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… More
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 email@example.com
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 would like to introduce myself as a new project officer for the Living Well in Communities team.
I will initially be assisting with establishing a programme of work LWiC are undertaking to support the health and social care partnerships in the North of Scotland.
This is an exciting new role for me in an established team, where I know I will be given the opportunity to learn lots and hopefully make a difference at the same time.
I have quite a varied work history, but one I think that has given me good experience and learning which I can bring to this role. I initially trained as a Physiotherapist and worked for a few years in NHS England in both acute and outpatient settings. This has given me a great insight into the challenges services and clinicians face on a day-to-day basis to support patients, their families and carers.
Having taken a break to explore the travel bug, I settled in Scotland where I have held office roles in both the private and third sector. For the last two and a half years I have been working in Healthcare Improvement Scotland’s ihub, initially as an administrative officer and then project officer for the Tailored and Responsive Improvement Support team. Here I have been largely responsible for managing the ihub associates framework agreement, and more recently working on the 90-day innovation cycle to explore quality management systems in health and social care in Scotland. I hope to be able to bring the valuable skills I have developed in these roles to my new position.
In the short time that I have been a member of the LWiC team, I have been struck by the enthusiasm and drive of the whole team, who have a multitude of varied skills and experiences behind them. There is a real passion for the work they undertake and an awareness that although there may be challenges ahead, by working together with our partners and communicating clearly these can be overcome.
I am incredibly excited to be a part of this team and to have the opportunity to make a difference and support people to live well for longer at home or in a homely setting.
If you have any questions please do get in touch.
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.