HULL AND EAST RIDING OF YORKSHIRE DEMENTIA, PALLIATIVE AND END OF LIFE CARE WORKING GROUP REPORT NOVEMBER 2011 Authors:- Laura Wigley, Macmillan Palliative & End of Life Care Programme Manager, Humber and Yorkshire Coast Cancer Network Janet Woodhouse, Nurse Consultant, Humber NHS Foundation Trust Anna Wolkowski, Director of Clinical services, Dove House Hospice Dementia Palliative and End of Life Care Working Group Report Final Version: 30.11.2011
Introduction An array of anecdotal evidence exists across both Hull and the East Riding of Yorkshire with regard to the lack of multi-disciplinary, coordinated palliative and end of life care afforded to people with dementia and their carers. This is further supported by national reports, in which end of life care for people with dementia is described as a matter of particular concern, with evidence to suggest that people with dementia are less likely to receive palliative medication, have attention paid to their spiritual needs, or be referred to palliative care specialists than people who do not have dementia (Nuffield Bioethics Report, 2009). This is despite the clear recommendations and expectations that are outlined in several national strategies, most notably the National Dementia Strategy (Department of Health, 2009) and the End of Life Strategy (DoH, 2008). Fuelled by the above, a local working group consisting of key stakeholders from statutory health, social care, the third sector and academic organisations was established to improve palliative and end of life care services for people with dementia and their carers in Hull and East Riding, through the development of a detailed care pathway. The purpose of the group paid particular attention to the aforementioned strategies and the NHS and Social Care Long Term Conditions model, ensuring that the work of the group covered the entirety of the patient and carer journey. As advocated within the national End of Life Strategy (DoH, 2008), it was intended that the care pathway developed by the working group would be underpinned by a whole systems approach that included:- Identification of people with dementia approaching the end of life and initiating discussions about preferences for end of life care; Care planning: assessing needs and preferences, agreeing a care plan to reflect these and reviewing these regularly; Coordination of care; Delivery of high quality services in all locations; Management of the last days of life; Care after death; Support for carers, both during a person s illness and after their death. To facilitate the development and implementation of such a pathway, the working group was also given the responsibility for:- Reviewing the current availability and quality of palliative and end of life care provision for people with dementia across Hull and East Riding as a baseline to monitor progress against; Producing recommendations for future workforce development to ensure that health and social care staff at all levels have the necessary knowledge, skills and attitudes to successfully improve palliative care for people with dementia and their families; Creating robust links with other local dementia care developments such as the Stepped Care Model and East Riding s Improving Services for People with Complex and Challenging Needs group; 1
Establishing close channels of communication with the Local PCT Palliative Care Groups and the Humber and Yorkshire Coast Cancer Network End of Life Care Steering Group which reports to the Strategic Health Authority Pathway Leadership Board Reporting findings and progress directly to the Hull and East Riding Dementia Strategy Implementation Groups. Developing care packages and pathways within Humber NHS Foundation Trust To date, the group has met 6 times since the inaugural meeting in July 2010. Throughout, the opportunity has been taken to both progress the work plan and to utilise networking and learning opportunities. This has included postural management, complementary therapies, the role of the Dementia Voice Nurse and updates on current issues, reports and developments. All meetings have been well attended, with the roles represented ranging from Admiral Nurses to academics. Attendees have also included representatives from other localities who were able to share their learning and experiences. The following chapters will outline in more detail the work that has been completed so far and the emergent actions for the future. However, it should be highlighted before continuing, that the work of the group has been reinforced by the first joint meeting of the All Party Parliamentary Group (APPG) on Hospice and Palliative Care and the APPG on Dementia which was held on Tuesday 12 th July 2011.The bringing together of these 2 groups emphasises an ongoing national concern for the importance of working together and provides further evidence that the work of the group is in keeping with national strategy. It was at this meeting that our group was invited to present a workshop on the development of the pathway at the next National Council of Palliative Care (NCPC) Dementia Conference to be held in December 2011. Furthermore, the work has been positively featured in the End of Life Care Strategy s Third Annual Report (DH, 2011. Page 22) 2
The Stepped Care Framework Much of the work undertaken by the Working Group concerned drawing elements of end of life care into existing frameworks and processes, to raise awareness and to ensure end of life care becomes embedded into practice and is acknowledged at each stage. This work began with the locally-developed, multi-agency Stepped Dementia Care Framework and involved the identification by the Working Group of the end of life tasks that would occur at each step, thereby creating a long term conditions version of the Stepped Care Framework, as shown below (Figure 1). Figure 1 Hull & East Riding Stepped Long Term Conditions Framework for People with Dementia and their Families Level 4: Last Days of Life and Care after Death Enabling people with dementia to die with dignity and in the place of their choosing and supporting carers / families during their bereavement Level 3: High Complexity Identifying the most vulnerable people, those with highly complex multiple long term conditions, and use a case management approach, to anticipate, co-ordinate and join up health and social care. Level 2: High Risk Providing people who have a complex single need or multiple conditions with responsive, specialist services using multi-disciplinary teams and disease-specific protocols and pathways, such as the National Service Frameworks and Quality and Outcomes Framework. Level 1: Self Care Support / Management collaboratively helping individuals and their carers to develop the knowledge, skills and confidence to care for themselves and their condition effectively. Foundation Level: Raising Public and Professional Awareness - Promoting better health, raising public and professional understanding of dementia and promoting an improvement in access to high quality palliative and EOL care for people with dementia and their families The Ideal Journey The above Framework led the Working Group to consider the journey that a person with dementia would ideally follow. The ideal journey that emerged may be seen overleaf (Figure 2). Depicting the patients journey in this manner ensures that there is a single vision of best practice for people with dementia living in Hull and East Yorkshire, based upon the long term conditions model, agreed by all members of the Working Group, ensuring the all members are working towards the same goal. 3
Figure 2 Access: Single Point of Access (Triage) GP Diagnosis: Acute hospital Liaison Psychiatrist Neurologist Psychiatrist Memory Clinic Inclusion on QOF Dementia Register Allocated key worker Living well with dementia through: Positive Risk Management Person centred planning and care with friends and family Telecare and telehealth as appropriate Refer patient and carer to education programme regarding diagnosis, prognosis and support Signpost to appropriate services (N.B. Examples only given here. This is NOT an exhaustive list of available support) Dove House Hospice Admiral Nurses Macmillan Alzheimer s Society Specialist Palliative Care Team Age UK Welfare Rights Carers Centre Social Services Hull Churches Home From Hospital Patient supported at home Disease progresses/health deteriorates Highlighted through referral to GP, District Nurse or Case Manager by any person or professional. Proposed dementia suite at Dove House Hospice utilised when required to prevent unnecessary hospital admissions Admitted to Care Home with appropriate tools completed Ensure timely, sensitive and person centred completion of the following: Advance Care Planning Including Preferred Priorities of Care Advance Decisions to Refuse Treatment Do Not Attempt Cardiopulmonary Resuscitation Will Lasting Power of Attorney (health/wellbeing and financial) Living Well/person centred tools as appropriate (including a Patient Passport) End of Life Care Team/Neighbourhood Care Team service Comfort Box MDT diagnoses dying phase using prognostic indicators for Dementia Patient placed on End of Life Register by GP Fast track to Continuing Health Care completed by key worker Macmillan service Patient dies peacefully in their preferred place of care Just in Case Box Care Home Liaison Service provide support. Consists of a range of professionals, including Older Peoples Mental Health Clinicians, Community Pharmacy, Community Geriatrician, End of Life Care Specialists GP and Care Home staff confident that enable them to implement all of these appropriately Ideal Journey Bereavement follow-up completed by an appropriate professional (e.g. Allocated Worker, District Nurse, Care Home Staff Member, End of Life Care Team) 2/3 days after the bereavement to check on family/carers. Follow-ups continue periodically at 3 and 6 weeks, with signposting to appropriate services possible, particularly in cases of abnormal grief.. In developing the ideal journey, certain elements were identified as being of particular importance to achieving good quality care and experience; Early diagnosis of dementia and sensitive communication with the person and their family to enable them to make the necessary plans and advance decisions for their future. Increasing awareness and knowledge by educating the individual and their loved ones regarding dementia Effective establishment of dementia registers and end of life care registers within primary care Effective signposting to appropriate services as necessary and appropriate Ongoing person centred planning, including consideration of the legal framework regarding reduced capacity and future planning regarding end of life care that is based on a framework of positive risk management. 4
Adoption of a palliative approach from the point of diagnosis, utilising multi-disciplinary tools and documentation, that leads to the acknowledgment of the dying phase and implementation of the associated appropriate care All plans and documentation to be accessible to all appropriate staff, including out of hours services. Confident and competent staff who maintain up-to-date knowledge of local service provision and who are able to facilitate end of life care in the preferred place of care The use of telecare and telehealth where appropriate. The Working Group strongly supported the need for joined-up multiprofessional working, flexibility and creativity in tailoring care and support to the needs of the person with dementia and their family throughout the pathway to ensure that people had a positive experience of the holistic care and support offered The Current Journey Following on from this, it was vital that the Working Group understood how the agreed ideal differs from current patient experience. Therefore, a typical journey was also mapped (see overleaf, Figure 3), based on an amalgamation of common experiences expressed by members of the Working Group, the people they support and the national picture. As can be seen from the diagram below, specific gaps were identified (shown here in red), each having an impact on quality of care. 5
Figure 3 Individual is diagnosed with vascular dementia. They are married, with grown-up children and grandchildren. They own their own home No Inclusion on QOF Dementia Register No Allocated key worker No: Positive Risk Management Person centred planning and care with friends and family No education programme regarding diagnosis, prognosis and support No appropriate services as the patient remains unknown to providers Anti-psychotics prescribed Patient displays challenging behaviour Disease progresses/health deteriorates family dynamics change. Henry is no longer able to organise the family finances Patient cared for at home Admitted to hospital Omissions 1. Little to no planning completed 2. GP and Care Home staff lack confidence and skills 3. Little to no bereavement support Together these contribute to high numbers of hospital admissions and patient and carer distress Discharged to care home, where the patient displays an increase in behavioural and psychological distress due to the unfamiliar environment and care Patient admitted to Older People s Mental Health Inpatient Unit with likely delayed discharge due to lack of appropriate specialist care home provision Discharged out of area to a specialist placement at a significant cost, paid for through Continuing Healthcare monies Patient remains out of area, as previous history of challenging behaviour makes providers reluctant to provide care Patient s health deteriorates. Lack of staff knowledge and skill regarding end of life care means the patient is unnecessarily admitted to hospital Current Journey Patient dies in hospital Many of the gaps exist as a consequence of those that are present earlier in the journey. For example, without an allocated worker, there is a lack of effective signposting and awareness raising opportunities, which in turn reduces the likelihood of person-centred planning occurring and impacts on the family s ability to cope. Therefore, issues that are not addressed at the beginning of the journey can escalate and have a significant impact on the quality of care, and indeed death, which is exacerbated by the ongoing reduction in capacity for the patient. Perhaps the most significant of these gaps is that relating to the actual diagnosis of the dying phase for the patient, something that can have a significant impact on the quality of death and on the grieving process for the person s loved ones. Both of these journeys assume that a diagnosis of dementia has been given. However, the Working Group acknowledges the low dementia diagnostic rate across the local area with Hull currently having 35% of people with dementia 6
with a diagnosis; and East Riding having the 2 nd lowest dementia diagnosis rate within the UK with only 27% of people with dementia currently having received a diagnosis 1. Diagnosis is therefore another of the key gaps identified, even though it is not displayed in either of the above diagrams. Development of the Journeys Further details and an identified direction of travel were required if the vision of the ideal journey is to be achieved. To do this, an Integrated Care Pathway was developed (as shown overleaf, Figure 4), which builds on the graphical journeys whilst also reflecting the Dementia Long Term Conditions Stepped Care Framework by drawing on knowledge of what is already available in terms of expertise, support and training. In so doing, what actions need to happen, who needs to be involved, what training is currently available and the associated gaps at different stages of the dementia journey are identified, with the different stages referred to here being; 1. Early signs and symptoms 2. Diagnosis 3. Ongoing Support 4. Deterioration/Disease Progression 5. End of Life Depicting the Integrated Care Pathway as a series of stages enables the early signs and symptoms that are present prior to diagnosis to be recognised, along with their relationship with diagnosis, ensuring the full patient experience is acknowledged. Overall, the Integrated Care Pathway clearly outlines what needs to occur for the ideal journey to become a reality. 1 Alzheimer s Society (2011) The Dementia Map: PCT dementia prevalence and diagnosis rate at http://www.alzheimers.org.uk/dementiamap 7
What needs to happen Figure 4 Early Signs and Symptoms Public and professionals are aware of what to look for Public and professionals know where to go when they have concerns, irrespective of context including how to get a diagnosis Public and professional are skilled in how to raise the subject with the individual Increased knowledge and awareness to be achieved through better public promotion and education Achieved through better workforce development and improved understanding of multi-agency and multi-professional roles across dementia care and specialist palliative and EOL care services Single point of access for a co-ordinated, multi-agency response Diagnosis Ongoing Support Deterioration/Disease Progression Multi-professional Timely allocation and development of relationship with key bio-psychosocial worker / care navigator case formulation Referral to education programme regarding diagnosis, Diagnosis given in prognosis and support a timely manner Signposting the individual, family and carers to appropriate Individual and services in response to individual needs. For example: family/carer feel o Alzheimer s Society informed and o Carers Centre understand the o Age UK information they o Welfare Rights have been given o Dove House Hospice Assessment of o Social Care Services carer and family o Hull Churches Home form Hospital needs o Admiral Nurses Introduction of key o Macmillan worker / care o Specialist Palliative Care Team navigator o GP Inclusion of o EoLC Team/Neighbourhood Care Team individual on Timely, sensitive and person centred completion of; Dementia Register o Advanced Care Planning including PPC o DNACPR o ADRT o Lasting Power of Attorney o Will o Living Well: thinking and planning for the end of your life (Hull only at the moment) o Personal Care Plan (East Riding only) o Patient Passport o Tele-care and Tele-Health services Implementation and regular multi-professional review of case formulation, person centred care plans, and on-going carer s assessment Positive risk enablement Annual primary care health check On-going proactive management and review of other physical health problems including co-existing long-term conditions via primary and secondary services Use of personal budgets to give people and their carers more control and purchasing power MDT (including Specialist Palliative care MDTs) meetings with the inclusion of social care staff to consider need for increased practical support for the person and/or their family/carers (including respite) End of Life Care register Application for Continuing Health Care if appropriate Continued implementation and review of person centred plans as health and support needs change On-going assessment of carer and family needs Implementation of ACP, PPC, Lasting Power of Attorney and other person centred care plans and end of life care tools as appropriate Use of alternatives to acute hospital admission for the treatment of low-grade physical health problems (e.g the development of a Dementia Suite at Dove House Hospice and improved community outreach services End of Life Identification of the dying phase Discussions with the person and family as end of life approaches Management of physical symptoms Fast track to Continuing Health Care funding Access to 24 hour community services Comfort box/just in Case Box/Pre-emptive Prescribing Implementation of ACP, PPC, Lasting Power of Attorney and other person centred care plans and end of life care tools as appropriate Pre and post bereavement support for family and carers GSF meetings with the inclusion of social care staff Application of Liverpool Care Pathway Recognition and implementation of wishes regarding resuscitation (DNACPR) 8
Early Signs and Symptoms Who GPs Admiral Nurses Alzheimer s Society Age UK Social Workers Macmillan Nurses District Nurses Ward Nurses Public Health functions Domiciliary Workers Care Home Staff Diagnosis Ongoing Support Deterioration/Disease Progression GPs Neurologist Memory clinic Acute Hospital Community Hospitals Psychiatrist / Community Older Peoples Mental Health Services Liaison Psychiatrist For example:- Primary Care staff including GPs, out-of-hours GP services, Long-term condition nurses, Dementia Wellbeing Nurse (Hull), District Nurses, primary mental health staff, etc Older Peoples Mental Health Services Community Geriatricians (Hull) Social Workers / Care Management Housing Care workers all types Key Workers / care navigators Solicitors Admiral Nurses Dove House Hospice Macmillan Nursing Alzheimer s Society Carers Centre Age UK Welfare Rights Hull Churches Home form Hospital Specialist Palliative Care Team Allied Health Professionals For example:- Primary Care staff including GPs, Long-term condition nurses, Dementia Well-being Nurse (Hull), District Nurses, primary mental health staff, etc Older People s Mental Health Services Community Geriatricians (Hull) Social Workers / Care Management Care workers all types Housing Key Workers / care navigators Solicitors Admiral Nurses Dove House Hospice Macmillan Nursing Alzheimer s Society Carers Centre Age UK Welfare Rights Hull Churches Home form Hospital Specialist Palliative Care Team Acute Trust Community Hospitals Allied Health Professionals Ambulance Service End of Life For example:- Primary Care staff including GPs, out-ofhours GP services, Long-term condition nurses, Dementia Wellbeing Nurse (Hull), District Nurses, primary mental health staff, etc Older Peoples Mental Health Services Community Geriatricians (Hull) Social Workers / Care Management Care workers all types Key Workers / care navigators Solicitors Admiral Nurses Dove House Hospice Macmillan Nursing Alzheimer s Society Carers Centre Age UK Welfare Rights Hull Churches Home form Hospital Specialist Palliative Care Team Acute Trust Community Hospitals Allied Health Professionals End of Life Care Team/Neighbourhood Care Team Ambulance Service 9
Early Signs and Symptoms Training Awareness of dementia and training in the delivery of high quality palliative and EOL care across primary and secondary care providers and voluntary and independent sector providers Professional working relationships and partnership working between services, as well as partnerships with other local health and social care providers Gaps Information Dissemination Diagnosis Ongoing Support Deterioration/Disease Progression Making a Mental Capacity Act Mental Capacity Act diagnosis/how to Person-centred thinking and Living Well Safeguarding Vulnerable diagnose Awareness training for professionals on what services Adults Where to refer the are available. Deprivation of Liberty individual on to Positive risk enablement Safeguards How to deliver Annual Health Check Assessment and information/what Patient Passports management of the information to give Relationship-centred care behavioural and psychological symptoms of dementia (BPSD) Key Workers The rate of diagnosis across the local area is low, with long waits for those seeking a diagnosis. No dedicated early memory assessment service in East Riding Dementia registers do not reflect the number of people who have dementia Annual Health Check Education Programme Local dementia care navigator service There is great scope for the further development of more integrated health and social care services for people with dementia New NHS and social care monies are unlikely due to the current financial climate. Therefore a strategic shift in resources up the Dementia Pathway is necessary to deliver effective and proactive community based support Carers of people with dementia need better information and the undertaking of carers assessments needs to be increased Investment in proactive services that can offer a real and effective alternative to acute hospital admission Lack of palliative and end of life care liaison service for care home Lack of specialist EMI nursing beds in the area High rate of anti-psychotic prescribing End of Life Diagnosis of dying Mental Capacity Act Safeguarding Vulnerable Adults Deprivation of Liberty Safeguards Anticipatory Planning Liverpool Care Pathway Physical symptom management Spiritual care Dementia and End of Life Care Recognition and diagnosis of the dying phase for people with dementia 10
Summary The development of a local dementia long term condition integrated care pathway has brought a wide range of professionals together from many different services and organisations. Six working group meetings have been held and several smaller planning group meetings have also taken place. Having described the ideal patient journey, reflected upon the holistic needs of this client group and taken into consideration the likelihood of people with dementia coming into contact with a wide range of health and social care services across many different care settings, the working group reached a consensus of opinion that palliative and end of life care for people with dementia, their families and carers should be everybody s business. The development and implementation of the dementia long term condition integrated care pathway is a means to support this ethos and to ensure that there is a common understanding of the range of support, planning tools, services and treatments that are required at different stages of the dementia journey to ensure good quality, person-centred care. The implementation of the integrated care pathway will support the following outcomes: - People with dementia approaching the end of life will be identified in a timely way - Improved quality of life for people with dementia and their families - Improved public and professional awareness of dementia - Improved local detection and diagnosis of dementia - Prevention of inappropriate hospital admissions - Achievement of individuals preferred priorities of care - Minimising delays in hospital discharges and reducing length of hospital stays - Reduction in anti-psychotic prescribing - Reducing the cost of delivering health and social care through timely and appropriate use of services, including the use of telecare and telehealth solutions - Bereaved carers and families will receive appropriate and timely support The integrated care pathway and the potential outcomes outlined above would clearly lend support to the achievement of key strategic objectives included within the following: Recommendations - Transforming our Services - North Bank Strategic Review Dementia - NHS Chief Executive key priority areas The working group, together with lead dementia care clinicians within local older peoples mental health services, support the outcomes of this work being translated into the aforementioned programmes of local strategic planning. This would, strengthen support for the development of a long-term conditions model, delivered within a whole systems approach, to improve dementia care locally in line with national policy and good practice guidance. 11
In order to ensure appropriate service responses and to avoid the continuation of inappropriate hospital admissions, the working group felt that, as a matter of urgency, the availability of round-the-clock palliative and end of life care should be consistently available to people with dementia and their carers. The working group recognise that this will have significant resource implications and will therefore need to be considered within service planning and commissioning processes. This recommendation was further supported within the recent EOLC Summit hosted by the Hull and East Riding Clinical Policy Forum held on 22 nd September 2011. In addition to the development of the integrated care pathway, the working group meetings created a forum for the exchange of knowledge and expertise and enabled information about local resources and services to be shared. Anecdotal feedback suggests that this has already had a positive impact on direct patient care across a range of health and social care settings, locally. The working group therefore recommend that regular and on-going opportunities are created to enable the sharing of knowledge, skills and good practice between generalist and specialist dementia care workers and specialist palliative and end of life care practitioners. This will serve to consolidate and enhance joint working across the integrated care pathway and ensure that, through improved awareness of local service provision and better understanding of professional roles, health and social care staff will signpost people with dementia and their carers to palliative and end of life care services in a more proactive and timely fashion. Next Steps To achieve the ideals of the integrated care pathway within Hull and East Riding there is on-going work to be accomplished. The key tasks are outlined below:- 1. Senior level support and endorsement of the integrated care pathway will be sought via the local health and social care commissioning leads for dementia within Hull and East Riding to ensure that on-going development and implementation is fully integrated with the local dementia strategy implementation and commissioning plans 2. This report will be presented to the Transformation Board, hosted by Humber NHS Foundation Trust in November / December 2011 3. This report will be shared with the Programme Lead for the North Band Strategic Review for Dementia 4. Opportunities for securing funding to establish local Dementia Macmillan Nursing roles across Hull and East Riding to enhance existing specialist palliative and EOLC services and to support and evaluate the implementation of the integrated care pathway are due to be explored 5. A local mapping exercise is being undertaken to identify the range and quality of training and development opportunities for health and social care staff in palliative and end of life care. The outcomes will be reported into the local Dementia Academy Steering Group in January 2012 in order to inform the development of a dementia palliative and end of life care training pathway for health and social care staff reflecting the key stages of the dementia stepped care framework and the dementia palliative and end of life integrated care pathway 12
6. Opportunities for small scale piloting and evaluation of the integrated care pathway will be explored across different health and social care settings over the coming months, ideally to support the Transforming Our Services agenda 7. Local palliative and end of life care tools and documentation will be reviewed and updated, if necessary to reflect the needs of people with dementia and to ensure consistent adoption across health and social care staff. This work will commence within the next Dementia Palliative and EOLC Working Group meeting to be held on 15 th December 2011 8. The practice and content of annual health checks, locally for people with dementia and their carers will be reviewed in order to ensure that the palliative and end of life care needs of individuals is captured and considered. This will build upon the work currently being undertaken across primary care services in Hull by the Dementia Wellbeing Nurse. 9. Opportunities to ensure that the outcomes and continuing development and implementation of the pathway dovetail into the EOLC Summit s Project Group will be explored to avoid duplication 10. The development of the pathway is being disseminated locally and nationally through conference events due to wide interest 11. The continuing development and future implementation of the integrated care pathway will be co-ordinated by the Humber and Yorkshire Coast Cancer Network End of Life Care Steering Group which reports to the Strategic Health Authority Pathway Leadership Board 13