End of Life Care – Living Well in Communities blog

“ACP is not for me!”

Published on 19 March 2019 by Living Well In CommunitiesLeave a comment

paul baughan

“I don’t have time to do an ACP.”
“That document is too big.”
“GPs have enough work without this.”
“Someone else should be doing it.”

These are all comments which I have heard my GP colleagues say when the topic of Anticipatory Care Planning comes up. And if I’m honest, there have been occasions when similar thoughts have gone through my head. But Anticipatory Care Planning is so much more than any document or the needs of a particular professional group, and I have come to realise that it is a fundamental component of our work in general practice.

Some of the most rewarding consultations I have had, started with an exploration of ‘what matters most‘ to someone. Recognition of such priorities enables the most effective use to be made of limited consultation time. And often I am surprised that the most important aspect of someone’s care is not what I thought it was going to be.

Take for instance my patient John, who has significant heart disease and was frustrated about the poor control of his blood pressure. I could see John’s irritation and was determined to find a new combination of drugs that would work better than the last. Each switch to a different medication required more blood tests and close monitoring, and unfortunately many of these new drugs made John feel dizzy and light-headed.

One day John told me that his greatest pleasure in life was spending time with his grandchildren, and until recently he would drive them to and from school each day. Side effects from his medication were preventing this, which in turn caused John to feel stressed. Only by understanding his priorities were we able to make progress. He was willing to accept the risk of a slightly higher blood pressure if it meant he could safely drive his grandchildren and ‘feel useful’.

So, after discussion we stopped his medication, put the BP monitor to the side, and instead explored other aspects of his future care which were important to him. His Key Information Summary was updated to include his thoughts about cardiopulmonary resuscitation and he set about appointing a welfare power of attorney. John was able to start driving again and his levels of frustration reduced, as did his blood pressure!

ACP desktop Anticipatory Care Planning is not a one-off event. It is a process that starts with a conversation and which can develop and evolve over time. The beauty of general practice is that we have opportunities to initiate that conversation and contribute to the development of an ACP over weeks, months and sometimes years.

Professionals working in other parts of health or social care can also make a big contribution to ACP. Tools such as My ACP can support this process, and stimulate helpful discussions within families. There is still a challenge translating information from hospital clinic letters and My ACP onto the KIS. I welcome recent progress with the new national digital platform, which in time will allow a wider group of people to contribute to an electronic shared ACP.

So, ACP is not just for me. It is for all professional groups working across health and social care, and most importantly it is for the person, their family and carers.

Paul Baughan, GP, Dollar Health Centre, Clackmannanshire

For more information and resources relating to ACP visit the ACP toolkit.

Reflecting on our palliative care work: thoughts from Sandra Campbell

Published on 17 July 20189 November 2018 by Living Well In CommunitiesLeave a comment

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 31^st 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:

NHS Education for Scotland
Scottish Social Services Council
Scottish Government
Scottish Ambulance Service
Scottish Prison Service
Major charities, such as Macmillan and Marie Curie
The third sector
NHS24
NHS Inform
Scottish Partnership for Palliative Care (SPPC)
Scottish Care
Care Inspectorate

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

Palliative and End of Life Care: Focus on Identification

Published on 6 July 20189 November 2018 by Living Well In Communities2 Comments

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 like Take 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

Published on 20 June 20189 November 2018 by Living Well In CommunitiesLeave a comment

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.

There’s No Place Like Home: Living Well in Communities at the NHSScotland Event

Published on 23 June 201624 August 2016 by Living Well In CommunitiesLeave a comment

The Living Well in Communities team held two workshops at the NHSScotland Event, which took place at the SECC on 14th-15th June 2016. These sessions explored initiatives from Health and Social Care Partnerships across Scotland that are helping people to spend more time at home or a homely setting that would otherwise have been spent in hospital.

We’ve put together a Storify of the tweets from the sessions.

The sessions were chaired by Susanne Miller, Chief Officer for Strategy, Planning and Commissioning and Chief Social Work Officer for Glasgow City Health and Social Care Partnership. June Wylie, Head of Implementation and Improvement at Healthcare Improvement Scotland, introduced the Living Well in Communities portfolio and frontline speakers from across the different Living Well workstreams and related areas of work:

High Resource Individuals – Anne Palmer, Programme Manager, Connected Care, NHS Borders
Frailty and Falls – Rebekah Wilson, Ayrshire and Arran Falls Lead and Falls Community Connector.
Anticipatory Care Planning – Janette Barrie, Nationa Clinical Lead (Nursing) Anticipatory Care Planning, Healthcare Improvement Scotland
Housing – Maureen Cameron, Manager, Lochaber Care & Repair
Intermediate Care and Reablement – Lorna Dunipace (Day 1), Interim Head of Transformational Change (Older People), and Christine Ashcroft (Day 2), Service Manager, Glasgow City Health and Social Care Partnership
Palliative Care – Caroline Sime, Research Fellow University of the West of Scotland and Ardgowan Hospice

Here are some of the themes from the workshops: Continue reading “There’s No Place Like Home: Living Well in Communities at the NHSScotland Event” →

Other developments

Who are High Resource Individuals?