On Monday 12 August 2019, we were joined at our offices in Edinburgh by members of the Care Inspectorate’s internal palliative and end of life care group. The purpose of the session was to explore… More
by Tim Warren, Policy Lead for Palliative and End of Life Care, Scottish Government
My mum lives eight hours away, within earshot of Glastonbury (if only her hearing was a little better). Her frailty is a pressing reality. All of the issues which press in at work – frail older people, most with a host of health issues, increasingly lacking capacity, exhausted family carers, stretched paid carers, the role of GPs, district nurses; it all feels very personal.
As the policy lead for palliative and end of life care at the Scottish Government, I frequently have to answer questions about what I do. I usually begin with how ignorant I was when I took on this role, when I mistakenly thought palliative care was basically about hospices and cancer. Of course, I now appreciate that the lion’s share of palliative care is about supporting frail older people like my mum.
When does care become palliative?
So, good care, provided to people at any stage of their care pathway, becomes palliative with hindsight when the person dies. Specialist palliative care, provided in any setting is clearly ‘palliative’. From this perspective, good care, provided in care homes, or by informal carers, supported by district nurses and GPs, and encompassing the spiritual, social and psycho-emotional and the physical, is also ‘palliative care’.
The strategic framework for action on palliative and end of life care (SFA) starts with support for identifying people who stand to benefit from a holistic palliative approach, highlights the importance of conversations with those people (and those who care about and for them), and then aims to provide coordinated care across all settings.
So, who might benefit from a palliative approach?
At what point does support for people with long term conditions become early palliative care? I have come to think about this in two ways. Firstly, thanks to Kirsty Boyd, consultant in palliative care at Royal Infirmary of Edinburgh, I possess the mental metaphor of “umbrella conversations” – conversations to be carried on, not just when it’s raining, but when it might rain. Such conversations might be initiated with a question like, “If you were to get more unwell, what would it be important for us to know about”. Not having these sorts of conversations early, and recording them in a sharable way, can rob people of care and dignity at the end of life. And, although the National Digital Service will in due course enable such information sharing, at the moment the only available mechanism for reliable sharing across settings is the Key Information Summary.
Secondly, another way of looking at who might benefit is by employing “20:20 hindsight”, and reviewing the profiles and care pathways of those who have died over the most recent available year. In 2017 almost 58,000 people died. Around 16,000 of those died suddenly. Of the remainder around 20,000 died with dementia. This gives an additional significance to having those conversations early.
Why early conversations matter
As a policy team we get to see the letters people send to ministers about the care their loved ones receive. One haunts me. It recounts the last months of the writer’s father’s life, in which he experienced increasing frailty, repeated hospital admissions and disjointed care (along with some examples of kind, warm and compassionate staff). He underwent several operations, repeated burst stoma-bags, unmanaged pain and broken promises of ‘fast-tracked care’. The family said it had seemed like a dreadful rollercoaster, which could have been prevented had they just had a realistic conversation about his likely trajectory, and what mattered to him.
Although not all care pathways are like those of this man, all of those who died expectedly should have benefited from conversations about what mattered to them. Paul Baughan, a GP and the Healthcare Improvement Scotland clinical lead for palliative care, led the development of a new palliative care Directed Enhanced Service, to provide some financial support for identifying those who may be moving towards death. (We worked together on the diagram below). It aims to increase the proportion of those with a KIS at the end of life, but especially people with frailty, who have more often been overlooked.
And it is brilliant to see a focus on ensuring that people in care homes get to benefit from this approach; the work in Edinburgh and Glasgow comes to mind. There is lots still to do, but the support of colleagues in primary care in doing this, and supporting them to do so feels like a key element in making sure that everyone gets the palliative care they need by 2021.
Thomas Monaghan, our Portfolio Lead, discusses our Living and Dying Well with Frailty Collaborative
People in Scotland are living longer than ever before, which is to be celebrated. This means that we all get to spend more time with our loved ones. However, people are not just living longer: they are living longer with more complex health needs and conditions, such as frailty. While we welcome spending more time with our loved ones, we also recognise that it can increase pressure on families, on carers and on our health and social care services to support people to have the best possible quality of life.
Improving care for people with frailty
Supporting people with frailty to have the best possible quality of life is becoming increasingly difficult, as there are growing numbers of older people in Scotland who need support: there will be 25% more people age 65 or over by 2029, and almost 80% more people age 75 or over by 2041.
If we want every older person in Scotland to have the best possible quality of life, then we need to start changing how we support people with frailty to live well in their community.
At Healthcare Improvement Scotland we want to help health and social care services to make changes so more people with frailty can have a better quality of life in their community. This will help to avoid crises that can lead to poor outcomes and increase pressure on families, carers and health and social care services.
We can do this by helping health and social care services to use evidence and quality improvement methods to:
- find people who are becoming frail before they reach crisis point
- have anticipatory care planning conversations with people with frailty to understand their wishes for future care, and
- work with a range of health, social care, third sector, independent sector and housing providers in local areas to support people with frailty to achieve what they want for their future.
Our Living and Dying Well with Frailty Collaborative
If you want to work with us to help people with frailty to have a better quality of life and reduce pressures on individuals and services, then get in touch. We can talk about how you could be part of our Living and Dying Well in Communities improvement collaborative.
Looking forward to hearing from you!
We have recently published a resource that reviews the evidence on continuity and care coordination in palliative and end of life care. This blog post gives an overview of the document and its features.
Why focus on care coordination?
Good care co-ordination can help to improve people’s quality of life, right up to the end of life.
The Living Well in Communities team has been working with test sites in Dundee, East Ayrshire, Fife, Glasgow City, and Renfrewshire Health and Social Care Partnerships to deliver Commitment 1 from the Scottish Government’s Strategic Framework for Action on Palliative and End of Life Care:
“We will support Healthcare Improvement Scotland in providing Health and Social Care Partnerships with expertise in testing and implementing improvements to identify those who can benefit from palliative and end of life care and in the co-ordination of their care.”
This work is coming to a close in March 2019.
Exploring the evidence on different approaches
Drawing on the priority practices outlined in the World Health Organization practice brief on continuity and co-ordination of care, we identified six key approaches to continuity and care co-ordination in palliative and end of life care:
- Early integrated palliative care
- Collaborative planning of care and shared decision making
- Case management for people with palliative and end of life care needs
- Intermediate palliative care at home
- Technology to support continuity and care coordination
- Building workforce capacity
Working with the Evidence and Evaluation for Improvement Team, we summarised the available systematic-review level evidence on these approaches.
Presenting the evidence visually
As with our Living Well in Communities with Frailty evidence review, we produced visual summaries for each of the approaches. These provide key information on the different approaches to care coordination, and an introduction to the more detailed evidence summaries. The visual summaries include
- a brief description of each approach,
- the rationale behind them,
- the potential benefits,
- brief commentary on the quality of the evidence, and
- links to further reading and examples of local good practice.
We hope that this document will provide a useful overview of the systematic review-level evidence on key approaches to care co-ordination in palliative and end of life care, and highlight the potential benefits of these approaches.
You can access the review, Continuity and Co-ordination in Palliative and End of Life Care: evidence for what works by clicking on the document image below:
A number of Palliative Care professionals who attended our Palliative and End of Life Care Delivery Group on 8th November kindly shared some insights into how to better understand care co-ordination. You can find out more by looking at the slides from the day here.
Sandra Campbell (National Clinical Lead) presented on the importance of timely, sensitive conversations. Conversations should begin at the point of need by whoever is identifying the need / transition. The Palliative Care Identification Tools Comparator can be used to allow people to make more informed choices about their care and treatments when they have an irreversible illness. Significant conversations happen at the right time, in the right place with the right person.
Deans Buchanan (Consultant in Palliative Medicine, Lead Clinician) spoke about Health Transitions in Human Stories. Stories are very important to how we understand and communicate with one another. Most patients’ stories will have been interrupted by their illness and this can affect their response to treatment. The A, B, C, and D approach of dignity conserving care (Attitude, Behaviour, Compassion and Dialogue) is one method being tested to remind practitioners about the importance of caring for their patient.
Heather Edwards (Dementia Consultant, Care Inspectorate) gave a good overview of Bereavement. Heather highlighted the importance of preparation for death and the value of the care home staff in supporting families. Bereavement can cause an emotional toll on the staff as well as families but it’s important that we also support them as they are also grieving having developed relationships with the residents and their families.
Lynne Carmichael (Respite & Response Team Manager, Ayrshire Hospice) presented on carers and the Carers Support Needs Assessment Tool (CSNAT). One of the first barriers is many carers do not recognise themselves as a carer and often put their own needs to the side to care for a loved one. The CSNAT tool helps provide support for family members and carers of those with a life limiting condition.
Jo Hockley (RN PhD, Usher Institute, University of Edinburgh) presented on Care Co-ordination and Care Homes. As the population of over 80’s increases, they are becoming increasingly frail and more dependent, resulting in increased pressures on healthcare professionals supporting care homes. The main issues are:
– Lack of recognising the dying
– Lack of healthcare support to palliative care
– Lack of support staff
More work will need to be done around linking care homes into the system. This will hopefully be aided by a similar study to the Teaching Nursing Home pilot whereby the public/professional perception of care homes change, encouraging a career pathway in care homes for health and social care professionals, to help increase the workforce and establish more community engagement in care of frail older people.
Richard Meade (Head of Policy and Public Affairs, Marie Curie Scotland) offered an insight in Looking Beyond 2021 and thinking about the future. As the population is living longer, more people will be diagnosed with multi-morbidities, including dementia, frailty and cancer, and will therefore require increased palliative care. This in turn will increase the pressures on every care setting, the workforce, resources and the way we deliver care, and we must act now.
Anne Finnucane (Research Lead, Marie Curie Hospice Edinburgh) presented on the Key Information Summary (KIS) and a recent study undertaken on those who died with an advanced progressive condition in 2017 with a KIS in place. A KIS is a shared electronic clinical summary used to guide urgent care in the community and emergency hospital admission. It helps to communicate key elements and preferences from the person’s Anticipatory Care Plan (ACP) to help with future care needs.
Ali Guthrie (Learning & Development Advisor) discussed Personal Outcomes: towards a Shared Understanding. A Personal outcomes approach is focusing on what is important to people in their lives. They often relate to maintaining or improving wellbeing and feature in the National Health and Wellbeing Outcomes in the new Health and Social Care Standards.
For further information, please contact a member of our team at email@example.com
On the 3rd October we held our latest Neighbourhood Care Steering Group at the Edinburgh Training & Conference Venue. There was great representation from the Neighbourhood Care test sites [including Western Isles, NHS Highland, Aberdeen City, Scottish Borders, Stirling & Clacks and Cornerstone] as well as national supportive partners [Scottish Government, Buurtzorg Britain & Ireland, SSSC, Care Inspectorate and NES].
The aim of the day was to openly discuss the challenges and support that National Partners and test sites can offer each other.
Defining our Measures
Thomas Monaghan (HIS) and Fee Hodgkiss (Scottish Government) revisited the vision set out in 2016 for Neighbourhood Care, in a letter from Scottish Government. Both discussed whether the principles are still relevant today, and what they mean in a Scottish context. They offered the opinion that as a set of principles, they were solid and aligned with the pillars of providing person-centred, ‘good, old-fashioned’ care. The group agreed that the principles still applied in a Scottish context and there was a general consensus that the principle of person-centred care was most important.
Logic Model-Measurement Mapping
The group were led through a cross mapping exercise carried out by the ihub team that links the original desired outcomes and impact of the programme’s logic model with the current measures being undertaken in local test sites.
The measures were themed into six categories:
- Person satisfaction/experience
- Staff satisfaction
- Procedural tasks
- Workforce structure
- Professional autonomy/self-management
The exercise highlighted that there may be areas of measurement that were not currently being recorded. Key to this part of the morning was to facilitate agreement on potential measures for Neighbourhood Care Teams at a national level, and the group discussed this and what measures could potentially ‘fill the gaps’ if necessary.
There was consensus within the group that the themes were good. The group also highlighted the need for “Third Sector/communities capacity building contribution” to be added as a 7th theme for measurement.
The group agreed that further discussion focussing on the measures within the document would be of benefit, and a small sub-group will be formed to carry this out. This group will meet and develop a set of common measures for all sites based on these (now seven) highlighted themes before the next steering group in November. If you have any suggestions, please get in touch with your local lead or contact firstname.lastname@example.org
Challenges and Support
The group was asked to reflect on the nine common themes of challenges that sites were reporting and were asked to consider opportunities for peer support and/or offers of support from national partners.
The group selected three themes and spent the remainder of the afternoon discussing these:
Number 4: Ability to empower teams to be self-managing
Number 2: Competing Priorities and Communicating
Number 7: Lack of platform / regular reporting structure
“Self-organising” came up as a key challenge being faced by the test sites. The group agreed there is potential for some rich learning that could be shared from Buurtzorg Britain and Ireland and Cornerstone’s approach and experience with this.
HIS will work alongside Britain Buurtzorg and Ireland and Cornerstone to develop a series of recorded WebExes that will provide further information on this (and other fundamental topics) and will share these on our website. Watch out for a programme of dates for these, which we’ll communicate soon.
Care Experience Tool
In order to support sites to measure ‘experience’ (versus satisfaction) a Care Experience Tool (developed in collaboration between the LWiC and Evidence and Indicators team within HIS) was shared in a draft form. The tool is a set of open questions that aim to explore compassionate care, and are directly related to the new Health and Social Care Standards. Aberdeen City, Stirling and Clackmannanshire and Cornerstone were interested in testing out the tool. It’s great that our public partners have agreed to support sites with this work.
The group also discussed the practical use of the tool and further training and development dates will be planned.
Having a platform for regular sharing/reporting
The Steering Group expressed that having the opportunity to meet, chat and share ideas, knowledge and offers of support is always extremely valuable. Steering groups only happen every 6-8 weeks, so the LWiC team agreed to set up a webpage for the group on the Knowledge Hub. This will be a platform for sites to share information around Neighbourhood Care in between meetings and will be open to all roles in all areas. We look forward to sharing more details around this in the future.
For any further information on any of the above, please feel free to contact one of the team:
We have recently published a resource that summarises the evidence for different community-based frailty interventions. This blog post gives an overview of the document and its features.
Why focus on frailty?
A person with frailty can experience serious adverse consequences following even a relatively minor illness. Its impact can be very significant in terms of consequent disability or admission to a nursing home.
If frailty is identified at an early stage and individuals are targeted with evidence-based interventions that can manage frailty, or reverse it, this can improve people’s quality of life and wellbeing. This reduces the likelihood that they will need to access unplanned services due to a crisis, which, in turn, reduces the use of expensive, unscheduled care.
The community-based interventions that can make a difference
The literature on frailty is vast. For the purposes of our resource we focused on interventions in frailty that are community-based, focused on the prevention of harms or poor outcomes, and supported by relatively high-level evidence. The Evidence and Evaluation for Improvement Team carried out literature searches and produced evidence summaries for the following topics:
- Exercise interventions and physical activity
- Polypharmacy review
- Primary care interventions
- Community geriatric services
- Lifestyle factors: physical activity diet, obesity, smoking alcohol and their relation to frailty
- Nutritional interventions for the prevention and treatment of frailty
- Hospital at home: admission prevention and early discharge
- Reablement (including rehabilitation)
- Bed-based intermediate care
- Anticipatory care planning
Making the evidence accessible
We then created visual abstracts for each topic, which allow readers to compare the different interventions at a glance, and provide a route into the more detailed evidence summaries and further reading. The visual abstracts include information on the potential benefits of each intervention, evidence quality, costs, and frailty level:
We hope that this document will help Health and Social Care Partnerships to compare different interventions for frailty and the evidence behind them, and to consider which interventions could make a difference for people with frailty in their local areas.
You can access the report, Living Well in Communities with Frailty: evidence for what works by clicking on the document image below:
Michelle Church, Improvement Advisor, reflects on our recent learning event, which explored ways of identifying people who could benefit from a palliative approach to their care.
On 31st May 2018, test site participants from six health and social care partnerships (HSCPs) and key delivery partners across Scotland joined the Living Well in Communities team to learn and share knowledge about tools that can support identification of people who could benefit from a palliative approach to their care.
Making the case for early identification
Kirsty Boyd, consultant and lecturer in Palliative Medicine, talked about the many benefits of earlier identification:
- Helps people say what matters to them.
- Increases the opportunity for people to participate in decision-making.
- Reduces the risk of later regrets and poor outcomes.
- Gives people time for planning ahead, resulting in fewer crises.
- Reduces unplanned admissions of low benefit.
- Encourages medication review and treatment planning.
- Improves continuity and coordination of care by sharing information.
How can we do earlier identification?
Our national clinical leads, Dr Paul Baughan and Sandra Campbell, gave an overview of the visual resource the LWiC team have developed to help compare different identification tools that are currently used in Scotland. Sandra did a before and after survey of how aware and confident participants were about the variety of tools.
How did we mobilise knowledge?
Experts from across the UK shared their tools, knowledge and experience of doing identification. People got the chance to participate in interactive workshops looking at the tools that a number of palliative care test sites. Some insights from the sessions are included below:
What did people think of the event?
People felt that they had learnt about why, when and how to use different tools to support identification and inform practice. People really liked that they had the chance to network with experts and colleagues.
Overwhelmingly, the take home message was that earlier identification and communication is key to supporting those who would benefit from a palliative approach to their care.
HSCP palliative care test sites are now using the comparator to consider what tools will benefit local people and services and how people identified can be supported. This work will contribute to the vision that by 2021 everyone who could benefit from palliative care will have access to it and will support the Realistic Medicine ambition of shared decision-making and a personalised approach to care.
Dr Paul Baughan, our palliative care GP clinical lead, discusses the benefits of early palliative care, highlights a resource that we’ve developed to compare different palliative care identification tools, and looks ahead to future work on care planning and care coordination.
Having worked within General Practice for over 20 years, I have seen the transition from hospital-based care to community care for a wide variety of clinical conditions and diseases. We look after many more people who are living with complex medical diagnoses well into their 80s, 90s and beyond. It can be difficult to identify when a palliative approach to care should be considered, and as a result we sometimes find ourselves on the back-foot, reacting to events and changes in clinical condition. Often, with the benefit of hindsight, it might have been possible to anticipate and plan for these episodes before they happen.
This is one of the reasons that I have enjoyed the opportunity to work with Healthcare Improvement Scotland and five test sites across Scotland (Dundee, East Ayrshire, Fife, Glasgow, and Perth and Kinross) to explore how we might identify people who could benefit from a palliative approach to their care at a much earlier stage.
Although a variety of different electronic and paper ‘tools’ have been developed by academics to help identify those who might benefit from a palliative approach to their care, it can be confusing to know which tool to use, and in which situation. Some are electronic, some are designed for particular diseases such as cancer or dementia, or for particular settings such as care homes. Some tools are intended for health professionals and some for the general population. I have therefore enjoyed working with the team in Healthcare Improvement Scotland to design a resource which will help health and social care professionals become more familiar with the different identification tools, and most importantly, decide which one suits them best. Our five test sites have chosen different identification tools to use within their local Health and Social Care Partnerships.
However, identifying those who might benefit from a palliative approach to their care is just the first step. It is the conversations that follow, between the health and social care professionals and the person, that are important. And then of course the care planning that results from these discussions. This is our next area of focus at Healthcare Improvement Scotland. We are now working with our test sites to explore how best to plan, coordinate and deliver care to those who are living with a progressive life-limiting condition.
This is an exciting phase of our work, as each test site is considering innovative and practical ways to provide this care within existing resources, and across health and social care. We will have the opportunity to share some of the learning from across Scotland in the Autumn, with the full outcomes from our test site projects available in 2019.
Back at my own general practice, my colleagues and I will continue to see an increase in the number of people with complex progressive life-limiting conditions in the years ahead. Therefore, the outcomes from the five test sites will be very relevant to the work that we do on a daily basis. We know that a proactive, multi-professional, care planning approach is required, and eagerly await advice from the test sites regarding how best to achieve this.
On 11 May 2018 we held our latest neighbourhood care learning network event at the Care Inspectorate Offices in Hamilton. The session was well -attended by representatives from the neighbourhood care test sites, national organisations and third sector organisations. The purpose of this meeting was to discuss neighbourhood care and regulation, with a focus on questions raised by the test sites before the meeting. We also took the opportunity to discuss measurement ideas and learn what plans were already in place for local evaluation.
Sharing learning from the test sites
After introductions, staff from each test site provided an update on the neighbourhood care work in their area. There has been a lot of activity across the test sites with positives discussed on this way of working, offers of support and an eagerness from sites to arrange visits to learn from one another. Common challenges faced by the sites include those around culture and shifting perceptions, but the passion for the concept and success stories continue to drive this work forwards and motivate the teams.
Care Inspectorate – from enforcers to enablers
Catherine Agnew from the Care Inspectorate gave an informative presentation about the role of the Care Inspectorate in supporting services as enablers of innovation, rather than the traditional perception of enforcing regulation. There is acknowledgement that services for the public are evolving with the integration of health and social care. In support of this, the Care Inspectorate have developed regulatory sandboxes, where normal regulatory requirements are waived to support innovation which has the potential for public benefit.
Attendees discussed the new health and social care standards in Scotland and were pleased to note that the principles of the Buurtzorg model mirror these standards (Dignity and respect; Compassion; Be included; Responsive care and support; Wellbeing).
We facilitated a group discussion on evaluation and undertook an exercise to look at measures, how important these are and how easy they are to use. Representatives from the test sites rated examples and entered them into a prioritisation tool, which could help the teams to look at work priorities and measurements in their areas. They highlighted difficulties with measuring face-to-face contact time, although this is an important measure to show effectiveness of this model and the test site representatives acknowledged that this is a measure that is important to care givers: ‘more time with the person needing care’.
They are aware that while test sites will have different measures and there will be local variation, there is a need to have some standardisation for comparisons. Evaluation should be meaningful in a local context for individuals, their carers and staff. However, an element of evaluation will be required for national interest to look at areas such as cost saving, avoiding hospital admissions and reducing length of stays, etc.
The King’s Fund has recently published a paper on transformational change in health and care in response to the growing pressures and demands on the health and care system. The paper highlights four case studies that have been recognised as successful transformation initiatives, led by staff that directly provide care and service users. One of these successful initiatives is the Buurtzorg Nederland model.
The test site representatives agreed to try a new approach to the learning network, with an option to move to the IHI model of a breakthrough series collaborative alongside action learning sets facilitated by the Scottish Social Services Council in the future. Once logistics have been further discussed, options will be presented to the group to take forward. Members of the group were happy to share their plans for evaluation with the Living Well in Communities (LWiC) team and there are steps to visit each site. Further information will be available soon.
I’ve had a long career in generalist primary care practice management, so stepping into a new role as Fife’s palliative care improvement advisor may have seemed at first like a leap into unfamiliar, specialist territory.
But, as one doctor said to me, palliative care is the bread and butter of primary care.
Both services share a deep-rooted holistic philosophy that deals with the emotional, social, practical and spiritual aspects of health and well-being, as well as the medical management of illness.
So, for me, a move to palliative care felt like a home coming.
Our aim is to innovate and improve the identification and care coordination for people who may benefit from palliative care.
What people want is support to live well, safely and for longer in their usual place of residence. What people want is to have quick and easy access to responsive services and trusted care providers when they need them. These principals are universal to both primary and palliative care.
Some of our improvement work will focus on developing palliative care in the community, with providers that people know well. This will extend identification beyond those with cancer. Anyone living with long term conditions and growing frailty would benefit from early palliative care.
But identification is only part of the story.
As important is the coordination of responsive, person-centered services. Services that are delivered through closer, enhanced multi-disciplinary team working. Services that are nearer to people. Services that are geared towards improving continuity between people and their care providers.
You’ll hear more about my work in the coming months. I’d be delighted to learn from your community palliative care initiatives, and to hear your suggestions for improving identification and coordination of palliative care.
Please do get in touch.
The Primary Palliative Care Research Group at the University of Edinburgh have produced a series of videos for people living with declining health and the friends, family members and professionals caring for them.
Early Palliative Care: a video for health and care professionals
This short video aims to help health and care professionals to identify people who are living with progressive illnesses better, to assess their needs in a timely manner and to start discussing and planning future care with them.
Early palliative care improves life’s quality, and in some cases may even prolong life. It promotes realistic medicine, an approach which puts the person receiving health and care at the centre of decision-making.
Clinicians, patients and families can all benefit from carefully integrating early palliative care with on-going treatment, so people can both live and die well.
The information in this video is based on detailed research with patients, families, doctors, nurses and other health and care professionals about people’s experiences living with declining health and dying. ‘Palliative Care from Diagnosis to Death‘ was published in February 2017 in the BMJ.
- Identify people early and introduce early, integrated palliative care
- Consider patients’ different dimensions of need at present, and discuss what matters most to them
- Discuss what happens in the different illness trajectories so they know when they might need the most help
- Make an individual anticipatory care plan with patients and families; document, communicate and review this regularly with all involved
There are accompanying notes and suggested discussion questions available here for anyone using the video for teaching purposes.
How to Live and Die Well: a video for the public, patients and family carers
This short video is for everyone. It’s for people who are well just now, but may get a serious illness or life-threatening condition in the future. For people who currently live with progressive illness. It’s also for family members and carers of those who are ill or may become ill, and who want to learn what can happen in the future so they can plan ahead.
The full video, as well as guidance notes and useful links is available here.
There is an extended version for facilitated group viewing and discussion available here.
Strictly Come Dying
This video discusses the different illness trajectories as though each were a dance with a particular tempo and complexity. Just as knowing the dance will help someone dance well, understanding typical physical and emotional sequences of various illnesses help people live and die well.
Our research group in Edinburgh has studied the last year of life in people dying of various illnesses. We found that people dying from different diseases experience dying differently, as each disease trajectory involves different experiences, needs, ups and downs.
Further reading: Palliative Care: From Diagnosis to Death
“I don’t have time to do an ACP.”
“That document is too big.”
“GPs have enough work without this.”
“Someone else should be doing it.”
These are all comments which I have heard my GP colleagues say when the topic of Anticipatory Care Planning comes up. And if I’m honest, there have been occasions when similar thoughts have gone through my head. But Anticipatory Care Planning is so much more than any document or the needs of a particular professional group, and I have come to realise that it is a fundamental component of our work in general practice.
Some of the most rewarding consultations I have had, started with an exploration of ‘what matters most‘ to someone. Recognition of such priorities enables the most effective use to be made of limited consultation time. And often I am surprised that the most important aspect of someone’s care is not what I thought it was going to be.
Take for instance my patient John, who has significant heart disease and was frustrated about the poor control of his blood pressure. I could see John’s irritation and was determined to find a new combination of drugs that would work better than the last. Each switch to a different medication required more blood tests and close monitoring, and unfortunately many of these new drugs made John feel dizzy and light-headed.
One day John told me that his greatest pleasure in life was spending time with his grandchildren, and until recently he would drive them to and from school each day. Side effects from his medication were preventing this, which in turn caused John to feel stressed. Only by understanding his priorities were we able to make progress. He was willing to accept the risk of a slightly higher blood pressure if it meant he could safely drive his grandchildren and ‘feel useful’.
So, after discussion we stopped his medication, put the BP monitor to the side, and instead explored other aspects of his future care which were important to him. His Key Information Summary was updated to include his thoughts about cardiopulmonary resuscitation and he set about appointing a welfare power of attorney. John was able to start driving again and his levels of frustration reduced, as did his blood pressure!
Anticipatory Care Planning is not a one-off event. It is a process that starts with a conversation and which can develop and evolve over time. The beauty of general practice is that we have opportunities to initiate that conversation and contribute to the development of an ACP over weeks, months and sometimes years.
Professionals working in other parts of health or social care can also make a big contribution to ACP. Tools such as My ACP can support this process, and stimulate helpful discussions within families. There is still a challenge translating information from hospital clinic letters and My ACP onto the KIS. I welcome recent progress with the new national digital platform, which in time will allow a wider group of people to contribute to an electronic shared ACP.
So, ACP is not just for me. It is for all professional groups working across health and social care, and most importantly it is for the person, their family and carers.
Paul Baughan, GP, Dollar Health Centre, Clackmannanshire
For more information and resources relating to ACP visit the ACP toolkit.
Our local Palliative & End of Life Care (PEOLC) test partners came together on 8th November 2018 to exchange knowledge and understand the success factors for care co-ordination. The morning session provided an opportunity for the five health and social care partnership test sites to share the improvements in care co-ordination that they have been taking forward locally. Each site has approached this challenge in a different way, working with different population groups, in different settings and with a variety of different interventions. However, the objective to improve the co-ordination of palliative and end of life care remains consistent across each area, with promising early outcomes now emerging from this work.
We have five main test sites involved in identifying those who would benefit from a palliative care approach:
- East Ayrshire
Experts from Marie Curie, Ayrshire Hospice, Care Inspectorate, University of Edinburgh and The Scottish Social Services Council (SSSC) were on hand to provide short stories and share current thinking to help with our understanding of Care co-ordination.
The afternoon was a World Café format – a world café is a simple, effective and flexible format for hosting large group dialogue. It provides an opportunity to exchange and share knowledge. Test site leads led the table discussion and answer any questions in relation to their site and Care Co-ordination.
“This was a great day, what an opportunity to have a day with space to network, think and create for the future”
“Everyone’s opinion counted”
“Open environment to discuss palliative care with professionals in different areas”
“Great opportunities to learn what is happening and being developed across Scotland and a chance to network and share ideas”
“Really valuable sharing and networking; very much stimulated ideas for us to test”
“Group discussions, listening to different ideas and realising that we are all wishing and working for the same outcome”
Key to good care co-ordination in PEOLC
Attendees tested out Mentimeter, a fun and interactive tool for presentations, to create a word cloud describing the key to good care co-ordination:
Closing comments from Paul and Sandra
Paul Baughan and Sandra Campbell (National Clinical Leads) provided some words from the day:
“There are many different components to good co-ordination of care at the end of life. This gathering allowed those testing new ways of working to meet and share their progress with like-minded individuals and experts in the field of palliative care. This knowledge exchange is mutually beneficial and has provided a renewed impetus for our five test sites to make progress with their change ideas.”
“It was an excellent day, with really engaging conversations and sharing of best practice… and great to hear about such good work across the country.”
Paul and Sandra are currently working on an evidence bundle for Care Co-ordination alongside the Evidence and Evaluation for Improvement Team (EEvIT), the first draft will be ready at the end of January. The evidence bundle will inform which interventions help people to die in their preferred place of death, which interventions help to decrease the percentage of hospital deaths, and the interventions that increase the percentage of deaths at home and in hospices.
For further information, please contact a member of our team at email@example.com
Our recent Neighbourhood Care Steering Group took place on 21st November at The Studio, Glasgow. This session focused on measurement and provided an opportunity for our test sites to update each other on their progress and any challenges encountered since our last meeting.
Care Experience Measurement
Our public partners, recently attended training on Care Experience, delivered by the Person Centred Care team in the hope that each public partner will link up with an active test site and assist them in capturing care experience in their local area. A further training session will happen in the New Year and those from the HSCP pilot sites are welcome to attend.
The group was shown an example of a “Care Experience Map” and asked if this would be helpful in developing one for each active site, with 1 or 2 patients being interviewed (Aberdeen City, Scottish Borders and NHS Highland). The Care Experience Maps would be used to capture the current care received from Neighbourhood Care teams, and could highlight opportunities for quality improvement work for local teams.
The Steering Group have previously expressed that they would like to have a platform to share information around Neighbourhood Care in between the Steering Group meetings. As a result, the Living Well in Communities (LWIC) team have created a Knowledge Hub site. It provides a chance for those interested in testing similar models to network and share ideas and will be open to all roles in all areas.
The LWiC team had brain stormed these folders and suggested some sub folders, as well as uploading a few examples of documents that sites may find useful to share. Everyone was invited to “test” out the page and offer suggestions that would help improve the page before it gets shared more widely with local test site teams. Sites were asked to feedback their suggestions to the LWiC team and nominate a member of their team as ‘administrator’ who will be responsible for updating and uploading documents to their site’s folder.
A small NC Measurement sub-group formed on the back of the last Steering Group and met to develop a set of common measures for all sites based on the 7 common themes of measurement:
- Customer satisfaction/experience
- Staff satisfaction
- Professional Autonomy
- Community impact
The steering group was briefed on the 10 suggested measures and asked if they would be both useful and easy for Neighbourhood Care teams to measure. Some of the measures included:
“The percentage of time spent by nurses and carers that:
is directly person facing time or Involves person centred activities”
“The average number of team/staff members visiting each person per day/per week”
“The percentage of attendees who join the regular team meetings that discuss and plan care/case load”
“Number of steps in a process that require approval to be sought [before a neighbourhood care team/control group and with a neighbourhood care team”? I.e. “How many barriers removed?”
All suggestions were useful and would be of particular interest to team members, but some may prove challenging to capture. Neighbourhood Care Test Sites will now test ways to capture some of these measures and have been asked to help define them more precisely.
For any further information on any of the above, please feel free to contact one of the team:
On the 22nd August the newly formed Steering Group met for the first time.
The steering group combines the Delivery Group (members of national organisations that support the Neighbourhood Care programme) with the Learning Network (project leads from the health and social care organisations that are testing the Neighbourhood Care principles (inspired by Buurtzorg). The steering group will meet every six to eight weeks and work in a Break Through Series Collaborative. By working in this way it’s hoped that there will be more opportunities for closer working, easier sharing and increased opportunities for support.
The 22nd was an opportunity for all members of the Steering Group to share their current progress, challenges and support required. You can read more about the day’s activities in our flash report. Please feel free to share this with your teams.
Our next Steering Group meeting is on 3rd October. Between now and then the LWiC team and National Partners will have met to discuss how best to plan the support that is required in order to assist local teams to develop their own local models of care to deliver the principles. This will be discussed further with the Steering Group on 3rd October.
Scottish Borders HSCP, Aberdeen City HSCP, Argyll & Bute HSCP and NHS Highland have live case loads and so will continue to be supported by Buurtzorg Britain and Ireland (previously Public World) and a plan of training events has been developed from now until the end of the year that is tailored to their needs.
As well as the Steering Group, the Scottish Social Services Council (SSSC) are supporting 10 individuals (including representation from HIS, Scottish Government, Care Inspectorate and Cornerstone) from the steering group in Action Learning Sets (ALS). ALS are a structured method of supportive coaching that helps the participants deliver outcomes that are important to them and the overall aim of the programme.
At the last steering group meeting test sites shared their current/planned measures that they will use to evidence their team’s improvements and outcomes. The LWiC team has collated this information and cross-mapped the measures to the original outcome framework/logic model. The next steering group meeting will provide an opportunity to discuss and define these measures in more detail, as well as discussing why sites have chosen these specific measures and whether there is an opportunity to develop a common set of measures between all sites.
We look forward to keeping you further informed after the next steering group meeting J
Our Nursing National Clinical Lead for Palliative and End of Life Care, Sandra Campbell, reflects on a year of supporting the Living Well in Communities palliative care work.
What a year! I have loved every minute! Unfortunately the secondment is only one day a week, but fortunately I am able to be flexible with time. I am certainly very grateful to my line manager in my substantive post as Nurse Consultant for Cancer and Palliative Care in NHS Forth Valley for that.
The main purpose of the clinical lead role is to support the Living Well in Communities Team within the ihub at Healthcare Improvement Scotland to deliver on Commitment 1 of the Strategic Framework for Action on Palliative and End of Life Care 2016-2021:
- Identification of need
- Coordination of care
The programme has six test sites across Scotland: Dundee, Glasgow City, Perth and Kinross, East Ayrshire, Fife, Western Isles, and Renfrewshire.
Reflecting back to April 2017, it was hard to imagine how these individual projects would evolve, but it has been amazing to see them unfold due to excellent local leadership within each of the Health and Social Care Partnerships, the guidance and support of assistance improvement advisors in each area and the support of the Living Well in Communities team.
Dr Paul Baughan and I, as clinical leads, have supported from a clinical advisory aspect. A Palliative Care Identification Tools Comparator resource has been developed and is available to support teams in understanding the various tools that can support the identification of palliative care. Paul has supported two webex education sessions, and I will be delivering a webex on the key principles in Caring for People in the Last Days of Life and how this relates to coordination of care.
The test sites will test some of these tools, which will inform wider learning across Scotland. This work will be developed further to inform a resource for care staff in care homes on how and when to use particular tools at different trigger points. Three events will share this learning: the first of which took place on the 31st May (and really saw the Strategic Framework for Action for Palliative and End of Life Care come to life) and a further two are planned for October 2018 and March 2019.
All of the work fits perfectly with the agenda in Realising Realistic Medicine, supporting anticipatory care planning that ultimately enables the right thing to be done at the right time, by the right person, to the right quality standard, with the right outcome.
What is needed is:
- Good assessment and care planning
- Good decision making
- Good care
- Good quality of life until death
- Good death
- Good bereavement
The opportunity for the test sites on the project is to try out different ways of working to improve care and make best use of resources available. Enhancing the generalist support is vital if we are to ensure as many people as possible can remain in their own homes as long as possible.
New guidance to support Confirmation (previously verification) of Death will be available shortly from the Scottish Government.
Macmillan has supported projects within the test sites with funding of £120,000.
Macmillan and the Scottish Ambulance Service are in early conversations about developing a national project to improve end of life care and prevent inappropriate admission to hospital and reduce inappropriate CPR.
A key aspect of the clinical lead role is to engage with other stakeholders and we do this on an ongoing basis. People and organisations we have engaged with include:
- NHS Education for Scotland
- Scottish Social Services Council
- Scottish Government
- Scottish Ambulance Service
- Scottish Prison Service
- Major charities, such as Macmillan and Marie Curie
- The third sector
- NHS Inform
- Scottish Partnership for Palliative Care (SPPC)
- Scottish Care
- Care Inspectorate
I have also set up a nurse leads group – now reporting to the Scottish Government, SEND and SPPC. We have a practical work plan that includes bereavement. This group is about sharing best practice across all areas. Standardising care at end of life is helpful to teams and welcomed in the absence of a framework such as the Liverpool Care Pathway.
In caring for the dying patients and those close to them, it is important that staff provide care in accordance with the key principles, which I discussed in an earlier blog post.
You can follow Sandra on Twitter and contact her at