurse Specialist time to support patients and carers at this time. Provision of Just in Case drugs and contract with specific pharmacies for the provision of these. 4.4 Last days of life Work by the GP Macmillan Facilitators to improve the use of the Liverpool Care Pathway at the end of life. Development of an Integrated Community Palliative Care pilot to test how patients and families can be better supported to end their life at home. This is jointly commissioned with the Local Authority and delivered by an independent sector domiciliary care provider. The pilot is nearing compilation and will be evaluated in early 2010 with an expectation to roll this out to the wider PCT area. 4.5 Bereavement protocols Services for families post bereavement are not consistent and require review and improvement. Survey work has commenced with carers and this will inform the work which will be developed. 5. Rationale and Process What has been Achieved? 5.1 End of Life Boards established within both acute hospitals service the PCT 5.2 Care Homes Facilitator to support Care Homes to achieve the Gold Standards Framework accreditation for End of Life Care funded by PBC and LWDP 5.3 GP MacMillan facilitator appointed to Wyre & Fylde area 5.4 Introduction of new DNAR policy (Do not attempt resuscitation) 5.5 Introduction of Just in Case drug boxes 5.6 Introduction of 24 hour telephone Help lines 5.7 Effective use of the fast track for NHS Continuing Care to enable people to die in their place of choice 5.8 Pilot of Integrated Palliative Care Service 6 Future Plans 6.1 Fund Facilitator to support Domiciliary Care agencies to achieve GSF accreditation 6.2 Deliver training to staff to embed the new DNAR policy 6.3 Support Care Homes to achieve GSF accreditation 6.4 Continue to develop EoL pathway to ensure seamless transitions of care 6.5 Evaluate Integrated Palliative Care Service Page 4 of 5

5 Links to WCC Competencies Competency Section No 3 1.2, 2.4, 4.2, , , 4.1, 4.2, 4.4, 4.5, , 4.2, , 4.2, Conclusion and Recap 7.1 End of life care was identified as one of our Priority Health needs identified in the Strategic Plan, this Pathway description sets out to inform the reader of the processes we went though, how we engaged with patients, public and partners to develop our services and to continue to work with our partners in particular the Local Authority and Practice Based Commissioners to ensure effective, quality driven pathways which cross the boundaries of health and social care, primary and secondary care to give a seamless integrated approach to the end of life pathway. Page 5 of 5