Long term conditions framework: consultation analysis

Appendix B: Focus groups summary

This appendix provides an overview of the main themes that emerged from a review of the six focus group event notes.

The focus groups did not entirely follow the layout of the consultation document – rather they asked key questions relevant to the groups attending each focus group. These questions predominantly focused on barriers to accessing information, care and support, and how people with long term conditions could be supported to access information and support more easily.

There were strong recurring themes spanning the focus group events, including:

• language and communication barriers
• digital exclusion
• access to healthcare
• the importance of non-medical support
• housing and local area
• mental health and wellbeing
• the role of advocacy and third-sector organisations

Language and communication barriers

Focus group attendees reported significant difficulties in accessing information, healthcare and support services due to limited English proficiency and poor literacy levels in some cases. They noted that these impacted various aspects of their lives including:

• understanding their condition
• self-management
• treatment and medication

Attendees stated that there could be a lack of translated information and materials available to them relevant to their long term condition(s) and on how to access support. NHS resources were cited as ‘inaccessible’ without additional help and support. Moreover, interpreter services were highlighted in some cases as being of ‘poor’ quality, lacking professionalism or cultural sensitivity.

Many attendees said they relied on family members, friends, or third-sector organisations to provide translations and advocate on their behalf. This included reading information and materials, booking and interpreting healthcare appointments, and help to access support. Relying on others for translation was noted as a point of stress and/or embarrassment for those with long term conditions, as often this could involve disclosing personal or sensitive information.

Digital exclusion

Digital exclusion was raised as a key concern across the focus group events. Attendees noted there were a range of barriers to accessing health information, care and support due to digital exclusion issues. This included:

• digital poverty and a lack of access to digital devices (for example, smartphones, tablets, and laptops)
• limited digital literacy – which made it difficult to navigate online systems, book appointments or respond to emails/messages
• a lack of, or poorly translated, digital resources

Attendees noted that they preferred face-to-face communications and printed materials (for example, letters) to provide information, appointment times, and in terms of accessing support.

Stigma and accessing healthcare

Some attendees noted concerns relating to stigma and feeling dismissed by healthcare professionals at times. Attendees suggested they felt ‘ignored’ or ‘not listened to’ due to their background.

Similarly, attendees raised a point that they experienced long waiting times and inconsistent care for their long term condition. Some said they had used accident and emergency services as a last resort due to for example, poor access to primary care support or a lack of specialist support.

Non-medical support

Attendees noted that non-medical support was valuable for supporting their long term condition, citing resources such as peer support, respite care, gym memberships and advocacy support. Attendees said they often experienced inconsistent support, delays or lacked access to this type of support due to cost factors. Some noted that funding cuts threatened to reduce the non-medical support available to them even further.

Housing and local area

Some attendees expressed dissatisfaction with their housing conditions and the local area in which they lived – they felt these issues impacted on their overall health and wellbeing. Some noted they lived in inadequate housing which was exacerbating their long term condition and had resulted in other health issues. Issues raised included:

• accessibility issues (for example, wheelchair accessibility, lack of outdoor access)
• poor housing conditions (for example, damp, mould)

Additionally, some attendees cited issues with their neighbourhood and local area. This included feelings of stigma and discrimination from neighbours, along with poor housing allocation from local authorities.

Mental health and wellbeing

Attendees reported struggling with their mental health and wellbeing. Specifically, they noted that this was compounded by stress and other barriers, including language and access issues, long waiting lists to access support, and stigma and exclusion. Mental health diagnoses, such as anxiety, depression and stress were prevalent among groups such as carers and refugees. Attendees noted that peer support and access to culturally affirming spaces were invaluable in supporting and improving mental health conditions.

Advocacy and third sector organisations

Attendees praised third sector and advocacy organisations for providing support tailored to individuals’ needs. These organisations – including Minority Ethnic Carers of People Project (MECOPP) – were highlighted as providing support which is ‘culturally and linguistically’ appropriate.

Attendees highlighted the importance of providing ‘culturally competent’ services to ensure an individual’s cultural background was respected and that services responded appropriately to diverse needs and preferences. Whilst advocacy and culturally competent services were noted as ‘essential’, attendees felt these services could be lacking in availability and that efforts could focus on increasing availability of, and equitable access to, culturally competent services.