Aim of the Engagement Forums
A Strategic Framework for Action for Palliative care is being developed to ensure that new national aims and objectives reflect the current and future needs of the population and the future arrangements in the health and social care system that will be required. Improving palliative and end of life care involves a wide range of people and organisations, across the health and social care, professional and public, and statutory and voluntary spectrum.
The engagement forums that took place over June and July 2015 will build on early feedback and continue to foster a collaborative and in partner approach to ensuring that the development of the Framework is fit for the next five years and beyond. Three destinations have been chosen initially in order to reflect views from as wide a geographic coverage as possible. These are Edinburgh, Glasgow and Aberdeen. This report reflects the views of all three.
In total, 181 people attended the Forum Events. Attendees included NHS practitioners, nurses and doctors, members representing voluntary organisations, members of the public and Scottish Government officials. The views expressed in this document are a summary of roundtable discussions from all three engagement forums. Attendees across all three engagement forums composed of:
- Almost two thirds of attendees were health professionals
- One third of attendees were from the Third sector
- Less than one in ten were from the Scottish Government
- Fewer attendees than this represented social care, private organisations, Academia and interested members of the general public
In order to initiate the discussion at the forums, each Engagement Forum asks five Key Questions:
1. What have been the key achievements in the delivery of palliative and end of life care in Scotland since the publication of Living and Dying Well in 2008?
2. What do you see as being the main priorities and objectives to improve palliative and end of life care in Scotland over the next five years (2015 – 2020) and beyond?
3. What matters to you if time were to become short? What would you want Scotland's future
4. What are the most significant challenges to delivering improvements in:
(a) Access to; and
(b) Quality of palliative and end of life care in Scotland in the future?
5. How can we support these improvements?
(a) In access
(b) In quality of care
6. Approaches to measuring palliative care?
What have been the key achievements in the delivery of palliative and end of life care in Scotland since the publication of Living and Dying Well in 2008?
- Increased Public engagement
- EPCs and e-KIS (Electronic Key Information Survey IT) improved e-communication and collaboration across all services
- Openness: More inclusive language used across the board
- Both generalists and specialists are more willing to engage in the difficult conversations
Education and Training:
- For nurses and doctors. Palliative Care education is now more readily available online
- Job shadowing and community staff training: integration of this has worked well
- More educational opportunities are on offer to nurses and doctors
- Gold Standard has been instigated (though this does vary between practices)
- Anticipatory Care Planning: prescribing, concept and medications have improved
- Huge steps toward 24hr care
- Person-centred approach
- The conversation has started. Profile of dying has been raised
- There has been a more joined-up approach (e.g. between Mental health and prisons)
- Nurses and hospice ‘building bridges’ making for good resources for LD networking
- Acknowledgement of need for more collaborative working and the mixed needs of patients
- Better links with social care, multiagency involvement including third sector links
- Increase in number of care home staff
- There are now Palliative Care leads at board levels
- Children have been prompted for the framework development.
- Good palliative care is not only delivered by healthcare professionals. This has been a result of the increased complexity of the community service which evolved organically in response to the need.
- Shift in general away from Palliative Care being associated with a cancer diagnosis to anyone with a life-shortening condition. Palliative Care not exclusive to specialists
- Shift to ‘live well and die in a dignified way’, away from medical 'treat model'
- SG buy in with palliative care higher on the agenda (Improved profile nationally, regionally)
- All Age Inclusive: Palliative Care is now recognised as not having an age boundary
- Earlier Identification
Guidelines, Tools and Standards:
- Gold Standard and improved national guidelines / Development of tools (SPARRA - Scottish Patients at Risk of Readmission & Admission)
- Guidelines: Scottish Palliative Care national guidelines have been improved
What do you see as being the main priorities and objectives to improve palliative and end of life care in Scotland over the next five years (2015 – 2020) and beyond?
Capacity and Resources:
- Shift the balance of care, up-skilling staff and increasing capacity/equipment in the community
- Increase the number of hospice beds
- Rapid response and access to key resources across health and social care
- Manage expectations e.g. suggesting 24/7 care if it is not feasible
Improving Communication and awareness:
- Destigmatise 'death', 'dying' and 'bereavement'
- Better understand the reality of dying at home and the need for increased choice/flexibility.
- Developing a single shared IT system: across all services
- Consistent language: change from ‘palliative’ and shared language use across all services
- Increased awareness of culture-specific responses, such as Chinese / elderly prefer not to die at home
- Creating a Framework for All
- Increased local area co-ordination for primary care including better workforce planning
- Need for a seamless multi-disciplinary team
Improved Education and Training:
- All staff have better access to education and training including experiential training opportunities/reflective based practice and are better rewarded and supported emotionally
- A more 'hands-on' approach, adept in dealing with difficult conversations
- Capturing post-bereavement information
- Ability to have difficult conversations which are currently avoided (GATE: Good Life Good Death Good Grief initiative)
- Consistency in the quality of palliative care provided across different locations / patient groups
- A continued working culture change: in nursing, social work, medical and undergraduate to postgraduate. There is a need for strong leadership and a proactive public v media engagement.
Person Centred Outcomes:
- Increased flexibility: more pathways increasing patients flexibility, such as if individual (with)/out family. This includes improving access to Power of Attorney and reducing costs
- Address an aging population: refocus on the elderly
- Equity of access (consistent): a mapped out process detailing roles and responsibilities from home to hospital stay
Investigate and Research:
- Increase evidence base of successful roll out of new initiatives
- Investigate new models as 'more talk does not equal more done'
- Collect carer stories – gain real time feedback from organisations like Marie Curie
- Increase service reach to younger adults
- Community hubs / health centres to strengthen communities and be wary of differing demographic needs amongst different communities
- 24/7 care at home and more out of hours and overnight siting services
What matters to you if time were to become short? What would you want Scotland’s future approach to palliative and end of life care to provide you as a result of this?
Person Centred Outcomes:
- Flexibility and choice
- Maintaining Control and to be treated as an individual
Well Supported and Fully Competent Staff:
- Safe in the knowledge that the staff have the appropriate knowledge, skills and competencies to look after me. Empathetic and sympathetic staff
- A core team would help with continuity of the process. Right place, right time (ASAP)
- Empathy and compassion among staff who are interested in providing care
- A proxy decision maker I can trust and, guidance through that process
- Better symptom management
- Collecting stories of good and bad cases can educate staff further
Well Resourced Hospital:
- Sufficient resources for in-patient non-acute care
- 'Better' 24 hour care
- Ensure staff / carers are resourced to do regular check-ups
- Promote 'your' quality, have control and autonomy over decisions
- Need trained staff/aware family who can talk about death openly (also on wills / funeral planning)
- Confidence in system
- Equal response from all services
- Skilled workers who better understand pain relief and who make effective communicators
- Utilise social media to drive care. IT driven solutions which can influence my care package
- Conversations not lost > passed on and recorded
- Shift away from treat model to a less medicalised version 'promoting humanity'
- Redesign the way we work together – district nurses and local authority carer workers work closer together across the same bed
- Outcome/wellbeing focused interventions that are not always about death
- Meaningful Health and Social Care Partnerships integration that is adequately resources and support for the family
- Make clear who coordinates care – more support for GPs and empower them to be a key coordinator of care for palliative patients and reduce bureaucracy
- Qualitative surveys – VOICES
- Scotland has no baseline – there is a 'poverty of evidence' and an urgent need for a 'minimum data set': Equity in the Provision of Palliative Care in the UK: Review of Evidence, Josie Dixon et al Personal Social Services Research Unit, London School of Economics and Political Science April 2015 [PDF, 5.06 MB]
What are the most significant challenges to delivering improvements in (1) access to; and (2) quality of palliative and end of life care in Scotland in the future?
- Who leads specialist palliative care and how this is communicated is often assumed and not in reality very well coordinated
- Public awareness: making it a priority. Need to find a way to get everyone to see this and not just as an individual but as a system, what we measure and how we measure.
- Needs to be a whole system holistic approach
- Systematic communication tool needed (IT) and GP buy in to e-KIS (Electronic Key Information Survey)
- Language (improved communication shares understanding)
- Simplified 24/7 advice process from each hospice to avoid system confusion. One number as a single access point
- Need for better 24 hour care and out of hours 24 hours does not apply
- Hierarchical structure misses grassroots: needs to be at the right scale, top down and bottom up
- Monitoring and assessing palliative care is a challenge
Lack of Understanding:
- Lack of agency for ethnic minorities: Need to better understand cultures
- Services are not meeting increased expectations: this includes young adults in transition
Lack of Streamline in Palliative Care Service Provision:
- Referral pathway can be complicated and results are delayed
- Lack of coverage for learning disabilities and dementia care, for example access to medicine especially if patients cannot verbalise concerns
Consistency In Approach:
- Attempting to ensure that everyone understands the meaning and terminology of palliative care
- How can care be standardised? For example between nursing and care homes.
- In measures used
- Messaging palliative care as 'everybody's business'
- Treatment of joint working across settings
- Reorganisation and reintegration of the new health and social care partnerships
- Lack of many non-linked systems
- Knowledge of what is available and what palliative care is and for
- Routes of referral
- More dialogue and earlier awareness
- Out of hours GP services not knowing the patient
Appropriate Education and Training:
- Training is not fully inclusive: although it is available
- Need for appropriate dying coping strategies to better deal with uncertainty
- Death and dying is a cumulative burden. There is avoidance due to overloading / burnout.
- Improve e-learning e.g. Learning disability learning packages
- Overdependence on short-term funding
- On workforce recruitment: professional working on a more effective way to attract more nurses into community
- Risk averse nature of the service
- There is a stigma toward palliative care. Patients don’t want to be put on the palliative care register.
- People don’t understand professional roles. Culture of whose responsibility in Palliative Care and Anticipatory Care Planning needs more clearly defined: this needs to be 'everybody's role'. There is also a difference in working culture between health and social care.
- Sticking to traditions / not thinking out of the box
Consistency of Approach:
- Medical staff must consistently recognise the right time for palliative care (if the patient is ready)
- When treating across different client groups (age/weight)
- Supportive vs palliative care
- When diagnosing dying – Anticipatory Care Planning is being left too late
- Need for partnership training opportunities
- Support from all agencies
- Needs to be a whole system holistic approach: There is a lack of joined upness through the IT systems and paperwork. There is a severe lack of an interdepartmental working culture.
- Expertise at the bedside
- Healthcare Improvement Scotland (HIS) – care of older people in hospital
- Person-centredness varies and is inconsistent: need to balance medical model versus patient centred care
- Lack of flexibility and choice for patients: Needs to be 'Patient Defined Outcomes'. Presently, patients do not feel sufficiently empowered to make choices. There is not enough focus on patient and family/carer-centred care.
- Medicalisation of bereavement
How can we support these improvements? (1) in access (2) in quality of care.
Communication and Reach:
- A helpline with specific numbers could increase reach
- Opportunity for appropriate mapping to increase reach and access
- Information sharing: improved systems and versions of data sharing / partnership
- Increase public engagement around death and dying to normalise discussion and remove stigma
- Action > Implement > Monitor > Assess
- Map and measure when the patient enters the system. An iterative and therefore quantitative approach
- Make care at home a priority. Skills, educate and provide resource to enable this.
- Manage patients / staff expectations
- Share the care between carers and patients
- Increased flexibility and choice for patients: over personal payments and how patients wish to be cared, support for those who do not / cannot plan ahead and provide for those that simply do not cannot communicate choice
- E-system like e-health to be used as a virtual hospice improving digital infrastructure
- Increase specialist access so patient doesn't have to move from home
- Improve role of volunteers who have support roles around reading / activities and meal times
- Transfer resource rather than create. A five per cent shift to community over acute to shift the balance and maximise existing resources.
- Integrated Joint Boards: Strategic plans required
- Need a single point of contact and more health and social care integration
- Link resource better and share good practice/learning across the board
- Multi-agency support (government and health board). Every agency needs to be aligned / synced.
- Work within cancer palliative care needs to be transferred / translated to general palliative care
- Protect systematic approach to placement of hospices
- Identifiable pathway of care
- Increase 24/7 access / out of hours across NHS
- Rights-based framework approach recommended
- Over-regulation has been known to create a 'culture of fear and persecution'
- Less bureaucracy: more meaningful and 'less target driven' to override the risk averse culture in the NHS
- More flexible policies and further education: to address blocks and barriers to wider population groups. There needs to be more strategies in place for hard to reach areas.
- Simplify the palliative care process with more clearly defined pathways: Staff and patients need to better know where they are in the process
- More inclusive of communities and families: need to fully utilise the community resource
- Bring people together to share stories and experiences, providing opportunities to learn best and worst practice at undergraduate level
- Feedback service: not just for complaints, encourage positive feedback, online feedback and gain experience from users of services
- Continue to raise the profile of palliative care
- Communication skills must be mandatory for all staff
Education and Training:
- To support a cultural and attitudinal shift
- Also to allow for time to reflect and educate carers, this is currently in reverse and is being trimmed back. Time and space offer opportunities for recognition.
- Specialist vs general care needs more balanced
- Drive lost from when Living and Dying Well was launched. Needs reinvigorated and put back on NHS agenda with sufficient resources to support this push. Need for consistency.
- Need to use precious resources wisely
- To enable better resource focusing on identifying whether a patient requires palliative care
- More hospital beds increases access
- Free resources to be used as and when required
Collaborative and Integrated Service Provision:
- Need for more team working partnerships
- there also needs to be realism whether joint integration can't do everything
- Core attitude is pivotal no matter how much education is available
- Discuss things earlier, enabling maximum quality of life, and include service users, patients, carers from an early point. Discuss in order to establish common threads.
Person and Patient Centred:
- Ownership: palliative care is the responsibility of everyone to provide excellent basic care but must be centred around the patients involved
- Variability: code of practice to make explicit that which is important to patients
- Create more wellbeing outcomes focused with 'happier patients'
- Simpler process that is not systematic
Increased Research Into:
- Sharing good practice: roll out successful programmes, collect rich data to better understand opportunities to improve service provision. Innovative thinking outside of the box.
- Understanding Culture Variation: Need to better capture ethnic minorities experience and differentiate between east/west of Scotland. Increase knowledge of how different communities feel.
- Find the best means of balancing specialist/generalist: make palliative care everyone’s business. Suggest palliative care training replace mandatory annual cardiopulmonary resuscitation training or at least alternate with it (it’s difficult to maintain clinical confidence/competence unless skills and knowledge are used regularly).
Better Measure of Care and More Person-Centred Outcomes:
- Measure person centred outcomes
- Increased transparency and auditing of services
- Have Standards of Excellence and a robust Measurement Framework
Approaches to measuring palliative care?
- Designate responsibility to a person on each board
- Quality vs quantity
- Need to understand how to best capture a person and families experience
- Need to have a measuring outcomes so as to better understand relationship satisfaction
- Single point of contact can collect feedback
- Outcomes focused - planning ahead options Plan A and B
- A person with responsibility for measurement on each board
- How to capture a person experience / families
- Map and measure when the patient enters the system. An iterative and therefore quantitative approach.
- A generic form that you can quantitate in a rating 1-10 to measure experience of quality of care – quantify qualitative info
- Ask patients and families about experience learning what works and does not. Ask bereaved families about experiences. Use the above in conjunction with tools we have, for example identification of the palliative patients and review of care of death.