Reflecting on our palliative care work: thoughts from Sandra Campbell

 

Sandra presenting
Sandra presenting at our recent learning event on identification.

Our Nursing National Clinical Lead for Palliative and End of Life Care, Sandra Campbell, reflects on a year of supporting the Living Well in Communities palliative care work.

What a year! I have loved every minute! Unfortunately the secondment is only one day a week, but fortunately I am able to be flexible with time. I am certainly very grateful to my line manager in my substantive post as Nurse Consultant for Cancer and Palliative Care in NHS Forth Valley for that.

The main purpose of the clinical lead role is to support the Living Well in Communities Team within the ihub at Healthcare Improvement Scotland to deliver on Commitment 1 of the Strategic Framework for Action on Palliative and End of Life Care 2016-2021:

  • Identification of need
  • Coordination of care

The programme has six test sites across Scotland: Dundee, Glasgow City, Perth and Kinross, East Ayrshire, Fife, Western Isles, and Renfrewshire.

Reflecting back to April 2017, it was hard to imagine how these individual projects would evolve, but it has been amazing to see them unfold due to excellent local leadership within each of the Health and Social Care Partnerships, the guidance and support of assistance improvement advisors in each area and the support of the Living Well in Communities team.

Dr Paul Baughan and I, as clinical leads, have supported from a clinical advisory aspect. A Palliative Care Identification Tools Comparator resource has been developed and is available to support teams in understanding the various tools that can support the identification of palliative care. Paul has supported two webex education sessions, and I will be delivering a webex on the key principles in Caring for People in the Last Days of Life and how this relates to coordination of care.

The test sites will test some of these tools, which will inform wider learning across Scotland. This work will be developed further to inform a resource for care staff in care homes on how and when to use particular tools at different trigger points. Three events will share this learning: the first of which took place on the 31st May (and really saw the Strategic Framework for Action for Palliative and End of Life Care come to life) and a further two are planned for October 2018 and March 2019.

All of the work fits perfectly with the agenda in Realising Realistic Medicine, supporting anticipatory care planning that ultimately enables the right thing to be done at the right time, by the right person, to the right quality standard, with the right outcome.

What is needed is:

  • Good assessment and care planning
  • Good decision making
  • Good care
  • Good quality of life until death
  • Good death
  • Good bereavement

The opportunity for the test sites on the project is to try out different ways of working to improve care and make best use of resources available. Enhancing the generalist support is vital if we are to ensure as many people as possible can remain in their own homes as long as possible.

Other developments

New guidance to support Confirmation (previously verification) of Death will be available shortly from the Scottish Government.

Macmillan has supported projects within the test sites with funding of £120,000.

Macmillan and the Scottish Ambulance Service are in early conversations about developing a national project to improve end of life care and prevent inappropriate admission to hospital and reduce inappropriate CPR.

A key aspect of the clinical lead role is to engage with other stakeholders and we do this on an ongoing basis. People and organisations we have engaged with include:

I have also set up a nurse leads group – now reporting to the Scottish Government, SEND and SPPC. We have a practical work plan that includes bereavement. This group is about sharing best practice across all areas. Standardising care at end of life is helpful to teams and welcomed in the absence of a framework such as the Liverpool Care Pathway.

In caring for the dying patients and those close to them, it is important that staff provide care in accordance with the key principles, which I discussed in an earlier blog post.

You can follow Sandra on Twitter and contact her at 

sandra.campbell2@nhs.net

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Palliative and End of Life Care: Focus on Identification

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:

Anticipal and eFI electronic tools

FAST and PPP tools

PPS and SPAR Tools

SPICT4ALL and carers identification

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.

What did you likeTake home message

What next?

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.

Reflecting on our palliative care work: thoughts from Paul Baughan

Paul Baughan 2Dr 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.

Meet Rob Corrigan!

Rob square b&w

I have never been one for blogging or being photographed, I never enjoy being centre of attention for that matter! However in the interest of challenging myself and trying to improve, I fancy having a go at it, particularly given the excellent blog debut my colleague and fellow project officer Gemma Stewart recently produced.

I have been part of the Living Well in Communities (LWiC) team for over a year now. My current role is to provide project support to the palliative and end of life care workstream, which aims to support health and social care partnerships across Scotland to test improvements in the identification of people who could benefit from a palliative approach to their care, and care coordination.

I find this a hugely interesting and engaging workstream to work on. It’s an emotive subject, which is really helping me challenge and think through my ideas and perception of what palliative care is, and can be. To date my biggest learning point has been around the necessity of good conversations. Whether that is with a professional or a loved one.

Like Gemma I have a varied background, having studied social science at an undergraduate level, then criminology and criminal justice at a master’s level. My studies led me to a role in the third sector with Victim Support Scotland, in which I was part of the day-to-day running of the Edinburgh service. I then took up a role with Healthcare Improvement Scotland, working for a number of teams, including networks and knowledge exchange, and my current role with LWiC.

The LWiC team are a hard-working bunch, with a real commitment to providing a high quality of work that supports people to live at home or in a homely setting. We are always happy to answer any questions about our work – so please do get in touch.

 

Comparing tools that can help to identify people who could benefit from a palliative care approach

PC tools comparator cover

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.

PC tools table

Palliative care tools decision tree v0.7

 

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:

 

PC tools comparator cover

Introducing Maxine Jones

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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.

Improvement work

I’m working with Fife’s health and social care partnership to realise the Scottish Government’s vision, that by 2021 everyone who needs palliative care will have access to it.

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.

Palliative Care: From Diagnosis To Death

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.

Key points:

  • 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.

How to Live and Die Well a video for the public, patients and family carers

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.

Strictly Come Dying.PNG

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

 

 

Introducing Sharon Harrison

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Sharon Harrison, Associate Improvement Advisor for Palliative and End of Life Care

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.

Care Homes

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.

Introducing Josaleen Connolly

Josaleen Connolly-01
Josaleen Connolly, Quality Improvement Practitioner (Cancer, Palliative Care-Primary Care)

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.

In the meantime if you have any questions or are interested in finding out more about my work please get in touch, or follow @joseycolly on Twitter.

 

An update from Sandra Campbell

Sandra Campbell
Sandra Campbell, National Clinical Lead for Palliative and End of Life Care (Nursing)

My experiences

First of all I would like to say thank you to all the people who have got in touch with me in this new role as nursing national clinical lead for palliative care at Healthcare Improvement Scotland. Having conversations with like-minded colleagues is just great and, to me, the first step in working towards change and improvement. I am hoping that by engaging with as many teams as possible, I can learn about any particular issues and share best practice – please tell me about any good work going on, too! In providing palliative and end of life care we all have a common goal of getting it right for patients and those important to them at what can be a most difficult time, and we only get one chance to get it right.

In addition to working with six test sites in an advisory capacity, teams I have met to date include leads in NHS 24, Scottish Ambulance Service (SAS), Children’s Nurses, and Care Opinion, as well as teams within HIS and Scottish Government. All these conversations are about how we can ensure dignity at the end of life every time, such as through reducing the risk of inappropriate resuscitation attempts. Not surprisingly, it always comes back to the need for sensitive conversations earlier on in someone’s journey! It is essential that we support staff and teams to be able to have these conversations, which can be highly complex.

In July I attended a session at University College London Hospital recently on Talking DNACPR, and it was excellent. One thing I learned was the 5Ps model for sharing difficult information, based on work in St Christopher’s Hospice. Below is my adapted version:

P             Purpose               what is the purpose of this interaction?

P             People                  who should be there? The patient/family? Should I take a colleague?

P             Preparation        what do I need to know?

P             Process                how will I construct the conversation – should I use a model, e.g. SPIKES?

P             Product               what is the outcome I expect? E.g. a completed Anticipatory Care Plan or DNACPR form?

I think this could be used as a simple approach when teaching staff.  

Spotlight on the Four Principles

I mentioned the four principles from Caring for People in the Last Days and Hours of Life in my last blog post, and HIS have very kindly produced small cards that staff have can have in their pockets or use for teaching students, etc.

Please see below:

 

If you would like some, please contact: hcis.livingwell@nhs.net.

Compliance with these principles will also ensure excellent delivery of the fundamentals of nursing as advocated in the Nursing and Midwifery Council Code.