Rare diseases action plan: progress report

5. Care coordination

People living with a rare condition, due to the complex nature of their condition, will need support from many different parts of the health and social care system throughout their lives. We remain committed to identifying ways to improve the coordination of care for people with a rare condition.

Action 9: Consider a future care coordination service

Becoming an adult is an important time in a young person’s life. It can be exciting, but also daunting. We know that for many young people living with a rare condition the transition to young adult life presents challenges. It is therefore critical that we support young people to have as positive an experience as possible during this time of change. Care coordination is vital to support individuals during this time of transition. There is well-documented evidence that the planning and support for young people who are making the transition to young adult life could be improved.

In the 2021 Programme for Government, Scottish Ministers committed to introducing Scotland's first National Transitions to Adulthood Strategy. Following conversations with colleagues the Rare Conditions Policy Team were invited to join the Transitions Cross Policy Working Group. We have worked to ensure that the needs of young people living with a rare condition are aligned to the definitions used to underpin the proposed National Transitions to Adulthood Strategy.

Early work also explored models of best practice for a care coordination service that could be adapted for Scotland via a test of change. However, due to the challenging financial environment, it has not been possible to progress this work. We will continue to engage with patients and stakeholders to identify ways to improve care coordination within the current fiscal constraints.

Action 10: Improving the use of Anticipatory Care Plans (now called Future Care Planning)

During 2023, the Scottish Government set up a new national working group to develop a Future Care Planning programme. This builds on what was previously called ‘Anticipatory Care Planning’ but is a new approach relevant to many more people, including those living with rare conditions.

Future care planning is about asking people what matters to them if their health changes and involves the person and those close to them such as family members, parents, or carers. Care planning conversations are with a doctor, nurse or care worker who knows about the person and has the right information about their current and future health, treatment, and care. Together they can create a person-led, future care plan that records what matters to the person in their life, health and care alongside important clinical advice to guide health professionals providing urgent or emergency treatment and care.

The National Future Care Planning programme builds on existing work to develop an electronic future care plan within the National Digital Platform based on the UK Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) and draws on other approaches to care planning in use across Scotland. This is a collaborative programme involving many stakeholders from health and social care and including people, families and carers that will be relevant and valuable to many more people with a wide range of health conditions. Digital plans developed through shared decision-making conversations and accessible across the health and social care system in Scotland can improve delivery and coordination of person-centred care.

Action 11: Digital Passports

There have been some initial discussions regarding the possibility of developing digital passports in Scotland, including exploring learning from other nations. However, at this stage we have not identified a practical route to take this forward. The programme exploring future care planning has the potential to make significant improvements to care planning records, which could result in it being more meaningful for those living with a rare condition and potentially patients won't have to spend as much time explaining the same things. Supporting this work will be a priority going forward.

Action 12: Supporting the implementation of “It's OK to Ask”

NHS 24 developed, delivered and evaluated a national, accessible and effective digital-first multichannel campaign promoting ‘It’s OK to Ask’. The focus of the campaign was around informing and educating people of their right to ask questions of their health care professionals during any discussions or appointments. Fresh promotion of the campaign began in April of this year, providing further opportunities to promote adoption by both healthcare professionals and people living with a rare condition.

Realistic Medicine centres on encouraging personalised care and shared decision-making, includes changing our understanding of risk, embraces new approaches to reducing waste and harm and tackling unwarranted variation through innovation and improvement. All these principles are fundamental to improving care for people living with rare conditions. In addition to It’s OK to Ask, some other pieces of work promoting realistic medicine are worth noting as beneficial to people living with rare conditions:

Value based health and care action plan

In October 2023 the Realistic Medicine team published the Value based health and care action plan. This action plan sets out thirteen actions (in line with six commitments set out in the Vision) to support health and care colleagues to practise Realistic Medicine and deliver Value Based Health and Care (VBH&C). The action plan emphasises that delivering value-based health and care is everyone’s responsibility, no matter your role. Everyone has a responsibility to deliver better value care for the people of Scotland.

As part of the ongoing work to support implementation of VBH&C, NHS Education for Scotland (NES) and the Realistic Medicine team have developed an online eLearning module. This module aims to guide staff through what VBH&C is and how it relates to their practice. The module is relevant for all staff working in health and social care and summarises the challenges currently facing health and social care systems. It also explains the link between Realistic Medicine and VBH&C and what we mean by outcomes that really matter to people.

Shared decision making

The team have also developed a shorter module on Shared decision making (SDM). Shared decision making emerged as a vital component of person-centred care. This resource is designed to introduce the fundamental principles, importance, and practical application of shared decision making in health and care settings. The aim is that health and care professionals will gain a comprehensive understanding of how shared decision making empowers people, improves health and care outcomes, and enhances the person-provider relationship.

Right decision service

The Right Decision Service (RDS) is a 'Once for Scotland' source of digital tools that enable people to make safe decisions quickly ‘on the go’. It is available as a website and an app, which we would encourage all healthcare professionals to use.

The Realistic Medicine team have been working with RDS and have produced a draft toolkit for people called “Being a partner in my care: Realistic Medicine together” which provides tools and resources to help us take more control over decisions about our care, based on what matters to us. It offers help with:

• Preparing for a healthcare appointment using information and digital tools section or the shared decision aids.

• Discussing options for treatment during a consultation with a healthcare professional including use of shared decision aids.
• Follow-up after an appointment, for example by using the support for self-management or the feedback section.

RDS also hosts useful information for health and care professionals, including information developed by local Health Boards.

Action 13: Mental Health Strategy

Community engagement highlighted that those living with a rare condition place a high priority on mental health: improving resources, more tailored support and generally reducing the burden that living with a rare condition can have on their mental health. Mental health services can be required at any stage of the patient journey, from the diagnostic odyssey and the processing of a diagnosis to ongoing support when accessing care and treatment.

In June 2023 the Scottish Government published a new Mental Health and Wellbeing Strategy. The Rare Conditions Policy Team worked with colleagues to ensure that the strategy met the needs of those living with rare conditions. The framework also recognises the inequalities in mental healthcare and that those with a long-term physical health condition are more likely to report lower mental wellbeing. The new strategy highlights the need for early intervention and targeting evidenced based approaches for particular groups and communities who are at greater risk of poor mental health. This includes people with long-term physical health conditions.

Action 14: Continuing to promote and embed Person-Centred Care

We will continue throughout the lifespan of this person-centred Action Plan to promote and embed person centred care ensuring those with lived experience are at the heart of the services we are delivering.

The VOICES (Vasculitis Outcomes In relation to Care Experiences) study is an exemplar of inclusivity and equity in patient partnership with patient partners involved in study design, delivery and analysis, and co-producing outputs grounded in patient experience. Systemic vasculitis is an exemplar group of multi-system non-genetic rare conditions. Funded by Versus Arthritis, and recently completed in September 2023, the VOICES study systematically examined how healthcare is experienced by patients and staff living with, and caring for, people with systemic vasculitis, and delivered across diverse healthcare systems. It identified key service components (supporting timely access to services, integrated care, and access to expertise) associated with improved health outcomes using population-level data in Scotland. These results may also be applicable more widely to healthcare services for people living with multi-system rare conditions.

This work has been recognised by an NIHR Innovation and Inclusion award for patient partner involvement. As part of this work an online resource for people with vasculitis has been created, including filmed stories from people living with vasculitis. By hearing other people’s experiences, the hope is it might help people living with rare conditions feel less alone. A film was also created based on people’s experiences and ideas for service improvement. This shows how important good communication and coordinated care are to feeling safe.

Getting it Right for Everyone is another good example of person-centred care which is a proposed multi-agency approach to health and social care support and services from young adulthood to end of life care. Getting It Right For Everyone (GIRFE) Pathfinder and Partner teams are currently working to co-design prototypes with people with lived experience, building on the insights, ideas and concepts which have been developed throughout the co-design process so far. Pathfinder teams will work together to design national level initiatives, which can be tested in their own localities (and in others).

Many ideas and initiatives, co-designed by pathfinders in Autumn 2023, centred on the team around a person, multi-disciplinary teams, care planning, support for carers and advocacy. The ‘Team around the Person’ will be the initial focus of GIRFE prototyping.

Pathfinder teams will work together and in their localities to co-design prototypes with people with lived experience and will come back after each round to discuss and iterate these at a national level. From Autumn 2024, we expect to be able to share findings from the development of the ‘team around the person’ prototypes and recommendations for next steps. These will form the first iteration if the GIRFE ‘team around the person’ toolkit, allowing national implementation.