PALLIATIVE AND END OF LIFE CARE STRATEGIC …



PALLIATIVE AND END OF LIFE CARE STRATEGIC FRAMEWORK FOR ACTION ENGAGEMENT ROADSHOW: ABERDEEN

‘What matters to you about the future of palliative and end of life care in Scotland?’

The Sir Duncan Rice library, Aberdeen University, Aberdeen

16th July 2015

Summary Report

Aim of the Engagement Forums

As you will be aware, 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 have taken place over June and July 2015 have built 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 the Aberdeen/Grampian region.

In total, 50 people attended the Forum Event. 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 at the Aberdeen engagement forum. We have thus far received encouraging feedback from the event in Edinburgh and Glasgow. The shared learning and insights gained from the Edinburgh and Glasgow forums about (i) what has worked well and (ii) where we have changes to make to strive for improvements, as highlighted in the Edinburgh and Glasgow events are reflected in the following pages.

In order to initiate the discussion at the forums, each Engagement Forum asks 5 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 5 years (2015 – 2020) and beyond?

3. 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 ?

4. How can we support these improvements?

(a) in access

(b) in quality of care

5. What matters to you if time were to become short? What would you want Scotland’s future

6. How would you measure progress?

SCHEDULE

|12 – 12.30 |Sandwich lunch will be available |

|12.30 – 12.45 |Palliative and End of Life Care - - The Policy Story |Mrs Janice Birrell, Senior Policy/Implementation Manager, |

| |so far |Palliative and End of Life Care |

| |- The Policy connections | |

|12.45 – 13.00 |Progress since 2008 – what do we know? |Dr David Carroll, Strategic Lead for Palliative and End of Life |

| | |Care |

| | |NHS Grampian |

|13.00 – 13.15 |Drivers for change and improvement |Professor George Youngson CBE, Emeritus Professor Paediatric |

| | |Surgery, University of Aberdeen |

|13.15 – 13.20 |Questions | |

|13.20 – 14.30 |Facilitated Session/Input and feedback | |

| | | |

| |What Matters to me? |Facilitated discussion |

|14.30 – 14.40 - Comfort Break/Tea and Coffee |

|14.40 – 15.45 |Facilitated Session/Input | |

| | |Facilitated discussion |

| |Challenges and Opportunities. | |

|15.45 – 16.00 |Summary and Closing Session |Member of the Palliative and End of Life National Advisory Group |

| | |will summarise and advise on next steps. |

| |Strategic Framework for Action - What Next? | |

GLOSSARY

|DNACPR |Do Not Attempt Cardiopulmonary Resuscitation |

|LCP |Liverpool Care Pathway for the Dying Patient |

|EOL |End of Life |

|OOH |Out of Hours |

|LaDW |Living and Dying Well |

|ACP |Anticipatory Care Planning |

|PPOC |Preferred Place of Care |

|AHP |Allied Health Professionals |

|SAS |Scottish Ambulance Services |

|PoA |Power of Attorney |

|e-KIS |Electronic Key Information Survey |

|SDS |Self-Directed Support |

|SPPC |Scottish Partnership for Palliative Care |

|CPR |Cardiopulmonary Resuscitation |

|PCO |Person Centred Outcome |

|JIC |Just in Case |

|COPD |Chronic Obstructive Pulmonary Disease |

|GLGDGG |Good Life Good Death Good Grief |

Question 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?

COMMUNICATION:

• Electronic sharing: e-KIS and EPCs have improved collaboration and communication.

• Profile of palliative care increased through SG commitment.

• Tilt towards being ok to talk about dying.

WIDENED SCOPE:

• Move away from cancer-only focus, to longer term conditions.

QUALITY IMPROVEMENT:

• Huge steps toward 24hr care.

• Guidelines (multi-agency).

• IncreasedPoA.

• Helped non-clinical settings.

• DNACPR policy – improvements but still ongoing need for education.

• Bereavement support: hit and miss – you can get access via a hospice but if not in a hospice then it can be missed.Need to see if there is a 3rd sector organisation we can refer to.

AWARENESS:

• Through the work of Marie Curie and MacMillan.

• The conversation has started.

• Profile of dying has been raised.

• Of the benefits of ACP, which has improved with more families being referred and more youth.

• Made strategic planners listen to key individuals.

• Advocacy – conversations and awareness raised e.g. PoA.

EDUCATION / TRAINING:

• Professionals now know what palliative care is.

• Broader definition of palliative care e.g. dementia.

• Palliative care helps support carers and patients.

• Of the public who better understand palliative and EOL.

INTEGRATION:

• Kickstarted the paediatric agenda, a collaborative approach pre H + SC integration.

• Precedent of whole of Scotland working, though some still not on board. Up-skilled to be able to talk professionally.

• A more integrated role for the 3rd sector.

RESOURCE:

• Processes now in place but concern how they work in practice.

• Provides an honest platform.

• Phone help for clinicians.

Question 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 5 years (2015 – 2020) and beyond?

CAPACITY/RESOURCES:

(i) To improve OOH services and provide 24hr care.

(ii) Support for carers – respect/status/training – empowering carers/autonomy

(iii) Support to keep people at home e.g. respite / more paid carers / 3rd sector and wider community

(iv) Extension to a wider range of conditions beyond cancer.

(v) Address workforce issues: pay/staff shortage/qualifications/skills.

(vi) Allow for time to take up education/training and provide more training.

(vii) Have a planner who coordinates things and who everyone knows.

(viii) To improve transition between care services.

IMPROVING COMMUNICATION / AWARENESS:

(i) Improve e-sharing and e-systems as they do not always work.

(ii) Extend to longer term conditions with poor prognosis but likely to live for a long time.

(iii) Named lead care provider but work as a team each of who know/are aware of each other.

(iv) Make the care sector a more attractive place to work.

(v) Helpline for patients and carers.

INTEGRATION:

(i) Need for a more integratedpalliative service care with better coordination as seen in COPD.

(iv) Need for a seamless multi-disciplinary team.

(v) All access the same information – knowing everyone involved and a consistently updated system.

(vi) Care coordination: navigation is very difficult for those involved be it staff or carers or relatives.

IMPROVED EDUCATION AND TRAINING:

(i) Remove tick-box approach to ACP/KIS/JIC and make them living documents.

(ii) Palliative care for dementia.

(iii) Education for public, staff and carers on palliative care service. Increase understanding of the different phases and on the EOL approach. Better train staff to understand that it is the bulk of their work and not just part of a ‘specialist hightower’.

(iv) Ability to have difficult conversations which are currently avoided (GATE: GLGDGG initiative).

(v) Demystify EOL care.

(vi) Create a learning environment where it is easier to understand what did not work in the past. Create a feedback loop.

(vii) Need for best practice and more adequate resources.

(viii) Increase support for bereavement.

QUALITY:

(i) QoL should be prioritised.

(ii) Earlier preparation.

(iii) Palliative care needs to better deal with acute care. Plan for it on any ward, avoid families feeling guilty for not taking patients home, train the care staff to deal with thisand address the complexity of need vs education.

CULTURE SHIFT:

(i) Need for more iterative planning. The LaDW document needs to be a living document alongside the diagnosis and maximise the important things appropriately.

(ii) Address the dichotomous relationship between individual quality and consistency.

PERSON CENTRED OUTCOMES:

(i) Need to help patients better manage their own lives, to help them choose, have the flexibility to change and awareness of the different contexts in which they find themselves in e.g. shift from a community nurse to a district nurse and knowing who the lead is at all times.

(ii) Better understand what people want – ask more. Know that there are different answers at different stages as health deteriorates there are different needs (So ‘Right To Change Mind’).

(iii) Equity of access (consistent): a mapped out process detailing roles and responsibilities from home to hospital stay. Promote ‘Clumsy Solutions’ this is not a linear process.Individuals need to take some responsibility – equity of access.

(iv) Patient controlled system to build around the patient and not around the technology.

Question 3. 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:

(i) Flexibility and choice: whether a patient wants family/friend involvement orwants to stay at home. My choices are respected and needs addressed in a peaceful and swiftly manner. This could include whether or not to e.goperate,chemotherapy. Care at night.

(ii) Support for other activities – dogs/bills/house etc.

(iii) Open honest supportive conversations: everyone is confident talking about death and dying to ease preparation for death.

(iv) Do things right intuitively for patients. There is no right or wrong answer.

(v) Symptom free pain management

WELL SUPPORTED AND FULLY COMPETENT STAFF:

(i)Safe in the knowledge that the staff have the appropriate knowledge, skills and competencies to look after me and who listen. Confident that there is sufficient support in the workplace (training/quality/competence/consistency of professional carers and record of good practice).

(ii) A support team and care team that is competent, compassionate and dignified as well as being good communicators. Access to expertise. Openness about expectations.

(iii) A proxy decision maker, who links the work and who I can trust and, guidance through that process. This link worker will negotiate the patient through the processand address difficult conversations with the patient.

(iv) Staff that are able to provide options for family and who can deal with the repercussions of decisions of surroundings. Staff who can have informed discussions and so well trained.

(v) Support for staff / patients and family carers.

(vi) Get it right.

WELL RESOURCED HOSPITAL:

(i) Services to respond to what the patient wants and needs.

(ii) Time for the staff to have conversations with an identifiable lead vs task orientated approach.

INFORMATION SHARING:

(i) Conversations not lost > passed on and recorded.

RESEARCH:

(i) Qualitative surveys – VOICES.

(ii) 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

Question 4. 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 ?

1.ACCESS

COMMUNICATION:

(i) Who leads specialist palliative care and how this is communicated is often assumed and not in reality very well coordinated.

(ii) 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.

(iii) How to measure people’s experiences?

(iv) Need an advice mechanism that is national and recognises the different levels / tiers of need and is able to signpost the sources of help and integrates with NHS 24hr

(v) Needs to be more flexibility in workforce – resource?

(vi) Needs to be a whole system holistic approach.

LIMITED REACH:

(i) Need for better 24hr care and OOH 24 hours does not apply.

(ii) Need better options for ‘first port of call’.

(iii) Monitoring and assessing palliative care is a challenge.

(iv) Remove duplication of artificial geographic boundaries (32 Local Authorities and 14 territorial HB).

LACK OF UNDERSTANDING:

(i) Services are not meeting increased expectations: this includes young adults in transition.

(ii) Lack of agency for ethnic minorities: Need to better understand cultures.

(iii) In how to recognise risk.

2.QUALITY

APPROPRIATE EDUCATION AND TRAINING:

(i) Need for appropriate dying coping strategies to better deal with uncertainty.

(ii) Death and dying is a cumulative burden. There is avoidance due to overloading/ burnout.

(iii) National support and national leadership needed to enhance the performance of the workforce (to avoid the vagaries of territorial HB approach).

RESOURCES:

(i) Human and financial capital.

(ii) improve e-learning e.g. Learning disability learning packages.

(iii) Budget cuts which are not being replaced.

(iv) Cut costs by providing more inviting opportunities for newly qualified specialists.

(v) Underinvestment in childrens community nursing teams.

(vi) Overdependence on short-term funding

(vii) On workforce recruitment: professional working on a more effective way to attract more nurses into community

AWARENESS:

(i) There is a stigma toward palliative care. Patients don’t want to be put on the palliative care register.

(ii) People don’t understand professional roles.

Question 5. How can we support these improvements? (1) in access (2) in quality of care.

1.ACCESS

COMMUNICATION/REACH:

(i) A helpline with specific numbers could increase reach.

(ii) Opportunity for appropriate mapping to increase reach and access.

(iii) Could create a generic / converge a networked model to reveal the reality of access and demonstrate urban isolation.

(iv) Clarify roles of networks: leads, executives on boards.

(v) Recognise formal / informal care already being provided. Create a network for sharing.

(vi) Remote and rural access: professional boundaries are too rigid.

(vii) Identified care manager.

(viii) Need to better communicate palliative care options in layman terms from the first day of care. patient.co.uk (local staff supplement).

MODEL:

(i) Action > Implement > Monitor > Assess.

(ii) Map and measure when the patient enters the system. An iterative and therefore quantitative approach.

PERSON-CENTRED:

(i) Make care at home a priority. Skills, educate and provide resource to enable this.

(ii) Manage patients / staff expectations

(iii) Share the care between carers and patients.

RESOURCES:

(i) E-system like e-health to be used as a virtual hospice improving digital infrastructure.

(ii) Increase specialist access so patient doesn’t have to move from home.

(iii) To enable respite for carers and increase community resilience.

(iv) Improve role of volunteers who have support roles around reading / activities and meal times.

(v) Commission services to provide rights care needed. Make this person centred and make carers responsible for their own budget, spending on what they so choose.

INTEGRATION:

(i) Integrated Joint Boards: Strategic plans required. Get palliative and EOL care to patient as soon as possible.

(ii) Need a single point of contact and more H + SC Integration. This will require resources. The single point of contact can collect feedback.

2. QUALITY

COMMUNICATION:

(i) Bring people together to share stories and experiences, providing opportunities to learn best and worst practice at undergraduate level.

(ii) Feedback service: not just for complaints, encourage positive feedback, online feedback and gain experience from users of services.

(iii) Continue to raise the profile of palliative care.

(iv) introduce accountability and transparency mechanisms.

(v) Better communication with carers to recognise their needs.

(vi) Better explore the public views of EOL care (Crowdsourcing and utilising I.T.)

(vii) Share intelligence with other services

(viii) Shared I.T. infrastructure to share information. Utilise Yammer. Right person right time.

EDUCATION / TRAINING:

(i) To support a cultural and attitudinal shift.

(ii) 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.

(iii) To provide specialist palliative care at the right place and at the right time.

(iv) Specialist vs general care needs more balanced.

(v) Nurse and doctors need core training early as mandatory and ongoing. Continuous patient carer education.

(vi) Training must be prioritised.

(vii) Need for cross-learning and cross-training

(viii) GIRFEC integration.

(ix) Training for professionals for person-centred services especially relating to complex needs.

(x) Smarter data governance.

(xi) Educate people about sharing information choices e.g. if you don’t want to share, information might not get to where it is needed. Share information with city pharmacy to help manage conditions.

(xii) Recoignise deterioration.

(xiii) Training to realise staff morale and deal with when down.

MOMENTUM

(i) Drive lost from when LaDW was launched. Needs reinvigorated and put back on NHS agenda with sufficient resources to support this push.

(ii) Need for consistency.

RESOURCES:

(i) Need to use precious resources wisely.

(ii) To enable better resource focusing on identifying whether a patient requires palliative care.

(iii) To provide a befriending support service through church possible and local communities – utilise these resources.

(iv) To provide care for carers. Burnout and stress is a major issues needing addressed.

(v) More hospital beds increases access. The system is not working well and this is a question of resource here.

(vi) Care houses are the hospices of the future. Area for growth.

(vii) To improve patient dying in hospital

COLLABORATIVE / INTEGRATED SERVICE PROVISION:

(i) Need for more team working partnerships. E.g. the think tank model between Lanark and Lothian reflects good practice in Grampian so we don’t need to reinvent the wheel.

CULTURE:

(i) Core attitude is pivotal no matter how much education is available

(ii) Identifying spiritual distress

(iii) Crisis management vs pre-emptive to avert crises.

(iv) People perceive there to be barriers across the NHS hierarchy.

(v) Discuss things earlier, enabling maximum QoL, and include service users, patients, carers from an early point. Discuss in order to establish common threads.

(vi) Understand that time and medicine are commodities.

PATIENT CENTRED:

(i) Ownership: palliative care is the responsibility of everyone to provide excellent basic care but must be centred around the patients involved.

(ii) Expansion of choice required for place of care and death.

(iii) Patients only decide what is successful and unsuccessful.

(iv) Person specific not condition specific.

(v) Make it a personal choice whether or not to share information with others.

(vi) Post-bereavement assessment.

(vii) Initial conversation with patient to develop plan and scale.

(viii) Patient carer context experience

Question 5: Approaches to measuring palliative care?

(i) Designate responsibility to a person on each board

(ii) Quality vs quantity

(iii) Need to understand how to best capture a person and families experience

(iv) Need to have a measuring outcomes so as to better understand relationship satisfaction

(v) Single point of contact can collect feedback.

(vi) Outcomes focused - planning ahead options Plan A and B

(vii) A person with responsibility for measurement on each board

(viii) How to capture a person experience / families.

(ix) Map and measure when the patient enters the system.. an iterative and therefore quantitative approach.

(x) A generic form that you can quantitate in a rating 1-10 to measure experience of quality of care – quantify qualitative info

(xi) 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 e.g identification of the palliative patients and review of care of death.

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