Long term conditions framework: consultation analysis

Executive summary

Introduction

This executive summary presents the high-level findings from the independent analysis of responses received to the Scottish Government consultation on the Long Term Conditions Framework. It does not report on the consultation analysis question by question – rather it looks to draw out key and recurring themes.

A total of 371 validated responses have been included in the final analysis. The majority (60%) of responses were received from individuals (for example, people with long term conditions, people who work in the health and social care sector), and the remainder of responses (40%) were from a wide range of public, third and private sector organisations.

As part of the consultation process, six focus groups were held with seldom heard groups to reach those who may not traditionally respond to public consultations to ensure the consultation captured a diverse range of views. Key messages from the focus groups aligned with those from the public consultation.

Setting the analysis in context

Responses to questions asked within the consultation paper were often framed by respondents (particularly service providers and third sector organisations and individual respondents) in the context of the challenges currently facing the health and social care sector in Scotland. The challenges mentioned in these responses included:

• workforce recruitment and retention challenges
• funding and capacity pressures
• waiting lists and the impact on access to treatment, care, and support
• public trust in the health and social care system

Further, responses to consultation questions were often framed in terms of the valuable role of the third sector in providing support to people with long term conditions. Points frequently raised in responses included:

• the historic under-recognised value and contribution of third sector services outside of medical care in helping people to manage long term conditions
• the role of the third sector in bridging gaps in public sector provision
• sustainable and longer-term funding for the third sector – equal partners in care delivery for people living with long-term conditions
• workforce recruitment and retention challenges

Moving from a condition-specific policy approach to one that has a balance of cross-cutting improvement work for long term conditions alongside condition-specific work

The vast majority of respondents (80%) who answered the consultation question agreed that the Scottish Government should move from a condition-specific policy approach to one that has a balance of cross-cutting improvement work for long term conditions alongside condition-specific work. These respondents:

• identified several benefits to adopting a cross-cutting approach – for example: whole-system, person-centred and integrated models of care; improved coordination of care; increased efficiency of healthcare delivery; and reduced siloed working practices and improved pathways
• emphasised that highly specific condition-specific improvement work should continue to be undertaken alongside cross-cutting work

The remainder of respondents (20%) who answered this question disagreed with the Scottish Government proposal. These respondents identified a risk of losing momentum, focus and progress on condition-specific work as well as unintended consequences.

How condition-specific work could be selected

The importance of condition-specific work was emphasised by respondents throughout their responses to the consultation questions. Personalised and tailored care and support was viewed as critically important to improve the early diagnosis, treatment, care, and management of long term conditions – and that this could help to improve outcomes and enhance quality of life for people.

In thinking about how areas for condition-specific work could be selected (that is, work which is very specific to a health condition or group of health conditions, rather than across conditions), respondents identified considerations including:

• the prevalence and impact of long term conditions
• selection should be guided by evidence and data
• the importance of tackling health inequalities and addressing unmet needs

Equitable access

Equitable access to information, care, treatment, and support services was considered vital regardless of condition, location, or background. Respondents said this could help: initiate early intervention from the point of diagnosis onwards; people make informed decisions about their health, treatment, care, and support; and empower people with long term conditions take ownership of their own health and care.

Prevention and early intervention

A recurring theme in consultation responses was prevention and early intervention activity in its many different forms – support was expressed for this to be embedded in the Long Term Conditions Framework. An increased focus on prevention and early intervention was seen as critical to help address issues before they escalate, support better physical and mental health and wellbeing, and reduce pressure on health services.

Whole-system, person-centred and integrated models of care

Respondents expressed support throughout the consultation for whole-system, person-centred and integrated models of care. They emphasised that many people experience multiple symptoms or conditions which are often interlinked. They added that a whole-system approach could help services respond more effectively to the real world complexity of people’s lives, especially where multimorbidity and inequality are key factors. The important role of multi-disciplinary teams in the delivery of integrated care and support to people with long term conditions – and continuity of care – were also emphasised. Respondents felt that continuing efforts were required to:

• improve communication and joined-up working between health care professionals
• improve communication between healthcare professionals and people with long term conditions

Digital infrastructure improvements were viewed by respondents as part of the solution. For example, taking forward work aligned to the ‘digital front door’ – a health and social care app that will enable people in Scotland to interact more effectively with health and social care services. As well as addressing wider challenges around fragmented IT systems which could hinder the effective communication between service providers. Ensuring that all healthcare professionals involved in a person’s care could access relevant information was considered vitally important – as was ensuring people with long term conditions could see their own health information and records.

Respondents mentioned the importance of digital tools and resources (in their many different forms) complementing not replacing other delivery methods. They advocated for a balance between physical and online information and services for people with long term conditions and for people who care for them – and for accessible information and services to be available in a range of formats and settings.

Tackling inequalities and barriers to accessing information, care and support

Respondents highlighted the multi-faceted nature of the barriers faced by people with long term conditions accessing information, treatment, care, and support services.

They also stressed the importance of holistic support that addressed the broader determinants of health – for example, welfare rights and financial advice services, employment advice, housing advice services. Respondents emphasised that barriers could be particularly pronounced for: those living in rural and island communities; those living in disadvantaged areas; disadvantaged or marginalised groups; people from lower socio-economic backgrounds; and people with protected characteristics. Across various consultation questions a common set of barriers emerged from responses, including:

• a lack of knowledge and awareness of services and how to access them
• personal, psychological, and attitudinal barriers
• physical and geographic barriers
• financial barriers
• digital accessibility, connectivity, literacy, and confidence barriers
• language, cultural and communications barriers
• organisational barriers

Respondents also emphasised the importance of:

• co-developing information and services with input from people with lived experience, grassroots organisations, and healthcare professionals
• adopting an inclusive communications approach
• improving health literacy
• psychologically informed information and services
• culturally appropriate information and care

The importance of access to non-medical services

Services outside of medical care were considered particularly helpful for people in managing long term conditions. Here, consultation respondents highlighted the valuable contribution of third sector and community-based support that provides trusted information and advice, emotional and practical support, advocacy, peer networks, tailored support for specific conditions, and general support that complements clinical care. Wider points raised by respondents included that non-medical services should be available close to home, and there was recognition of the important care and support provided to people with long term conditions by local authorities, unpaid carers, family members, and friends.

Workforce development

Workforce development and training for healthcare professionals (at all levels) was considered important to: help healthcare professionals better understand individual conditions; improve communication and interaction with people with long term conditions; and improve proactive signposting and referral to medical and community-support.