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… More
15 June 2015. That’s the day I became part of Healthcare Improvement Scotland.
What attracted me to work in Healthcare Improvement Scotland? I wanted to help people have better lives. People like my late sister, who due to her long list of mental and physical conditions spent the last few years of her life ping-ponging between hospital and home. She could barely live her life because the services that supported her, my family and I were so busy trying to keep her safe that we effectively stopped her from living. I don’t want anyone else to experience that. I want everyone, no matter their background, to have the same opportunity to have a better life. And that’s why I’m part of Healthcare Improvement Scotland, because I’m helping people have a better life.
As my third work anniversary approached I started reflecting about the roles I’ve had in the past, from teaching undergraduates during my biomedical studies to service improvement in a large social housing and care group. And I realised that working in Healthcare Improvement Scotland combines the best parts of all my previous roles. I have the methods and thought-provoking challenges of scientific research. The buzz from helping people put new skills into practice. And the heart-felt satisfaction of helping people have better lives. And that’s with the pleasure of working with like-minded people.
I started out at Healthcare Improvement Scotland as an Improvement Advisor. With the help and support of the team at Healthcare Improvement Scotland I developed my own skills and knowledge, growing my experience and confidence to enable me to develop with the organisation to become the team lead of Living Well in Communities. The team delivers a wide range of improvement programmes that work with health and social care organisations to help people have a better life at home, wherever that’s their family home or a care home.
There are many aspects to having a better life. One of them is avoiding time in hospital. Hospitals are great places to be when you need them, but many people have a similar experience to my late sister and have episodes where their lives are put on hold as they ping-pong in and out of hospital. But it’s not inevitable.
Helping people to live well in their community
The Living Well in Communities team have been working with services in over 20 health and social care partnerships (HSCPs) to find ways to improve support for people in the key population groups below to help them live well at home for longer.
We have been doing this by:
- testing ways to identify people in these groups before a crisis occurs leading to repeat hospital admissions,
- developing tools and approaches to help practitioners have a conversation with people at risk of crisis about what they want for their future, and
- implementing preventative models of care to support people live well in their community for longer.
Scaling up change across Scotland
Much of our early testing work, particularly around frailty, is now complete and we are about to offer all HSCPs support to change their local systems to help people to live well in their communities for longer. We have already started working with the ten HSCPs in the north of Scotland and we will soon be able to support the HSCPs in the east of Scotland.
To further enhance our work, we are seeking to appoint a new Improvement Advisor to join our dynamic and driven team of liked-minded individuals to offer support to the HSCPs in the west of Scotland.
Could that be you?
Join us and help change lives
You would be joining a great team with a mix of people from various sectors. Some of the team have traditional health backgrounds, but others have joined us from local authorities, the Mental Welfare Commission, third sector providers and even a national sports association. I value that diversity and we’d like to continue to invite applications from a wide range of backgrounds.
There are some essentials for joining the team. You need practical improvement skills that you have used to help professionals change the way they work by using structured methods to systematically drive improvement. Methods such as the IHI Model for Improvement, system thinking methods such as Lean, experience based co-design or even RADAR from the EFQM Excellence Model. Data skills are also incredibly useful, not just traditional quantitative data for run charts, but also using qualitative data to drive improvement.
Key to the success of this role is the ability to establish and maintain good relationships. You will need to form and manage excellent working relationships with the Health and Social Care services you serve throughout the west of Scotland. You will also need to work closely with the rest of the Living Well in Communities team, especially the National Clinical Leads, National Professional Leads and national partners who bring substantial health and social care subject matter expertise to our work.
As you will be leading regional improvement support, it is important that you have some practical experience managing large projects or programmes. Our regional work is more responsive to local needs than traditional national programmes, which means you need to be comfortable managing programmes that will change with local needs and often start with a lot of ambiguity.
And finally, what we need is a passionate leader. Someone who truly cares about helping people have better lives and can use that passion to inspire others to change. We need someone who can persuade others to break old habits and try something different. We need someone who is self-aware and is driven to continuously develop their own skills, experience and behaviours as they strive to improve the support they provide to HSCPs.
If you have these skills, the energy and drive to be part of the Living Well in Communities team, then we would love to hear from you.
Apply now at our website. If you’d like have an informal chat to a current Improvement Advisor about their experience in the role, then please email Nathan at firstname.lastname@example.org. You can also find more information about us on our website and on our blog.
If you join the team we’ll put your skills to good use to work with health and social care services to shape the care experience of tens of thousands of people. That won’t reverse my late sister’s experience, but it will help thousands of others to have better lives.
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:
Nathan Devereux shares his experience of being an Improvement Advisor in Living Well in Communities team.
Being an Improvement Advisor is an incredibly diverse role which constantly keeps me on my toes! I spend most of my time working with people to bring their ideas and creativity out so that everyone can work towards improving what they do.
Day-to-day that means supporting people to:
- understand their challenges and opportunities, by using their experience, data and evidence,
- generate ideas for doing things differently by facilitating workshops with teams, having one-to-one conversations, and, connecting teams from different parts of Scotland, and
- evaluate how those changes are tested and what the impacts are for people who require care and support.
As an Improvement Advisor I spend a lot of my time working with people to help improve what they do, whether that’s with service managers, frontline staff, or strategic leaders in health and social care partnerships. The time I spend can be looking how to improve identification of people with frailty, or sharing the learning from our programme nationally. So it’s important that you enjoy working with people, as the technical aspects of improvement can only result in positive change when used to help people change and improve what they do.
One of the biggest challenges, but also the most interesting part of the role of being an Improvement Advisor is the diversity and scope of the work. My job is to meet the needs of the organisations I work with and help them to improve. This broad focus can be overwhelming so you need to be able to use a combination of quality improvement and project management skills to understand the situation from the point of view of those you support and then plan and deliver a programme that will focus on achieving outcomes you and your partners want to deliver.
This is also why it’s really important to have a generic set of improvement skills, because the topic or area is determined by the priorities of the organisations I work with. For example, I can go from working with a health and social care partnership to improve how people with palliative care needs are identified and cared for, to advising organisations how to evaluate their intermediate care services.
I don’t think there is a standard route to becoming an Improvement Advisor. The broad set of skills needed means that you can transfer from so many backgrounds and professions.
I started my career working with political groups in a local authority in England before deciding to travel and work abroad, including teaching English in Korea. After relocating to Scotland I then joined Healthcare Improvement Scotland to undertake a number of project roles.
While working on a number of projects related to the assurance and improvement of care, I became increasingly interested in quality improvement itself. I therefore decided to complete online courses and took the opportunity to shadow colleagues who provide improvement advice directly to teams who deliver care and support. I wanted to test my new-found learning, so I used the improvement methods to improve my project work and also got involved in internal improvement projects. These experiences showed me that improvement was something I wanted to pursue, and that I had the generic skills that could be developed to work in improvement. After a little while I eventually secured a place on a formal quality improvement training programme and shortly after secured a post as an Associate Improvement Advisor.
This role enabled me to work directly with health and social care partnerships, using my expertise to improve service provision. I really focused on developing my quality improvement, project management, communication, and, crucially, leadership skills, so that I could become a more effective leader of change. A key part of that development was taking responsibility for national programmes, such as work that looked at how to plan services to meet the needs of a population group. After a couple years working as an Associate Improvement Advisor I then progressed to the Improvement Advisor role, and I have really enjoyed leading programmes, developing others in improvement, and experiencing even more subject matter areas.
Hopefully that gives you an idea of what it’s like to be an Improvement Advisor. It’s such a diverse role, so beyond skills and experience it’s really important that you have the right attitude for the role. The key things for me are that you are adaptable and genuinely open about your strengths and weaknesses. I’m always developing and think that will continue as I aim to improve how I meet the needs of the organisations I work with.
If this sounds like something you would enjoy then I’d recommend you submit an application, or get in touch to discuss more about the role! My email address is email@example.com.
For more information about the role or to apply please visit the Healthcare Improvement Scotland’s website.
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
We have recently published a resource that compares different tools that could be used to identify people who could benefit from a palliative care approach. This blog post gives an overview of the document and its features.
The benefits of early identification
Early identification of people who could benefit from a palliative approach to their care has many advantages. It can allow people to make informed choices about what medical treatments and care they would like to receive, or not receive, and to prioritise things that are important to them when length of life may be short, or when the presence of irreversible illness has altered life for that person.
Palliative care identification tools
It can be very difficult to recognise when someone is nearing the end of their life due to a chronic, progressive medical condition, frailty or old age. A number of tools are available to help identify individuals who could benefit from a palliative care approach at an earlier stage.
Comparing different tools – at a glance
We have designed a visual resource comprising a table and a decision tree (see below) to make it easier for Health and Social Care Partnerships to compare the key features of different identification tools, and to select the tools that are most appropriate for their contexts.
This resource is not intended to be a comprehensive literature review, but rather a visual comparison of some of the main identification tools that are currently used in Scotland. There are brief outlines of all of the tools featured in the comparison table and decision tree, together with links to some key research and further information on these tools.
We have focused on tools that were identified in a literature review by Maas et al, and discussions with palliative care clinicians in Scotland. Some have been validated and others have not. We have tried as far as possible to include information on the limitations of different tools.
You can access the palliative care identification tools comparator on the ihub website by clicking on the document image below:
Ask Glaswegians about palliative care and many would pay testament to the superb specialist hospices and palliative services within the city, and the care and support received at the end of a loved one’s life.
There are also a host of community staff; dedicated, experienced individuals working along-side specialist services to support the palliative and end of life needs of its population.
But palliative care is not just required at end of life. Many Glaswegians are living with long-term, life-limiting conditions which require on-going care and support within their own home.
Life expectancy in Glasgow is lower than the national average.
You are more likely to die from cancer, smoking-related diseases, heart disease or be hospitalised with COPD.
It’s vital we do all we can to identify those who would benefit from palliative care and ensure that support is available to allow them to live and die well.
My role is to support the testing of ways to improve how we do this, and help share the story of that improvement with others.
With support from Healthcare Improvement Scotland, I hope to work with colleagues and partners to evidence an improvement in identification of palliative care need and care co-ordination.
Glasgow has the largest care home population of any local authority in Scotland and some of the improvement work will focus on the residents of these homes.
The needs of this population are complex. Finding ways of listening to their preferences and supporting them to receive care in what for them is their home may be a challenge, but a worthwhile one.
I believe that improving identification of their needs and wishes, monitoring and planning for change and improving communication with the wider care team will support us to provide person-centred care in the correct setting.
Although care homes are a focus I would welcome any thoughts or ideas for improving identification or care co-ordination for any care group within the community. Please get in touch.