Learning from the Macmillan Local Authority Partnership Programme

Published: May 2019

This guide focuses on implementing system change in cancer care by drawing on the experience of the Macmillan Local Authority Partnership Programme (MLAPP). The guide supports leaders, commissioners and practitioners from health, social care, housing and voluntary and community sector organisations to implement a person-centred, integrated approach to providing care and support to people living with cancer and other long-term conditions (LTCs).

MLAPP aims to ensure that everyone diagnosed with cancer can easily access the cross-sector integrated support they need, to enable them to live their lives as independently as possible. It has been evaluated by SQW and SCIE since 2016.

The guide describes several broad steps and practical actions to consider, and it is up to you and your colleagues to determine which actions you choose to pursue and in what order. This is the first guide and we will publish an update later in 2019 with learning from the evaluation.

  • Foreword from James Sanderson, Director of Personalised Care, NHS England Open

    The Comprehensive Model for Personalised Care, developed in partnership with over 50 stakeholder groups, is now being implemented across a third of England. By December 2018, over 500,000 people had already benefitting from personalised care, including over 40,000 people who had a Personal Health Budget (PHB) – nearly a quarter of which were jointly funded with social care.

    The Personalised Care Group and Cancer teams within NHS England, working closely with key stakeholders such as Macmillan, have been embedding the Comprehensive Model for Personalised Care into the cancer pathway – from pre-diagnosis, through treatment and post-treatment to ensure that people receive personalised care and support throughout all of their cancer journey.

    This work was reflected and formalised in the NHS Long Term Plan, published in January 2019. Both cancer and personalised care were highlighted as key priorities for the next five years, as was a significant commitment to ensure that:

    By 2021, where appropriate every person diagnosed with cancer will have access to personalised care, including needs assessment, a care plan and health and wellbeing information and support. This will be delivered in line with the NHS Comprehensive Model for Personalised Care…. Over the next three years every patient with cancer will get a full assessment of their needs, an individual care plan and information and support for their wider health and wellbeing. All patients, including those with secondary cancers, will have access to the right expertise and support, including a Clinical Nurse Specialist or other support worker.’ (paragraph 3.64, NHS Long Term Plan)

    This represents one of the most significant commitments in the Long Term Plan to embed personalised care in ’business as usual’ across the health and care system. The cancer teams, Macmillan and the Personalised Care Group are coming work together, with Cancer Alliances and providers to deliver on this commitment.

    James Sanderson, Director of Personalised Care, NHS England

Key messages

  • There is no single blueprint for implementing system change in cancer care. Instead, learning from programmes such as MLAPP, the local context and previous experience should all shape the design, development and delivery of any new service model.
  • Establishing a programme board made up of senior representatives from a range of organisations committed to and championing MLAPP is key for providing strategic direction and overseeing delivery.
  • The recruitment of a programme manager with a specific set of skills, as well as sufficient and qualified support staff, should be an early priority.
  • Project timescales should allow for scoping activities such as mapping the cancer landscape, assessing existing assets in the community and cancer care pathway modelling.
  • Identifying, engaging and building relationships with key partners should also be a priority from the start.
  • Any programme should be rooted in a co-production approach with people living with cancer and carers/families, with shared commitment from the top, a clear vision, strategy and delivery plan for co-production activities and dedicated resources. 
  • Effective partnership working is needed at the strategic and project delivery levels, by facilitating commitment of all partners, clearly identifying partners’ roles and responsibilities, and encouraging mutual respect and sensitivity.
  • Making time for shared learning is key when implementing system change programmes. This involves building new relationships and implementing new ways of working.
  • Planning should include consideration of timelines and thinking about how long elements of the project can take; and adding contingency in the schedules for delays and scope development.

About MLAPP

Started in 2015, MLAPP aims to provide clear, seamless and accessible pathways of care and support for people living with cancer, based on a robust, holistic assessment of individual need. The programme is has sought to embed co-production with people living with cancer and their carers from the very beginning.

MLAPP seeks to respond to the changing nature of cancer in the UK, with growing numbers of people living with cancer and requiring holistic, community-based support.

For example:

  • there were an estimated 2.5 million people living with cancer in the UK in 2015, and this is projected to rise to 4 million by 2030 
  • the incidence of cancer has risen such that nearly one in two people will contract the disease in their lifetime.

These incidence and prevalence statistics are partly due to increased survival and life expectancy. Advances in treatment mean that people with cancer are now living longer. While it is welcome that more people are now surviving cancer, for these people the consequences of the disease have an impact not only on their physical condition, but also their psychological, financial and social functioning.

Their needs can include:

  • support with mental health issues
  • help making lifestyle choices
  • assistance with independent living (self-management or help with personal and practical needs, access to employment and benefits and meaningful social interaction).

Cancer is therefore a social issue as well as a medical one.

MLAPP sits within a wider drive across the UK to integrate health and social care services, deliver more personalised care and support people with LTCs. In England, sustainable transformation partnerships (STPs) have been established to integrate services in relation to the needs of populations, and in Scotland IAs have taken responsibility for planning joint health care and single budgets.

MLAPP builds on two Macmillan flagship approaches.

  1. The Recovery Package identifies and addresses the changing needs of people living with cancer from diagnosis onwards so that their care is person-centred and their health and wellbeing needs are supported.

    The package aims to enhance integration between primary and secondary care settings and the local community, as well as encouraging self-management. This reduces the need for follow-up appointments for non-complex cases, improves efficiency of health and care professionals’ time, relieving pressure on the system and improving the experience of people with cancer. It means people with more manageable needs can be supported by the community, professionals or trained volunteers.

    A framework to deliver holistic support, this model helps people with cancer to live as well as they possibly can, and improves their outcomes through:

    • holistic needs assessments (HNA) and care planning – helping to identify their physical, emotional, practical and financial needs and looking at how these could change in the future. It also uses an individual care plan to set out any actions they, or those caring for them, have taken or will take to address them
    • treatment summary – simple summary of the treatment received is shared with the person with cancer and their GP practice so both are aware of the potential short- and long-term consequences of the treatment. This eases the person’s transition between hospital and community settings. It also ensures any future issues are identified and addressed promptly.
    • cancer care review – through the treatment summary this should provide the person with cancer ongoing opportunities to have a conversation with someone from their GP practice, so they can build a new support network and raise any concerns they may have via a cancer care review
    • health and wellbeing events – to prepare the person for the transition to supported self-management. The event should include advice on relevant consequences of treatment, recognition of issues and who to contact. They should also provide information and support on work and finance, healthy lifestyle and physical activity.

    The Recovery Package is recognised in the NHS England ‘Five Year Forward View’ and the Cancer Taskforce Strategy, which outlines a commitment to ensuring that ‘every person with cancer has access to the elements of the Recovery Package by 2020’.

  2. The Improving the Cancer Journey initiative (ICJ) in Glasgow, a partnership programme which invites every newly diagnosed individual with cancer to link workers based in community settings as well as hospital-based clinics. Clinical professionals in secondary and primary care can also make referrals. These link workers conduct HNAs where they discuss and identify people’s support needs and co-produce a care plan, which is shared with the relevant professionals and people are enabled to access support important to them.

MLAPP involves:

  • creating clear pathways designed around individuals and streamlined for convenience, efficiency and accessibility
  • mapping the assets available and building on existing links in local communities
  • ensuring cancer support is embedded in strategic planning
  • focusing on holistic care needs when commissioning services
  • co-production by involving people living with cancer: this is a fundamental element in shaping the design and delivery of the programme.

MLAPP activities take place at three levels:

  1. Partnership working and system change. Establishing a partnership and working through this to create service and system change.
  2. Team and service development. Establishing a structure and service/pathway through which to undertake HNAs and support people living with cancer to obtain access to and/or navigate the support and services they need.
  3. HNAs and associated activities such as care plans and care navigation.

Three strands or levels in the Macmillan Local Authority Partnership Programme

  1. Partnership and system change
  2. Teams and service development
  3. Community HNAData from HNA

MLAPP has two phases:

  • Phase 1, establishing the partnership and identifying the needs of people living with cancer, focuses on mapping local assets (services/support available) and gaps in services, and developing a delivery plan.
  • Phase 2 focuses on the delivery of the plan and establishing the sustainability of the work in the longer term.

What are HNAs and care plans, and how do these help?

A Holistic Needs Assessment (HNA) ensures that physical, practical, emotional, spiritual and social needs are met in a timely and appropriate way, and that resources are targeted to those who need them most. An HNA is a simple questionnaire that is completed by a person affected by cancer. This simple yet powerful tool organises elements into overarching categories and covers over 60 areas of concern. It allows them to highlight the critical issues that matter to them at that time, which in turn informs the development of a care and support plan with their nurse or key worker. The questionnaire can be completed on paper or electronically.

Undertaking an HNA supports the broader aim of ensuring people receive personalised care that reflects their specific health and care needs. It can make a big difference to people’s experience of care – for example, by helping them realise that their concerns are worthy of consideration and not unusual. The conversation itself can be very therapeutic for people and can identify their own strengths and coping skills so that they don’t feel powerless in managing their condition. Additionally, involving people in making decisions about their care and health needs recognises their role as experts in their own lived experience and gives them choice and control over the services they receive.

Evidence has shown that providing an effective individual HNA and the resulting care and support plan can contribute to better identification of a person’s concerns and meeting their needs. It enables appropriate interventions, including support and information and signposting or referral to other services if required. The process ensures timely intervention and diagnosis of side-effects or consequences of treatment. Evidence has also shown that a person’s holistic needs are likely to change at key points in their cancer journey and that having HNAs at these key points helps to continually inform and improve care and support plans.  

The use of HNA is pivotal at diagnosis, through and post treatment. However, we need to ensure people living with cancer (PLWC) have continued access to holistic assessment, conversations and navigation to support beyond the acute care period (core to Right By You).

Good conversations based on what is important for the PLWC to discuss, are key – HNA, treatment summary (TS) and cancer care review (CCR) provide the structure for this to happen across care boundaries, ensuring information is shared and conversations are meaningful to the PLWC.

Improving outcomes

MLAPP is intended to transform care and support for people living with cancer. Key intended outcomes are as follows.

For people living with cancer and carers/families:

  • more control and opportunity to voice and meet their concerns
  • reduced anxiety and improved confidence
  • a greater understanding of the support available
  • increased wellbeing
  • making a contribution to community assets
  • reduced social isolation
  • feeling well supported
  • having a personal record to reflect on.

For professionals:

  • increased knowledge, skills and confidence
  • increased job satisfaction and quality of care.

For services:

  • integrated and seamless pathways for people with cancer
  • reduced duplication and delays
  • increased staff skills and confidence
  • increased efficiency and cost-effectiveness.

Overview of the five MLAPP sites

Dundee

Macmillan and Dundee City Council launched the Dundee Improving the Cancer Journey service in November 2017. The programme uses holistic needs assessment and collaborative care planning  to provide practical, personal and emotional support to people affected by cancer. This allows the team to focus on what matters most to the individual, whether that's money and finances, getting practical help at home or coming to terms with the emotional impact of cancer.

MLAPP journey so far:

  • service implementation began November 2017
  • receive referrals from ISD letters, health and social care professionals, voluntary sector and individuals
  • two link workers to conduct HNAs
  • assets mapped for referral to support
  • introduced volunteer peer support
  • 260 users as of end of March 2019 (c.55 per cent completed two HNAs)
  • service located within Health and Social Care Partnership

Durham

Macmillan, working with Durham County Council developed a new service, Joining the Dots, which officially launched in January 2019.  The service is being delivered by County Durham and Darlington NHS Foundation Trust, managed by the Wellbeing for Life Service. Six facilitators work across County Durham, conducting holistic needs assessments and use collaborative care planning to ensure that a person’s financial, emotional, practical and spiritual needs are met, whilst clinical services are dealing with physical elements of the person’s care. This ensures that the complete recovery package is being delivered, so positive experience is a priority during a person’s cancer journey.

MLAPP journey so far:

  • service implementation began in September 2018
  • official launch in January 2019
  • referrals received from clinical nurse specialists, GPs, Macmillan Information Centres, self, community venues and all cancer support services
  • six facilitators delivering holistic needs assessment across County Durham
  • directory of services developed to explore all referral options for people
  • exploring the development of a buddying service to complement the facilitator role and reduce social isolation
  • 240 people engaged with the service to date (all new people affected by cancer)

Patient Activation Measure (PAMS) to be implemented.

Fife

Macmillan Cancer Support and Fife Health and Social Care Partnership are working together to improve the lives of people in Fife who are affected by cancer by providing holistic and tailored support to people living with cancer and carers.

MLAPP journey so far:

  • learning from transforming care after  treatment programme applied to ICJ
  • 1.5 local area coordinators transferred from TCAT to ICJ
  • service implementation – test phase June–August 2018
  • 72 people engaged with service during test phase
  • service offered Fife-wide from September 2018
  • 51 people requested the service in September
  • ISD issue an invitation letter to people who receive a cancer diagnosis
  • Fife ICJ is hosted within the Health and Social Care Partnership

Manchester

The Manchester MLAPP brought together Manchester City Council and Macmillan Cancer Support, with the aim of securing high-quality cancer outcomes and experience for the population.

The Manchester MLAPP engagement and partnership work with a wide range of local support agencies and partners has developed understanding of the needs of people affected by cancer and service providers. This understanding is informing the neighbourhood development approach of the Manchester Local Care Organisation (MLCO) and registered housing providers to enhance existing best practice, and inform service improvements that will maximise access to community assets and support for people living with cancer in our communities. Services such as the Be Well Social Prescribing and Care Navigators has resulted in an earlier move to our partner organisations to continue the development of a sustainable model around integrating community services and delivery of the MLCO.

Tower Hamlets

The Tower Hamlets MLAPP is a transformation programme. Its main focus is to ensure delivery of personalised care and support seamlessly across sectors to meet the wider holistic needs of people living beyond cancer through system-wide changes in culture and practice.

This programme has significant interdependencies with transformation programmes looking to improve access to information advice and guidance, care coordination and navigation and social prescribing in Tower Hamlets. The programme intends to enable people to live as well and as independently as possible and support their carers. It launched in February 2018.

MLAPP journey so far:

  • data analysis of local context
  • asset and systems mapping
  • co-production recruitment
  • development of delivery options using local insight
  • engagement of sustainability and transformation partnership, Cancer Alliance and key professionals
  • learning from other pilots and initiatives e.g. Transforming Cancer Services Team
  • training development on cancer as a long-term condition for cross-sector workforce

Initial project planning and engagement

Each MLAPP site spent an initial period of time, prior to having formal governance structures in place, to ensure that strong foundations were put in place to ensure that the project would run successfully.

Key activities included:

  • engage with people living with cancer and carers and families to establish their priorities and aspirations for local services, and engage them on how they can get involved in co-production
  • being clear about shared goals and other aspects of the partnership is important in building strong partnerships and allowing flexibility in delivery to meet joint aims
  • mapping out key strategic stakeholders who have either a direct role in delivering the programme, or in direct influence in its success.
  • communicating with all relevant stakeholders about the vision for the programme, and how to get involved and support it
  • establishing a project team to deliver the programme, including staff with skills in delivering local cancer care services, project management, data analysis, communication and information and advice

Establishing the programme board

The MLAPP process

  1. Initial engagement Establishing the programme board
    Recruiting programme managers and organising workstreams
  2. Detailed scoping
  3. Embedding co-production Conducting key scoping activities
    Building productive relationships and partnerships
  4. Implementation and pilotingDraw on the local context
  5. Evaluation and shared learningMaking time

Any programme should be overseen by a programme board comprising senior representatives from a range of partners and stakeholders, including the local authority, health services, social care services, voluntary and community organisations, Macmillan, people living with cancer and wider communities. In some areas, the housing sector is represented on the board and it is recommended that they be seen as key stakeholders.

The board is a key entity, expected to provide overall strategic direction. It oversees the development and delivery of the new service, financial governance and monitoring. It reviews progress, and oversees risk and issue management, among many other duties and responsibilities. The board is also responsible for championing and advocating the programme, securing buy-in from stakeholders and removing barriers where necessary.

Setting up a programme board or influencing existing governance can be time consuming and difficult, as local partners often have conflicting projects and priorities. Similarly, it can be difficult to ensure the board has the right mix of individuals with a shared interest in and passion for the programme. It is also critical to ensure board members receive support and training, and have sufficient time to carry out their responsibilities (all involved partners will be dedicating their time to this board or programme as an add-on to their existing roles/functions).

Learning from MLAPP sites has indicated that having a ‘champion’ in a senior representative role can facilitate engaging with partners and setting up a dedicated board or influencing existing governance. For example, the champion might be the chief executive of the local authority, a local councillor or a director of public health. Such senior representation and buy-in can help to secure support and engagement from key individuals and partner organisations as well as expanding the awareness, influence and reach of the programme.

We had committed political leadership from the beginning. Our lead member for adults and health care has been committed to building a personalised approach to supporting people with cancer from the beginning, and has stayed the course, encouraging people to continue to support the programme.

Programme manager

Additionally, existing integrated partnerships, such as the integrated joint boards in Scotland, have also proved to be a very useful vehicle for the engagement and input of all stakeholders.

  • Things to consider Open

    1. Build sufficient ‘stakeholder engagement’ time into the project plan to set up a dedicated and efficient programme board or influence existing governance.
    2. Identify a ‘champion’/senior level buy-in to support and thereby move the programme along.
    3. Clear terms of reference are needed for the board and must be agreed by all members.
  • Top tips Open

    • Ensure that there is clear alignment between the programme plans and other relevant local strategies and plans, such as integrated care plans. Establish that the programme can help support the delivery of existing strategic priorities (e.g. Better Care Fund plans in England)
    • Communicate to partners how the programme fits within and adds value to their existing remit.
    • Meet with partners on a one-to-one basis several times to build personal relationships and secure buy-in.
    • Identify and work with any local bodies that have widespread reach and good relationships with potential partners and stakeholders.
    • Involve the programme board at regular intervals to ensure commitment is maintained.
  • Key resources Open

Recruiting programme managers and organising workstreams

Learning from the sites has indicated that recruiting for the role of programme manager is an important priority. There can be challenges in finding the right person for the post, and for some sites this has led to lengthy delays in the start-up of the programme.

The role requires:

  • excellent strategic influencing skills
  • knowledge and experience of working across organisations and with different professions
  • good programme and project management skills
  • excellent communication, engagement and facilitation skills
  • an understanding of cancer and its impact on people living with the condition and on their families
  • knowledge of commissioning and budget management
  • experience of working with seldom-heard groups
  • awareness and understanding of sustainability
  • understanding and commitment to demonstrating outcomes.

Challenges can include agreeing roles and responsibilities, reporting arrangements and seniority, to name but a few.

It is equally important that the programme manager feels supported in their role. The sites have emphasised the importance of recruiting support staff with clear remits. This has included business support officers, programme coordinators and user involvement facilitators. Moreover, organising the delivery of the programme requires operational teams. Many sites have tended to organise around five to seven workstreams, generally focusing on:

  • maximising income – welfare and benefits
  • co-production/user involvement 
  • asset mapping and gap analysis
  • communications and marketing
  • equality impact assessment
  • evaluation
  • data-sharing/information governance
  • development of a service delivery model.

Ideally, each workstream should have a senior lead, and often board members act as the leads for individual workstreams. This helps to ensure that board members are closely involved on an ongoing basis in the delivery of the programme and that each workstream receives strategic direction. In other instances, planning and/or steering groups oversee workstreams and report back to the board on their progress. This works in local contexts where boards do not have the time to oversee operational work.

The sites have identified the existence of a strong ‘foundation’ and ‘team’, as described above, as essential to supporting the programme manager and thereby driving the work forward.

  • Things to consider Open

    1. The recruitment of a dedicated project/programme manager must be an early priority for the programme.
    2. Programme managers must be provided with access to relevant support staff – any programme requires a lot of focus on engagement and co-ordination of stakeholders and partners, while also managing and driving the work forward.
    3. The programme manager and support staff should be dedicated to the delivery of the programme, rather than this being an add-on to existing responsibilities.
    4. Workstreams should develop delivery plans, including timescales and key milestone outputs, and these should be signed off by the board.
    5. The existence of multiple bodies such as the board, steering groups and workstreams requires a clear governance structure and reporting arrangements.
    6. A risk log/register must also be created to ensure that each workstream is able to tackle issues and challenges as and when they arise, and to monitor progress and the effects of mitigating actions.
  • Top tips Open

    • Finding the right person for the programme manager post is very important – but can take time.
    • Include a person living with cancer on the interview panel for the programme manger role.
    • The programme manager role should be pitched at the right level of seniority and salary band, with an appropriate title and clearly identified skills and responsibilities.
    • Skills and responsibilities to look for must include strong project management skills, providing overall strategic direction and engagement with stakeholders and people living with cancer.
    • Consider local context and board member availability when deciding whether to establish an additional steering/planning group to oversee delivery.
  • Key resources Open

Detailed scoping

Embedding co-production

Co-production – a way of working whereby everybody works together on an equal basis to create a solution that works for them – has been at the heart of the MLAPP approach. People living with cancer need to be involved from the very start of any programme and given parity of esteem with all other stakeholders in creation of any solutions.

The Care Act (2014) guidance describes co-production as:

When you as an individual influence the support and services you receive, or when groups of people get together to influence the way that services are designed, commissioned and delivered.

Co-production is not engagement or consultation. It should aim to involve people in:

  • co-design, including planning of services
  • co-decision-making in the allocation of resources
  • co-delivery of services, including the role of volunteers in providing the service
  • co-evaluation of the service.

In several of the sites, people living with cancer and carers have been involved in decisions throughout. It is recommended that any programme includes the following co-production practices:

  • including people living with cancer on programme boards as equal members
  • setting up co-production forums or panels made up of people living with cancer and carers, with clear terms of reference, meeting regularly with the programme team to provide valuable input
  • training staff and volunteers in co-production principles and practice
  • recruiting co-production volunteers to be part of delivery teams
  • recruiting for specific co-production roles, such as user involvement facilitators or engagement officers
  • ensuring that co-production includes the opportunity for input into the review and evaluation of the programme.

We finally have a cancer voice on our project team and she has already made an impact by sharing her story openly and bringing a sense/reality check to our discussions.

Co-production panel member

Learning from the areas indicates that successful co-production requires commitment from the top if it is to be consistent, ongoing and embedded as everyday practice. This should include members of formal governance bodies, such as health and wellbeing boards in England and health and social care partnerships in Scotland, and elected members.

Additionally, co-production is most effective when supported by a clear vision, strategy and delivery plan. This helps to identify and agree with co-production participants the areas where co-production can have a real impact. If discussions simply focus on high-level aspirations, co-production will struggle to gain momentum. An effective approach can be to outline how co-production can be supported at three levels – at the strategic decision-making level (e.g. programme boards), at the operational level (how the programme is managed day-to-day) and at the individual service user level (how are they given a voice in how services are delivered?).

Learning also indicates that co-production can be time-consuming and requires dedicated resources for building the project and for support. It is important that the costs of delivering co-production activities are included in budgets, and that the time to deliver these tasks is reflected in delivery plans. For example, effective co-production requires excellent facilitation, research and communication skills, which means it is important that the team includes individuals with these skills.

Co-production is a continuous process that will help to refine the programme and learn from those with lived experience. In several of the sites, opportunities for people living with cancer and carers to evaluate and review the programme were built in at the beginning. In Durham, for instance, the co-production group meet regularly to review how well the commissioned provider is delivering their MLAPP funded ‘Joining the Dots’ cancer support service.

  • Case study: Co-production in Durham Open

    Durham’s MLAPP ‘Joining the Dots’ has adopted an approach to the design and delivery of MLAPP that is rooted in co-production. The site has drafted a co-production framework, which outlines the vision and core principles of co-production for MLAPP. This framework has been agreed by all partners, and this facilitated their commitment and buy-in. The delivery of the programme is led by a co-production group, which reports to the programme board and oversees eight workstreams. The site has drafted clear terms of reference for this co-production group. This group also meets regularly to review how well the provider is delivering the ‘Joining the Dots’ cancer support service. The site has also developed a YouTube video produced by people living with cancer, to communicate the programme aims and how it will involve local people.

    Additionally, the programme has recruited eight co-production volunteers (who are people affected by cancer) to be a key part of the project team. These volunteers have clearly outlined job/role descriptions and expectations, and have been provided with induction and training. They are represented on the programme board, the co-production group and workstream groups, and others are tasked with undertaking carer and patient engagement.

    More specifically, the co-production volunteers have provided valuable input into the development of a suggested model of delivery. Durham then held an online public consultation on this model. The volunteers played a key role in designing the promotional materials for this consultation, including taking part in the production of a short video. The findings from the public consultation then fed into the development of a detailed service specification. The volunteers have also reviewed and supported decisions on the commissioning process and delivery provider selection.  

    As part of their patient and carer engagement, Durham has also held four ‘Joining the Dots’ large-scale engagement events and conducted a survey and one-to-one interviews with people affected by cancer to better understand their experiences, journey, gaps in services and support needs. A report was published in February 2017 and the findings from this informed the design of a suggested model of delivery.

    Finally, the site also employed the Macmillan Bus, which has been a great success in helping the programme consult and engage in areas that had previously been inaccessible.

  • Things to consider Open

    1. Develop (and agree among the board) a shared statement and vision of co-production, including the principles which will guide the process.
    2. Agree the definition of co-production so that all stakeholders have a shared understanding and can agree roles and responsibilities.
    3. Develop a co-production strategy, which clearly outlines where co-production can have an impact, how/when co-production partners will be involved and what the expected outcomes are of this involvement.
    4. Ensure project timescales and delivery plans include sufficient time for meaningful co-production activities.
    5. Set up co-production bodies such as user panels; employ dedicated co-production staff and people with lived experience on programme boards to act as champions and ensure co-production remains a priority area.
    6. Provide training for the co-production panel to ensure members have realistic expectations of their roles.
    7. Ensure your project team includes people with experience of co-production (e.g. facilitating co-production activities and running accessible meetings).
    8. Resource allocation must take account of the time and costs of co-production (e.g. venues, participant payments and the employment of dedicated co-production staff).
  • Top tips Open

    • Ensure senior partners are committed to an approach grounded in co-production.
    • Develop opportunities from the very beginning to involve people who have the greatest stake in services.
    • Ensure co-production panels genuinely reflect the diverse communities of the local area including carers, disabled people and people from black and minority ethnic communities.
    • Make sure that all information is accessible and in plain English (e.g. delivery plans, information sheets, web pages). Work with voluntary and community sector organisations and advocates to access seldom heard communities and/or build on good practice already taking place locally.
    • Make sure training and support is available for anyone involved in co-production and that this is ongoing.
  • Key resources Open

Conducting key scoping activities

  1. Mapping existing assets in the community
  2. Pathway modelling
  3. Mapping the cancer landscape
  4. In-depth engagement with people living with cancer
  5. Set-up of evaluation activities
  6. Theory of change model

There are key scoping activities that need to be completed in Phase 1 of the programme to help inform the design of any new services or pathways and to make the best use of resources.

Such activities include mapping existing assets in the community, which involves identifying any services, support or networks already available locally for people living with cancer or that can be expanded to include cancer care (these need not be cancer-specific but simply responsive to the needs of people living with cancer). This is not just a way to understand available resources that people may choose to access but is also a way to build networks and relationships across the system.

Similarly, it is important to conduct pathway modelling to better understand the journeys of people living with cancer and how and when different services and support networks are accessed and how they interact with each other. Learning from the sites has indicated that pathways can often be complex and unclear, particularly when services or support are going through transformative changes. Asset mapping and pathway modelling are therefore key to identifying areas of good practice, gaps, opportunities and synergies. This is essential in understanding where a new service/model/pathway can add most value in a joined-up way. 

Part of the process involved an asset mapping process to look at the overall pathway for people with cancer and what support, networks, opportunities were available, and where the main gaps were. This was called the ‘Joining the Dots’ conference, and it involved over 100 people from 89 different organisations.

Programme manager

Another key activity during the scoping phase is mapping the cancer landscape in the local context. This includes accessing and reviewing datasets, research reports and publications, joint strategic needs assessments (JSNAs) and any other available information to build a rich picture of the profile of cancer in the local population. Such mapping also helps establish a baseline for the profile of cancer, which will be useful for any future evaluations, and in order to demonstrate to people living with cancer what progress has been made by MLAPP.

The following specific datasets can provide you with a picture of local needs and issues for people living with cancer:

  • Adult Social Care Outcomes Framework
  • public health cancer prevalence statistics
  • hospital episode statistics
  • Scottish national datasets
  • National Cancer Registry for Scotland
  • National Cancer Patient Experience Survey
  • Care Quality Commission (CQC) local authority profile
  • GP survey results (Health and Social Care Survey in Scotland)
  • experiences of end-of-life survey
  • local research with communities including people living with cancer and carers.

Similarly, in-depth engagement with people living with cancer is also needed at this stage to identify local people’s concerns, needs, experiences and ambitions. Learning from the sites has indicated that such engagement can take place in a variety of ways, including but not limited to surveys, interviews, large-scale engagement events, online consultations, use of the Macmillan Bus (a mobile information and support service) to access harder to reach areas and well as engagement with established panels and user groups (not always cancer-specific).

Learning from the sites has also indicated that the scoping activities described can be a lengthy and complex process. This is often because these activities cannot be completed in isolation and programme managers need time to engage, involve and build relationships with partners across the cancer pathway.

Finally, the scoping phase should include the set-up of evaluation activities. Thinking through at the beginning of the programme how you intend to measure and assess its impact is crucial to making a case in the future for its sustainability, as well as using this evaluation evidence to improve the programme. This may include commissioning an independent organisation to conduct the evaluation and working with partners to develop and agree a theory of change model to clearly outline the short- and longer-term outcomes expected, plus underpinning assumptions. Learning from sites has indicated that early engagement with evaluation activities and agreement of a theory of change model between partners can help avoid lengthy delays and help partners develop a vision together, enabling buy-in and ownership.

  • Things to consider Open

    1. Project timescales should allow sufficient time for robust asset and pathway mapping, which should be conducted as a priority, drawing on existing asset or service maps where necessary.
    2. Dedicated resources should be allocated to asset and pathway mapping to ensure that programme managers have the support they need to complete these tasks, including support from data analysts.
    3. Asset mapping is not a one-time activity, it is a continuous process to be built into the programme while also considering resource implications.
    4. Project timescales should also allow sufficient time for programme managers to focus on engaging and building relationships with key partners during the scoping phase
    5. Engagement with people living with cancer should strive to employ asset- and strength-based approaches.
  • Top tips Open

    • Consider what local engagement work has already been completed on the needs and concerns of people living with cancer to avoid duplication.
    • Draw on other partners – such as community engagement teams – whose remit also includes engaging with people living with cancer.
    • Consider what asset mapping and pathway modelling tools already exist to help with these activities.

Building productive relationships and partnerships

Any programme requires a wide range of services and practitioners to work together. This is likely to include the organisations and practitioners listed below.

Key organisations

  • clinical commissioning groups (CCGs) (England)
  • NHS boards (Scotland)
  • local health boards (Wales)
  • health and social care trusts (NI)
  • Macmillan Cancer Support
  • local voluntary and community sector organisations, including cancer-specific and carer-focused bodies
  • NHS trusts
  • GP practices
  • care homes
  • leisure services
  • faith organisations
  • hospices
  • housing
  • people living with cancer

Key practitioners

  • GPs/practice nurses/advanced nurse practitioners
  • allied health professionals (AHPs)
  • social workers
  • home care workers
  • housing officers
  • care co ordinators/link workers/care navigators
  • cancer nurse specialists
  • district nurses
  • community pharmacists
  • hospital cancer clinicians
  • palliative care specialists

The involvement of so many partners means that coordination, cooperation, communication and agreement are essential in order to establish productive relationships that move the programme forward. Local authorities are well placed to pull together and secure MLAPP involvement from a diverse range of partners, across health, social care, housing and other sectors because of their democratic mandate and their role as leaders of their local communities.

Learning from the sites has indicated that partnership working often requires disparate professionals and teams to work together. It is therefore likely that disagreements and issues will arise that need to be addressed. At the strategic level, partner organisations can understandably have conflicting interests and priorities both between each other and with Macmillan – for example, with respect to defining the scope of the programme, its outcomes and evaluation, and its applicability to other LTCs.

Additionally, at the project delivery level, MLAPs seek to coordinate care and support around individuals, and therefore require effective multidisciplinary and cross-agency working in order to avoid delays to the programme set-up and the ongoing delivery of any commissioned service/changes to pathways. Effective joint working between practitioners is likely to be needed throughout the time a person is supported by the programme – to produce an HNA, to develop a personalised care plan, to bring together the right package of care for the person or to review whether the person’s goals are being met. However, agencies often work to different timescales and are faced by different competing pressures (as well as bureaucratic processes) that can make efficient joint working difficult. Additionally, providers and services often tend to work in ‘silos’, and can be territorial when it comes to people they work with.

Teams working locally to support people living with cancer need:

  • clear criteria for referrals or processes
  • an identified manager and/or practice leader who oversees and facilitates the work of the whole team
  • a single process to access the workers in the team, with joint meetings to share insights and concerns
  • electronic records of all contacts, assessments and interventions by team members with an individual and their family
  • a ‘key worker’ system through which care for those with complex support packages is co-ordinated by a named team member, who will help people identify the support they need and use a personal budget (if they have one), as well as signpost people to services 
  • a clear understanding of each other’s roles and responsibilities concerning the individual and how to contact one another when required
  • trust and relationships between professionals, community support and individuals (key to building a seamless experience of care and support).
  • Case study: Promising service delivery in Dundee Open

    Dundee was the first MLAPP site to launch its service, the Improving the Cancer Journey (ICJ). Scoping and development started in July 2016 and, following a brief test period, the Dundee ICJ had a successful public launch in November 2017. In its first year of operation, the team completed over 250 HNAs and grew the service by 20 per cent. Over 300 HNAs had been completed by the end of January 2019. A broadly equal number of men and women use the service with most being over 55.

    Initially, most service users were 75 and over, but uptake amongst younger age groups has increased as time has gone on. Sixty-three per cent of the people the team meet come from the two most deprived datazones (Scottish Multiple Index of Deprivation areas 1 and 2). Service users have raised over 3,000 concerns (an average of nine per person) so far, and the team has taken just under 3,500 actions on their behalf.

    The ICJ team and its co-production panel, Cancer Voices, identified a gap in the provision of low-level emotional support for people living with cancer. Over 2018, the group worked with Volunteer Dundee to develop a volunteer-led peer support model to help address the gap and some of the issues that were being raised by service users. This is in its final preparations and will be launched in spring 2019. The team and Cancer Voices have also been working with a range of organisations across the city to develop a programme of health and wellbeing events for people affected by cancer. The first event took place on October 2018 and more are planned for 2019 and 2020.

    This promising practice is underpinned by the drive of the Chief Executive of the Council and the buy-in of senior leaders on the Project Board. A strong history of partnership working in Dundee has also helped the service to move forward. The previous experience of the Tayside Transforming Care After Treatment (TCAT), Welfare Rights and Move More programmes, as well as the adaptability of the Glasgow ICJ, has also helped facilitate the design and delivery of the service.

  • Things to consider Open

    1. Develop a clear map of all the different internal and external stakeholders who need to be involved and agree this with the programme board.
    2. Develop a narrative for the programme with a wide range of stakeholders, which clearly sets its ambitions, intended outcomes and agreed ways of working to facilitate commitment and ownership by all involved.
    3. Work with partners (including the voluntary and community sectors and people living with or affected by cancer) to develop delivery plans that clearly outline how and when partner organisations will work together (e.g., referrals, completion of HNAs), with clear expectations about roles, responsibilities and outcomes.
    4. Where possible, identify and agree dedicated points of contact within agencies, to ensure communication is efficient.
    5. Establish opportunities for joint training and cross-agency team meetings, to build understanding and a shared culture.
    6. Have a clear plan for communication with stakeholders and people with cancer and their carers, and a relentless focus on communicating the vision.
  • Top tips Open

    • Senior level partners should model effective partnership working (e.g., by doing joint presentations at events).
    • Senior level partners should be visible throughout the change process, attending and facilitating key meetings and consultation events.
    • Mutual respect and sensitivity must be encouraged to establish productive working relationships.
    • Face-to-face meetings and discussions in the early months of the programme should be encouraged.
  • Key resources Open

Implementation and piloting

Draw on local context

The implementation of any programme and the design and commissioning of any new service/model/pathway depends very much on the local context and existing infrastructure and provision for cancer care.

For example, learning has indicated that the ease of implementation of the programme can depend very much on existing relationships and partnerships. This can include:

  • good relationships between the local authority and health services
  • the existence of integrated health and wellbeing partnerships
  • strong engagement with clinicians
  • established cancer user involvement bodies.

More broadly, it can also include an existing commitment to a personalised approach, focusing on support needs beyond medical needs among key local partners, and an understanding and drive to invest in community capacity and the voluntary and community sector.

Learning also indicates that implementation of MLAPP is shaped and facilitated by local areas’ previous delivery of services and programmes with similar core principles and functions. This can include having access to:

  • established approaches to asset mapping and pathway modelling
  • in-depth engagement work with people living with cancer, providing a rich picture of the needs of local people
  • co-production infrastructure, including working groups, panels, strategies and delivery plans
  • a tried and tested model for delivery
  • existing relationships with clinicians and other medical staff
  • adaptable approaches to HNAs.

Taken together, this local experience and context can provide localities with a strong foundation from which to design and commission a service/or improvement for delivery. For example, the Scottish sites have drawn on their experience with the Improving the Cancer Journey and implemented a similar delivery model.

On the other hand, the scoping activities from other sites have indicated that the design of a new service may not be the best use of resources, particularly where localities are undergoing transformative change and/or have a varied and complex cancer provision landscape. Instead, service review and improvement to build on existing infrastructure has been identified as a priority in these types of localities. At such sites, where a new service is not identified as appropriate, the programme can develop a plan for how existing services can work better together.

  • Things to consider Open

    1. Consider, build and apply learning from any previous/existing local programmes with similar principles and functions.
    2. Analyse existing models that have successfully been implemented to help inform what works well and which aspects may be transferable to the local context.
    3. Identify and build on existing relationships and partnerships with a commitment to personalised care towards cancer and support.
  • Top tips Open

    • Where local areas have little similar experience or a complex cancer landscape, scoping activities should be conducted as a priority.
    • The varying context of local areas means that expected service delivery models and timescales should be flexible and adaptable.
    • A senior level champion and political will are necessary for the programme to be considered a priority in an already crowded policy context.
  • Key resources Open

Evaluation and shared learning

Making time

MLAPP is essentially about system change, which requires professionals and organisations to embrace new ways of working. As mentioned before, there is no blueprint for delivery and local areas need to draw on a range of resources, relationships and experience to implement the programme. The sites have greatly valued the opportunity to share experiences with each other over the course of developing and implementing MLAPP. Learning from the sites has identified a number of programme set-up areas where shared learning has proved to be useful. These include quarterly face-to-face meetings, monthly calls and access to key documents and templates, such as:

  • project delivery plans, including timescales allocated to various activities
  • organisation of workstreams
  • budget templates
  • frameworks for asset mapping
  • templates for outlining existing cancer pathways for people living with or affected by cancer.

Co-production and community engagement is another aspect where local areas are keen to learn from each other. The MLAPP sites have particularly appreciated learning from Durham’s successful approach towards co-production (see case study), including its co-production principles and use of co-production volunteers. Some sites have also appreciated accessing surveys from other sites that can be adapted for gathering the views of people living with cancer. Finally, wider stakeholder engagement plans, including how and when to engage clinicians and primary care staff, have also usefully been shared across sites.  
Learning from sites indicates that experiences have been shared in a range of ways. For example, there have been a number of learning and evaluation workshops attended by site leads, evaluation leads and Macmillan leads. These workshops have provided sites with an opportunity not only to report on their own achievements and updates, but to have conversations and gather learning from other sites. These workshops have been crucial in building relationships between programme managers and in fostering a culture of shared learning and mutual respect. In practice, this has meant that programme managers have become increasingly more comfortable reaching out to each other for help. This has been very important, as the role of the programme manager can often be quite isolating, given the time pressures faced by boards and line managers who may not be able to provide as much oversight and support as needed.

The sites also found the theory of change workshops facilitated by the evaluation team – during which participants discussed how the different activities they were planning would lead to improved outcomes – a really helpful way of building ownership over a shared vision and strategy, and to understand what outcomes needed to be measured.

Finally, Macmillan leads have been key to this process of learning. They conduct monthly calls with site leads and therefore hold an overview of experiences at all sites. This has allowed them to facilitate access to help and advice between sites.

  • Things to consider Open

    1. Create a community of practice and put in place structures that allow shared learning to occur both formally and informally.
    2. Include shared learning as a ‘soft’ outcome to ensure that local areas and partners are committed.
    3. Ensure that Macmillan leads and programme managers have ‘sharing and facilitating learning’ included in their job descriptions.
  • Top tips Open

    • Identify and build relationships with other local areas that are implementing similar programmes.
    • Ensure updates to programme boards/steering groups include shared learning activities and useful insights.
  • Key resources Open

Contact

For more information, contact Fiona Flowers at Macmillan Cancer Support.