Long term conditions framework: consultation analysis

6. Question 4

What would help people with a long term condition find relevant information and services more easily?

Introduction

The vast majority (92%) of respondents answered Question 4. The analysis identified four themes comprising:

• theme 1: accessible information and services available in a range of formats and settings
• theme 2: a national or centralised one-stop shop – digital front door
• theme 3: proactive and coordinated signposting and referral pathways, including a single point of access/contact
• theme 4: education and training for healthcare professionals

Theme 1: Accessible information and services available in a range of formats and settings

Under theme 1, two sub-themes emerged, including:

• using a variety of formats and settings
• condition and non-condition specific information

Using a variety of formats and settings

Many individual and organisation respondents said that accessible information and services available in a range of formats and settings could help people with long term conditions find information and services more easily. They said that this was key to the ‘effective management of long term conditions.’ These responses acknowledged that people with long term conditions accessed and used information from a range of in-person and online sources – statutory health and third sector advocacy organisations websites, and from healthcare professionals such as GPs, specialist clinicians, community nurses, link workers, allied health professionals, pharmacists, optometrists, and word of mouth were all mentioned.

Respondents emphasised the importance of:

• using different channels and formats:
  • physical – information and advice leaflets, posters and booklets, self-management workbooks, emails, and letters.
  • online – public and third sector websites (for example, NHS Inform, NHS websites), social media channels, mobile apps, visual guides and videos, patient forums, other digital tools and resources
  • TV, radio, and newspapers – national public health messaging, campaigns, and discussions, and articles
• understanding diverse needs – including those with visual, auditory, cognitive and physical impairments, and systems which made alternative formats readily available, such as British Sign Language (BSL), Easy Read, Braille, Large Print, audio and other formats, in different languages, access to interpreters, culturally appropriate support, and age-appropriate communications
• a balance between online and physical information – recognising that digital services were not accessible to everyone, and that some population groups lacked digital skills and literacy or had data sharing concerns
• different places and settings – for example, community and health centres, GP practices, care homes, libraries, pharmacies, public buildings, social spaces and hubs (including schools/colleges, leisure centres and sports clubs, and places of worship), workplaces, and other public places and settings (for example, in supermarkets, on business and trains)
• proactive outreach – especially for people who were isolated, marginalised, or that have complex conditions
• supported self-management – information and resources, peer support

Condition and non-condition specific information

Many respondents highlighted the importance of condition-specific information and services (including for less common or misunderstood conditions) and tailored information and services for different population groups. Others also mentioned the importance of non-condition specific information and support (for example, benefits, workplace support).

Theme 2: National or centralised one-stop shop – digital front door

Many respondents expressed support for a national or centralised one-stop shop approach to help people with long term conditions and healthcare professionals find information and services more easily. Suggestions included support for:

• a one-stop-shop or similar, including ‘joined-up digital hub’ or ‘online portal for all long term conditions’ – this could provide a consistent, high quality message and reduce duplication of effort across heath board areas
• improving and enhancing NHS Inform – this was considered a ‘well-established’ and ‘valued source’ of trusted information with feedback that the Long Term Conditions Framework could support the expansion of its content and functionality
• the creation of condition-specific hubs
• digital front door – some organisation respondents expressed support for the work underway in Scotland to develop a ‘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

Respondent quotes which illustrate these points are presented below.

“Single, trusted points of access: having a dedicated, well-publicised hub, such as a website, helpline, or community centre, would allow people to access high-quality, up-to-date information about their condition, local services, and support options in one place.” Royal College of Nursing Scotland (RCN Scotland)

“Condition-specific hubs like the SPEN website, in collaboration with third sector organisations, provide trusted, accurate, and relevant information. Overall, centralised but condition-specific platforms are more effective than generic portals.” Scottish Paediatric Epilepsy Network (SPEN)

“A digital hub, such as the proposed ‘Digital Front Door,’ could be an effective long-term solution if it includes personalised filtering by condition, location, and need. Integration with GP records and inclusion of third-sector and community-based support would enhance its utility and accessibility.” Public Health Scotland

Theme 3: Proactive and coordinated signposting and referral pathways, including a single point of access/contact

Many respondents said that a more proactive and coordinated approach to signposting and clear referral pathways (including self-referral) could help people with long term conditions find information and services more easily.

To ensure easy access to information and services, these responses suggested a strengthened ‘person-centred approach’ (for example, a named ‘single point of contact’ such as a ‘dedicated care coordinator’, ‘Link Worker’, or ‘Social Prescribing role’). Within these responses, there was broad reference to:

• an identified need for people with long term conditions to better understand what services were available, how to access them, and what to expect
• people with long term conditions often feeling they leave an appointment with little or no information about what to do next after receiving a diagnosis
• the complex and fragmented landscape – the importance of supporting and guiding people with long term conditions to navigate this
• helping people with long term conditions make informed decisions at every stage of their care and during critical transition points such as initiating treatment, experiencing relapse, or as the condition progresses
• the importance of connecting people with long term conditions to clinical and non-clinical services, including community activities, groups, and services to address the practical, social, and emotional needs affecting their health and wellbeing – and closer collaboration and enhanced coordination between statutory services and the third sector
• the importance of trusted relationships and continuity of care – in helping people with long term conditions find information and services more easily – and, importantly acting on that information
• improved access to information and services could reduce delays in people accessing services and improve efficiencies in the system

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

“A co-ordinator allocated to the individual or a referral to a specialist centre. Individuals and carers don't know what they don't know. There are all too often websites that are not maintained and contact numbers that have an answer machine that take weeks if not months to respond.” Individual respondent

Theme 4: Education and training for healthcare professionals

Some individual and organisation respondents (including third sector organisations) recognised the important role that primary care providers, including GPs and other community-based health professionals, play in helping people with long term conditions find relevant information and services more easily.

They said that awareness building, education, and training for healthcare professionals in primary and secondary care was essential to help them provide effective support, such as signposting.

A respondent quote which helps to illustrate this point is presented below.

“It’s not just the public who need this information – GPs and primary care teams do too. Too often, patients are told there’s ‘nothing available’ when the truth is that services exist but are unknown to the professionals they rely on. A Scotland-wide, mapped directory of services, updated regularly and made available to all referrers, could make a significant difference.” Individual respondent