Category: Palliative and End of Life Care

We are working with six Health and Social Care Partnerships HSCPs in East Ayrshire, Fife, Glasgow, Dundee, Perth and Kinross and the Western Isles. Each of these HSPCs has an associate improvement advisor in place who is working with local stakeholders to understand and map the provision of palliative care within their area. Each area will then choose an aspect of palliative and end of life care to focus on, and will undertake improvement work around the identification and co-ordination of care for the people within this group.

Benefits of the programme:
Most people say that they would like to be cared for at home when they reach the end of their life, yet only 21% actually die at home.
Investment in community-based palliative care services reduces time spent in hospital at the end of life and is likely to be cost effective. Supporting patients to live well during their final months has the potential to release resources that can be reinvested elsewhere. £104 million could be released for investment elsewhere if emergency admissions were reduced by 10 per cent and the average length of stay following admission was reduced by three days.

Living and Dying Well in Care Homes | Engagement and Scoping Workshop

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At the end of August 2019, we were joined by representatives from national and local organisations with a passion for good palliative and end of life care. They had come together to help us explore how we could make a positive difference to the palliative care received by people who lived in care homes.

We had a great turn out and mixture of representatives from organisations including (although not limited to):

logos

We were brilliantly supported with facilitation on the day by colleagues from the Care Inspectorate.

Background

During phase one of Living Well in Communities palliative and end of life care work we supported local testing to improve the identification and care coordination of people with palliative and end of life care needs. There have been some great learning and outputs from this work, in particular around the care home setting.  We are also aware of some of the wonderful resources and initiatives that exist, or are being developed and want to find out more about these and other areas of work.

We are currently in phase two of this work – scoping and understanding how we can take the learning from phase one, and from other areas of good practice, and spread them across Scotland. To achieve this we are exploring the potential of delivering an improvement collaborative. In an improvement collaborative we would work with staff, to understand the interventions/models of care that would help them to improve outcomes. Following this we would support them to: put these into practice, understand the difference they have made, embed and spread their learning.

At the moment we are seeking to understand the context, challenges and initiatives underway in care homes.  A key part of this is to explore how an improvement collaborative could work in practice. We recognise that it is important to be clear on our offer so that we can engage meaningfully with staff delivering care, residents, families, and carers (informal and formal).

You can find out further information about the background to this work on our website and by reading the blog post about our meeting with Care Inspectorate colleagues.

What have we found so far?

blog presentingPaul Baughan, GP and national clinical lead for palliative and end of life care, provided a great introduction to the workshop with an interactive ‘blockbusters’ presentation using data about care homes ( taken from the Scottish Care Home Census available from Information Services Division (ISD) website) to help set the scene and provide context for the workshop.

Following this we had good table top conversations on some of the themes that had emerged from engagements so far, getting feedback on what was important and was what was missing.  We are using this feedback, as well as other, to inform our work in phase two and will be looking to share this in the future.

Building the picture

The main focus of the workshop was a world café session, where attendees were asked to help us understand what we need to consider as we develop our approach and plan for this work. The topics and key points emerging were:

Stakeholder

Stakeholders 

There was a good discussion highlighting the broad range of staff and organisations contributing to the care and support of residents, in particular identifying:

  • It won’t be possible to engage with everyone so we need to be clear on focus of the work to help prioritise who we reach out to.
  • There is a need to promote the stories of the good palliative and end of life care people are having in care homes to dispel the negative perceptions around these areas.

languageLanguage

The group looked at some of the language used in relation to end of life care, with some interesting reflections on the subjective meaning to some of the terms. Some of the general reflections were:

  • Staff can be nervous about the associated language and what they are recording as “end of life” or “palliative”.
  • It is important to ensure that language is tailored to the audience and framed around the key things that is important to them.

ScopeScope

Attendees provided valuable insights into what should be in and out of scope for the proposed work, including consideration on settings, change ideas and what areas that should be scoped further. Other areas included:

  • The important role of the Health and Social Care standards in framing this work.
  • The need for targeted exploration to understand the issues faced by different care home providers and also understand the challenges being faced by the workforce.

help hinderWhat will help or hinder our success?

There were interesting discussions highlighting that certain elements could be seen as either helping or hindering depending on how they were interpreted and implemented. Some of the key points were:

  • The role of leadership in supporting this work and giving and sustaining permission (empowering) staff.
  • The need to ensure a balance of adapting and adopting good practice that is responsive to local need but does not lose the essence of what it’s about.

Good practice

Good practice 

We were keen to find out about other initiatives that were making a positive difference, some of those that were highlighted were:

  • Developing staff understanding and skills in relation to palliative and end of life care (MacMillan Foundation).
  • Utilising technology for learning and peer support (Project Echo, Strathcarron Hospice).
  • Use of dedicated care home link with Advanced Nurse Practitioners/ Nurse Practitioner/District Nurses (Aberdeen City, East Lothian, Fife, Glasgow City, Western isles HSCPs).
  • Providing training and utilising tools to assess and respond to an individual’s palliative care needs (Glasgow City HSCP).
  • Anticipatory Care Planning questions in care homes (City of Edinburgh HSCP).

What did people think about the workshop?

“Great chance to network and find out what is working well in care homes in other areas, good to hear different views and find out more about what other organisations do”

Feedback was positive, with attendees enjoying the opportunity to network with like-minded individuals with an interest in palliative and end of life care. The workshop was interactive and allowed attendees to hear about existing work underway in care homes. However, it was felt that there is a need to be clearer about the objectives and overall outcomes this work is looking to achieve, and to ensure that the experiences and voices of care home staff and residents were at the core of this work moving forward.

Next steps

It is important get this work right and we want to invest time we want to work with partners to understand how we can make a positive difference to the palliative and end of life care experienced by care home residents.

We are reviewing all of the outputs from the workshop and our engagements so far and will use these to help us refine our focus and approach. An important aspect will be using this  intelligence to help us meaningfully engage with the key groups and people, including care home staff, residents, families, and carers (informal and formal).

Finally, we’d like to share a big thank you from the Living Well in Communities team to everyone who attended and contributed to the workshop.

LWiC care home team

Please visit our website for further information https://ihub.scot/living-and-dying-well-in-care-homes/

Welcoming 21 Teams on our Collaborative

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Thomas Monaghan, our Portfolio Lead, announces the successful teams on our Living and Dying Well with Frailty Collaborative

We’ve got the key of the door, never been twenty-one before!

21!  What a magical number.

It was my age when I met my wife.  It’s the name of my favourite Adele album.  It’s the name of my favourite card game.

But 21 has a new meaning for me now as we now have 21 teams that are part of the Living and Dying Well with Frailty Collaborative.

21 teams from 19 Health and Social Care Partnerships (HSCP).

21 teams that include over 70 GP practices, but will grow over the next year to include even more practices.

21 teams from across Scotland working together to improve the outcomes for people with frailty who are living in our communities.

map with space 2HSCPs with teams in the collaborative:

Aberdeenshire
Angus
Argyll and Bute
Clackmannanshire and Stirling
Dumfries and Galloway
East Dunbartonshire
East Renfrewshire
Glasgow City
Highland
Inverclyde
Midlothian
North Ayrshire*
North Lanarkshire
Perth and Kinross*
Renfrewshire
South Ayrshire
South Lanarkshire
West Dunbartonshire
Western Isles

*indicates when there are two teams from the HSCP.

Living and Dying Well with Frailty Collaborative

Over the next year we will be working with the 21 teams to improve earlier identification, anticipatory care planning and shared decision-making, to ensure that people living with frailty get the support they need, at the right time, at the right place.

We will do this by helping teams to use tools, evidence and quality improvement methods to:

  • find people who are becoming frail before they reach crisis point using the eFrailty Index,
  • have anticipatory care planning conversations with people with frailty to understand their wishes for future care, and
  • work with a range of health, social care, third sector, independent sector and housing providers in local areas to support people with frailty to achieve what they want for their future.

We welcomed the 21 teams to the collaborative in August and our first Learning Session is in September. The Learning Session will be an opportunity for 21 teams to meet each other and share the work they have already done, learn improvement skills and come together as teams to plan their improvement projects.

The 21 teams have outlined excellent and innovative ideas for their local improvement and we can’t wait to work with them as they implement their ideas over the next year.

21 really is a magical number and together, we’ll change outcomes for people with frailty.

If you want to know more please visit our Living and Dying Well with Frailty webpages or follow us on Twitter. You can get in touch by emailing us at hcis.livingwell@nhs.net, calling us on 0131 314 1232 or tweeting us @LWiC_QI.

Living and Dying Well in Care Homes – meeting with the Care Inspectorate

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On Monday 12 August 2019, we were joined at our offices in Edinburgh by members of the Care Inspectorate’s internal palliative and end of life care group. The purpose of the session was to explore how the Living Well in Communities (LWiC) Team could work with the Care Inspectorate to improve palliative and end of life care for people living in a care home.

Why focus on a Living and Dying Well in Care Homes Collaborative?

There are 36000 people living in care homes across Scotland. In 2017 there were 11300 deaths of Care Home Residents. Ensuring that we get this care right for these people is important. (Data from the Scottish Care Home Census, available on the Information Services Division (ISD) website).

Between March 2017 and March 2019 LWiC delivered a programme of work in support of commitment 1 of the Scottish Government’s Strategic Framework for Action on Palliative and End of Life Care. This work highlighted how we could improve palliative and end of life care for residents, their families and people working in care homes.

For example, there was work taken forward by Riverside Care Home in Glasgow which saw the home using the SPAR tool to identify residents with palliative or end of life needs. This led to an increase in the residents with a jointly agreed care plan in place. These care plans help ensure that the wishes and needs of residents are met. From work elsewhere in Scotland we know there is a link between care plans that are shared using the Key Information Summary and being more likely to die outside of hospital. This is explored further in this article. We know that many people want to receive their care at home and this suggests that care planning is helping people have a better experience at end of life.

We would like to spread the learning from this work across Scotland so that other areas are able to benefit from the learning from this work. We think that an improvement collaborative would be an effective way of spreading improvement at scale across a range of areas. However to ensure that the collaborative would be successful we need to develop the content of the collaborative and make sure that there is an appetite for this approach.

To do this we need to engage with other national organisations, health and social care partnerships, care home staff, residents and their families and friends to establish how best to progress this work. We have identified that we must work in partnership with the Care Inspectorate. Hence why we held this meeting on the 12 August.

What did we talk about?

We had great conversations with our colleagues from the Care Inspectorate to share what have been doing so far, reflect on what we had heard and to discuss the scope of the collaborative. A particular issue that became apparent is our differing use of language and terminology, and we will certainly need to build a common understanding of this.

Everyone was really engaged in the session and we came away with some incredibly useful pointers and feedback. Most importantly we started to build some good relationships that will help us move forward with this work in collaboration.IMG_0452

Going forward

We are looking at how we can continue to work together so that we can harness everyone’s expertise. We also need to think about how we can work with care home providers, residents, their families and staff working in care homes.

Undoubtedly we have a lot more work ahead of us over the next year to engage, scope and develop our approach together with the Care Inspectorate.

Our next step is to hold a workshop with a small group of mostly national stakeholders to help us plan the next steps for this work. We aim to continue our conversations to explore how a collaborative, focused on palliative and end of life care in care homes, could make a positive difference to residents, their families and the staff who are delivering their care and support.

If you are interested in discussing this work, have any examples you would like to share, or would like to be kept updated, then please contact:  hcis.livingwell@nhs.net.

Please visit our website for further information https://ihub.scot/living-and-dying-well-in-care-homes/

Frailty, palliative care and me

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by Tim Warren, Policy Lead for Palliative and End of Life Care, Scottish Government

Tim's mumMy mum lives eight hours away, within earshot of Glastonbury (if only her hearing was a little better). Her frailty is a pressing reality. All of the issues which press in at work – frail older people, most with a host of health issues, increasingly lacking capacity, exhausted family carers, stretched paid carers, the role of GPs, district nurses; it all feels very personal.

As the policy lead for palliative and end of life care at the Scottish Government, I frequently have to answer questions about what I do. I usually begin with how ignorant I was when I took on this role, when I mistakenly thought palliative care was basically about hospices and cancer. Of course, I now appreciate that the lion’s share of palliative care is about supporting frail older people like my mum.

When does care become palliative?

So, good care, provided to people at any stage of their care pathway, becomes palliative with hindsight when the person dies. Specialist palliative care, provided in any setting is clearly ‘palliative’. From this perspective, good care, provided in care homes, or by informal carers, supported by district nurses and GPs, and encompassing the spiritual, social and psycho-emotional and the physical, is also ‘palliative care’.

The strategic framework for action on palliative and end of life care (SFA) starts with support for identifying people who stand to benefit from a holistic palliative approach, highlights the importance of conversations with those people (and those who care about and for them), and then aims to provide coordinated care across all settings.

So, who might benefit from a palliative approach?

At what point does support for people with long term conditions become early palliative care? I have come to think about this in two ways. Firstly, thanks to Kirsty Boyd, consultant in palliative care at Royal Infirmary of Edinburgh, I possess the mental metaphor of “umbrella conversations” – conversations to be carried on, not just when it’s raining, but when it might rain. Such conversations might be initiated with a question like, “If you were to get more unwell, what would it be important for us to know about”. Not having these sorts of conversations early, and recording them in a sharable way, can rob people of care and dignity at the end of life. And, although the National Digital Service will in due course enable such information sharing, at the moment the only available mechanism for reliable sharing across settings is the Key Information Summary.

Secondly, another way of looking at who might benefit is by employing “20:20 hindsight”, and reviewing the profiles and care pathways of those who have died over the most recent available year. In 2017 almost 58,000 people died. Around 16,000 of those died suddenly. Of the remainder around 20,000 died with dementia. This gives an additional significance to having those conversations early.

Why early conversations matter

As a policy team we get to see the letters people send to ministers about the care their loved ones receive. One haunts me. It recounts the last months of the writer’s father’s life, in which he experienced increasing frailty, repeated hospital admissions and disjointed care (along with some examples of kind, warm and compassionate staff). He underwent several operations, repeated burst stoma-bags, unmanaged pain and broken promises of ‘fast-tracked care’. The family said it had seemed like a dreadful rollercoaster, which could have been prevented had they just had a realistic conversation about his likely trajectory, and what mattered to him.

Although not all care pathways are like those of this man, all of those who died expectedly should have benefited from conversations about what mattered to them. Paul Baughan, a GP and the Healthcare Improvement Scotland clinical lead for palliative care, led the development of a new palliative care Directed Enhanced Service, to provide some financial support for identifying those who may be moving towards death. (We worked together on the diagram below). It aims to increase the proportion of those with a KIS at the end of life, but especially people with frailty, who have more often been overlooked.

des
Diagram of the Directed Enhanced Service

And it is brilliant to see a focus on ensuring that people in care homes get to benefit from this approach; the work in Edinburgh and Glasgow comes to mind. There is lots still to do, but the support of colleagues in primary care in doing this, and supporting them to do so feels like a key element in making sure that everyone gets the palliative care they need by 2021.

ACP in Care Homes

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Dr Andrew Mackay, ACP GP Advisor to the Edinburgh Health and Social Care Partnership ACP team.

“Definitely thinking back to those days where people were not thinking about these kinds of things. We were not always doing the right things for the residents, the appropriate things.” Care home staff member.

For the last year I have been working as part of a team to embed Anticipatory Care Planning (ACP) in 20 care homes across Edinburgh. Like the staff member above, many people involved in looking after care home residents appreciate that admission to hospital is not always what the resident wants when they are acutely ill. Some just really don`t want to go to hospital at all and others feel that their quality of life is now such that if they were seriously ill they would prefer to be kept in the home they know with treatment being provided there, even if that meant they couldn`t get all the possible treatments for their condition. We were keen to see whether training the care home staff in how to discuss ACP`s with their residents and how to use the completed ACPs in an emergency would reduce the number of avoidable admissions to hospital.

The care home staff immediately got it. They all want to provide high quality person centered care and they hate to see residents ending up in hospital when it is unlikely to help them. When this did happen many staff felt as if they had somehow failed their residents. What is more, many of them were already having conversations about the future, but they found them difficult at times and didn’t know how to use this information in the best way. The GPs were also delighted to get some help with gathering the information they needed to create a high quality ACP. They all wanted to do their best but had been overwhelmed with the time needed to do it properly. The idea that the person having a ‘good conversation’ with residents or relatives with someone that knew them well seemed obvious to everyone. In most situations that person was a member of the care staff.

The staff were really positive about the tools we showed them that together comprise the ‘7 Steps to ACP for Care Homes’. They were brief, simple and included lots of explanation. Although anxieties still remained. Much of the time people arrive in care homes from hospital, where they have been pretty unwell. They and their relatives are going through a huge readjustment. Trying to figure out the present is a challenge and thinking about how to direct future care seems impossible to some when they are new to the home. For some, even when the initial dust has settled conversations about their or their relative`s plans for the future are still not easy. I have been having these conversations with care home residents and their relatives for years and sometimes I still don`t get it right.  Our trainer was able to work with staff to help with this. It can be really useful to have a few phrases you are comfortable with to help introduce the subject and to be able to back that up with some written explanation.

Getting the GPs on board was also pretty straightforward. They saw immediately the logic of the system we offered and we were also able to help train some of their admin staff to take on the basic data entry. As one practice manager said to us: “If it is an admin task that needs to be done, please don’t ask the GPs to do it. Our team does it much better!”.

So, the questionnaires were completed and passed to the GP, the ACPs were entered as special notes in the residents Key Information Summary (KIS), that form was printed and returned to the care home. The next big challenge was using the ACPs in an emergency. Whenever a resident becomes suddenly acutely unwell it is scary for those looking after them. Particularly when we started, some staff would feel better calling for an ambulance. Through work with our trainer they became confident in using the ACP to guide their actions and to help guide the actions of out-of-hours doctors and ambulance crews. It was really useful for the staff that we helped them complete reflective logs of each of the acute events and then met with them to discuss all the episodes every 6-7 weeks. It was a happy coincidence that many nurses needed to complete reflective logs for revalidation so were keen to do it with our help.

 

phase 3 care home rectangle clip with logos 0 1 (2)

Care home staff are busy people and I often worried that they would struggle with what was, in some ways, extra work. So it was wonderful at our recent end of program celebration to see so much enthusiasm from the staff about ACP. Person after person thought that this process had helped them deliver far better care for their residents. It was heartening to be able to share with them that there had been a 32% reduction in potentially avoidable admissions to hospital from their homes over the first ten months of the programme. However, I was even more pleased to see just how positive they were. It gave me a lot of hope for the future. Talking of the future, I now really hope we can sustain them. Some care homes have up to 30% turnover of staff so the effect of other programs has faded over a few years. We have tried to address this by recruiting several `ACP Champions` in each home and training them to carry the message onwards. We’re also developing an implementation package to support the ‘7 steps’ toolkit with training material, videos, leaflets etc.

“…ACP is a very good programme for us to do our job as expected from us” (Care home deputy manager).

“The ACP pathway helped. It helped tremendously. I don’t think we would get anywhere without using it. Explaining each stage more fully to the resident, and he understood why we were asking. He said it was a relief and a comfort to talk about it.”  (Care home champion)

“I find that staff are initially shocked that someone might not want to go into hospital for treatment and might want to be kept comfortable in the care home. It’s been really important in providing us with confidence to speak about what people’s wishes are if they become really unwell.” (Care home champion)

“If you want to enhance your practice you have to buy-in to this process. We are supporting person-centred care and this supports us from the very beginning. They’re telling us what they want and we are here to facilitate that.” (Care home manager).

Long may it continue and let`s spread the word.

Written on behalf of the Edinburgh Health and Social Care Partnership’s Long Term Conditions Programme ACP team.

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

“ACP is not for me!”

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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 desktopAnticipatory 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.

What works in care co-ordination in palliative and end of life care

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PEOLC evidence bundle coverWe have recently published a resource that reviews the evidence on continuity and care coordination in palliative and end of life care. This blog post gives an overview of the document and its features.

Why focus on care coordination?

Good care co-ordination can help to improve people’s quality of life, right up to the end of life.

The Living Well in Communities team has been working with test sites in Dundee, East Ayrshire, Fife, Glasgow City, and Renfrewshire Health and Social Care Partnerships to deliver Commitment 1 from the Scottish Government’s Strategic Framework for Action on Palliative and End of Life Care:

“We will support Healthcare Improvement Scotland in providing Health and Social Care Partnerships with expertise in testing and implementing improvements to identify those who can benefit from palliative and end of life care and in the co-ordination of their care.”

This work is coming to a close in March 2019.

Exploring the evidence on different approaches

Drawing on the priority practices outlined in the World Health Organization practice brief on continuity and co-ordination of care, we identified six key approaches to continuity and care co-ordination in palliative and end of life care:

  • Early integrated palliative care
  • Collaborative planning of care and shared decision making
  • Case management for people with palliative and end of life care needs
  • Intermediate palliative care at home
  • Technology to support continuity and care coordination
  • Building workforce capacity

Working with the Evidence and Evaluation for Improvement Team, we summarised the available systematic-review level evidence on these approaches.

Presenting the evidence visually

As with our Living Well in Communities with Frailty evidence review, we produced visual summaries for each of the approaches. These provide key information on the different approaches to care coordination, and an introduction to the more detailed evidence summaries. The visual summaries include

  • a brief description of each approach,
  • the rationale behind them,
  • the potential benefits,
  • enablers,
  • brief commentary on the quality of the evidence, and
  • links to further reading and examples of local good practice.

 

Visual summary
Early integrated palliative care visual summary
Case mgmt summary
Case management evidence summary

 

We hope that this document will provide a useful overview of the systematic review-level evidence on key approaches to care co-ordination in palliative and end of life care, and highlight the potential benefits of these approaches.

You can access the review, Continuity and Co-ordination in Palliative and End of Life Care: evidence for what works by clicking on the document image below:

PEOLC evidence bundle cover

 

Care Co-ordination Short Stories

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A number of Palliative Care professionals who attended our Palliative and End of Life Care Delivery Group on 8th November kindly shared some insights into how to better understand care co-ordination. You can find out more by looking at the slides from the day here.

Sandra Campbell (National Clinical Lead) presented on the importance of timely, sandrasensitive conversations. Conversations should begin at the point of need by whoever is identifying the need / transition. The Palliative Care Identification Tools Comparator can be used to allow people to make more informed choices about their care and treatments when they have an irreversible illness. Significant conversations happen at the right time, in the right place with the right person.
deans.jpgDeans Buchanan (Consultant in Palliative Medicine, Lead Clinician) spoke about Health Transitions in Human Stories. Stories are very important to how we understand and communicate with one another. Most patients’ stories will have been interrupted by their illness and this can affect their response to treatment. The A, B, C, and D approach of dignity conserving care (Attitude, Behaviour, Compassion and Dialogue) is one method being tested to remind practitioners about the importance of caring for their patient.

Heather Edwards (Dementia Consultant, Care Inspectorate) gave a good overview of Bereavement. Heather highlighted the importance of preparation for death and the value of the care home staff in supporting families. Bereavement can cause an emotional toll on the staff as well as families but it’s important that we also support them as they are also grieving having developed relationships with the residents and their families.

Lynne Carmichael (Respite & Response Team Manager, Ayrshire Hospice) presented on carers and the Carers Support Needs Assessment Tool (CSNAT). One of the first barriers is many carers do not recognise themselves as a carer and often put their own needs to the side to care for a loved one. The CSNAT tool helps provide support for family members and carers of those with a life limiting condition.

lynne

Jo Hockley (RN PhD, Usher Institute, University of Edinburgh) presented on Care Co-joordination and Care Homes. As the population of over 80’s increases, they are becoming increasingly frail and more dependent, resulting in increased pressures on healthcare professionals supporting care homes. The main issues are:

– Lack of recognising the dying
– Lack of healthcare support to palliative care
– Lack of support staff

More work will need to be done around linking care homes into the system. This will hopefully be aided by a similar study to the Teaching Nursing Home pilot whereby the public/professional perception of care homes change, encouraging a career pathway in care homes for health and social care professionals, to help increase the workforce and establish more community engagement in care of frail older people.

marie cureRichard Meade (Head of Policy and Public Affairs, Marie Curie Scotland) offered an insight in Looking Beyond 2021 and thinking about the future. As the population is living longer, more people will be diagnosed with multi-morbidities, including dementia, frailty and cancer, and will therefore require increased palliative care. This in turn will increase the pressures on every care setting, the workforce, resources and the way we deliver care, and we must act now.

Anne Finnucane (Research Lead, Marie Curie Hospice Edinburgh) presented on the Key anneInformation Summary (KIS) and a recent study undertaken on those who died with an advanced progressive condition in 2017 with a KIS in place. A KIS is a shared electronic clinical summary used to guide urgent care in the community and emergency hospital admission. It helps to communicate key elements and preferences from the person’s Anticipatory Care Plan (ACP) to help with future care needs.

 

AliAli Guthrie (Learning & Development Advisor) discussed Personal Outcomes: towards a Shared Understanding. A Personal outcomes approach is focusing on what is important to people in their lives. They often relate to maintaining or improving wellbeing and feature in the National Health and Wellbeing Outcomes in the new Health and Social Care Standards.

 

For further information, please contact a member of our team at hcis.livingwell@nhs.net

Follow us on Twitter:@LWIC_QI, @turnersara99 @paulbaughan, @sandracampbellc65402031

Understanding the success factors in Care Co-ordination

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Our local Palliative & End of Life Care (PEOLC) test partners came together on 8th November 2018 to exchange knowledge and understand the success factors for care co-ordination. The morning session provided an opportunity for the five health and social care partnership test sites to share the improvements in care co-ordination that they have been taking forward locally. Each site has approached this challenge in a different way, working with different population groups, in different settings and with a variety of different interventions.  However, the objective to improve the co-ordination of palliative and end of life care remains consistent across each area, with promising early outcomes now emerging from this work.

map

 

Test Sites

We have five main test sites involved in identifying those who would benefit from a palliative care approach:

  • Dundee
  • Fife
  • East Ayrshire
  • Renfrewshire
  • Glasgow

 

Experts from Marie Curie, Ayrshire Hospice, Care Inspectorate, University of Edinburgh and The Scottish Social Services Council (SSSC) were on hand to provide short stories and share current thinking to help with our understanding of Care co-ordination.

whos here today

 

The afternoon was a World Café format – a world café is a simple, effective and flexible format for hosting large group dialogue. It provides an opportunity to exchange and share knowledge. Test site leads led the table discussion and answer any questions in relation to their site and Care Co-ordination.

world caFE

Evaluation Comments

“This was a great day, what an opportunity to have a day with space to network, think and create for the future”

“Everyone’s opinion counted”

“Open environment to discuss palliative care with professionals in different areas”

“Rich conversations”

“Great opportunities to learn what is happening and being developed across Scotland and a chance to network and share ideas”

“Really valuable sharing and networking; very much stimulated ideas for us to test”

“Group discussions, listening to different ideas and realising that we are all wishing and working for the same outcome”

 

Key to good care co-ordination in PEOLC

Attendees tested out Mentimeter, a fun and interactive tool for presentations, to create a word cloud describing the key to good care co-ordination:

mentimeter

Closing comments from Paul and Sandra

Paul Baughan and Sandra Campbell (National Clinical Leads) provided some words from the day:

“There are many different components to good co-ordination of care at the end of life.   This gathering allowed those testing new ways of working to meet and share their progress with like-minded individuals and experts in the field of palliative care.  This knowledge exchange is mutually beneficial and has provided a renewed impetus for our five test sites to make progress with their change ideas.”

“It was an excellent day, with really engaging conversations and sharing of best practice… and great to hear about such good work across the country.”

Next Steps

Paul and Sandra are currently working on an evidence bundle for Care Co-ordination alongside the Evidence and Evaluation for Improvement Team (EEvIT), the first draft will be ready at the end of January. The evidence bundle will inform which interventions help people to die in their preferred place of death, which interventions help to decrease the percentage of hospital deaths, and the interventions that increase the percentage of deaths at home and in hospices.

 

For further information, please contact a member of our team at hcis.livingwell@nhs.net

Follow us on Twitter:@LWIC_QI, @turnersara99, @paulbaughan, @sandracampbellc65402031

Reflecting on our palliative care work: thoughts from Sandra Campbell

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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