Introducing Maxine Jones


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

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:

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

My Perspective on the SPPC Annual Conference

Paul and MichellePaul Baughan and Michelle Church, Improvement Advisor, with the Living Well in Communities poster at the conference

by Paul Baughan, GP and National Clinical Lead for Palliative and End of Life Care, Healthcare Improvement Scotland

For some people, the Scottish Partnership for Palliative Care conference is an annual pilgrimage, resembling a school reunion where people involved in palliative care can come together and catch up with one another (whilst secretly hoping that they have not aged as much as that colleague from the north or west of Scotland that they have not seen for a couple of years!). The informal sharing of experiences, pressures and local initiatives is every bit as important as the diverse programme.

My aims for the day

I attended this year’s conference with a specific question about how I could use the learning to support our six palliative care test sites.  As joint clinical lead for palliative and end of life care with Healthcare Improvement Scotland, I am working with six health and social care partnerships (HSCPs) to support local improvement work around the early identification of those with palliative care needs and the co-ordination of their care.

We had the opportunity at the conference to display and discuss our poster, which outlines the approach and process which the test sites will undertake during their improvement work. There was great interest from the delegates regarding this work, which made me even more determined to use and apply learning from the day. Continue reading “My Perspective on the SPPC Annual Conference”

Introducing Sandra Campbell

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

I am absolutely delighted to have taken on the role of National Clinical Lead for Palliative and End of Life Care for Nursing.

Having been in post for a few weeks I’m now beginning to link in with key individuals in each of the Health Boards to truly represent nursing across Scotland, ensuring the nursing voice is fully heard on behalf of patients and those important to them.

My passion is communication and I believe fully in the human connection that we as nurses have with our patients.

Compassion is about the human experience of noticing, feeling and responding.

Delivering compassionate care has to be fundamental for all staff, and supporting nurses to be able to do this is one of my main goals.

Strategic Framework for Action

The Scottish Government is committed to working in partnership to support a range of improvements in the delivery of palliative and end of life care in Scotland. Continue reading “Introducing Sandra Campbell”

Introducing Michelle Church

Michelle Church
Michelle Church, Improvement Advisor for Palliative Care

Around 54,000 people die each year in Scotland, most following an illness. Four times as many are affected by the loss of a loved one.

How do we best support these people to live well, help manage conditions and give quality and meaning to their life as their health declines?

This is the question I ask myself, as the Improvement Advisor for Palliative Care within Living Well in Communities, and as a daughter who looked after her Mom during the last few months of her life.

I loved my Mom so very dearly, and I started grieving while still caring for her. It was a time I found incredibly difficult.

Mom wanted to stay home but the say of doctors and the power of the system dominated the decision-making around her care. It seemed to me you were either in the system (hospital) or out (on our own).

Her palliative journey was one of pain and crisis. As her main carer, I gradually became exhausted and, whilst we tried to treasure her final months, her last few days were chaotic and full of interventions rather than the peace and respect she so very much deserved.

Many things have changed since then. Continue reading “Introducing Michelle Church”

Scottish Partnership for Palliative Care Annual Conference: Realistic Palliative Care

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The Scottish Partnership for Palliative Care Annual Conference took place on 22nd September, at the Royal College of Surgeons in Edinburgh. In attendance, a range of people from palliative & end-of-life care and the health and social care sector (including of course Living Well in Communities).

This is a summary (and recording thanks to University of Glasgow’s End of Life team) of what went on during the day.

This year’s theme of Realistic Palliative Care was inspired by the CMO’s annual report: Realistic Medicine. The six point approach below is just as applicable to palliative care and quality of death.


Making the Case for Palliative Care in Times of Austerity
Professor Charles Normand, Professor of Health Policy and Management, University of Dublin

What do people want? Less hassle. It is bad enough to be dying.

  • Evaluation of palliative care is difficult and important, so better tools for assessing value and cost need to evolve. It’s impossible to have simple measures for complex activities with complex objectives.
  • Early interventions can reduce costs and improve care, particularly for those with complex needs.
  • Improving access when needed and reducing stress on informal carers are common themes stated in palliative care preferences.
  • Those requiring care often have different goals and priorities than their families and carers.

Continue reading “Scottish Partnership for Palliative Care Annual Conference: Realistic Palliative Care”