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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 tablePalliative care tools decision tree v0.6

 

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

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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.

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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

 

 

Fun for all ages: intergenerational work with Thomson Court Care Home and Apple Tree Nursery on Bute

“Let’s see what I can do to get it.”

Sadie, a resident at Thomson Court Care Home in Bute, is playing hoopla, and is determined to score. Sitting on either side of her are some children from the local nursery, cheering her on: “Go Sadie!”

This is just a normal Wednesday afternoon at Thomson Court, where the residents have regular visits from the children at nearby Apple Tree Nursery.

Inspired by the example of a care home in Canada that had co-located a staff nursery to increase resident contact with children, Unit Manager Sheila Scott wondered if there was the potential to do something similar at Thomson Court. Sheila had noticed that many residents in the home were not seeing their great-grandchildren on the mainland, and Appletree Nursery, where her daughter Stephanie works, is very proactive in working with the community.

Getting the ball rolling

The children first visited the care home in summer 2015, when they helped to paint the fence and planted sunflower and lettuce seeds. ‘Cameron’s Auntie Nan and her friend Sadie made sure that we painted it all,’ reads one of the quotations from the day. The initiative was such a success that it has led to a regular programme of indoor and outdoor activities between the care home residents and the children.

The nursery staff have compiled a floor plan with photographs and feedback from all their sessions, which map activities to health and wellbeing outcomes to demonstrate their beneficial impact. The care home also keeps its own activity records, although they are increasingly using the nursery’s Facebook page to share photographs from the sessions with families.

Looking back over the past couple of years, it is inspiring to see the breadth and variety of activities that have taken place in the care home: ‘dooking’ for apples at Halloween, music and movement sessions, baking and biscuit decorating, puppets and nursery rhymes, and a raspberry tea, to name but a few. At Christmas the children made gifts for the residents and table mats for their Christmas dinner, and Santa came to visit them all. The children have also made cards for the residents for Valentine’s Day and Mother’s Day, and there are plans for the residents to attend a concert at the nursery this Christmas.

Fundraising efforts

The nursery has also helped to raise money to pay for resources that support the residents’ wellbeing. They held a bake sale, which raised enough money to pay for a therapy doll for a resident who has dementia, and the children helped to choose the doll that was purchased. They also raised funds for a material cat and a pram, which are calming for residents.

Benefits for young and old alike

The nursery and care home staff have observed that the intergenerational activities are having a positive impact on both the residents and the nursery children. Sheila comments that the regular Wednesday sessions provide a good break for residents in the afternoon. The residents choose whether or not to attend, and one resident who initially was not interested in joining in the activities because he has a lot of family of his own living locally started to come along when he saw how much fun everyone was having! The daughter of one of the residents has commented that the children ‘generally light the place up’, and that both the residents and the children love it.

Lesley-Anne Lee, the nursery manager, observes that ‘our weekly visit to our Thomson friends has given children new experiences and emotions’ and they appreciate that the residents are teaching the children ‘maybe without them realising’. She also comments that ‘the bond between the vast age differences is a joy to see.’

The nursery children have forged close friendships with the residents, and one of the nursery pupils, Maisie, who has now moved up to primary school, formed a particularly close bond with Barbara, and enjoyed painting her fingernails. ‘Barbara is my friend, she’s my best girl,’ she said, and her father observed that ‘Maisie loves Thomson Court.’

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Learning about life

The regular visits have made the children more aware of disabilities, and helped them to learn about the whole of life, including its end. The children visited one of the residents’ rooms to look at old photographs and learn about what her life was like when she was younger, and they have also started a memory garden at the nursery to commemorate residents who have passed away.

Sheila comments that most of the residents have dementia, which affects their ability to communicate, and that the children help to bring them out of their shell. One resident, who previously did not talk very much, became very animated when the children visited.

After an hour packed with games, and a break for cake and juice, it is time for the children to head back to the nursery school. ‘I want to stay at Thomson Court because it’s so much fun,’ pipes up one of the children. Thanks to the hard work and commitment of the staff at both the nursery and the care home, it is easy to understand why they do not want to leave.

To find out more about the intergenerational work at Thomson Court, contact Sheila Scott, Unit Manager: Sheila.scott@argyll-bute.gov.uk

Tackling fuel poverty: how Home Energy Scotland supports older people with frailty

Advisor

by Ian Mountford, Communications Executive, Energy Saving Trust

The ihub Frailty and Falls Assessment and Intervention tool highlights a fuel poverty check as a key consideration when determining if someone is in a safe and suitable environment. Individuals experiencing fuel poverty often find it difficult to heat their home, and are worried about their fuel bills.

Support

If you have identified an individual who needs support, a good place to start is by speaking to Home Energy Scotland. Funded by the Scottish Government and delivered by the Energy Saving Trust, their network provides free, impartial advice to help older people with frailty to:

  • save energy;
  • reduce heating costs;
  • access nationwide or local energy efficiency schemes;
  • maximise their income; and
  • identify and access any support available from their energy supplier.

Some households have saved £1,000 a year, and others have qualified for free heating and insulation.

Online referral

Home Energy Scotland welcome referrals and partner with a number of organisations that make use of their easy-to-use online referral portal, where clients can be securely referred and useful feedback can be obtained on referral outcomes. More information on the referral portal can be found in this short video.

Their trained advisors are located in five centres across Scotland, and give advice over the phone or in person. In addition, their community liaison teams support partner organisations with a range of advice and resources.

HES Homecare Pilot

Householders in the Moray East and Annandale and Eskdale health and social care partnership areas can benefit from extra help through a pilot project called HES Homecare. HES Homecare Energycarers visit people whose health makes them vulnerable to cold-related illness, and work with Care and Repair and Warmworks to make those homes easier – and cheaper – to heat. Contact HESHomecare@est.org.uk for more information.

To find out more about how Home Energy Scotland can support older people experiencing fuel poverty, you can visit their website, contact Mark Macleod, Stakeholder Relations Officer, on 0131 555 9151 or email HES_Partnerships@est.org.uk.

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.

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”

Testing the eFI in Scotland: focus on Midlock GP practice

 

Some members of the Living Well in Communities and Midlock teams at the NHSScotland event

The Living Well in Communities team is working with Health and Social Care Partnerships in Glasgow City, West Dunbartonshire and Midlothian to test the electronic frailty index (eFI) to identify people over 65 who are living with frailty in the community. The Living Well in Communities team have developed an assets-based approach to support evidence-based interventions that are tailored to the individual. This article looks at the work to date with Midlock GP practice in Glasgow.

The testing in Midlock GP practice

The eFI uses GP read codes to calculate an individual’s degree of frailty and stratifies them into fit, mildly frail, moderately frail and severely frail. The tool has been validated in England. The purpose of testing at Midlock GP practice was to determine if the tool was accurate in a Scottish context. We have been working with a GP and other members of Glasgow City HSCP, including housing and the voluntary sector. The testing involved stratification of the GP population for frailty and reviewing case scenarios to determine if the eFI tool fits with a Scottish population. Continue reading “Testing the eFI in Scotland: focus on Midlock GP practice”

Updates from the Neighbourhood Care national partners meeting

On 27th June we held our latest national learning event on the neighbourhood care work being tested across the country.

With representation from Health and Social Care Partnerships and national organisations, the aim of the workshop was as much about exploring the challenges to developing this model of care as it was about sharing learning and increasing knowledge across Scotland.

After welcomes and introductions from Ruth Glassborow (Director of Improvement Support and ihub), Chris Bruce provided some background on how Scotland became involved in learning from the Buurtzorg model in the Netherlands, with an overview of the work so far.

buurtzorg onion model

All agencies and partners involved in developing local models – using the principles of Buurtzorg (and in the spirit of self-organisation) – have worked together to develop tests and start building a national learning community. Continue reading “Updates from the Neighbourhood Care national partners meeting”