Long term conditions framework: consultation analysis

10. Question 8

What barriers, if any, do you think people face accessing these (non-medical) services?

Introduction

The vast majority (88%) of respondents answered Question 8 and typically identified the multi-faceted nature of the barriers faced by people with long term conditions accessing non-medical services. They also 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.

Respondents identified a common set of barriers covering seven themes, including:

• theme 1: organisational barriers
• theme 2: lack of knowledge/awareness of services and how to access them
• theme 3: personal, psychological, and attitudinal barriers
• theme 4: physical and geographic barriers
• theme 5: financial barriers
• theme 6: digital accessibility, connectivity, literacy, and confidence barriers
• theme 7: language, cultural and communications barriers

Theme 1: Organisational barriers

The majority of respondents identified organisational barriers that people faced when accessing non-medical services. These barriers can be summarised as:

• inequality of access across different health board areas – including variation in the range of services available and service capacity (‘postcode lottery’)
• eligibility criteria thresholds and services that required professional referral – respondents said this may delay support or exclude those who would benefit but do not meet arbitrary thresholds
• fragmentation of service delivery and siloed working between services
• a reliance on healthcare professionals to signpost and/or refer people with long term conditions to appropriate services outside of medical care – a lack of awareness and understanding among healthcare professionals of individual conditions and likely progression could lead to poor clinical signposting and integration
• sector challenges – long waiting lists, reducing budgets, a lack of long-term sustainable funding, workforce challenges, a lack of recognition or value placed on third sector services
• bureaucratic obstacles such as: navigating the system to access publicly funded or grant funded non-medical services; time constraints on clinicians; and a lack of flexibility to facilitate person-centred and holistic approaches
• a medical rather than social model of health

Theme 2: A lack of knowledge and awareness of services and how to access them

Many respondents said that people with long term conditions lacked awareness, knowledge and understanding of: the range of services outside of medical care available locally; the potential benefits of non-medical services; the quality of these services; and how to access them.

Further, there were said to be several factors at play, including:

• the extent to which high-quality and up-to-date information was available in a range of formats and settings – and a lack of inclusive communications
• misinformation and conflicting information and advice
• ineffective signposting and referral pathways
• the person’s poor health may constrain their ability to search for and find information on services outside of medical care that could help them

Theme 3: Personal, psychological, and attitudinal barriers

Many respondents identified the range of personal, psychological, and attitudinal barriers that people faced when accessing non-medical services, including: feeling not valued or listened to; poor physical and/or mental health; perceived importance or relevance; reluctance to engage with non-clinical services (for example, mistrust of unfamiliar agencies or have concerns around confidentiality); lack of motivation, confidence, or self-esteem; social isolation; emotional readiness, fear and anxiety; shame and stigma; and time constraints (for example, time off work or caring responsibilities).

Theme 4: Physical and geographic barriers

Some respondents identified the range of physical and geographic barriers that people faced when accessing non-medical services, including:

• physical accessibility issues – relating to the accessibility or otherwise of buildings, including the availability of accessible facilities
• geographic location – for example, distance to services (particularly for those in rural or island communities), poor public transport links, lack of access to a car, transport costs
• environmental factors – for example, poor weather conditions which could affect the ability to travel

Theme 5: Financial barriers

Some respondents mentioned the range of financial barriers that people with long term conditions faced when accessing non-medical services. The feedback was often framed in the context of the cost-of-living crisis, the impact of long term conditions on the ability to work, and the pressure on household income.

Financial barriers identified included: transport costs to and from appointments; the cost of accessing non-medical services (for example, gym memberships); the cost of accessing support longer-term and/or private sector provision; the cost associated with digital access; and confusion about funding and whether sessions would be covered by insurance or public health services.

Theme 6: Digital accessibility, connectivity, literacy, and confidence barriers

Some respondents (mainly organisations) highlighted barriers related to digital accessibility, connectivity, literacy, and confidence barriers, including for particular groups of people with long term conditions. The main points raised in these responses were:

• digital poverty and exclusion – factors such as a lack of access to devices, inadequate internet connectivity, and insufficient digital skills
• fear of cyber-attacks or data breaches
• a lack of integrated digital pathways linking hospital-at-home services, primary care, specialist teams, and community support – meaning patients often still required multiple points of contact rather than seamless coordination
• insufficient patient awareness and education about the availability and benefits of technologies (for example, remote monitoring or hospital-at-home options), meaning uptake remained lower than it could be

Theme 7: Language, cultural and communications barriers

A small number of respondents (primarily organisations) mentioned language, cultural and communications barriers in their responses. They also specifically mentioned minority ethnic communities and people with learning difficulties or neurodivergent conditions. The main points raised in these responses included:

• language barriers and insufficient translation of materials, which could limit understanding and engagement with services
• cultural misunderstandings – the need for culturally sensitive options, such as multilingual materials, dietary needs, inclusive settings, women-only groups
• a lack of funding for, and access to, interpretation services
• cultural stigma – for example, expectations to ‘cope’ without external support