Mr Lucas’ Story

Dr Paul Baughan, our National Clinical Lead for Palliative and End of Life Care and GP in Dollar, tells us about Mr Lucas who appears in our new video below.

My first contact with Mr Lucas was sadly not a pleasant one.  It was Christmas Eve 2014 and he had travelled from Birmingham to spend time with his family. I was called when he suddenly took unwell, and I sent him to hospital for treatment of an evolving stroke.  Mr Lucas spent that Christmas in hospital.

Stroke disease is one of many conditions which contribute to ‘frailty’. People living with frailty have reduced resilience to illnesses such as infections, to injuries following falls, or to emotional stress such as following a loss or bereavement. This makes people living with frailty particularly vulnerable and at risk of unplanned admission to hospital.

However by identifying people living with frailty at an earlier stage through tools such as the eFI (electronic frailty index), it is possible to provide evidence-based interventions and support which can help them live independently at home. At the moment 21 teams across Scotland are taking part in the Living and Dying Well with Frailty Collaborative to improve the care provided to people with frailty. These teams are looking at how health and social care can work more closely together to support people as they become more frail.

By identifying people early, before a crisis, and putting in the right services and support, it is possible to help those with frailty to live a fulfilling life in their own homes.

Mr Lucas moved to live in Clackmannanshire following his stroke so that he could be closer to his family.  In this video Mr Lucas gives a clear account of how he is supported to enjoy the things that are important to him – his books and good music.  He describes how aids and equipment around his house have helped him, and the huge impact that professional carers make to his day to day life.  I first met Mr Lucas in difficult circumstances.  It was a delight to interview him for this video and to see how his life has changed and been enhanced through this vital support.

 

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

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/

Living and Dying Well with Frailty Collaborative – Learning Session One

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On 19 September 2019, 21 teams  taking part in the Living and Dying Well with Frailty Collaborative came together for the first learning session where they learned how to test their ideas using a range of improvement methods, and how to measure their activities and the impact they make. They also heard from each other about the frailty work being undertaken in the various Health and Social Care Partnerships and GP practices, and had time as a team to look at their project charter and develop their plans for their next test of change during the learning session action period.

Living with Frailty

People are at the heart of what we do, so we started the day by hearing from those living with frailty. We heard about the experience of Mr Lucas, who featured in our video. He spoke about how the support that he receives from services and family helps him to live independently with frailty. Mr Lucas is one of Dr Paul Baughan’s patients, the Living Well in Communities (LWiC) National Clinical Lead for Palliative and End of Life Care and GP at Dollar Health Centre.

(In order to make this video accessible we are editing a final version with subtitles so this will be made available when this has been done).

 

twitter-logo (2)“I hope I’m as able as Mr Lucas when I have moderate frailty. I love how it was the carers, reading and music that helped him live well with frailty.”

 

We also had Hugh Donaghy join us for the day. Mr Donaghy is a carer for his mother and spoke to Professor Graham Ellis, the LWiC National Clinical Lead for Older People and Frailty, about his experience of providing care to someone living with frailty. Hugh discussed how technology is helping him to support his mother in her home, the blurred line between being a carer and a relative, and the challenges of hospital stays: each time his mother comes out of hospital, her frailty increases.

 

twitter-logo (2)

“Carer experience of mum with long term conditions going in to hospital ‘each time she comes home she’s that bit frailer’ – how can we build resilience when someone comes back home?”

 

Picture 2

I want to be involved in the Frailty Collaborative because…

Alec Murray, Associate Improvement Advisor, led a short ice breaker with the teams using Slido to ask the teams how they felt about being involved in the collaborative, creating the word cloud below…

LS1 Word Cloud

It was great to see people and care at the centre.

Throughout the day there were a number of questions asked on Slido. We didn’t have the opportunity to respond to all of these on the day, so we’ve pulled together our answers in this form: Slido Questions and Answers

Learning about Improvement

The teams then had the opportunity to learn about Quality Improvement Methods and Measurement for Improvement, led by the Living Well in Communities Improvement Advisors and Associate Improvement Advisors (Nathan Devereux, Scott Purdie, Dianne Foster, Tom McCarthy and Michelle Church).

Quality Improvement Methods

When we designed this session we wanted to explore with the teams a range of Quality Improvement concepts and tools. We held an introductory WebEx where we polled the teams to find out how much knowledge and experience everyone had in using QI tools. The teams told us that there was a real mix of skills and experiences in the room, and the results indicated that we should spend a little bit more time on the change package. Therefore the session was designed to give everyone a flavour of some of the approaches that might help teams in the action period.

At the end of the session, the teams were asked for their lightbulb moments:

“Build on existing practice and evidence with data”

 

“Small steps to improvement are better than a leap of faith”

 

“Even failed attempts are learning and a critical part of improvement”

 

“Don’t reinvent the wheel – SHARE”

 

“In order to spread change, you need to explain to others why it’s important, how it works and have a narrative”

 

Measurement for Improvement

As this was the first session we aimed to get everyone on the same level, so that teams were prepared for the first action period. We covered some of the practical elements of measurement for this collaborative, including the data collection method.

The collaborative is focused on three core measures, which represent an increase in involving people in conversations about their needs and care, and also a shift to more planned activity.

In the session we introduced the measurement plan tool designed to help teams collect this data and also provided time for teams to consider what their measurement priorities are, including local priorities and measures which take account of interventions (such as polypharmacy).

It was great to discuss measurement of the collaborative at the first learning session and particularly to hear the views of teams about how best to approach what can be one of the trickiest parts of improvement – measuring whether you make a difference.

Learning from Across Scotland

We had 15 teams and national organisation representatives host tables where they presented on what work they have undertaken on frailty in their area. This was ‘world café’ style, where everyone had an opportunity to go to three tables and hear about work in other areas and ask questions.

There were some great discussions, and the feedback we received indicated this was a very popular session. It was beneficial for them to hear about what is happening in other areas and have the chance to discuss challenges faced, as well as successes.

For example, Rebecca McLaren and Eileen Downham from the Angus team presented work on their Enhanced Community Service and community multidisciplinary team (MDT) meetings. The challenge faced in Angus is that a person can be registered to any of eight GP practices because practice boundaries overlap. The group were particularly interested that a medicine for the elderly consultant from hospital attends the community MDT meetings.​ If a consultant can’t attend then an advanced nurse practitioner attends in their place.

North Lanarkshire HSCP has been working with hospital at home and 30 GP practices to test MDTs. They found the challenges were around data and how home visits can be recorded. Also whether it is possible to measure the quality of ACPs, and creating an infrastructure to support people wishing to stay at home.

For a full list of these topics please click here. For more information about anything which was discussed, please get in touch via email – hcis.livingwell@nhs.net – and we can put you in touch with the relevant team.

Team planning

Teams were then given time to work together on their project charter and action planning for the first action period of the collaborative.

Picture 3

If you are undertaking similar improvement work you may find the below resources helpful:

National Change Package

Project Charter Template

RACI Action Plan

 

twitter-logo (2)“Fantastic reasons to be at #LWiCFrailty today. But “a goal without a plan is just a wish” so now time for action! Thanks for a useful day of sharing & learning @LWiC_QI @eFI_Midlothian”

 

What next?

Away teams will share their learning with the Home Teams and begin their tests of change, or continue with any tests already underway. They will be documenting their progress and recording data over time, with the support of the Improvement Advisors and Associate Improvement Advisors who are area leads for each of the teams.

For more information about the collaborative please visit https://ihub.scot/improvement-programmes/living-well-in-communities/our-programmes/living-and-dying-well-with-frailty/

For the PowerPoint slides from the day from all sessions, please click here.

Welcoming 21 Teams on our Collaborative

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

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

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.

Introducing our Living and Dying Well with Frailty Collaborative

20190425 collaborative application tweet v0 1_static

Thomas Monaghan, our Portfolio Lead, discusses our Living and Dying Well with Frailty Collaborative

People in Scotland are living longer than ever before, which is to be celebrated. This means that we all get to spend more time with our loved ones. However, people are not just living longer: they are living longer with more complex health needs and conditions, such as frailty. While we welcome spending more time with our loved ones, we also recognise that it can increase pressure on families, on carers and on our health and social care services to support people to have the best possible quality of life.

Improving care for people with frailty

Supporting people with frailty to have the best possible quality of life is becoming increasingly difficult, as there are growing numbers of older people in Scotland who need support: there will be 25% more people age 65 or over by 2029, and almost 80% more people age 75 or over by 2041.

If we want every older person in Scotland to have the best possible quality of life, then we need to start changing how we support people with frailty to live well in their community.

Our support

At Healthcare Improvement Scotland we want to help health and social care services to make changes so more people with frailty can have a better quality of life in their community. This will help to avoid crises that can lead to poor outcomes and increase pressure on families, carers and health and social care services.

We can do this by helping health and social care services to use evidence and quality improvement methods to:

  • find people who are becoming frail before they reach crisis point
  • 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.

Our Living and Dying Well with Frailty Collaborative

If you want to work with us to help people with frailty to have a better quality of life and reduce pressures on individuals and services, then get in touch. We can talk about how you could be part of our Living and Dying Well in Communities improvement collaborative.

To find out more, get in touch by emailing us at hcis.livingwell@nhs.net, calling us on 0131 314 1232 or tweeting us @LWiC_QI.

Looking forward to hearing from you!

Neighbourhood Care Across Scotland – What Next?

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Neighbourhood Care Across Scotland – What Next?

On 20th March the Living Well in Communities team held a national event in Glasgow to mark the end of the first phase of the Neighbourhood Care Programme. It was an opportunity for those involved in the ihub’s national programme of work to come together with other regions in Scotland (and the rest of the UK) that are developing and testing similar models of care. 91 people attended and the roles and organisations present on the day are represented in the two word clouds below.

What is your job role? (n=68)

Word cloud 1


Thought bubble

On reflection, an opportunity for improvement would be to facilitate the attendance of more of those directly involved in a care giving role.


What organisation are you representing today? (n=72)

Word cloud 2


Thought bubbleThere was really good representation from a variety of organisations from all over the U.K. An opportunity for improvement would be to have more representatives from third sector and trade union organisations.


It was particularly interesting to learn that those attending had varied knowledge and experience of Neighbourhood Care in their own areas, with just over half of attendees reporting that Neighbourhood Care teams were currently operating in their place of work.

Are there Neighbourhood Care teams currently operating in your organisation? (n=35)

Poll 1


Thought bubble

This poll was over lunch time and responses were lower than other polls.


The aims of the day were:

  • Meet, network, share and learn from each other and leave with an improved awareness of models of Neighbourhood Care and similar activity being tested throughout Scotland
  • Consider how the learning and challenges in adopting models of Neighbourhood Care can inform the design and working of integrated health and social care teams of the future
  • Consider the implications for future local / national policy

The full agenda can be found here, and the slides that were used on the day can be downloaded from the Neighbourhood Care Knowledge Hub (Khub) website. You will have to become a member of the Khub website first before following this link and downloading these, but we’d encourage you to join, as we hope that this website will become a platform for those from different health and social care backgrounds to network, chat and also share resources, experience and data. Just ‘request to join’ online by following the link above, ‘sign up’ and searching for Neighbourhood Care on the Knowledge Hub, but if you have any difficulty, please contact the team on hcis.People-LedCare@nhs.net.

The audience participation tool, ‘Slido’ was used for delegates to ask questions throughout the day and to engage with each other. It was new for the majority, but most people mentioned that they liked using it in their evaluation forms, so we look forward to using it more at future events.

Have you used Slido/similar before? (n=59)

Poll 2

In the first part of morning, we heard from a variety of presenters in national roles: Chris Bruce, National Advisor, Neighbourhood Care Programme, Maria McIlgorm, Professional Advisor, CNOD, Scottish Government, Joanna MacDonald, Chief Officer, Argyll & Bute HSCP, and Jane Johnstone, Professional Social Work Adviser, Scottish Government.

They discussed what Neighbourhood Care meant in Scottish/integrated care context. We then heard from a mixture of sites from all over Scotland that are implementing models of Neighbourhood Care in their Health and Social Care Partnerships (HSCPs). This included South Lanarkshire HSCP, Greater Glasgow & Clyde HSCP, Angus HSCP, Cornerstone, Aberdeen City HSCP, Western Isles HSCP, Clackmannanshire & Stirling HSCP, NHS Highland and Argyll & Bute HSCP.

Generally it was acknowledge that there is definite merit in working in this way both for staff and people that receive care, but there are common challenges too.

After lunch, delegates had the opportunity to discuss the top five voted questions in the room and then the ‘barriers’ and ‘enablers’ to delivering models of neighbourhood care in different settings (with a particular focus on ‘what are the current/required solutions?’) as part of a world café session.

The engagement in these conversations was really worthwhile and produced a lot of valuable intelligence that will help guide the future national direction of this programme of work.

As there wasn’t enough time on the day to answer all the pertinent questions posted on Slido, the LWiC team decided to pose these questions to the most appropriate individuals/teams and collate the responses. Thank you to all who have provided the questions and the answers. The response document can be found by following this link.

The world café session provided information that was particularly useful. The full transcription of the flipchart notes from the twelve individual tables is here, but the world cloud below that has been generated from combining all discussions highlights the key themes really well.

Word cloud 3

Within the Healthcare Improvement Scotland’s Improvement Hub (ihub), the Neighbourhood Care programme will move from the Living Well in Communities (LWiC) team to the Person-Led Care team from April 2019 as it enters a second phase. Chris Sutton, Portfolio Lead for the Person-Led Care team, introduced herself to the room on the day and will use the outputs from these valuable discussions to inform the future actions needed to support the delivery of the Neighbourhood Care Programme going forward. For any further information or to find out how you and your team can engage, please contact the Person Led Team on: hcis.People-LedCare@nhs.net.

Picture 11Fiona McQueen, Chief Nurse, Scottish Government rounded off the day with her reflections. Fiona discussed the great impact stories that were shared earlier in the day and stressed that working together in an integrated manner is the only way to provide truly person-centred and holistic care.

‘We still have a long way to go, but it’s a very worth-while journey’

 

Thank you to everyone who attended. Here are a few short ‘Vlogs’ that captured your general experience and learning on the day.

 

Future general enquiries/information requests should be directed to hcis.People-LedCare@nhs.net

Thought bubble

Thought by Nociconist from the Noun Project

ACP in Care Homes

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.

 

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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!”

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.