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
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
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.
by Laura Dobie, Knowledge and Information Skills Specialist
In December 2017 some of our team went to Oban to learn about how partnership working and a focus on prevention and early intervention is having a positive impact on outcomes for frail older people.
The Oban multidisciplinary team
It is 20th December, and the meeting room at Lorn Medical Centre is packed with colleagues from across health, social care and the third sector. This is what it is like every Wednesday morning, except for the festive touch of the mince pies on the table. It is amazing to see the turnout for this frailty multidisciplinary team meeting, and to learn more about people’s backgrounds, and the skills and knowledge that they bring to the table.
The team meets every Wednesday morning to discuss patients with mild, moderate and severe frailty, and this work is bottom-up and clinician-led. The team is truly multidisciplinary, with representation from social care and the third sector: in addition to GPs, nurses, physiotherapists, occupational therapists, pharmacists and dietitians, a social worker, an exercise professional and the centre manager from North Argyll Carers Centre join the weekly meetings. The team are also supported by an administrative assistant and the practice manager, who runs the electronic frailty index (eFI) on the Vision system. They have also been looking at SPARRA and high health gain data.
The team reported that they get together every week to share information in this way because they find it valuable, not because they have been told to work in this way.
‘The hour spent is much more valuable time spent than the previous way of working where it could take you all week to get in touch with someone. Now you can have that face-to-face conversation and many issues are solved more quickly. It has prevented duplication of referrals and assessments.’
Derek Laidler, Physiotherapy Team Lead, gave us an overview of the Oban reablement project.
Reablement services in Oban are delivered by Healthy Options, a social enterprise. Healthy Options offer interventions for people who are pre-frail. People who are at risk are referred to Healthy Options, and the aim is to build resilience and support the person to prevent decline. The project was a response to funding constraints in primary care and the pressures of increasingly complex patients and an ageing population. It is a demand-reducing model, rather than capacity-increasing.
Healthy Options used to be very much based in Atlantis Leisure Centre. However, there are now classes in villages that people are able to attend. The support offered is both physical and social, and deals with the whole person. This collaboration with the third sector has been in place in the area for a number of years.
Staff use the eFI and the Edmonton Frail Scale to identify people with frailty and direct them towards appropriate support. 100 people have been identified through case finding, and people are referred into the project through clinician concern.
The Oban Living Well initiative is a mild frailty rehabilitation and reablement approach, and the Active and Independent Living Programme has been a driver for the programme.
Derek explained that most physiotherapy referrals are made at a crisis point, which is reactive, and that the benefits are not as long lasting as intervening at an earlier stage: if people go on an exercise programme to maintain the ability to walk 400m, they retain this ability for two and a half years, whereas the benefits of intervening at a later stage and helping people to regain the ability to transfer themselves from the toilet only last six to eight weeks.
The project staff consider that we should be intervening before people are on the Lifecurve, and have produced a list of activities above the Lifecurve, where people should be targeted with early interventions.
Healthy Options would intervene when people are struggling to run half a mile, or run to catch a bus, and physios would intervene when people are having difficulties climbing stairs and getting up from the floor. There is still a role for Healthy Options with very frail patients, but it is limited. However, they can make people who are mildly frail better.
Derek presented some case studies, which demonstrated how exercise programmes delivered by Healthy Options are reversing people’s frailty scores and improving their health and wellbeing. One older gentleman has regained the ability to take the bus independently and engage in social activities again, while an older lady who was afraid of falling now has increased confidence and improved gait and posture after completing a 12-week exercise programme and attending strength and balance classes.
Lianne McInally from the team visited a lady who had been though the programme recently. The lady had a one-to-one assessment by a specialist physiotherapist and support from an exercise instructor to complete a home exercise programme based on OTAGO. The lady reported that she had made improvements in her strength and balance and noted a difference getting in and out of her chair. She also reported increased confidence walking further distances, and has agreed to attend the local leisure exercise class now that she was more confident to go outdoors. A buddy system exists, whereby the individual is paired with someone else from the class. Motivation to attend classes can be poor, particularly when a person is not comfortable initiating conversation, and the buddy system appears to make a difference, encouraging people to attend.
Moderate frailty project
Pauline Jespersen, Advanced GP Nurse, described the moderate/severe frailty project, which is running from October 2017 to March 2018. It is being delivered by four GPs (three qualified GP trainers). The project lead is a district nurse, and a physio, OT and pharmacist are also involved in the project. So far they have scanned 80 patients.
Their referral pathway takes a whole-system approach:
- Edmonton frail scale score 0-5 – Healthy Options
- Edmonton 6-7 vulnerable, 8-9 mild frailty – physio, Lorn and Islands Hospital reablement team
- Edmonton 10-11 moderate frailty – Lorn Medical Centre.
The team are aware of all the options in the third sector and can pass on a referral, where appropriate. Their assessment form records people’s conditions, social circumstances and medication, and they are also using the DeJong Gierveld Loneliness Scale as part of the assessment process.
They have a meeting at 9am on a Wednesday, where they discuss the patients that were identified the week before. The frailty team then have a huddle to allocate work. The team double up to mentor staff and support them with enhanced assessment. Visits for enhanced assessment are an hour minimum.
In the afternoon they have a feedback huddle. In some cases they may need to do de-prescribing, and pharmacy assistants help to manage the change and take away old medication. They have been carrying out evaluation with patients and staff. There have been clinical and MDT tutorials, and nurses are doing formal educational modules. Oban has lost a lot of advanced nurses in recent years, so upskilling staff has been an important part of the project.
The process is as follows:
- Advanced clinical assessment
- Edmonton frail scale
- Polypharmacy review
- Loneliness questionnaire
- Checking ACP and DNACPR are in place
- MDT discussion of findings
Although the team have seen 80 patients so far, they reported that there have been a lot more than 80 contacts. The initial assessment that is conducted is accepted by everyone – they do not have different groups of professionals coming in and conducting their own assessments. Secondary care is involved in the management of moderate and severe frailty, and advanced nurses work across primary and secondary care. There is an emphasis on home care and avoiding hospital admission.
We then went on to visit Healthy Options to learn more about their work. This social enterprise clearly demonstrates how a community-owned resource can meet public health needs. In addition to supporting the reablement programme, they also support other initiatives within the community.
Roy Clunie, one of the directors, observed that there is a growing number of people with chronic conditions, and many of these people’s conditions could be managed or improved through a change to a healthy lifestyle.
Healthy Options was established by the community, and staff are drawn from the health, business, fitness and community sectors. A public health dietitian, Jacqualin Barron is seconded to them one day a week. Healthy Options, Atlantis Leisure Centre and health professionals all work in partnership. The Healthy Options staff are highly qualified, and are entitled to attend NHS training courses.
We went on a short walk from the Healthy Options offices to Atlantis Leisure Centre, where we were able to see some of their staff working with clients. One older gentleman was working on the treadmill and cross trainer in the gym, under the instruction of trainer Kirsty, while two ladies were doing a seated exercise class in the dance studio. All of them were very enthusiastic about the support that they were receiving, and the beneficial impact that it has had on their health.
Healthy Options have worked with Atlantis Leisure Centre to make the gym more welcoming for people who are not typical gym goers. The centre manager removed some of the exercise bikes from the gym to create more space and make it easier for people with a high BMI to use the facilities. The consultation process is co-produced, and people can choose the activities that interest them, whether this is swimming, classes or going on the rowing machine. They offer supervised gym sessions and a healthy living outreach programme at the MS Centre.
In addition to delivering a reablement programme and self-management support, Healthy Options is also working with vulnerable social housing tenants, and they have a part-time health liaison officer. They are also working with partners on a healthy village pilot in Taynuilt, with falls prevention, Healthy Options exercise and classes, tai chi and a self-management class.
An example to develop in other areas?
It is clear that the Oban frailty project’s prevention and early intervention approach is having a positive impact on people with frailty, helping them to maintain their independence and keep up with all the activities that they enjoy, from singing in the choir to walking football. By working together across the whole system in a genuine partnership, and involving a third sector partner that is able to offer tailored support for people in the early stages of frailty, Oban is meeting the challenges of population ageing head on, improving the health of its inhabitants, and supporting people to live as well as they can at home, for as long as they can.
I’ve been a registered nurse for 28 years, starting my career in Northern Ireland. I moved to community nursing in 1996. It was during this time I worked with Marie Curie Nursing Service in Northern Ireland.
I developed a passion for palliative care and worked mainly night-duty, caring for people in their homes and supporting their family.
This work prepared me for the expected loss when my mother died. As many people do, I helped care for her in her own home, where she died with her family around her in March 1999.
I saw first hand the support needed by different members of a grieving family, and what her death meant to them.
In 2001 we moved, with a young family, to South West Scotland and settled in a lovely farm over-looking the sea. I joined NHS Ayrshire & Arran and since then I’ve been supported to work and study caring for people with cancer and palliative care to degree and masters level.
Shortly after our move, my father died suddenly and unexpectedly. This opened up a different perspective on death, which I wasn’t as prepared for.
His death made me realise that there are different reactions to the ways in which people die, and the support needed in the weeks and months after is often different.
These experiences, and what I learned from them, remain with me.
I moved from clinical nursing to work on several palliative care projects improving palliative care in the community, including Gold Standards Framework in 2004 and more recently Macmillan Education Programme for upskilling generalists in palliative care in 2011.
A recent thesis study explored the knowledge and skills required by family members to look after someone who was palliative at home. This was another window into the support needed by families to use equipment, move people and general knowledge for managing medicines.
My interest remains in caring for the individual and their family during this distressing time, when people are often at their most vulnerable.
My aim is that the person can die peacefully in a place of their choosing, and their family will feel supported and cared for while caring for their loved one.
I’ll update you soon on the work I’ve been involved in around palliative beds in care homes.