Long term conditions framework: consultation analysis

5. Question 3

Do you have any thoughts about how areas for condition-specific work should be selected? This means work which is very specific to a health condition or group of health conditions, rather than across conditions.

Introduction

The vast majority (84%) of respondents answered Question 3. This section provides information on how respondents answered this question, and then describes the themes that emerged from the analysis, including:

• theme 1: how condition-specific work could be selected
• theme 2: conditions that could be prioritised
• theme 3: other points raised

How respondents answered this question

Some respondents outlined potential methods and metrics for how condition-specific work could be selected or prioritised in their response. Others advocated on behalf of a specific health condition or group of long term conditions to be explicitly considered by the Scottish Government for condition-specific work as part of the Long Term Conditions Framework.

Theme 1: How condition-specific work could be selected

Over half (56%) of respondents outlined their thoughts about how areas for condition-specific work could be selected or prioritised. Please note that most of these respondents identified multiple factors or considerations which were not considered mutually exclusive. Related points raised under theme 1 have been grouped as follows:

• the prevalence of long term conditions
• the impact of interventions
• selection of condition-specific work should be guided by evidence and data
• tackling health inequalities and addressing unmet needs
• · a person-centred approach

The prevalence of long term conditions

The most common factor identified by both individual and organisation respondents was that condition-specific work could be selected based on the prevalence of the condition amongst the general population. This view was largely predicated on the fact that long term conditions with the highest prevalence have the largest population level impacts, and the largest number of people possible could benefit from condition-specific work.

Further, some of these respondents also recognised the importance of a focus on rarer conditions which could have a large impact on people.

Respondent quotes which illustrate points raised are presented below.

“Conditions should be selected based on need and population density as we know that long term conditions are the main drivers for GP appointments and hospital stays (in 2009 long term conditions amounted to 70% of appointments and bed stays) together with an increased cost on health and social care.” National Rheumatoid Arthritis Society (UK)

“It is difficult to give a single answer. Obviously while resources are limited, the focus should be on those conditions that affect the majority of the population and on the types of approaches that have the greatest impact (for example, prevention). But it is also important to consider rarer conditions that could have a lifelong impact.” The Innovative Healthcare Delivery Programme (IHDP) Patient and lived experience reference group

The impact of interventions

Organisation and individual respondents suggested that the Scottish Government could consider the impact that any particular condition-specific work would have when selecting or prioritising areas. These respondents felt it would be important to target limited resources at areas which have the biggest burden on health and quality of life and where there were cost-effective and impactful interventions. Further, it was suggested that interventions which helped reduce the financial burden on the NHS in the longer-term, such as preventative medicine, could be prioritised to help use/allocate resources more effectively.

A small number of respondents felt that consideration could be given to the economic impact of condition-specific interventions, such as those which enabled people who were economically inactive to re-enter the workforce and sustain employment.

A respondent quote which further illustrates points raised is presented below.

“Other key areas should be a focus on high “economic/cost” burden such as highest hospital admissions, greatest drug costs, highest GP/outpatient and other multidisciplinary team appointments. A focus should also be where there are gaps or unmet needs in long term conditions.” The Royal Pharmaceutical Society

Selection of condition-specific work must be guided by evidence and data

Some respondents, primarily organisations, expressed support for selecting condition-specific work guided by robust evidence and data.

Whilst they also advocated for prioritisation based on factors outlined elsewhere in this section, they considered it vitally important that the selection process was transparent, evidence-based, and data and health intelligence driven in order to determine priorities, allocate resources more effectively and improve population health outcomes.

Tackling health inequalities and addressing unmet needs

Some respondents, primarily organisations, said that the Scottish Government could consider how best to tackle health inequalities and address unmet need when selecting areas for condition-specific work. Specific examples of population groups that experience health inequalities included:

• people living in socio-economically disadvantaged areas – for example, the link between deprivation and poor health was made as well as increased prevalence of developing one or more long term conditions
• minority ethnic communities are more likely to suffer poorer health outcomes, be affected disproportionately by socio-economic inequality, discrimination and other structural drivers of racism
• other population groups that share certain protected characteristics
• people living in rural and island areas – for example, geographic barriers to accessing services, care, and support

A person-centred approach

Some respondents, largely individual and third sector respondents, said that a person-centred approach should underpin how areas for condition-specific work were prioritised and selected. Among other things, these respondents emphasised the importance of ensuring the meaningful participation of people with lived experience of long term conditions or a ‘human rights budgeting approach’.

Theme 2: Conditions that could be prioritised

Around one-quarter (26%) of respondents identified a specific health condition or group of health conditions which could be considered when selecting areas for condition-specific work. Conditions mentioned in responses included:

• mental health
• long COVID and fatigue syndromes
• kidney disease
• other specific conditions

Mental health

Some respondents, primarily individuals, identified mental health as an area that could be prioritised for condition-specific work and/or a cross-cutting theme within the framework.

These respondents felt the current standard of mental health services in Scotland was not sufficient to meet growth in poor mental health among the Scottish population, including people with long term conditions.

These responses mentioned issues relating to the quality of mental health care services as well as long waiting lists and called for greater prioritisation and additional resources for mental health. Some also said that people managing one or more long term conditions were more likely to develop or suffer from poor mental health.

They advocated for increased availability of, and access to, mental health support services for people with long term conditions as it plays an important role in helping people to be more proactive in their engagement with their treatment, care, and support, as well as helps people to make important lifestyle changes. They emphasised the interaction between mental and physical health which they said called for a more integrated approach.

A respondent quote which illustrates these points is presented below.

“In my role as a Principal Health Psychologist…I have seen clear and consistent evidence that psychological interventions, behaviour change strategies and self-management approaches led by Health Psychologists can make a real and lasting difference to people living with long term conditions. These approaches are highly transferable. While tailored to individual needs, the underlying principles apply across a wide range of conditions.” Individual respondent

Long COVID and fatigue syndromes

Some respondents (almost all individuals and third sector organisations) suggested that long COVID and fatigue syndromes such as ME and Chronic Fatigue Syndrome could be prioritised for condition-specific work. The main points raised were that these conditions were considered poorly understood and resourced, despite their high prevalence among the general population and the long term effects of these conditions on a person’s overall health and wellbeing.

A respondent quote which illustrates points raised is presented below.

“The Scottish Government must be willing to acknowledge and prioritise disabling conditions like long Covid, ME/CFS, PoTS, and FND. These conditions are under-recognised, under-reported, poorly resourced, and often dismissed. While they share overlapping features – such as dysautonomia, post-exertional symptom exacerbation, and neurological symptoms – each also has distinct clinical presentations and needs. Policy must be precise enough to reflect both the overlap and the differences.” Individual respondent

Kidney disease

Some respondents, mainly kidney disease related third sector organisations, highlighted the need for condition-specific work on kidney disease. Similar to the feedback on long COVID and fatigue syndromes, these respondents said that kidney disease has insufficient priority despite its high prevalence among the general population and its major impact on people living with this long term condition.

Other specific conditions mentioned in responses

A small number of respondents (largely individuals and third sector organisations) advocated for other specific conditions to be considered for condition-specific work. These responses included a mix of:

• those that called for a greater focus/prioritisation of a specific condition
• conditions that currently have a condition-specific strategy or action plan

This includes conditions such as: respiratory conditions, Crohn’s disease and colitis, dementia, diabetes, stroke, chronic Lyme disease, and HIV.

Theme 3: Other points raised

Other issues raised by respondents to Question 3 included:

• avoiding competition between conditions with concerns that selecting areas for condition-specific work could result in pitting different organisations and conditions against one another for attention under a single framework
• condition-specific work should be selected in a collaborative basis including wide ranging consultation and engagement with healthcare practitioners, the third sector, and people with lived experience of long term conditions, amongst others
• · condition-specific work should be retained to avoid losing focus, momentum, and progress on specific long term conditions
• unintended consequences of moving to a unified approach could be that it may be harmful to people with long term conditions if treatment, care, and support becomes more generalised rather than based on individual needs, and it could also reduce access to specialist care and skills

A respondent quote which illustrates these points is presented below.

“Informed selection of the condition-specific work must be achieved through full, open and equal consultation with all healthcare staff involved in the prevention, diagnosis and management of each condition, and input from patients managing their own conditions.” Royal College of Podiatry