Implementing Deciding Right in Cumbria

Implementing Deciding Right in Cumbria Becky Chaddock Carol Bradley Melvyn Laycock

Implementing Deciding Right in Cumbria.

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Acknowledgements:

We must first acknowledge the enormous amount of work undertaken by Claud Regnard and the authors of the Deciding Right initiative from the north east. It was this work that has provided Cumbria with the foundations for the project. “All care decisions must come from a shared partnership between the professional and the child, young person or adult. But for those who do not have capacity for their choices, or may lose that capacity in the future it is important that the right choices are made.

Deciding right is a north east wide initiative - the first in the UK - to integrate the principles of making advance care decisions for all ages. It brings together advance care planning, the Mental Capacity Act, cardiopulmonary resuscitation decisions and emergency healthcare plans.

Written by health and social care professionals, Deciding right identifies the triggers for making care decisions in advance, complying with both current national legislation and the latest national guidelines. At its core is the principle of shared decision making to ensure that care decisions are centred on the individual and minimize the likelihood of unnecessary or unwanted treatment.�

Claud Regnard, FRCP Consultant in Palliative Care Medicine theclinicalnetwork@northeast.nhs.uk

Dr Nick Sayer, Palliative Care Consultant, took inspiration from the north east experience and was the driving force behind getting the Cumbrian project off the ground. Nick’s vision and determination to improve the quality of palliative care in Cumbria set the course for the county roll out. Cate Swift was the commissioning lead and her unstinting commitment and enthusiasm for the project has never waned. Nick and Cate secured agreement from the different trusts and governing bodies to sign up to the Deciding Right. Together with Adult Social Care, Cumbria CCG, the Cumbrian Hospices and palliative care teams, they invested in appointing facilitators. The coordinated consistent approach to advance care planning across the county represents serious commitment to work towards real change for the people of Cumbria.

The three facilitators would like to acknowledge the support and encouragement of their hospices and thank their respective managers for the freedom that they have given, which enabled them to work closely and creatively together.

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Index page: Acknowledgements 1. Report summary ..................................................................................................

5

2. Background and Introduction ..............................................................................

6

3. General Practice ...................................................................................................

10

4. Other Health Care Professionals ..........................................................................

14

5. Adult Social Care ..................................................................................................

17

6. Hospice ................................................................................................................. 19 7. Acute Health Services ..........................................................................................

21

8. Dementia and Care Homes ..................................................................................

23

9. Public engagement ............................................................................................... 26 10. Other areas ........................................................................................................... 28 11. Conclusion ............................................................................................................ 30 12. Recommendations ...............................................................................................

32

References ...........................................................................................................

33

Appendices i. ii.

iii. iv.

v. vi. vii.

Aims and objectives and Terms of Reference .........................................

Resources: Leaflet ............................................................................................

Conversations Matter ....................................................................

Poster presentation .......................................................................

Newsletter articles published ........................................................

Evaluation Form ......................................................................................

Local Incentive Scheme ...........................................................................

Practice Managers Read code flowchart .....................................

Year End Deciding Right Data 2013/14 ........................................

CQC care home guidelines .......................................................................

Penrith Training outcomes: let’s get it right ............................................

Deciding Right: A Play ..............................................................................

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34 36 37 38 40 41 42 45 46 48 49 50

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Implementing Deciding Right in Cumbria Duration of project: January 2013 – July 2014 (18 months)

1.

Summary

Key words: Deciding Right, Advance Care Planning, palliative, end of life care, Hospice, Hospice at Home , Gold Standards Framework, collaboration, integration, training, education, good practice,

Deciding Right was designed in the North East (Deciding right working groups, 2012) and provides a standardised approach to Advance Care Planning. An essential part of the initiative was accepted documentation for all health and social care organisations.

Cumbria have employed three part time facilitators, hosted by local hospices, to implement the Deciding Right across the county. Although the overarching aim was to educate all health and social care professionals in Cumbria about Deciding Right with a specific remit around long term care for dementia, they initially targeted GPs, and coordinated with the Cumbria Clinical Commissioning Group (CCG) as they incentivised rolling out Deciding Right. Education sessions were delivered to other community health care professionals, Adult Social Care, the four cumbrian hospices, the two acute trusts, care homes in relation to people dying with dementia, and the general public. The approach in each area has been to establish every professionals responsibility to: inform patients of their right to make choices about future care; talk to them about their wishes; and support them to record these on the appropriate documentation. This has provided a framework that enables improved communication with patients, but also between professionals. Over the eighteen month project, facilitators have made strides in raising awareness about Deciding Right, and laid the foundation upon which to build. It has not been possible to meet all the aims and objectives within this timeframe, but there are signs across health and social care of a culture change in relation to talking with patients about their wishes and preferences about end-of-life care. Key recommendations are that this be an ongoing project; that Deciding Right be incorporated into induction and training for new staff across health and social care; that the hospices embody best practice; that Deciding Right be joined up across the whole northern region and that the cumbrian website be updated. Over all it is clear that staff report an increase in confidence around Advance Care Planning and a greater understanding of their role and responsibilities under Deciding Right.

There is still some way to go to embed Deciding Right in every day working practice for all health and social care professionals. Ultimately, the success of the project is unlikely to be seen for some years; however early signs are that the people of Cumbria are more likely to have advance planning conversations with people involved in their care than they were eighteen months ago, and that is something to be proud of.

“We will never achieve personalised care unless we have richer clearer conversations between clinicians and their patients.�

Dr Jane Collins, CEO of Marie Curie

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2.

Background and introduction

“How we care for the dying is an indicator of how we care for all sick and vulnerable people. It is a measure of society as a whole and it is a litmus test for health and social care services.”

(Department of Health, 2008) For some time there has been a consensus about the need to improve the quality of end-of-life care in the UK. The widely agreed standard for health and social care has become: ‘Is it good enough for my mother/brother/daughter/grandparent...is this good enough for me?’ There have been numerous attempts to address quality, and it is acknowledged that the process of achieving this is far from simple, it involves engagement from: the general public, professionals in practice in every sector of health and social care across both statutory and voluntary sectors, as well as managers, commissioners and policy makers (Barclay & Forrest, 2007). The overarching aim of palliative care is to ensure that people have equitable access to high quality care at end-of-life where ever they happen to die, whether that is at home, in a hospice or in hospital (Department of Health, 2008). Advance Care Planning (ACP) has been considered ‘best practice’ for patients with palliative needs for nearly ten years (National End of Life Care Programme, 2012) as it has been shown to improve end-of-life care and patient and family satisfaction outcomes (Detering, Hancock, Reade, & Silvester, 2010) and yet outside (and sometimes within) specialist palliative and hospice care, it has not become a standard part of professional practice. The adoption of Deciding Right in Cumbria grew out of the recognition that in order to improve end-of-life care for all patients and families across the board, a change of culture was required in both health and social care. It must incorporate an overarching strategic commitment as well as a practical roll out on the ground.

Policy landscape and context of Deciding Right:

2011 2009 2005 Mental Capacity Act

2008 National End of Life Strategy

2012 Deciding right Launch in the North East

Six Steps to Success Facilitators in Care Homes, Cumbria

Living well with dementia - national strategy

2010 Cumbria End of Life Strategy

2013 Liverpool Care pathway enquiry started and Francis and Keogh reports published

2012 National NHS Guidance on advance care planning

2013 Deciding Right Facilitators in post

2012

2013

The Route to Success: achieving quality for social work The College of Social Work

End of Life SEQIN for Gold Standards Framework across UHMBT and CPFT Community Hospitals

Figure 1.

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The policy landscape, as shown in Figure 1, is a response to the changing demographics in the UK. People are living longer and with increasing levels of frailty, disability and chronic health conditions. Most deaths in the UK are of people in older age and from cardio-vascular or respiratory disease. Annual numbers of deaths in the UK expected to rise by 17% from 2012 – 2030 (Gomes & Higginson, 2008). Numbers of people diagnosed with dementia are increasing year on year (Department of Health, 2009). People with life limiting illnesses are living longer; learning disabled adults are taking on caring responsibilities of older or sick family members; and older spouse cares are bearing increasing caring responsibilities. The rising level of homelessness is associated with a range of health problems leading to early death, and a significant proportion of the prison population has end-of-life care needs. When we talk about end-of-life care in the UK, we’re discussing a rapidly growing and hugely complex issue that is set to be one of the major challenges to health and social care provision in this country.

National statistical analysis found that 1% of the population are in the last year of their life, and Dying Matters have mounted a campaign for GPs to ‘find their 1%’. This has been picked up nationally and locally as a positive attempt to proactively address this population’s needs. If every GP surgery identified the 1% of their practice population that are in the last year of life, the whole 1% UK end-of-life population would be captured.

It would then be possible to work differently with this group; offering advance care planning at an early stage, proactive symptom control, and regular joined up holistic reviews. Cumbria’s CCG signed up to the 1% campaign (Dyingmatters, 2012) for primary care 2013/15.

Origins of Deciding Right: Deciding Right was developed in the North East under the leadership of Claud Regnard (Consultant in Palliative Medicine, St Oswald’s Hospice and Newcastle Hospitals NHS Trust). It brings together advance care planning, the Mental Capacity Act (MCA), cardiopulmonary resuscitation decisions and emergency healthcare plans. It identifies triggers for making care decisions in advance, complying with both national guidelines and national legislation. DR provides clear principles for all healthcare organisations and professionals to follow, focusing end-of-life care decisions on the individual patient’s needs and wishes, rather than organisational policies and procedures. Once a patient’s options have been explained and they have discussed them and expressed their preferences and wishes, DR provides common regional documentation to capture preferences, wishes and decisions which is recognised by all health and social care professionals. It is believed that effective implementation of DR will play a part in minimising the likelihood of unnecessary or unwanted treatment, reducing unnecessary hospital admissions and ensuring that people that are likely to lose capacity will be able to continue to influence and direct their care.

Aims and Objectives of the Cumbrian Project: The aim of the project was twofold: to educate health and social care professionals in Cumbria about Deciding Right, its framework and supporting documents; and to deliver an understanding and awareness of the endof-life needs of dementia patients who reside in care homes as an adjunct to the existing Six Steps to Success programme (appendix i).

The Deciding Right objectives were clear about ensuring a consistent approach to delivery and implementation across Cumbria in the training and education delivered, and in engagement with professional groups and organisations. There was an initial focus on GPs with specific targets relating to the CCG Local Incentives Scheme (LIS) for 2013/14, but with a clear remit for all health and social are professionals in all settings. The objectives clearly stated that the project would raise the profile of Deciding Right with all health and social care staff across the county, increasing professionals knowledge, confidence and skills in having conversations with patients about Advance Care Planning (ACP) through training and education opportunities, support and networking.

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The Dementia Strategy objectives focused on improving end-of-life care for care home residents with sessions to be delivered to all care homes through the existing Six Steps programme in conjunction with the facilitators of Six Steps.

Project funding & stakeholders: With the support of the Palliative Care Consultant and the hospices, the funding for the project was put together by the commissioners from various sources: CPFT, Cumbria CCG, the Dementia Strategy implementation and the Regional Innovation Fund.

The steering group was made up of representatives from:  Hospice at Home West Cumbria  St Marys Hospice  Eden Valley Hospice  NHS Cumbria  Cumbria CCG  Cumbria Partnership Foundation Trust (CPFT)  a patient representative from Cumbria EOL Workstream and included invitations to stakeholders from:  the Care Sector Alliance Cumbria  Children’s services  GP lead from each locality  Adult Social Care  Cumbria Health on Call (CHOC)  North West Ambulance Service (NWAS)  Acute Trust end-of-life care group (North and South)  Mental Health Services and BME services.

The main purpose of the steering group was to support, monitor and raise the profile of the Deciding Right roll out across Cumbria (appendix i).

DR in Cumbria built on existing good practice across the county and the skills and experience of health and social care professionals to facilitate shared knowledge, confidence and the standardised DR regional paperwork.  The part-time facilitators were employed by three hospices across the county. They were drawn from different professional backgrounds with a wide range of experience from nursing and social work. The facilitators worked in close collaboration sharing resources, training and innovation, across three hospices to introduce a shared vision for the whole county. The vision was to employ a standardised approach across the county, ensuring equitable access for all people to information and advice about their rights and choices and advance care planning. Based on the North East experience, the Cumbrian project set out to ensure that all health and social care staff understood their responsibility to have advance care planning conversations with patients in their care. The aspiration was to move towards a culture of seamless high quality palliative care across organisational and professional boundaries regardless of the patient’s entry point into health and social care services.  The facilitators designed the resources, training, education and awareness sessions from a perspective of rights and choices, and not from death and dying. This allowed professionals to have a very Implementing Deciding Right in Cumbria.

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different conversation with all patients and enabled the conversation to begin much earlier in the patient journey. This also encourages an ongoing conversation between professional and patient about choices wishes and decisions about future care.

Although the roll out of the project began with GPs, the facilitators employed a whole systems approach in recognition that the patient’s journey crosses professional and organisational boundaries, and to help foster joined up and partnership working.

Public engagement was integral to the roll out of the project. It was felt to be important to both equip staff to have conversations with patients about choices and at the same time begin to engage the public in to a wider discussion about their right to make choices for the future.

What follows is an account of what happened over the 18 month project, the methods and approach used for each area, the achievements and outcomes, the challenges encountered and a look ahead to issues of sustainability.

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3.

General Practice

General practice has long since been recognised as key to the patient journey in palliative care (Zheng, Finucane, Oxenham, McLoughlen, McCutcheon, & Murray, 2013 ) (Mitchell, 2002). GPs are the first port of call for the whole population and are the health care managers for patients in the community. In order for Deciding Right to be successfully embedded in practice across Cumbria, engagement with general practice was key.

Approach:  One of the primary aims of the project was to support and improve the practice of GPs, and facilitators began by contacting each surgery. It was seen early on that with the support of the CCG it would be possible to collect quantitive data about the implementation and practice.  The CCG added the 1% campaign and Deciding Right to the Local Incentive Scheme (LIS) for 2013/14.

The LIS required GP practices to hold a palliative and supportive care register (PSCR) for their practice.

They completed a baseline audit of the register on 1st April 2013, and repeated the audit each quarter (June, September and December 2013 and April 2014) measuring:  % of practice population on the PSCR including patients that had left or died;  Number of Palliative Care patients not on the PSCR, but coded with the ‘would not be surprised’ (9Ngt) read code, indicating that the GP would not be surprised if the patient died within the next 12 months, in line with national guidance.  % on PCSC register coded Red/Amber and 9Ngt patients with one or more DR document including patients that had left/died.  The facilitators approached each of the 82 GP practices across Cumbria via telephone, email, visits etc. to offer input for Deciding Right and to support their understanding of the LIS: surgeries were encouraged to identify and maintain their 1% registers, have early conversations with patients, use regional documentation to record and disseminate patient choices, and record them appropriately on the electronic system.

Achievements: 

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Of the 82 practices across the county, facilitators have contacted every practice to offer support training and education. There has been face to face contact with 71 practices on at least one occasion.

Support, training and education has been delivered to 71 practices. This represents coverage of 87% of GP across Cumbria.

Initially, support was provided in 1:1 face-to-face sessions with Practice Managers, individual and groups of GPs from surgeries; however the vast majority of sessions have been delivered to mixed groups of professionals and staff within surgeries. These sessions were often part of their Palliative Care meetings to look at the register. Facilitators found that these were an excellent starting point and gave a real feel of the registers practical outworking and how conversations with patients were going.

The full Year end Deciding Right data from the CCG can be found in appendix v. The 1% target was met across the county [Figure 2]; however, regional variation can be see and within each locality, individual surgeries high performance has balanced other poor performances. This was a pattern that repeats across the audit. Of the patients coded red and amber (appendix v), 39% overall had some form of ACP documentation [Figure 3]. In reality the majority of these documents were DNA CPR

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forms with far fewer ADRTs and EHCPs being completed with patients. The missing ACP conversation code has had an impact on the figures and, now in place, it will be interesting to see how this impacts next year’s audits.

2013/14: % of Practice Population on Palliative Care Register Locality

2013/14: % of Red / Amber Patients with DR Form Completed

Cumbria

Locality

1.60%

60.0%

1.10%

40.0%

0.60%

1.11%

0.10%

0.84%

1.22%

1.05%

0.82%

1.26%

20.0%

40.5%

40.4%

Cumbria

56.3% 29.9%

14.5%

39.9%

0.0%

-0.40%

Figure 2  

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Figure 3

Over the 18 months, the facilitators presented sessions to six large gathered Protected Learning Time (PLT) events, each lasting between two hours to a full afternoon. These sessions tended to be at individual surgeries and focused on the project and how it would work in that specific practice.

There were five multi-professional locality training events, including professional representation from locality based allied health professional teams, district nurses and voluntary agencies working in the locality. This was an aspirational model for disseminating DR, however, at this A Copeland surgery commented: We were delighted to early stage, it wasn’t a practical have Mel at the practice to explain the purpose of approach. Many of the allied health Deciding Right to our GPs, nurses and other staff. It professionals, district nursing teams and helped us to understand the difference between patients’ voluntary agencies work across surgery rights to express their wishes but us not having to meet boundaries, and practices were keen to demands and also how we can attempt to meet these get to grips with the requirements and requests in a holistic way. Although many people may have preferred arrangements for their care, they may not work out how they were going to manage have expressed these in a way that meant that the that in their team. It is a model to hold practice could share them with others involved with their onto for the future however, as a way of care, especially towards the end of life. We also felt that establishing and maintaining closer links although clinicians felt comfortable to begin the end of life between professionals and services. discussion with patients who had a clinical diagnosis, they Following Training sessions, several were less comfortable to begin this conversation with the practices have invited facilitators back to otherwise ‘fit and well, but ageing’. Deciding Right gives talk to Clinical Interface Managers us a framework to start the conversation in a hypothetical (CIM’s), Practice Managers and IT staff to way, therefore reducing any unnecessary stress for the look at embedding Deciding Right in the patient. practices system.

One outcome has been that there is now a much wider mix of diagnoses on the practices PSCR; it is no longer just a record of the cancer patients. This reflects a change in practice and represents another step towards equitable access to palliative and supportive care services and approaches for people with long term conditions.

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Challenges: 

Facilitators encountered varying levels of engagement from practices and a small number chose not engage at all. Facilitators have reflected with the CCG about the wording of the LIS as there was no compulsion for practices to engage; they were there purely as a support and resource. It would have been possible to make engagement mandatory, but it was felt that this may have undermined the ethos of the project; this is unequivocally good practice upheld by both research and policy, and the CCG had already imposed a non compliance financial penalty. o It may be worth noting that engagement from some practices took over a year. Facilitators identified that this was for a variety of reasons: internal practice pressures, changing computer systems, and there was one practice that had already been working in this way, and just adopted the DR forms. o Facilitators also observed that some of Example: In South Lakes, the practices joined forces to the data was difficult to collect as not establish a locality post to support all practices with IT all GP practices were using the coding issues around incentives DES and LIS and QUOF. Their outlined in the LIS and therefore some role is to visit/ talk through and support practices to understand the requirements and schemes. Initial of their work wasn’t included in the feedback appears to show that this is having a positive audit. effect.  One of the main challenges of working with surgeries has been the fact that each practice works independently, each employing different systems and models of work, and so engaging each practice has required eighty two individual and bespoke approaches.  Another challenge has been around the fact that DR is just one small part of an enormous list of incumbent competing mandatory requirements. Facilitators have been seen firsthand the challenge that this poses and the work entailed in meeting the requirements for often very similar changes to practice.  Across the county, there has been a disproportionate preoccupation with DNACPR. It is often the only issue that GPs want to talk about, and it has been hard to establish that this is only one small part of advance care planning, and that, in terms of practice, the Mental Capacity Act has much more weight.  Some practices raised concerns about adding people to the PSCR for fear that they would not be considered for active treatment in the event that they were admitted to hospital. This is likely to have had an impact on the LIS figures for those surgeries. It demonstrates the need for a whole systems approach across health and social care, and the need to change culture by building confidence in colleagues services and standards of care.  Facilitators found varying depths of knowledge of MCA and the Best Interests process (BI), and their practical outworking in daily practice. It has formed part of the core training and Example: The ‘NHS Employer and the General Practitioners awareness sessions.

Committee’ have agreed the enhanced services changes for 2014/2015. These include a new one year scheme for ‘Avoiding unplanned admissions: proactive case finding and care review for vulnerable people’. This involves practices identifying the 2% frail elderly population and working proactively with them to help avoid admission. This fits well with DR and planning in advance, and at least one GP has started to use these patient care reviews as an opportunity to start the ACP process and discuss patient’s thoughts and wishes about their future care.

Implementing Deciding Right in Cumbria.

Sustainability:  The outcome of the LIS audit has demonstrated the need for ongoing input to support GP surgeries and in particular with regard to embedding practice into systems.

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The momentum has just begun to gather for this part of the project, facilitators are beginning to see practices requesting contact rather than proactively approaching them. For the future it is vital that this engagement is encouraged so that all the different elements are able to work together to reinforce practice.

Facilitators have been consulting with the CCG over a review or modification of the LIS to encourage practices to focus on the conversation and system rather than DNA CPR There is room for further integration in the templates used by surgeries around care planning. The Year of Care care plans for long term conditions and the new frail elderly care planning required would fit well with the Emergency Health Care Plan. In order for practices to avoid being swamped by care planning documentation, it may be helpful to streamline and integrate the plans.

Over the 18 months, the facilitators have had input to 87% of all General Practice in Cumbria and, given the enormous pressure practices are under, this represents an impressive commitment. Although it may be disappointing not to have input to every practice, this represents a huge achievement. The facilitators found the LIS to be helpful in terms of raining awareness and PM agenda, but there is a danger that it becomes a tick box exercise with the motivation for doing DR with patients becoming a few extra pence per patient rather than because its best for patients. Facilitators are clear that there is still significant work to do, but feel that the ground has been prepared for the majority of surgeries, and that we are beginning to see an increase in momentum. It is anticipated that with ongoing support and encouragement, that DR will become a core part of GP practice with patients. This is a firm foundation upon which to begin to work towards a high quality seamless approach to end-of-life conversations for people with palliative care needs.

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4.

Other Health Professionals

Every significant policy and report into improving the standard of care for people at end-of-life has cited joined up services and integrated working across boundaries as a key action point (Department of Health, 2008) (Department of Health, 2009) (The Help the Hospices Commission into the Future of Hospice Care, 2013).

Embedding DR into practice was always going to involve a whole systems approach to roll out, and it was inevitably going to be more than an 18 month programme. In order to meet the aim of all health professionals providing high quality care for people approaching end-of-life, facilitators have sought to identify and engage with wider health care teams.

Approach: 

Facilitators contacted teams where links had already been made and shared their existing professional contacts across the areas. The teams targeted ranged from specialist teams, to community and acute services. Facilitators networked at each session to widen their knowledge of teams and professional contacts.

Achievements: 

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Individually tailored training and education sessions appropriate to the needs of their clients and service were delivered to professional groups. Sessions have been held for a wide variety of allied health professionals, including: Mental Health teams, COPD and Heart Failure nurses, Upper GI teams, short term intervention teams (STINT) and community rehabilitation services (CRS), Occupational and Speech therapists, MS nurses, MND teams, resuscitation teams, Independent mental capacity advocates (IMCA) and Learning Disability teams. In most cases, formal training sessions were provided to discrete groups of professionals working in each area.  All sessions have been highly evaluated, and the confidence and understanding on a scale of 1-5 increased by an average of over 40% from baseline self rated scores.  Following this training, there have been several requests to provide individual support in particular patient scenarios. In some cases, facilitators have worked with specialist practitioners in a mentoring capacity directly with clients.  In general the subject has been well received and professionals have engaged at a personal as well as a professional level; one participant commenting that they following a session, they “...feel confident enough to be able to talk to my mum about this, I’ve been putting it off because I didn’t know how to bring it up, but having had a go myself, I’m going to do it.”

Shared training Example: In Furness and South Cumbria a standardised two hour training session was sessions have provided for District Nursing teams. This training was designed to enhance their previous knowledge of the MCA and inform them about ACP and DR. Evaluations for these sessions been held for scored well. Participants said on their evaluations: ‘I am now aware that I need to use mixed groups every opportunity to implement Deciding Right’ and; ‘I will try to have conversations with of specialist patients which may help to facilitate what they want for their end of life care’. and district nurses around ‘Conversations Matter’, these were well attended and formed the basis upon which to introduce a more formal session for District Nurses in South Cumbria.

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 CHOC training sessions have been delivered to the service on two occasions, and evaluations show that the sessions were valuable in terms of learning, but also for fostering an awareness of the issues surrounding DR. The training delivered to CHOC was highly evaluated and has been requested to be repeated.  Facilitators engaged with the North West Ambulance Service (NWAS) in an effort to improve the communication between the ambulance service and other professionals, particularly GP surgeries. It was important that Ambulance Crews in Cumbria and North Lancashire are aware of Deciding Right and the documentation they needed to look out for. It is also essential that NWAS are appropriately informed of what documentation patients have in their homes. This has partly been a fact finding exercise to find out what the issues are from both sides and look at how to begin to unpick them. The facilitators are currently exploring the possibility of writing a series of articles for the regional NWAS newsletter that goes out to each crew member. In order to be fully affective DR needs to be part of the mandatory NWAS training in this region. o NWAS in Furness have been piloting a new ‘pathfinder’ project aimed at trying to prevent unnecessary hospital admissions for patients with long term conditions. This has had some success and is now being rolled out in the South Lakes. As both the Pathfinder project and DR use yellow envelopes they can work well alongside each other. o Communication will be further improved with the forthcoming Electronic Palliative and Care Coordination System (EPaCCs) – an electronic system would enable much better communication between professionals, and provide NWAS with an to date electronic record of ACP documents and decisions.

Example: During the CHOC sessions, several delegates stated that their worst nightmare was to be called to a patient with no information to guide them. All considered that the range of Deciding Right documentation could only assist them in making what can often be difficult and for the family emotional decisions.

Example: Following discussions with management, medical, nursing and allied health professionals, a coordinated 3 hour training programme was provided for all staff at Penrith hospital under the title: ‘Deciding right – Lets get it right’. Over the first five sessions, there were 16 participants, they all rated the sessions as ‘very useful to [their] work’, and they’ve all been ‘satisfied’ or ‘very satisfied’. The rating of confidence and understanding showed an average move in score of 5 points from the before and after self scoring against DR and the training outcomes (appendix vii). Part of the process was to engage the staff in identifying barriers and solutions to embedding DR into practice in their teams. Suggestions included systemic changes to EMIS recording; including the DR leaflet in ward packs given to all patients; altering colour coding of patients on the ward to identifying red/amber/green with non GSF patients in black to make it clear who’s needs to have advice/information. There was also support for the idea of a ‘reunion’ or networking sharing good practice event to keep the momentum going and ideas fresh: this will be happening Autumn 2014.

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Community Hospital engagement following the GSF SEQIN has been variable across the county.

Several sessions have been offered in some of the hospitals and either haven’t been taken up or the attendance has been very poor. This has been to do with staff not being released to attend the training, and attending whilst on shift.

One area of work that has been particularly rewarding across the board has been engaging with students. Facilitators have attempted to take every opportunity to engage with professional training courses and have delivered formal sessions to F1 and 2 medical students, nurses, and social workers.

Several individual students on placement have also had the opportunity to engage with training, but

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their feedback is often that they need to be learning about this in college, because they’re going to need it when they’re in practice.

Challenges: 

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Example: Sessions have been delivered to every social work student in Carlisle and Barrow at the University of Cumbria, in their second and third years. Deciding right is now a core part of the ‘Experts by Experience’ module, which entails a 3 hour taught session followed by a reflective piece. Each session has been well evaluated, with many commenting that this is ‘real’ and ‘proper’ social work and represents that kind of work they came into the profession to do. One student reflected: This opens a whole new world for me...and made me consider my [social work] role whatever my placement about being open and honest and prepared to talk to customers about what they want at end of life. This is a model that could be rolled out to all allied health professionals training in Cumbria.

The main challenge has been finding out where all the teams are and how to contact them, in the 18 months it’s still not possible to confidently say all teams have been identified. In the rapidly changing landscape of health and social care teams, knowing who to approach and then making contact is another difficulty.

Following on from this, there was a significant challenge in terms of scope; the numbers of teams and individuals within health and social care working face to face with people seems to be infinite, and the task appeared to be overwhelming.

While the level of engagement from NWAS has been encouraging, there are still numerous reports of problems on the ground with crews: insisting DNACPRs are in red; agreeing they will accept a temporary DNACPR form when transporting patients from Cumberland Infirmary; and not using the agreed county form. In addition, while facilitators delivered sessions as outlined above to CHOC, there is some evidence of inconsistencies in approach to end-of-life patients in care homes. Some doctors have refused to attend if the person doesn’t want to go to hospital, leaving the care home staff managing symptoms distressing patients, relatives and staff.

Sustainability:  



There is a need for repeated contact with teams to ascertain successes, problems etc. and to make and maintain links between teams that often share patients, to encourage closer working relationships and seamless service delivery Contact with the university is to be pursued in an effort to have Deciding Right included on all training programmes; facilitators will continue to engage with University of Cumbria for all health and social care professional courses, and with the Hospitals for the medical students.

Establishing good links with the recently established Cumbria Learning and Improvement Collaboration (CLIC) is also important. CLIC is an initiative that aims to bring together the education, learning development and improvement work across health and social care; use of their data bases re teams and contacts will be invaluable.

Many health and social care professionals have been given the opportunity / received training and support around DR. DR facilitators have taught most professionals as individual teams and have ensured that the training has been appropriate to each group and consistent across the county. Many teams who had heard of DR were enthusiastic and keen to engage in training and implementing ACP, although each team had very specific needs and issues. This has again emphasised the need for integrated working across organisational boundaries so that the ACP work done is accepted and recognised by others. Due to the huge number and variety of teams to be reached it is hard to see how DR can become ingrained in practice if it does not become part of mandatory training within each organisation.

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5.

Adult Social Care

People’s experience of an illness journey is primarily social. Our health may deteriorate as the symptoms increase and the results get worse, but asking someone what that means to them often leads to a discussion about their concern for their family or children, keeping a roof over their heads, paying the bills, not being able to go out to do the things they used to, or loss of social network. Traditionally palliative and end-of-life care has been seen as a ‘health’ issue that has little to do with social work (SW) outside organising domiciliary care at prescribed times. The role extends far beyond this to include work under the MCA and BI, safeguarding, risk assessment and contingency planning, to name but a few. Social workers often support people through a palliative stage of illness for months and years before they come under the remit of specialist health services and it’s vital that we recognise that end-of-life care is an embedded part of mainstream social care (Holloway, 2013). Adult Social Care has been an intentional and integral part of the roll out of Deciding Right in Cumbria.

Approach:   

Initially work began with the policy department, identifying key drivers and contacts to begin to plan implementation.

Facilitators met with the County’s principle social worker for adults and worked together on where DR fits into current practice and IT system The team then employed a systemic approach from Director/Deputy level down, through management structure to Team managers. From this position it was possible to speak directly to community teams in each area via the team meeting structure, and build on existing links with Palliative Care Social Workers (PCSW) in North Cumbria.

Achievements: 



Example: In one of the rural community teams in the county, SWs have adopted giving leaflets as standard practice at assessment and following up at support planning re: contingencies. In one case, the client had been repeatedly admitted to the community hospital because of her condition.

The SW spoke to her about her right to make decisions about her future care, and gave her the leaflet. When she was next admitted to the hospital, she took the leaflet in with her and began to have advance care planning discussions with the staff there. When she was discharged and the SW followed up, they were able to continue those discussions and the SW was able to follow up with the GP who made an apt to see the client in surgery about ADRT.

Facilitators have engaged with every level of the organisation; DR presentations and practice sessions have been provided throughout the organisation; senior management’s commitment to see this rolled out throughout Adult Social Care has been key.

Every community team in Cumbria has either had a DR presentation at a team meeting, or has one planned. Of the 18 community teams, the facilitators have made contact with all and delivered sessions to 12 team meetings, representing 75% of the community teams across the county. It wasn’t possible to formally evaluate every team meeting session or the impact on practice as these were often a slot in their business meeting. Patient stories suggest that there are pockets of very good practice and a widespread understanding of DR across the teams; this forms a foundation on which to build.

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There has been agreement at a senior management level that DR fits well into the support plan, and work is ongoing with teams, Principle SW and IT teams to include advance care planning and DR into the contingency planning section, which will further embed this into practice.

There are increasing numbers of examples of SW starting these conversations, giving leaflets and helping people to have discussions. Other health professionals have been encouraged to find that SW’s have already started discussions with patients, giving leaflets and background information, and this points to a future of more seamless practice and joined up working across professional and team boundaries.

Challenges: 

Time. Much as was found when engaging GPs, the teams are managing competing demands with reduced staffing and increasing workloads. One outworking of this has been that it hasn’t been possible to schedule and deliver sessions to every team within the 18months.

Sustainability: 

Example: On an early visit to one GP practice, there was laughter at the suggestion that social workers were going to be having conversations with patients about DR. On a follow up visit to the practice, the GP in question was anxious to feed back that three of their patients had been into surgery with the DR leaflet having talked through their options with a community social worker.

This experience enabled the GP practice to feel that this is something that they are part of and that they have partners in the community working in the background to support their practice.

Social workers are not going to be routinely completing ADRTs or EHCPs, because they require the input of health professionals in order to be specific etc. They can however inform people that they have a right to make decisions and form part of the team that enables choices to be recorded appropriately.

In order to embed practice into Adult Social Care DR has to be written into the assessment/support planning structure, and that work is ongoing. Once it’s adopted into the Liquid Logic ( IT) support planning template, the department will absorb it into their ongoing training and support sessions and guidelines – offering more in depth support for practitioners.

From the beginning of the project, Adult Social Care has been fully engaged and supportive of the aims and objectives. The process of engagement took several months and appeared slow to start, however this was to enable senior management to take the principles on board and facilitate a strategic roll out throughout the organisation. Facilitators have observed that the difference in approach between health and social care has been marked in this area, and arguably, the strategic top down and bottom up approach employed by ASC has been more effective in terms of bringing about organisational change. It is clear that there is still work to be done however in two directions: with the IT systems to embed DR into routine practice, and with practitioners and teams on the ground. It is hoped that some of the ongoing follow up and encouragement for teams in the north of the county could be supported by the Palliative Care Social Work (PCSW) team. They are already practicing across health and social care boundaries and helping to coordinate care for people with the most complex palliative care needs. Their work incorporates making plans for the future whether that be with dying parents of young children, families in crisis, or people that need help to stay at home to die, and the PCSW role has always had a strong emphasis on sharing, supporting and encouraging colleagues in community teams (Cullen, Chaddock, & Hearn, 2013). This naturally leads to inconsistency across the county as the existing team is already stretched and there is no corresponding PCSW service in the south or west of the county, however they are available as a resource for colleagues across the county.

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6.

Hospice

Advance Care Planning has been employed routinely in hospice settings as a core tenant of person centred holistic care. Hospice staff, whether practicing in a building or in someone’s home, represent a highly skilled workforce, with enormous experience of having difficult conversations with patients and their families about end-of-life issues. Hospice staff by nature are specialist and their focus is palliation of symptoms and treatment of pain: physical, spiritual, psychological and social. Deciding Right grew out of the day to day experience of hospice care, and the multi-professional teams working across Cumbria have for many years been talking to patients about these issues.

Approach:   

To ensure that the hospice and palliative care staff are kept up to date with developments in practice around ACP and are familiar with the new standardised DR documentation for ADRT and EHCPs .

Individually tailored training was offered in each Cumbrian hospice taking the form of 1:1 sessions, groups and larger groups to cover clinical teams, family support staff and volunteers.

The steering group were keen that this project not just be hidden in Cumbria, and facilitators were encouraged to engage with the wider hospice movement.

Achievements: 

Facilitators have raised awareness of the Deciding Right project and documentation and established a presence as part of their individual hospice teams.  There is some evidence (see example) that Case example: One family were very anxious about the risk to their documentation other than father of a catastrophic bleed. The doctors spent time talking it through DNACPR forms are being with them and they agreed that an EHCP would be helpful. There were three potential emergencies, and each was outlined in turn and followed completed with families. by a step by step plan of action. The plan was written in the family’s own  In each hospice there was words and was detailed down to the need to have dark towels on hand. engagement from the A special patient form was completed and sent to CHOC to update their family support teams, system, and copies of the EHCP were sent to GP, DN, and social work management, trustees team. The feedback from the other professionals was positive and the and volunteers, all of family felt able to take Dad home for end of life care. whom were represented at training sessions.  Hospice at Home North Lakeland, the one hospice organisation not Example: During bereavement follow up, a widow discussed with a employing a facilitator requested a two volunteer her desire not to be resuscitated (as was attempted for hour session to be delivered to their her late husband). The volunteer was able to guide her through mandatory training session where all some of the implications and promoted her to see her GP. The result staff attended. was an ADRT was completed and DNACPR, CHOC, and NWAS forms  Special sessions delivered to completed, in light of her bereavement it was decided to review her bereavement support and chaplaincy decision in three rather than twelve months time. teams in view of the pre-bereavement work undertaken by staff and volunteers.

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The facilitators had their poster presentation published at the 2013 Help the Hospices National conference (Appendix ii) where the ‘Commission into the Future of Hospice Care’ (The Help the Hospices Commission into the Future of Hospice Care, 2013) was launched.

Facilitators were key note speakers at Hospice at Home national conference 2013 in Milton Keynes.

The feedback from the two hundred delegates was extremely positive; they particularly enjoyed the ‘dramatic exploration of the origins of DR in Cumbria’.

Excerpt from ‘Introducing Deciding Right: a play’: Once upon a time long, long ago, in the depths of darkest Cumbria, a commissioner, a GP and a patient representative were getting together to do dark deeds...

C1: I say, have you heard of the new initiative that Claud Regnard has come up with in Newcastle?

C2: No, but we need a new initiative like a hole in the head.

C1: Yeah, but this one is all about using the Mental Capacity Act. C2: That’s not new, it’s been in force since 2005.

C1: I know, but it’s about patients making decisions about their care if and before they lose capacity.

C2: They can do that now, surely C1: Yes, but we need to get the GPs talking to their patients about these serious matters.

C2: Getting the GPs talking to patients, now that is new.

(Appendix vii)

Challenges: 

Facilitators found that the take up amongst clinical staff has been variable in local hospices, and there was an element of complacency in palliative care; they know it already. Traditionally hospices have been criticised for their insular operation outside the statutory structures of health and social care (The Help the Hospices Commission into the Future of Hospice Care, 2013). While the project demonstrates that this is not the case here, there has been a feeling from some staff that DR is not for hospices, it’s for other people. One of the challenges has been to show the necessity of a joined up standardised approach to ACP.

Sustainability:   



Requirement for ongoing training to continue to allow the hospices to keep pace with wider health and social care organisations in relation to DR. The facilitators will request to be included on the induction for new staff members and volunteers induction and then regularly followed up in mandatory training schedules.

Potential use of the Emergency Health Care plan for patients being discharged from inpatient units following a period of respite or symptom control. This could be a document that will both speak to the patient and their family about what to do in case of an emergency, and also help to provide a visible contribution to community health and social care colleagues as they continue to support the patient’s advance care planning.

The employing hospice organisations are in an excellent position to implement and audit DR. They need to become centres of excellence in ACP / DR where other professionals can get advice and support.

Although working to roll out Deciding Right to the hospices was not part of the core aims and objectives for this project, it has been important not to neglect the employing organisations. In beginning to work with the four hospice organisations in Cumbria, the facilitators have begun to establish a basis from which to build in the next phase.

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7.

Acute Health Services

Despite the ongoing initiatives to prevent inappropriate hospital admissions and treat more people in the community, people in the last year of life are often admitted to hospital repeatedly either for acute symptom control or because the person’s condition cannot be managed at home. In fact, a recent Scottish study found that 30% of patients admitted to hospital die within twelve months (Clark, Armstrong, Allan, Graham, Carnon, & Isles, 2014). Acute settings are key to ensuring continuity of care and approach in advance care planning.

Cumbria is served by two Acute trusts, University Hospital Morecombe Bay Trust (UHMBT), and North Cumbria University Hospitals Trust (NCUHT). There are four large district hospitals, two (Kendal and Barrow) covered by UHMBT, and two in the north (Whitehaven and Carlisle) administered by NCUHT. South Cumbria had investment and a SEQIN target to implement Gold Standards Framework across UHMBT in 2010-13, and north Cumbria did not. Understandably this has led to the trusts being at different stages with structures and investment in palliative care at the start of the Deciding Right roll out.

Approach:   

Facilitators established links with palliative care teams in each acute hospital They took up opportunities for input and joint working as they arose The facilitators developed links and make contact with training leads for Medical, Nursing and allied health professionals in each hospital.

Achievements:  





Through the existing structures put in place by GSF implementation, training was provided to the endof-life care link nurses in Furness and South Lakes The facilitator worked with the Furness Deciding right has been fully adopted by UHMBT. The staff provide yellow folders when discharging patients General palliative care team to develop with DR documentation and the DR DNACPR forms are and deliver a one hour presentation used throughout the hospital. Link Nurses for each resource on ACP and DR that can be ward have been / are being trained and supported by a accessed both in the hospital and in the GSF lead nurse. This works well, for example: having community. The resource contains all started a conversation with a patient about planning materials needed, including a their future care a link nurse was keen to see this PowerPoint presentation, and helps to continued on discharge. With consent, she informed ensure that there is a standardised the patient’s district nurse who had received DR training resource across the acute and training and was happy to provide on-going community healthcare trusts. opportunities for ACP in the community.

In West Cumbria, the facilitator has visited the wards with Deciding Right literature, and given a postgraduate lecture to the medical staff as part of their ongoing series.

In North Cumbria, Claud Regnard delivered a postgraduate lecture on DR and ACP at the Cumberland Infirmary, and although it was not well attended, it provided a springboard from which to plan with Trust management how to take DR forward in conjunction with the new EOL toolkit. There has been

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engagement at Managing Director level and meetings have been booked to discuss implementation across the organisation.

Medical students in South and West Cumbria (F1s and F2s) have had sessions about Deciding Right, and in West Cumbria, the facilitator has been invited to have a slot on the core training programme every year.

Challenges:   





The two acute trusts at different starting points: the south having had the SEQIN target for GSF has embedded this way of working so are already engaged and demonstrating good quality end-of-life care, where as the north have not had that.

Time and staffing constraints have been a huge problem. It appears that staff are not being released for anything other than mandatory training across the trust.

Facilitators have found that DR has been accepted and signed off at senior management level but that this has not filtered drown. Facilitators have no authority to make changes or the required systemic adjustments; the trust hasn’t taken responsibility for ensuring that staff have the knowledge and understanding of this aspect of palliative care.

Another challenge in North Cumbria has been the delay in publishing the resuscitation policy due to disagreement about the adoption of the standardised DNACPR form in the acute trust. The palliative care team took the decision that no meaningful work around DR can start until there is some certainty/consistency around DNACPR as this is the fundamental part of the acute roll out.

In general, all facilitators have found there to be a lack of consistency across wards, and hospitals around the county.

Sustainability: 

There is the need for concentrated systemic roll out of DR and the new End-of-life Care Toolkit in north Cumbria. As part of that, it is important that the acute trust both resources and takes responsibility for improving the quality of palliative care in their hospitals, as they are supported by the DR facilitators and the wider palliative care team

The Acute setting was not a primary focus for Deciding Right implementation aims and objectives, but it has been hard to ignore. Increasingly it has become the area causing the most difficulty in the delivery of seamless cross boundary advance care planning in the north of the county. Were the facilitators replicating this roll-out elsewhere, they would engage the NCUHT earlier on in the project in order to secure agreements and roll-out of training alongside the community programme. However, in the time available, this was unachievable in the north. In contrast in the south, where there has been more investment in end-of-life care staffing and education, the networking and links have been easier to establish. UHMBT has designated GSF and Cancer Care leads whose focus is on training and supporting ward staff in EOL care best practice. Their desire to provide patient-centred, seamless end-of-life care between the acute and community has driven the development of shared training material and more effective collaboration.

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8.

Dementia and Care Homes

The remit given for engagement with Dementia was primarily around care homes. The SCIE research briefing (Moriarty, Rutter, Ross, & Holmes, 2012) provides homes with a clear steer about the importance of ACP and their responsibility to involve their residents in discussions about advance planning even when they are considered to have lost capacity to direct their care. The Six Steps facilitators were completing their work with Care Homes and have now moved on to work with Domiciliary Care. Over the duration of their programme, 50% of all care homes in Cumbria completed the six steps to success process in its entirety. The programme had contact with 100% of homes, and the vast majority of homes engaged with the programme at some level. This represents a significant commitment to improving end-of-life care for care home residents and is a strong foundation upon which to build for the future. The vision for DR was to focus on improving end-of-life care for people with dementia living in care homes (Department of Health, 2009).

Approach:  

The DR and Six Steps facilitators worked together to deliver an additional Dementia care module within the 6 Steps programme open to all homes, not only those enrolled in Six Steps.

Care home forums were being established under Six Steps, and DR facilitators made contact to offer information, advice and training.

Achievements: 



Homes across the county engaged with the DR training session and put in place principles of care outlined on training. o Furness and the South Lakes held 7 sessions: there were 86 attendees representing 26 homes. o In Copeland and Allerdale there were 6 sessions, with 155 delegates, representing 28 care homes. o In Carlisle and Eden 6 sessions were delivered, with 65 attendees representing 19 homes. o Comments from the evaluations, included: ‘Many great ideas and approaches to help provide person centred care’ and, ‘This would be good training to have in-house. Excellent course’ There is evidence that homes are taking DR on board and in some homes, strides are being taken to firmly embed DR into practice.

Example: A patient living at home with extreme short term memory loss and Facilitators supported by domiciliary care, became agitated when carers came in, asking for provided a session his wife to be called. If staff informed him that his wife had died some years ago, to CQC inspectors he became agitated. Due to concerns about “lying” to patients and for the from across the benefit of inexperienced staff a EHCP was devised stating how to react and county following suggestions of what to say. Interestingly he knew she would not be “out at the concerns around shops” after dark and a second set of suggestions needed to be made. The effect the roll out of DR in was that he was able to remain at home, was better managed, the domiciliary care homes. As a carers felt that they were included in the planning, and communication was improved between all involved in the patient’s care. result, there is now a guidance document available to inspectors and care homes about what will evidence a home is working within DR and outlining roles

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and responsibilities for staff. This helps all concerned to understand what homes can reasonably be held accountable for and what needs to be taken up with other professionals. CQC inspectors in Copeland are checking whether homes have had DR training and adding it as a recommendation in the report that they contact DR facilitators to arrange. The reports outlining these recommendations have not been published at the time of printing.

DR is also having an impact for people with dementia not living in a care home. Case evidence suggests that gradually increasing numbers of documents are being used by health and social care professionals in order to manage the care of people living with dementia in their own homes, supported by carers.

The facilitators also worked with the county council and NHS Cumbria to update the Cumbria Dementia Care Pathway (Cumbria County Council and NHS Cumbria, 2014) in relation to end-of-life care.

Challenges: 



Initially there was difficulty resulting from CQC inspectors not accepting dementia care environments work (Sheard, 2012) that had begun in some care homes, which was discouraging for staff and families of residents. This was fed back to the Adult Social Care contracts team. There was also an issue around DNACPR recording, as there appeared to be a lack of standard approach across inspectors/inspections; this led to confusion around requirements for homes. Guidelines were produced for inspectors and homes to help clarify role and responsibilities of homes re: DNACPR (appendix vi).

The other major challenge is around early identification and diagnosis of dementia and ensuring that people are aware that they have a right to make choices, preferences and decisions about their future care known. The diagnosis is made by a variety of professionals, and patients enter the system at varying points, it doesn’t appear that people with dementia in Cumbria have any one point of contact around diagnosis. This was a huge challenge in capturing people with dementia early enough on their journey to enable them to fully take advantage of their rights and make choices. In addition, sickness in the MH team management meant the timing of DR was difficult for them. This has been acknowledged by the DR team and work will continue in this area.

Sustainability: 

As the Six Steps programme moves into training for Care Agencies each facilitator has established a regional forum to provide opportunities for care homes to be updated and receive training. These forums can become a platform for keeping care homes updated about ACP and DR, as well as providing an opportunity for care homes to raise any concerns and issues they have about DR implementation.

Example: Realising the need for the GP surgeries and the Care Homes to work more collaboratively, the Kendal practices have jointly employed an Advanced Nurse Practitioner to work with the care homes in the area. One of her key objectives is to facilitate ACP and DR within the homes. This involves education of the staff, modelling best practice around having end of life care conversations and making sure that the correct documentation is in place.



The loss of the Dementia Care Advisory role from the Alzheimer’s Society and working with mental health services is a huge disappointment, and further work is required in order to ensure that everyone

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is aware of their right to make choices about their future care at the point of diagnosis. Some of the work undertaken around public engagement will feed into this, but facilitators are keen to further engage with mental health services and memory clinics where they have been established.

DR facilitators were able to support the Six Steps Facilitators in the delivery of sessions to care homes in the region, providing an understanding and awareness of the needs of patients with end stage dementia. These sessions were well received and positively evaluated but also highlighted further work that was required in terms of the obvious need for ACP to happen much earlier for patients with dementia, and practical support in end-of-life care. It is disappointing not to have gone further in establishing the provision of information and support around Advance Care Planning as standard for people being diagnosed with dementia. This remains the goal, and facilitators will continue to work with mental health services to ensure that this is embedded in practice and that an ongoing conversation for people up to and beyond their loss of legal capacity becomes standard practice. However, in achieving the aims and objectives for people with dementia living in care homes, it is possible to be encouraged that this aim has been met. Work with nursing homes continues, both for people with dementia and those with other long term conditions, but together with the Six Steps facilitators, the foundation that has been laid will continue to be built upon in the next phase of the DR project.

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9.

Public engagement

There is an argument that states that Advance Care Planning is the proper concern of public health and that focusing on health, social and palliative care is only treating the symptom of a wider public issue (Tilden, Corless, Dahlim, Ferrell, Gibson, & Lentz, 2012). The USA experience shows however, that while a compelling argument, this is only part of the problem (Fineburg & Cohen Stein, 2013); making the public aware only goes so far towards people actually making decisions about their future care, health and social care professionals have a key role. In the UK engaging the public in conversations about death and dying is fraught with difficulty; death and dying have been labelled the last taboo. The Dying Matters Coalition has been working to address this by encouraging people to talk about their wishes towards the end of their lives, including where they want to die and their funeral plans with friends, family and loved ones (Dying Matters Coallition, 2009). Voluntary organizations have a huge part to play in both raising awareness about people’s right to make choices, and in supporting them to have conversations about what they want and either completing the documents or signposting on.

Approach:   

Contact was made with larger organisations such as Age UK in each area to develop links and find out about their activities and reach their members.

Approaches were made to groups such as Mothers’ Union, Rotary, etc, to begin to spread the word about the fact that people have a right to make decisions about their future care, and the DR project.

Facilitators looked to fully utilise the media attention on death and dying during Dying Matters (DM) week in May.

Achievements:   

Contact was made with patient groups, site specific nurses and local groups where the opportunities arose and often a talk to one group led to invitations to speak to others.

Deciding Right newsletter items were published in many of the voluntary organisations (appendix ii).

Facilitators spoke to several groups, finding that the experience of speaking to the public is very different to that of training health and social care professionals. These usually entailed lively interactions from the Example: One proactive GP surgery invited the facilitator to speak at their lively Public public, often Participation Group (PPG). They invited other speakers to cover different aspects of continuing well palliative care planning: Hospice at Home, probate specialists and the Carers after session Association who are rolling out an LPA service. They usually attract about 20 patients was due to from the surgery. On the stormy night of this PPG, there were over 70 people that finish. They had come from all over the area and from other surgeries; they’d heard it was found that a happening and wanted to know what was being said. The evening was a huge different success, every leaflet, worksheet and every piece of paper was taken from the stand, approach was and people brought their experiences and questions both in the public forum and to required and the stand after the talk. As a result of this talk, the facilitator was invited to a whole developed practice learning time event for the whole staff at the GP surgery. resources specifically for

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use with the public.

Patient groups in particular registered their desire to have their say and influence care and enthusiastically registered their interest with professionals.

Dying Matters (DM) Week was an opportunity to encourage the public to talk about death and dying, and raise awareness about their right to make decisions in advance about their future care. There were many public events at libraries, supermarkets and other public spaces and even a travelling bus display in South Cumbria.

Example: At one session during DM week a Death Café style event. A light-hearted quiz about death was devised and made available. Over coffee and cake some participants engaged, asked profound questions and requested information/advice. One person approached to organisers and was vocal in expressing their disapproval of the session and the idea of talking about death. This highlights the polarisation that this topic can provoke.

Challenges: 

 

Example: A minibus road show was held for two days during DM Week 2014. The minibus visited Barrow, Grange, Kendal and Ambleside stopping at each place to give out leaflets and chat to passers-by. Comments from the public were telling: ‘I’ve sorted out our funeral plans but you have made me realise the importance of preparing for our future care too’ and ‘I don’t want a lot of fussing about at the end of my life. I want my family to keep it simple. I guess I need to speak to them about it’.

The sheer number and wide range of groups that could be contacted was a challenge.

There are a lot of the general public, and facilitators felt that although it was a hugely important area of work, in the time available they weren’t able to do more than make a start.

It was sometimes a struggle to tread the line between raising awareness and proactively engaging people. It was important to be conscious of the fact that some people (a small minority) are outraged at the idea of even having their awareness raised.

The media has not always been favourable to palliative care issues (Liverpool Care Pathway, DNACPR) and not always reported items in a balanced way. Information was made available about DM Week to local media but apart from some comment on the Monday, it was generally ignored.

Sustainability:    

Facilitators plan to offer as wide a range of written leaflets/posters for use in public spaces as possible; plans are underway for a practical ‘how to’ booklet to supplement the information leaflet.

It will be important to utilise the skills of the hospice marketing teams to help guide the next phase in make use of the media in raising awareness.

It will be important to continue to take up invitations to speak to public groups wherever possible and continue to maintain the momentum.

Facilitators spent long hours preparing the awareness campaign, and will learn from the 2013/14 experiences to plan for DM Week 2015.

Facilitators have found that there is a real appetite in certain sections of the public to hear and talk about this, to have a space in which to ask questions and share experience. However, it is clear that this is not the case for everyone. In coordinated activities over DM Week, facilitators found that the culture of each place plays a part in the conversations and engagement people are prepared to have; and this is something to be mindful of as the project moves forward.

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10. Other areas There have been some achievements, difficulties and areas of work that haven’t neatly fitted into the sections expounded above. 

Yellow Folders: One of the key issues with providing patients with DR documentation is that they need to be able to keep them somewhere where they will be found if they become unwell or lose capacity.

Quite early on in the implementation process it was agreed that, if a patient had any DR documentation, the originals would be kept in a yellow popper envelope in the person’s home. A front cover sheet was developed to identify the folder as ‘Deciding Right’ and facilitators have begun to disseminate these to surgeries and other teams. These documents can then be shown to any health or social work professional involved in the patient’s care. The folders have been widely accepted and there are examples of patients being admitted for treatment and discharged with all the documents in place. The folder is designed to allow documents to be easily recognisable throughout the patient’s journey; there is no need to keep revisiting the patient’s choices except to review that they still feel the same way about their choices. o As the original documents are patient held, they have full control over who sees them and they can adjust them if their wishes change. With increasing numbers of patient’s having yellow DR envelopes it is hoped that they will become increasing recognised as a way of communicating patient’s end-of-life wishes.



Public information leaflet: The team learnt very early on that there was a need to develop a leaflet for the public in order to introduce the subject from the perspective of rights and choices. The idea was that GPs and other professionals can refer people to the leaflet as a first step and ask them to come back if they want to talk through anything. The leaflets have been widely used and well received by GPs in particular. Following months of work and revision, the final version of the leaflet is being professionally updated and printed. It is being added to admission packs, review meeting notes, contingency planning, information packs; it is available in waiting rooms and public information centres; and some GP practices are routinely sending it out with their flu jab mailings, or with repeat prescriptions (appendix ii).



Links With the North East: The project was initially developed by the North East Strategic Health Authority end-of-life clinical innovation team, chaired by Claud Regnard. One of the challenges of adopting this project from the NE has been maintaining meaningful working relationships, and effective links. This has been particularly difficult in a time when Cumbria has not had a Consultant lead for Palliative Care. It has been difficult to keep abreast of what’s happening in the north east, although facilitators have maintained some contact, particularly with Claud. He has been keen to support DR implementation in Cumbria and given presentations at PLT sessions in the south and north of the county. As both the NE and Cumbria are planning a public launch of DR in the near future it is hoped that this can be planned collaboratively and have a coordinated release. o DR has been adopted by the Wirral and implementation started in February of this year. They have some excellent resources available on their website: (https://www.wirralccg.nhs.uk/WACC/Professionals/dnacpr-videos-and-ehcp-supportinformation.htm)

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

Website: The Cumbria Palliative Care website has been undergoing a period of updating, including the addition of Deciding Right information. Unfortunately this has been a slow process and some of the forms on the website are still not correct or usable. The absence of an agreed Advance Statement form is also an issue. There is a need to look at the printable DNACPR form on the website, it currently prints over three pages with the review section on page two. CQC picked up on these forms in nursing homes in the south of the county and GPs have requested a printable form directly from the facilitators.

Children’s services: It has not been possible to meet all the aims and objectives, and facilitators are aware that work with children around Deciding Right hasn’t made much headway. The facilitators were invited to speak at a northern network study day organised by the children’s team on the transition from child to adult services, but unfortunately this was cancelled. A session was delivered to Jigsaw Children’s Hospice, to begin to engage staff with the project. The two hour session was delivered jointly with one of the hospice doctors and focused on the MCA and BI as well as the DR documentation. In discussion it became clear that the concerns are much more around transition and how to manage the expectations of the parents of the children with life limiting illness. This is particularly difficult for parents whose children are never going to have capacity to make their own decisions; a best interests process for these families will be a challenge. One of the ways to begin to work with parents was felt to be making the Emergency Health Care Plan (EHCP) a standard part of care: an emergency plan is worked out with the child, the parents and the medical and nursing team, and is then reviewed at each admission. This would also have the added benefit of enabling closer working with other community services.

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11. Conclusion The implementation of Deciding Right in Cumbria has had successes as well as challenges. It has been an evolving process that has required facilitators to adapt to meet the needs of a wide range of professionals and non-professionals. The project’s success has not only required facilitators to impart an understanding of ACP and the regional documentation, but also to encourage a change of culture. Death and dying continues to be considered taboo and a subject to be avoided, even by some health and social care professionals. Progress has been made, but this is clearly the beginning of a long process.

The training that has been delivered has evolved over the eighteen months of the project. To begin with the facilitators were training specifically on the Finding Your 1% and DR documentation and its use within the region. It soon became clear that there was a need to do much more background work to support professionals at several stages before they began filling out the forms. This centred on initiating and having end-of-life care conversations, along with improving understanding about capacity and best interests. These elements were incorporated into training sessions wherever possible, which led to various teams and professional groups requesting follow up sessions specifically on MCA, BI and ‘how’ to have the conversation with people.

The main challenge was the remit of ensuring that all health and social care professionals, regardless of grade/position, have a basic level of understanding about ACP and DR. Patients with end-of-life care needs usually require input from many different departments of the health and social care provision. Lack of effective communication with patients and between the professionals is the main reason why end-of-life wishes are not met. ACP requires an improved level of cooperation and collaboration that focuses on their needs rather than the needs of the organisation.

All three facilitators believe that there are positive signs of change. The aims and objectives set out at the beginning of the project were: to educate health and social care professionals in Cumbria about DR, and deliver an understanding and awareness of the end-of-life needs of dementia patients who reside in care homes. Facilitators are confident that health and social care professionals are much better informed about DR and that significant inroads have been made to changing practice with all patients at end-of-life.  There is a consistent approach to DR across Cumbria and the profile of DR has been raised in every area of health and social care services.  Through the Six Steps sessions delivered, care homes have an increased understanding of the specific needs of people with dementia at end-of-life.  There has been a substantial increase in the numbers of patients on the PCSR’s but the results show that there is still room to improve. GP PSCRs no longer only list patients with cancer, they now include those patients with life-limiting conditions (including MND and Dementia) and the frail elderly. This points to an improvement in choice and control for all dying patients. There has been a change in the numbers of people having advance care planning discussions and documentation completed, but figures from the LIS have been difficult to interpret due to the lack of a read code for ACP discussion, and other practices not identifying patients as red, amber and green.

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form-filling exercise. This means that more people are being made aware of the options they have for their end-of-life care and therefore being able to make their wishes known. Some organisations involved in end-oflife care are including DR into their policies and procedures, and it is anticipated that this strategic and organisational incorporation will continue over the next two years.

One of the main tenants of the success of the project has been the multi-professional cross-hospice team that was established to implement it. The three facilitators developed an excellent working relationship. They planned strategies, created and shared training materials, reflected together on how things were working and supported each other to change approach and strategy. The mix of experience across both health and social care provided a breadth of understanding of the day-today issues faced by those implementing DR. The strong DR team reflected the collaborative beginnings of the project in Cumbria. It’s interesting to consider the Commission into the Future of Hospice Care (The Help the Hospices Commission into the Future of Hospice Care, 2013), which highlights the need for hospices to work together in collaboration, share resources and good practice, tackle the problems faced by community staff together rather than in competition, and work across health and social care boundaries. It can be argued that Cumbria’s approach to DR has reflected this model of working and gone further in the joint commissioning of a service to improve practice across health and social care in the region. The health trusts and adult social care involvement with the hospices, together with the commitment of commissioners and policy teams has been proof of what is possible when whole health and social care communities work together.

End-of-life care will never be easy and it will never be possible to get it right all of the time. However, it is reasonable to assume that a necessary first step to enable professionals, families and communities a fighting chance of being able to meet people’s needs, wishes and preferences is to ensure that we ask people what they want. Deciding Right has made strides in establishing a consistent approach to ACP in Cumbria, and facilitating the beginning of a meaningful conversation across health and social care about end-of-life care provision. The project has helped to foster a change of culture around advance care planning conversations with patients, and gone some way to part-lay the foundations for the provision of a sustainable high quality palliative care service in Cumbria.

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12. Recommendations These are the result of long consideration by the facilitators and represent overarching suggestions to feed into the second phase of the project.

1. That the project be continued. In order for the work completed to grow and develop into being standard practice, there is a need for ongoing input, training and education.

2. That Deciding Right be part of all health and social care professionals induction, and an ongoing part of mandatory training. This is the only way to make sure that this approach to advance care planning is sustainable. Phase two to consider the possibility of providing train-the-trainers courses for link professionals in each area, for example: district nurses, SW locality teams, acute hospital wards etc.

3. That Deciding Right is incorporated as a core part of all health care and social work training courses in Cumbria.

4. That the Cumbrian hospices, as specialists in palliative care, be places of best practice for advance care planning and Deciding Right.

5. That there is much greater contact and collaboration with the North East and across the north of England where Deciding Right is being rolled out.

6. That the Cumbria Palliative Care Website be updated as a matter of urgency.

7. That facilitators work closely with the mental health teams where there are gaps in memory clinic provision, to ensure that every person with a new diagnosis of dementia has access to information and advice about making plans for their future.

8. That the project consider outreach to schools via the citizenship and PHSE co-ordinators to begin to engage young people, through their existing learning curriculum, about issues surrounding death and dying, and specifically about advance care planning.

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References Barclay, & Forrest. (2007). ‘Palliative care: a task for everyone’. British Journal of General Practice , 57: 503.

Clark, D., Armstrong, M., Allan, A., Graham, F., Carnon, A., & Isles, C. (2014). Imminence of death among hospital inpatients: Prevelent cohort study. Palliative Medicine , 1-6.

Cullen, R., Chaddock, R., & Hearn, F. (2013, May 20). What's special about palliative care social work? Retrieved May 31, 2013, from ehospice: http://www.ehospice.com/uk/Default/tabid/10697/ArticleId/4838/ Cumbria County Council and NHS Cumbria. (2014, January). Cumbria Dementia Pathway. Retrieved from Cumbria County Council: http://www.cumbria.gov.uk/elibrary/Content/Internet/327/890/40885113529.pdf Deciding Right working groups. (2012, September). Deciding Right - an integrated approach to making care decisions in advance. Retrieved from Northern England Strategic Clinical Networks: http://www.nescn.nhs.uk/decidingright Department of Health. (2008). End-of-life Care Strategy. Promoting high quality care for all adults at the end-of-life.

London: Department of Health.

Department of Health. (2009). Living Well With Dementia: a national dementia strategy. London: Department of Health.

Detering, K., Hancock, A., Reade, M., & Silvester, W. (2010). The impact of advance care planning on end-of-life care in elderly patients: randomised controlled trial. British Medical Journal , 340:c1345.

Dyingmatters. (2012). Dying Matters. Retrieved January 15, 2014, from Dying Matters: http://dyingmatters.org Fineburg, G., & Cohen Stein, I. (2013). Advance Care Planning in the USA and UK: A Comparative Analysis of Policy, Implementation and the Social Work Role. British Journal of Social Work , 43 (2): 233-248.

Gomes, B., & Higginson, I. (2008). Where people die (1974-2013): past trends, future predictions and implications for care. Palliaitve Medicine , 22:33.

Holloway, M. (2013, May 14). Supporting people to live and die well: social care at the end-of-life. Retrieved May 31, 2013, from ehospice: http://www.ehospice.com/uk/Default/tabid/10697/ArticleId/3981/ McDonald, A. (2014, June 25). Communication between NHS clinicians and incurably-ill patients remains poor – and risks getting worse. Retrieved July 02, 2014, from ehospice: http://www.ehospice.com/uk/articleview/tabid/10697/articleid/11011/language/en-gb/communication-between-nhsclinicians-and-incurably-ill-patients-remains-poor-and-risks-getting-worse.aspx Mitchell, G. (2002). How well do general practitioners deliver palliative care? A systematic review. Palliative Medicine , 16: 457-64.

Moriarty, J., Rutter, D., Ross, P., & Holmes, P. (2012). End-of-life care for people with dementia living in are homes.

London: SCIE. National End-of-life Care Programme. (2012). Advance Care Planning: It all ADSE up. London: National End-of-life Care Programme.

NHS End-of-life Care Programme, The College of Social Work. (2012). The route to success in end-of-life care - achieving quality for social work. London: NHS End-of-life Care Programme.

Sheard, D. (2012). Developing Butterfly Services. Retrieved January 17, 2013, from Dementia Care Matters: http://www.dementiacarematters.com/ The Help the Hospices Commission into the future of hospice care. (2013, October). Future ambitions for hospice care: our mission and our opportunity. Retrieved January 29, 2014, from www.helpthehospices.org.uk: www.helpthehospices.org.uk/commission Tilden, Corless, Dahlim, Ferrell, Gibson, & Lentz. (2012). Advance Care Planning as an urgent public health concern.

Nursing Outlook , Volume 60, 6:418-419.

Zheng, L., Finucane, A., Oxenham, D., McLoughlen, P., McCutcheon, H., & Murray, S. (2013 ). How good is promary care at identifying patients who need palliative care? A mixed methods study. European Journal of Palliative Care , 20(5); 216222.

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Appendices

i. Aims and objectives and Terms of Reference Aim and objectives of Deciding Right (Cumbria)

Aims: 1. To educate health and social care professionals in Cumbria about Deciding Right: its framework and supporting documents.

2. The delivery of an understanding and awareness of the end-of-life needs of dementia patients who reside in care homes as an adjunct to the existing Six Steps to Success programme.

Objectives:                

Ensure there is a consistent approach to the delivery & implementation of the Deciding Right framework across Cumbria.

Support all GP practices and support services, within the identified geographical area, in the implementation of Deciding Right. Support services will include practice staff; community services; social care staff and specialist outreach staff Raise the profile of Deciding Right in all care settings across the region at every opportunity.

Provide training and support on the adoption, and use of, the principles and tools identified in Deciding Right to support best practice in end-of-life care for all patients irrespective of diagnosis. This will include the specific needs of patients that have dementia and their family carers.

Deliver awareness and understanding of the specific needs of patients who reside in care homes that have dementia. This will be offered to all care homes that embark on the ongoing Six Steps to Success Programme.

Audit the care homes’ experiences of GP and community staff dealing with advance care planning and the Deciding Right process.

Increase the number of patients, particularly with MND or dementia, who have been offered advance care planning at the point of diagnosis, to ensure they have an opportunity to record their wishes before losing capacity.

Monitor progress with all aims and objectives of the project Produce an audit of: anticipated numbers/ professions to be included within the parameters of this project; take-up of the training sessions by GP practice staff/professionals, support services organisations, and support services professionals/roles.

Identify need arising from the sessions, which will not be fulfilled through delivery of DR, e.g. gaps in service, any issues identified, and feedback recommendations to the steering group.

Ensure the sustainability of Deciding Right for the future and in all care settings.

Submit quarterly reports to NHS Cumbria End-of-life Care Workstream detailing performance against the agreed action plans. These reports will also include details of any reported incidents; complaints, compliments; concerns, comments and, where appropriate, actions taken.

Increase the amount of GP practices achieving at least 0.9% of the NHS 1% campaign.

At least eighty per cent of the identified 1% campaign will be offered, or will have completed, some advance care planning documentation.

The DR facilitators will have at least one face to face meeting with a GP practice member.

Patient satisfaction with DR will be monitored through participating practices and organisations, and through evaluations of public education and events.

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TERMS OF REFERENCE Deciding Right STEERING GROUP Membership Nominated Representatives from the following organisations:  Eden Valley Hospice  Hospice at Home West Cumbria  St Mary’s Hospice Ulverston  Care Sector Alliance Cumbria  NHS Cumbria  Patient representative from Cumbria End-of-life Care Workstream  Children’s Services  GP lead from each locality  Adult Social Care  Cumbria Partnership Trust  CHOC  NWAS  Acute Trust End-of-life Care Group The following will also attend:  DR Facilitator for Carlisle and Eden  DR Facilitator for Allerdale and Copeland  DR Facilitator for South Lakes and Furness  Mental health Services  BME services Other members may be co-opted by the steering group.

Purpose of the group is to:  Support the implementation of the Deciding Right framework and supporting documents across Cumbria.  Monitor its progress against the overall aims and objectives set at the outset of the project.  Receive regular reports, updates and audits from the DR facilitators.  Raise the profile of Deciding Right in all care settings across the region at every opportunity.  Consolidate feedback to NHS Cumbria End-of-life Care Workstream  Ensure the sustainability of Deciding Right for the future and in all care settings.  Ensure there is a consistent approach to the delivery & implementation of the Deciding Right framework across Cumbria.

Reporting Minutes, relevant reports, audits and updates to NHS Cumbria End-of-life Workstream.

Frequency of Meetings Two monthly: however extraordinary meetings may be arranged with prior agreement of the steering group.

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ii. Resources Public information leaflet:

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Conversations Matter: The 10-15 minute exercise is designed to help participants recognise that it’s the conversation that matters, not the paperwork. From the bubbles participants notice that the kinds of things people want to talk about in relation to end-of-life care are not rocket science, they are often around basic care and what health and social care professionals may take for granted. They are invited to look through the bubbles and choose three that jump out as being important to them, then pick their ‘top’ wish. The group is then split into pairs and one is invited to what the other person has chosen and why; they are given 2 minutes; after two minutes they swop over and the other person talks about their choice. The leader then checks in with the group, generally participants are surprised that they have been able to complete it. The group then note that it was impossible to predict what the other person was going to say; sometimes people chose the same ‘top thing’, but usually for different reasons; that we generally want a whole variety of things; and that it doesn’t have to take a long time. In closing, the leader reflects to the group that they’ve all just had an advance care planning discussion: the person that knows most about what you want at end-of-life is sitting next to you now, and that they may want to talk to other people about that too as it’s unlikely their colleague would be the first port of call in an emergency.

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Poster Presentation: How implementing Deciding Right in Cumbria supports good practice in Advanced Care Planning (ACP): a case study Deciding Right (DR) is an integrated approach to making decisions about future care. It draws together statute and good practice for ACP with children, young people and adults across all sectors of health and social care, and embeds this through shared documentation.

It starts with a conversation between the professional and patient about their right to make care decisions in advance. The project is jointly hosted by three of the independent hospices in Cumbria, and is strategically linked with the 1% GP palliative care registers campaign.

Case Study We will present a case study of Betty, 76yrs, with end stage COPD and multiple comorbidities. This is a complex case featuring repeated hospital admissions and fluctuating capacity around end-of-life care. Through exploring this case history we will show how DR made a real difference to choice, control and sense of self for Betty, and to the health and social care management of her care. We will demonstrate how DR was important in facilitating multi-disciplinary working and critically, cross agency information sharing at endof-life.

Discussion Establishing DR shared documentation across the whole of health and social care has been crucial in rolling out ACP conversations and this approach is effecting change in organisational culture. Training and education for professionals builds capacity within the existing workforce to change current practice, and engagement with students helps to futureproof the principles of DR in Cumbria.

Learning points 1. Making ACP conversations the responsibility of all professionals is key to ensuring that conversations happen early enough in people’s journey for them to be well thought through and meaningful.

2. Agreeing and adopting shared documentation for Health, Social Care and 3rd Sector organizations is fundamental to ensuring that ACP conversations held are recorded appropriately and in a meaningful format.

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Newsletter articles published This article or a version of it appeared in many of the voluntary sector and disability group news letters.

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iii. Evaluation Form Deciding Right Evaluation Questionnaire 1. Before the session, or thinking back to the beginning of the session, how would you rate your understanding and confidence with Deciding Right?

(1 being low and 10 being high

1 2 3 4 5 6 7 8 9 10

2. How satisfied do you feel with today’s session on Deciding Right?  

Very satisfied Satisfied

Not satisfied Not at all satisfied

 

3. Overall, how useful to your work/practice did you find the session on Deciding Right?  

Very satisfied Satisfied

Not satisfied Not at all satisfied

 

4. What was the most important thing in today’s session about Deciding Right? .................................................................................................................................................................................. ..................................................................................................................................................................................

5. What aspect of this session was least useful for you? .................................................................................................................................................................................. ..................................................................................................................................................................................

6. Now at the end of the session, how do you rate your understanding and confidence with Deciding Right?

(1 being low and 10 being high)

1 2 3 4 5 6 7 8 9 10

7. What are you going to do now, tomorrow, next week as a result of today’s session about Deciding Right? .................................................................................................................................................................................. ..................................................................................................................................................................................

Any other comments? .................................................................................................................................................................................. .................................................................................................................................................................................. ..................................................................................................................................................................................

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iv....Local Incentive Scheme

End-of-life Deciding Right Framework – Practice Guidance In relation to CCG A Learning and Improvement Collaborative For Primary Care Local Incentive scheme (LIS) 2013/14 The following is a guide, including the Read codes, which outlines the information that is required to progress the Deciding Right element of the LIS. Deciding Right is a new initiative which aims to integrate the principles of making advance care decisions for all ages. It brings together a number of elements: Advance Care Planning (ACP), the Mental Capacity Act, Cardiopulmonary Resuscitation decisions and Emergency Healthcare Plans.

Deciding Right identifies the triggers for making care decisions in advance, complying with both current national legislation and the latest national guidelines. At its core is the principle of shared decision making to ensure that care decisions are centred on the individual and minimise the likelihood of unnecessary or unwanted treatment.

In summary practices are required to: Compile and categorise a practice Palliative Care register – estimated this will have approximately 1% of the practice population on it  Establish review meetings at least every three months  Implement the Deciding Right documentation (DNAR – Do Not Attempt Resuscitation, ADRT – Advance Decision to Refuse Treatment, and EHCP – Emergency Health Care Plan)  Record those patients with the recommended actions in place at each stage: Compile and Categorise a Palliative Care Register As part of the Quality & Outcome Framework (indicator PC001) practices are expected to establish and maintain a Palliative Care register of all patients in need of palliative care/support irrespective of age.

A list of Read codes used to populate this Palliative Care register is included in GMS QOF READ CODES & CRITERIA 2013/2014 V25.0 & 25.1 supplied and updated by Cumbria PRIMIS Informatics, based on the latest QOF Business Rules. Any changes to the Read code criteria for PC001 in future Business Rules releases will be adopted for the LIS Palliative Care register.

The LIS states that the Palliative care register will be roughly 1% of the practice list size. It is acknowledged that practices are unlikely to have 1% of the patient list receiving palliative care as defined by QOF. The intention of the Deciding Right initiative is to extend Advanced Care Planning to patients who may die within a year but are not necessarily receiving palliative care. The use of the Implementing Deciding Right in Cumbria.

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‘surprise question’ may help clinicians identify patients who may benefit from an advanced care planning conversation.

In such cases the following read code should be used: 9NgT Healthcare professional would not be surprised (Gold Standards Framework surprise question) For the purpose of the LIS, a practices’ Palliative Care register will be those patients with a QOF Palliative Care register Read code recorded and/or 9NgT recorded.

Implement the Deciding Right Documentation You will receive the following ‘mergable’ forms along with the installation instructions from PRIMIS. One or more of these forms should be completed (as appropriate) and attached to the patient’s electronic clinical record. In addition the following Read codes should be used to record that the form has been completed for the patient concerned:

DNAR- Do Not Attempt Resuscitation 1R10 Not for attempted CPR (cardiopulmonary resuscitation) ADRT – Advance Decision to Refuse Treatment 9NgG Has ADRT (advance decision to refuse treatment) (Mental Capacity Act 2005) EHCP – Emergency Health Care Plan 8CME Has end-of-life advance care plan Data Recording Practices should record all the Read codes in this document as a priority 1 (on Vision) or Significant Active Problem (on EMIS), to enable this information to be displayed in patient summaries and merged into the referral letters etc.

Advanced Care Plan discussed The LIS requires practices to record that an advanced care plan discussion has taken place.

Unfortunately there is currently no Read code available for an ACP discussion. PRIMIS have applied for a new code for this which should be available later in the year. You will be informed of this new code once available, but in the interim record the ACP discussion in free text.

Red/Amber status patients The LIS requires practices to record that an ACP is discussed with 50% of Red/Amber patients (i.e. those estimated to have weeks or months left to live); and of these, 50% to have 1* or more of the above Deciding Right forms completed. *LIS version 30May13 stated 3 documents to be completed – this has been revised to one or more.

No suitable national Read codes are currently available for the colour classifications of Deciding Right, therefore the following Read codes from the Gold Standards Framework (GSF) prognostic indicators should be used as listed below, (NB: the RAG status below and corresponding time frames differ from the key metrics above) 8CM16 Gold standards framework prognostic indicator stage B (green) - months prognosis (to be used for Deciding Right amber patients) 8CM17 Gold standards framework prognostic indicator stage C (yellow/amber) - weeks prognosis (to be used for Deciding Right amber patients) 8CM18 Gold standards framework prognostic indicator stage D (red) – days prognosis (to be used for Deciding Right red patients) Implementing Deciding Right in Cumbria.

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Other useful codes In addition, the following useful Read codes have been identified to record supporting components of Deciding Right.

9W5 Lasting power of attorney personal welfare 9e0 GP out of hours service notified 9G8 Ambulance service notified of patient on end-of-life care register Three monthly review meetings Practices will be expected to keep a record of their review meetings including a list of attendees.

Data extraction and reporting MIQUEST queries will be run at the end of each quarter to extract activity data for the quarter concerned. These figures will be reported back to practices and the CCG by PRIMIS to enable activity to be monitored and potential data quality issues to be identified and resolved.

It is the practice’s responsibility to check activity levels included in these reports and ensure that it reflects actual activity. Additional MIQUEST queries will be run at the end of the financial year to enable year end validation.

These queries will identify: the number of patients on the LIS Palliative Care Register; the number of Red/Amber patients with Deciding Right forms completed; and the number of Red/Amber patients with ACP discussion recorded (once new Read code is available).

At the end of the financial year if MIQUEST data doesn’t demonstrate that practices have achieved the metrics set out for this element of the LIS, an appropriate claw back will be made.

Useful Information Links You may wish to look at the information in the following links http://www.theclinicalnetwork.org/end-of-life-care---the-clinical-network/decidingright http://gp-palliativecare.co.uk/ Deciding Right Facilitators Contact Details Facilitators are in post to support practices with implementation of the Deciding Right framework Copeland & Allerdale: Mr Mel Laycock Tel Number: 0777 554 1410 Email- melvyn.laycock@cumbria.nhs.uk Carlisle and Eden: Becky Chaddock Tel Number: 0777 618 6815 Email- Rebecca.chaddock@edenvalleyhospice.co.uk South Lakes and Furness: Carol Bradley Tel Number: 0784 151 4260 Email- carol.bradley@stmaryshospice.nhs.uk

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Practice Managers’ Read Code Flow Chart At any clinical review consider:

Is patient moving to end stage disease?

Is the surprise question applicable? 9NgT

Add to Palliative and Supportive Care Register

Supportive and Palliative Care Register Review 8CM16 Prognosis of months/year

Review 3 monthly Allocate a lead clinician to discuss ACP NEW READ CODE Consider: DS1500 9EB5 Lasting Power of Attorney Advice 9W5

8CM17 Prognosis of months/ weeks

Review monthly Consider: DNACPR 1R10 ADRT 9NgG EHCP 8CME CHOC 9e0 & NWAS 9G8 notifications

8CM18 Prognosis of week/days

Ongoing review Consider: DNACPR 1R10 ADRT 9NgG EHCP 8CME CHOC 9e0 & NWAS 9G8 notification

Just in Case Prescribing

Additional DNACPR codes: DNACPR discussed with patient 67P0 DNACPR discussed with carer 67P1 If patient wishes to be resuscitated, use 1R00 (For attempted CPR)

Implementing Deciding Right in Cumbria.

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Year End Deciding Right Data 2013/14 Produced by NECS in partnership with NHS Cumbria CCG

Practice Population

Locality

Allerdale Carlisle Copeland Eden Furness South Lakes Cumbria

108,418 103,651 58,291 51,897 84,481 116,318 523,056

Patients on Palliative Care Reg inc who have died / left in 2013/14 1,206 874 711 545 694 1,467 5,497

% of Practice Population on Palliative Care Register 1.11% 0.84% 1.22% 1.05% 0.82% 1.26% 1.05%

2013/14: % of Practice Population on Palliative Care Register Locality

Cumbria

1.60% 1.40% 1.20% 1.00% 0.80% 0.60%

1.26%

1.22%

1.11%

1.05%

0.84%

0.40%

0.82%

0.20% 0.00% Allerdale

Carlisle

Locality

Patients on Palliative Care Reg inc who have died / left in 2013/14

Allerdale Carlisle Copeland Eden Furness South Lakes Cumbria

1,206 874 711 545 694 1,467 5,497

Copeland

Eden

Palliative Care Red / Amber Deciding Rights Patients 442 317 268 240 110 597 1,974

Furness

% of Red / Amber Deciding Right Patients on Palliative Care Register 36.7% 36.3% 37.7% 44.0% 15.9% 40.7% 35.9%

South Lakes

2013/14: % of Red / Amber Deciding Right Patients on Palliative Care Register Locality 50.0% 45.0% 40.0% 35.0% 30.0% 25.0% 20.0% 15.0% 10.0% 5.0% 0.0%

36.7%

36.3%

Cumbria

44.0%

37.7%

40.7% 15.9%

Allerdale

Carlisle

Palliative Care Red / Amber Deciding Rights Patients

Locality

Allerdale Carlisle Copeland Eden Furness South Lakes Cumbria

Copeland

Eden

Palliative Care Red / Amber Patients with DR Form Completed

442 317 268 240 110 597 1,974

Furness

South Lakes

% of Red / Amber Patients with DR Form Completed

179 128 80 135 16 238 776

40.5% 40.4% 29.9% 56.3% 14.5% 39.9% 39.3%

2013/14: % of Red / Amber Patients with DR Form Completed Locality

Cumbria

60.0% 50.0% 40.0% 30.0% 20.0%

56.3% 40.5%

40.4%

39.9% 29.9%

10.0%

14.5%

0.0% Allerdale

Carlisle

Implementing Deciding Right in Cumbria

Copeland

Eden

Furness

South Lakes

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v.

CQC care home guidelines

Deciding Right: what are we looking for? 

Evidence in the person’s notes that advance planning options have been discussed.



A record of the discussion preferably on one of the documents, i.e. DNACPR form or a note to explain why (i.e. that the person didn’t want to discuss it).



Evidence that demonstrates that this is part of an ongoing discussion/approach to giving people choice and control, for example, that decisions are revisited as either prompted by the person, or at a review.



An understanding from all staff members that all professionals and agencies (including domiciliary agencies and care homes) involved in a person’s care share the responsibility to ensure that: a) the individual knows that they have a right to make decisions about their future care in advance; and b) that they are supported to put documents in place to enable their wishes to be carried out.



Emergency Health Care Plans for people being managed in Care Homes and in the community: they are clear guidance about what to do in the case of a foreseeable emergency – is it an ambulance, or is it a CHOC call.



Photocopies of any Lasting Power of Attorney document (both the power for financial affairs, and the power for health and wellbeing) in the file (especially in care home settings) and clear evidence of ongoing consultation with the Attorney re: either financial affairs or care and intervention.



Evidence of ongoing liaison with GP with good two way communication and systems in place, for example the GP led special patient form being held by CHOC and an alert raised on the NWAS system that this person has had some advance planning conversations.

CARE HOMES: 

It is the responsibility of the home to ensure that Advance Planning documentation is recorded in the notes, and that all staff members are aware of and comfortable with their role and responsibility in ensuring that these wishes are carried out.



DNACPR is not a blanket policy: not every resident needs to have a form. Every resident may have a DNACPR form, but there needs to be evidence that it was considered either as part of a discussion with them or was a decision by the Doctor about the person’s individual health needs. It may be a cause to ask about practice in a home where every resident has an identical DNACPR – all with the same reason for the form; and/or they all have the same date. It is important to note that this may of course be due to, for example, the annual reviews carried out by GPs on the same day, it doesn’t necessarily mean there’s a problem, but it would be a prompt to find out what is happening.



It is up to the care home to ensure that:  The advance planning documents are easily accessible, up to date, printed, and preferably kept in a yellow DR folder in the notes. Of course, homes cannot be held responsible for things that are outside their control. GPs are responsible for the completion of the forms – it is their medical opinion. The homes are responsible for communicating with GPs, for example, about forms when they are out of date.  The documents (preferably in the yellow folder) go with the resident into hospital and are checked on return to ensure that all is still in order  This is part of an ongoing dialogue with the person – it’s not a one off paper exercise.

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vi.

Penrith Training outcomes ‘Let’s get it right’ Penrith Community Hospital Training: 'Let's get it right'. Evaluation Outcomes. March - July 2014

participant

satisfaction 4

useful to work 4

3

4

4

7

4

4

6

4

4

8

4

4

3 5

4 3

4 4

4

3

4

4

3

4

4

4

4

4

4

4

6

4

4

Understanding more about advance care planning options

Feel more confident in discussing with patients

3

4

4

Legalities and practicalities of actually applying this in practice

Print leaflets, disseminate to staff, having conversations around DR with patients I have in mind

5

4

4

Raising awareness and how I can implement this in patient care

6

4

4

Knowing what is out there and it being appropriate to all services

3

4

4

Discussions about the documentation and how to add this to our practice

Speak to my line manager, discuss how we implement this into our team practice Listen and be more aware of how it works & benefits of it with team/patients and to act with more knowledge.

Meet with my colleague tomorrow when we are discussing our documentation - looking to use the EHCP for the contingency planning and distribution of the leaflet in our documentation pack.

increase score 10

Implementing Deciding Right in Cumbria

most import ant thing How & when to have conversation "The whole session has exceeded my expectation and I am hopeful for future implementation." discussion about work situations

ways to bring up topic with patients and knowing what to do re: paperwork Everything - base line very low

what do as a result? talk to patients ensure my staff come to sessions

"I feel more confident to take this forward and discuss with patients, and also encourage family/friends to discuss and put things in place."

Feel more confident to bring this topic up and how to deal with it.

Have those conversations and be a bigger voice in the MDT - advocate for patient

All the different forms that are in place to help

Not to be afraid to have the conversation with patients

Knowing what forms there are and learning what DR actually means Open conversation, discussing forms that we'll hopefully start to see in patients homes.

I'm going to speak to my mum about her wishes.

Finding out about documents and options for advance care planning

Be more confident in approaching patients regarding these issues

More confident in discussing DR issues

Find out more information about GSF and how to use it with DR

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vii. An Introduction to Deciding Right: A Play.

Once upon a time long, long ago, in the depths of darkest Cumbria, a GP (red), a Commissioner (black) and a patient representative (green) were all getting together to do dark deeds....

Patient looks disinterested o Commissioner: I say, have you heard of this new Deciding Right initiative that Claud Regnard has come up with in Newcastle? o GP: No I haven’t, but we need a new initiative like a hole in the head. o I realise that, but this one is all about using the mental capacity act. o The MCA, that’s not new it’s been in force since 2005! o I know, but this is about patients making decisions about their care if and before they lose their capacity.

Patient suddenly looks up o They can do that now surely? o Yes they can, but we need to get you GPs & care professionals talking to their patients about these serious matters. o Getting us GPs talking to patients, now THAT is new.

Patient nods o But you see if patients don’t make their views known the professionals have to decide for them o So you want patients to plan their care in advance o Exactly, now what should we call that... I know let’s call it advance care planning. o And who is this Advance Care Planning aimed at exactly?

Patient continues to look interested o Well obviously you don’t want everybody doing it. How about that 1% thingy we are meant to be looking for anyway? o You mean those in the last year of life. o Yeah, that lot may desperate enough to try any initiative. o OK so we have this group and you want professionals to talk to them about advance care planning - so what will be the result? o Well one option is to discuss choices and make decisions about what is important to them. o Important to the professional...

Patient sighs o NO important to the patient!!! o Such as what? o Well such as, they would like to stay at home for their care, that they want carers, not family, to do their personal care or anything really. o Can it really be about anything? o Yeah that’s the good bit…it’s all about their wishes and values, what is important to them. It could even be something like them wanting a side room if they go into hospital o A side room, in a hospital?! That’s not a wish, that’s cloud cuckoo land! o That’s true but they could state a preference that’s all. It might not happen it will depend on circumstances, but the professionals will have do everything they can to comply with the patient’s wishes Patient tries to butt in o Isn’t this just like those living wills, advance directive thingy that you can get off the internet? o Sort of but this would be more accepted by professionals because it brings all those types of request under one format and one recognised form o So the patient would make this statement in advance o Yea but it needs a catchy name. I know how about calling it an Advance Statement. o OK and this Advance Statement would be legally binding on the professionals

Implementing Deciding Right in Cumbria

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o No, not legally binding, but the professionals would have to take it into account when deciding what’s best for the patient without capacity. o What happens if the patient wants to be more adamant about treatments?

Patient tries to say something again o Yeah that’s a tricky one. Another option is to have a more formal document that is binding, legally & professionally. o So a patient can demand whatever treatment they want! o No, nobody can ever demand treatment but they could refuse it. o So could a patient decide to refuse treatment in advance o That’s just what I mean but again the form would need a name, how about an Advance Decision to Refuse Treatment, that’s catchy.

Patient tries to speak again o Catchy or not this one is going to have to be very precise in its wording. o Obviously it will have to be valid and applicable and witnessed and everything. As I said its legally and professionally binding o Right let me get this straight. When the patient talks to the professional they come away with either an Advance Statement or an Advance Decision to Refuse Treatment. Do they have any other options? o There is one actually, well two really. One is to do nothing and let the professionals decide, but the other would be to appoint a Lasting Power of Attorney for health and welfare. o The professionals don’t do that?! o No. They don’t fill the forms in, but they should be able to give patients advice on how to get one. o Is there anything else new in this initiative? o Yes the Do Not Attempt Cardio Pulmonary Resuscitation form o That’s not new we have loads of them o Yes but that’s the trouble Cumbria has 12 versions and nobody accepts anybody else’s. o You want us to have one regional form...? o Yes. I have a dream that one day we will wake up and realise that there is one form. A dream that the form will be accepted by hospital, community teams, Nursing Homes, ambulance services (and everyone we’ve forgotten to mention) and that everyone will talk to each other. [makes to interrupt] A form without Trust logo’s! [again makes to object] [speaker stands up] One form accepted by everybody, but not only that NO! I have a dream that all these documents will belong to the patient; that they will stay with the patient; they will be the patients’ own documents. I have a dream that every person will have an opportunity to make decisions about their future, not just the patients that have specialists involved, and give us a lovely cup of tea and homemade biscuits when we visit, and say please and give us presents at Christmas…. But all patients! It’s a dream.

[Awkward pause] o Have you been to a political rally in your coffee break? Especially that bit about not having any logos, that’s a bit radical. o It’s a dream. One form accepted by everybody!! o Wow now that would really make a difference.

Patient: LISTEN!! This is all very well but do you know what would really make a difference to me? o Oh, hello…I had forgotten you were there Patient: I don’t want all this talked about, written down and then feel I have no control over it…what if I change my mind? o The documents are only used if you lose capacity….otherwise they’d just ask you! o If you held the documents yourself, then you could change them at any time and show them to whoever you wanted Patient: Don’t you lot need to be in control of them? o No that’s the point these decisions are from the patient, about the patient and for the patient

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o The point of the initiative is all about you, the patient, making decisions in advance in case you lose capacity o I thought you said this was new…we’re supposed to have been doing this for years. o Well, one thing that is new is where plans are made to deal with expected emergencies. o Such as...?

Patient: You mean, things like if I become breathlessness, have pain, or a bleed – things that you guys can anticipate. o That’s it, to help carers and family really. Sort of step 1 do this. Wait so long. Step 2 do this etc o What happens when you run out of steps o You have a plan such as 9-5 M-F ring surgery, out of hours the emergency team but avoid ringing for an ambulance.

Patient: Surely the professionals have plans already o Yes they do, but often it’s only verbal and not always clear. This can be more structured & written down o So this Health plan is to be used in emergencies. o Yes so let’s call it an Emergency Health Care Plan.

Patient: Do you know, I think that could really help my family o This is all well and good but it seems a lot of work getting all these forms together o That’s the best bit. Newcastle has already done them. o That’s useful and we can we pinch it o Yeah Claud said we can use all of it and its going to be across all of Cumbria, Newcastle, Tyne & wear and even into North Lancashire Patient: Is this initiative going to end up being just another form filling exercise? o Yeah, you know what professionals are like about more paperwork o No. The regionally accepted forms are important but the main drive should be getting all care professionals giving patients & clients the opportunity to discuss their future care options. o But surely professionals are always talking to their patients o The trouble is they often assume someone else has had these important conversations or worse, they wait till the patient asks and the patient is waiting till the professional brings it up, so it never happens or it’s too late.

Patient: And that’s when everyone is most distressed and least able to make decisions o And is this a one off discussion to complete the forms o No it should be a continuous dialogue which might or might not even lead to some form of paperwork.

Patient: The most important part is about letting us know our options and then listening. Giving us a chance to have our say about our future care o Having the document is one thing, but how are we going to promote it Patient: Yes someone’s going to have to get everyone on board and make sure they recognise the forms o Yes, after all, there’s doctors, nurses, social workers, care home staff and a whole lot more o I have thought of that. We need to get some really good professionals together, probably three for Cumbria because of geography the hills & lakes get in the way. o What are you going to call these people who will facilitate this Deciding Right o How about Deciding Right Facilitators o That sounds about as catchy as the rest of it o The thing is. Do you really think we will find three professionals passionate enough about Deciding Right to even apply for the job?

Yes they did. That’s us three.

Melvyn Laycock 2013 Implementing Deciding Right in Cumbria

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Deciding Right Cumbria 2014 Facilitators: Becky Chaddock, Carol Bradley, Mel Laycock Hospice hosts: Eden Valley Hospice, St Mary’s Hospice, Hospice at Home West Cumbria Implementing Deciding Right in Cumbria

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