Long term conditions framework: consultation analysis

4. Question 2

Are there any improvements in prevention, care or support you have seen in a long term condition you have, or provide care and support for, that would benefit people with other long term conditions?

Introduction

The vast majority (91%) of respondents answered Question 2. This section provides information on:

• how respondents answered this question
• what was considered to have worked well and/or what could be improved in prevention, care, or support for people with long term conditions
• the views of respondents who said there has been limited improvement in prevention, care, and support for people with long term conditions

How respondents answered this question

Respondents answered this question in different ways. For example, some respondents:

• set out what they considered currently worked well in terms of prevention, care or support for people with long term conditions. These respondents have drawn on: the respondent’s personal or professional experience of long term conditions and existing models of prevention, care, and support; existing review, research, and evaluation evidence; progress made in condition-specific strategies and action plans; and/or on developments from other sectors (or for particular long term conditions) which they felt could be replicated
• described the different ways in which they considered prevention, care, or support for people with long term conditions could be further improved or what this should look like to achieve marked improvements in the future
• identified underpinning principles for the provision of prevention, care, or support, including: whole-person, whole-system approaches; early intervention and prevention; equitable access; continuity of care; the valuable role of community resources and support; and meaningful engagement and involvement of people with lived experience, their families, and carers
• described barriers to the delivery of improvements in prevention, care, or support, including: the historic under-funding of some long term conditions and services; sustainable funding challenges more generally, including for the third sector; reduced budgets, including for preventative support services; reduced investment in research; de-prioritisation of training; downgrading of specialist support; and staff retention challenges, including the loss of specialist knowledge and skills

What worked well and/or what could be improved

The vast majority (85%) of respondents who answered the question set out examples of where improvement work relating to prevention, care, or support for people with long term conditions worked well and/or how it could be further improved. Themes which emerged from these responses included:

• theme 1: prevention and early intervention
• theme 2: access to personalised and specialist care and support
• theme 3: supported self-management
• theme 4: communication and collaboration
• theme 5: involvement of, and support for, carers

Theme 1: Prevention and early intervention

Organisation respondents highlighted their long history of delivering preventative interventions to the public and more specifically to people with long term conditions. They emphasised the importance of primary and secondary prevention in: preventing and detecting ill health or some long term health conditions; improving early diagnosis; delaying deterioration; and reducing pressure on NHS and social care services. They suggested a greater emphasis on early intervention and prevention was required for the proposed framework and the healthcare system in general.

Prevention and early intervention activities and approaches described in responses included:

• public health campaigns and interventions to improve awareness and early detection
• tailored information and education about healthy and active lifestyles and behaviours, such as healthy eating, hydration, regular exercise, smoking cessation, staying in recovery, good sleep, and good mental health
• information and education on individual long term conditions – respondents said this could help with symptoms identification, pain and risk management as well as reduce stigma (for example, information leaflets, condition-specific workbooks, structured education programmes, group-based information and education sessions)
• raising awareness and educating healthcare professionals on long term conditions and preventive measures – particularly in primary care where, for example, general practice (GP) is often a person’s first point of contact
• accessible community-based services and staff (for example, Community Link Workers, wellbeing practitioners) and proactive outreach – for people generally, but more specifically as a way to: help reach people at risk of, or with poor health, who may otherwise be disengaged from public sector health services; facilitate referral/access to appropriate services; and help people to navigate complex systems of care
• routine health check-ups and integrated screening and support (for example, those that use ‘traffic light systems’ were mentioned) help to: identify early health risks; enable earlier intervention; support anticipatory care planning; signpost people to appropriate support such as the third sector, self-help resources, psychosocial groups; and slow progression in some cases
• clinical reviews, routine annual reviews, routine medication reviews, proactive symptom management separate to monitoring reviews – opportunities to consider all the long term conditions a person has in one appointment
• holistic and whole-system approach/working that take account of an individual’s broader needs, and recognise the importance of income security, housing stability, and community connection in health outcomes – this could support a better understanding of, and address the root causes and wider determinants of, poor health and inequalities

A respondent quote to illustrate the points raised is presented below.

“Other potential clinical areas for Community Pharmacy teams to support detection and prevention of long term health conditions include an effective national weight loss service and cardiovascular disease screening. Our network of 1,244 pharmacies are easily accessible and are a key touchpoint for both people who already receive NHS care and those who are disengaged from services – we firmly believe that this accessibility and reach could be harnessed to great impact with respect to detection and prevention of illness.” Community Pharmacy Scotland

There was also acknowledgement that prevention was not always possible for all long term conditions, and feedback was also framed around changing population demographics and the importance of access to specialist care and support.

Theme 2: Access to personalised and specialist care and support

Both individual and organisation respondents said that access to personalised and specialist care and support for people with long term conditions was essential to help ensure effective outcomes. Critical factors identified within these responses included:

• person-centred or whole-person approaches, including personalised care and treatment plans, trauma-informed approaches, recovery focused and outcomes and strengths based approaches as well as needs assessment to understand preferences, values and address barriers to access (for example, choice of appointment type)
• timely access to medical/clinical services (for example, effective treatments and medications, including psychological support, medicines optimisation) and non-medical/non-clinical services (for example, therapeutic services and support, practical and emotional support such as benefits advice, workplace support) – this could provide support for people with long term conditions to live independently for longer
• timely access to relevant health care professionals (for example specialist nurses), including access to highly specialist condition-specific knowledge, understanding, expertise, skills, and care – supported by workforce development
• shared care planning and decision-making, such as involving people in decisions about their care and increased access to health records, care plans and test results – this could give people more autonomy and control of their care and empower people to prepare emotionally, physically, and logistically for treatment
• consistency and continuity of care, including a named single point of contact, integrated and co-located care and support, and ensuring care navigation was optimised across different settings and providers
• embracing digital and advanced technologies, digital wellbeing platforms, Artificial Intelligence (AI) driven tools (for example, chatbots, wearables) and making better use of diagnostic tools, data and analytics to: support digital triage; ensure earlier detection; support home-based care and management; improve confidence, self-monitoring and self-management; allow clinician remote monitoring and save clinical time; enhance engagement; avoid exacerbation of the condition; and reduce unnecessary hospital visits and admissions
• lived experience was considered central to co-designing and delivering inclusive services and systems to drive service improvement

A respondent quote to illustrate points raised under theme 2 is presented below.

“Specialised care and support work best where individuals have named points of contact; where there are joined up care pathways between the NHS, community and local authority.” MND Scotland

Theme 3: Supported self-management

Individual and organisation respondents highlighted the importance of supported self-management in its many forms, as well as the highly transferable nature of this support across different long term conditions.

Peer educators, peer support networks, and community-led support were specifically mentioned in responses, with feedback that this support was a ‘highly valued’ mechanism to: connect people with long term conditions with others who have a similar condition; strengthen informal networks; share experiences; help people feel listened to; enable mutual support; and reduce isolation.

A respondent quote to illustrate points raised is presented below.

“People with lived experience refer to their participation in community-led activity as 'my medication' and credit it with facilitating a lengthier independent, autonomous life. We should learn more about how this happens, gather evidence, and share across long term conditions.” Meeting Centres Scotland

Individual and organisation respondents identified other effective approaches to self-management or self-care as vitally important – for example, educational support and information, personalised action plans, self-management plans, coaching, digital resources, group sessions, drop-in sessions, the provision of practical tools, tips and strategies for self-management, expanding access to self-monitoring equipment and structured self-monitoring plans, and regular check-ins. Points raised included that this type of support could help people with long term conditions to:

• have increased knowledge, skills, and confidence to manage their symptoms and condition, leading to improved engagement with their treatment, reduce hospital admissions, and have a better quality of life
• be empowered to manage their health – to better understand, monitor, and manage their conditions – and live as well as possible with the condition and support good mental health and wellbeing
• build resilience, manage their health proactively, and adjust to the challenges of their long term condition

A respondent quote to illustrate points raised is presented below.

“Dietitians contribute to public health initiatives, such as integrated self-management programmes (including digital resources and group sessions) which have proven effective in diabetes and weight management. Approaches which emphasise patient education, digital support, and regular asynchronous check-ins, could benefit people with other long term conditions by empowering them to manage their health proactively.” British Dietetic Association (BDA)

Feedback on self-management was at times framed within the context of the importance of access to specialist care and support, or self-management as a way for services to save money, as reflected in following respondent quote below.

“Self-management cannot replace specialist healthcare. Treatment is needed first. We want care and treatment, testing and diagnostics first, not ‘support’.” Long Covid Scotland

Theme 4: Communication and collaboration

Respondents highlighted the important benefits that could be derived from: improved and consistent communication; closer collaboration and enhanced coordination between the third sector and statutory services; and greater multidisciplinary integration.

Points raised centred on: reducing siloed working to enhance care; improving ease of referral; joining up care pathways; embedding multidisciplinary models of care and cross sector working; adopting co-produced care models involving voluntary sector organisations to help lead to more trusted, accessible care; having more joint events; and providing increased opportunities to share ideas and resources.

A respondent quote to illustrate points raised under theme 4 is presented below.

“We have also seen the benefit of closer collaboration between optometrists and secondary care. In some areas, optometrists are part of shared care models for glaucoma or urgent anterior eye conditions. These models show that community-based professionals can manage stable cases effectively with the right training and support. This not only benefits patients by reducing hospital appointments but also eases pressure on secondary care.” Optometry Scotland

Theme 5: Involvement of, and support for, carers

A small number of organisation respondents referred to the involvement of, and support for, carers in their response. Important factors in the provision of carer involvement support were identified as:

• involvement in the co-design and improvement of services
• greater recognition of the role of caregivers
• unpaid carer support
• training (for example, moving and handling and other practical skills)
• ensuring carers have access to the information, advice and support they need to support the person with a long term condition they care for – for example, maximising the use of the carers’ passport scheme for unpaid carers
• family-centred clinical teams
• increasing access for unpaid carers (and people with long term conditions and practitioners) to use computer/assistive technology at home

Respondents who said there has been limited improvement in prevention, care, and support for people with long term conditions

Some respondents (all individuals, specifically people or a family member with a long term condition) explicitly said their personal experience was that they have seen limited or no improvement in prevention, care, and support for people with long term conditions. Points raised included:

• some long term conditions were felt to be less well understood or recognised (and resourced) than other conditions
• the time taken to receive a diagnosis and long waiting lists to access care, treatment, and support – and for some the need to access private healthcare
• difficulties in accessing GP appointments
• the short-term nature of some support services
• a poor experience of transitional planning support
• funding issues and constraints

Respondent quotes to illustrate points raised by these respondents are provided below.

“There is absolutely no long term care/support. Any intervention has been short term because of the number of patients waiting for care.” Individual respondent

“Had to seek private health care to find treatments for my long Covid. Meaning I have had patchy treatments and no NHS support.” Individual respondent