Long term conditions framework: consultation analysis

3. Question 1

Do you agree 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?

Introduction

Section 3 provides an overview of:

• the response to the closed-question (Question 1)
• the views of respondents who agreed with the proposal
• the views of respondents who disagreed with the proposal
• the view of respondents who were unsure

Closed-question response

The vast majority of respondents (80%) who answered Question 1 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, Table 3.1 . The remainder of respondents (20%) who answered this question disagreed with this proposal.

Base = 333 (38 individuals and organisations did not answer this closed question)

A small number of respondents, almost exclusively organisations, did not answer the closed-ended question. A review of the qualitative feedback indicates that most of these respondents considered the proposal a ‘complex’ issue and that it was not possible for them to provide a simple ‘Yes’ or ‘No’ response.

Some said that they would have welcomed a ‘not sure’ or ‘don’t know’ category^[1]. Further, some organisations had consulted with people with lived experience of long term conditions and/or with staff, members, or stakeholders to inform their consultation submission, and views on the Scottish Government proposal were mixed.

Table 3.2 provides a further breakdown of responses to Question 1 by organisation sub-category. A sizable proportion (38%) of third sector organisations disagreed with the Scottish Government proposal.

Base = 118 (29 organisations did not answer this closed question)

Respondents who agreed with the proposal

As noted above, 80% of respondents who answered Question 1 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.

Most respondents who expressed support intimated in their response that this either ‘made sense’, or was ‘a welcome and necessary shift’, ‘desirable’, ‘a long-overdue step’, or ‘a positive move to address inequities in service provision.’

The main themes that emerged from these responses were:

• theme 1: several benefits to adopting a cross-cutting approach
• theme 2: highly specific condition-specific improvement work should continue to be undertaken alongside cross-cutting work
• theme 3: other issues and challenges raised

Theme 1: Several benefits to adopting a cross-cutting approach

Respondents who agreed with the Scottish Government proposal identified benefits of moving away from the current condition-specific policy approach, including:

• whole-system, person-centred, holistic, and integrated models of care
• equitable and sustainable access to care, treatment, and support
• an increased focus on prevention and early intervention
• a unified approach could be easier to communicate

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

These respondents expressed support for a policy approach that has a balance of cross-cutting improvement work for long term conditions alongside condition-specific work, and said this was sensible as:

• changing demographics (ageing population) meant that most people would experience the older or latter stages of life with multiple long term conditions
• many people experience multiple long term health conditions that are overlapping, linked or intersect across their life – a policy approach that focused on multi-morbidity rather than a condition-specific approach better reflected the reality for many people living with long term conditions
• many aspects of living with a long term condition were considered shared across different conditions – for example, symptoms like fatigue and pain, the development or progression of mental health conditions, the value of accessing peer support and supported self-management, and challenges in accessing statutory services and timely diagnoses
• it could help services respond more effectively to the real world complexity of people’s lives, especially where multimorbidity and inequality are key factors to help people with long term conditions live healthier lives and improve patient care and outcomes
• it provided an opportunity to design services in a more integrated, person-centred way that made best use of available expertise across the system (for example, supported self-management, prevention and early intervention). This could help by: reducing duplication of effort, appointments, and reviews; reducing unnecessary referral journeys; ensuring interventions covered all of their needs; and maximising resource efficiency.

Equitable and sustainable access to care, treatment, and support, especially for marginalised and underserved groups

These respondents said a cross-cutting approach could ensure people have equal access to the care, treatment and support they need ‘regardless of the specific long term condition’ they have.

Points raised included a perception among these respondents that: some long term conditions are currently ‘neglected and others prioritised’; there could often be a ‘focus on certain conditions’; access to care, treatment, and support could be a ‘lottery’ for some people with long term conditions depending on where they lived; or that some conditions were not covered by existing strategies and ‘under-resourced’; and that the proposed approach could help to ‘close the gap.’

Prioritise early intervention and prevention

Respondents said that cross-cutting work could allow for ‘upstream, preventative interventions’ which would help address the common risk factors across multiple long term conditions, such as physical inactivity and poor diet.

A unified approach could be easier to communicate to the general public and healthcare staff.

Respondent quotes to illustrate points raised under theme 1 are provided below.

“People would benefit from having someone at the centre point of care, to listen to their issues. This person, who would have experience of many medical conditions (for example, a GP who would be provided with longer appointment times to listen fully to the person with multiple conditions) would ensure they were referred to the right specialty for that issue and be able to keep in touch with them throughout their care. This would allow continuity of care and familiarity. The person at the centre of care should also be aware of all services outside the NHS that could help with that condition.” Individual respondent

“There is significant benefit from having a non-condition specific approach in the management of resources especially in remote and rural areas. For those with long term conditions having support within a group where people have different conditions can be very supportive rather than seeing those with the same diagnosis. It also allows more of a focus on what the individual can do rather than what stage they are at with their condition.” Individual respondent

Theme 2: Highly specific condition-specific improvement work should continue to be undertaken alongside cross-cutting work

Many of the respondents supportive of the proposal also indicated that the new policy approach would need to strike an appropriate balance between enhancing cross-cutting improvement work alongside condition-specific work where required, rather than ‘focussing exclusively on one or the other.’

These respondents emphasised that a balanced approach would be critically important as condition-specific work remained essential to maintain the momentum of condition-specific policy work. It was also noted that a policy shift must be implemented with flexibility and sensitivity to the unique needs of individual conditions.

Respondents intimated the policy change should not result in less funding or resources for condition-specific work, and ‘cannot be viewed as a way to cut essential specialist services’, or that the primary objective for the new policy approach should not be ‘cost saving’. Further, they emphasised that care was needed to ensure there were ‘no unintended consequences’ of moving away from the current condition-specific policy approach. These responses highlighted potential risk factors including:

• a ‘generic model’ could dilute the focus on disease-specific needs and outcomes
• loss of investment, existing specialist services and approaches, and focus/ attention on specific conditions
• pitting different organisations and conditions against one another for attention under a single Long Term Conditions Framework
• the existing ‘uneven landscape’ of support for different conditions may build inequality into the new framework from the start
• if care for long term conditions were to be streamlined, this could necessitate greater administrative or delivery burden on decision-makers or frontline services, or come at the expense of supporting preventative approaches

Further, organisation respondents called for greater clarity on:

• how existing condition-specific strategies and related actions and services would be taken forward in the future?
• what would happen with existing strategies that have not come to the end of their current delivery cycle?
• the role that current clinical oversight groups would have in guiding the implementation of the framework?
• what would be included under the umbrella of long term conditions in a new framework?
• how future condition-specific work would be integrated into a new framework?
• how would the framework address the intersectional challenges and health inequalities experienced by many people with long term conditions?
• how strategic planning would take place on action plans delivered as part of the framework?
• how measures would be prioritised and funded within the framework?

Some respondents highlighted: the ‘continued value of targeted strategies for specific conditions where personalisation is important’; that ‘there remains a very important role for condition-specific focused policies to continue’; that it would be important ‘to acknowledge the unique characteristics of specific conditions and recognise that condition-specific work remains vital to quality care’; ‘that efforts to improve treatment, care, and wellbeing should always be done through the lens of a condition and age-specific approach.’

Respondent quotes to illustrate points raised under theme 2 are provided below.

“We would recommend that cardiovascular disease maintains a separate, condition specific policy approach to continue to build upon the progress in the Heart Disease Action Plan 2021. We feel this would maintain and consolidate a focus on cardiovascular disease in Scotland at a time when this is particularly important, while facilitating cross-cutting and collaborative working to improve the lives of all living with long term conditions.” National Heart Disease Task Force

“It is crucial that this change in approach does not reduce or undermine access to specialist care, where appropriate…a move towards a cross-cutting approach should not mean that these specialist skills are lost in favour of a more generalist approach.” Royal College of Nursing Scotland (RCN Scotland)

Theme 3: Other issues and challenges raised

Other issues or challenges raised by respondents who agreed with the proposal to move towards a balance of cross-cutting improvement work for long term conditions alongside condition-specific work are outlined below. Each point was raised by a very small number of respondents. Points raised included, for example:

• the scope of the proposed framework appears to be ‘overly focused on physical health conditions’, failing to recognise the prevalence of long term mental health conditions in Scotland
• concerns were raised that there could have been a more significant consultation process given the scale of the policy shift
• terminology used (for example, ‘burden’) risks reinforcing negative perceptions and could lead individuals with long term conditions to internalise harmful labels – using ‘empowering and respectful’ terminology was suggested

Respondents who disagreed with the proposal

As noted above, 20% of respondents who answered Question 1 disagreed with the Scottish Government proposal. The main themes included:

• theme 1: there could be a risk of losing momentum, focus and progress on condition-specific work as well as unintended consequences
• theme 2: other reasons or concerns raised

Theme 1: There could be a risk of losing momentum, focus and progress on condition-specific work as well as unintended consequences

Most respondents who disagreed with the proposal felt the proposed shift in policy emphasis could risk losing momentum, focus and progress on condition-specific work and result in unintended consequences.

These respondents raised similar points as covered in theme 2 above (where respondents agreed with the proposal), and wider feedback included that:

• it would be important to recognise the experiences and needs of people with long term conditions were not the same and that specialist care was needed for the best possible outcomes
• condition-specific strategies were not considered a barrier to integrated care – they suggested this ensured specialist knowledge, tailored care pathways, national audits, multidisciplinary standards, and targeted investment were in place to meet the needs of people with complex health conditions

A respondent quote to illustrate points raised under theme 1 is provided below.

“I recognise that condition-specific work will still continue however through creating a work programme that encompasses all long term conditions, this holds the risk of losing patient-centred care, and not meeting the health, support and social care needs of the population.” Individual respondent

Theme 2: Other reasons or concerns raised

A small number of respondents who disagreed with the proposal expressed similar concerns to those raised in theme 2 and theme 3 above (by respondents who agreed with the proposal). This included calls for greater clarity in aspects of the Scottish Government proposal (for example, around the selection and definition of long term conditions) and the risk of inequalities in support for different conditions being built into the new framework from the start.

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

“It is not clear what conditions may or may not be included or excluded in this policy work and what the rationale for this is. Until this is clear, it is difficult not to conclude that grouping a number of conditions together is either a cost-cutting exercise, in which case we are incredibly concerned about the detrimental effects for people with Cerebral Palsy or else is it a lack of understanding of the detail and the nature of different conditions and lack of capacity to engage with the nuances and issues raised by such conditions.” Cerebral Palsy Scotland

Respondents with mixed views on the proposal

A small number of respondents intimated they either responded ‘No’ to Question 1 or did not answer the closed question. These respondents typically said it was not a straight ‘Yes’ or ‘No’ response, and responses set out the pros and/or cons of the proposal, as reflected in the sub-sections above.