Annex A

We identified the following 18 themes from our analysis of the open text responses to question 32 of HACE 2023-24 (‘If you are not receiving all the help and care services for everyday living that you feel you need, which options describe your situation?’):

1. Delays (184 responses): Indicates a delay at the service level, such as awaiting assessment or diagnosis, delays in service contact, or the commencement of care or health services following assessment.
2. Service perceived as inadequate for needs (112 responses): Indicates that the current service does not meet all needs, such as requiring more hours or additional hours of support.
3. Services not easily accessible (55 responses): Indicates that services are difficult to access, including difficulties with navigating forms and information or challenges in sourcing and securing help.
4. Not sure how to get support (42 responses): Indicates uncertainty around the process or steps required to access care services.
5. Non-qualifying needs (36 responses): Includes individuals who feel they require support, but they do not qualify for services or have been unsuccessful in obtaining support.
6. Required support not available / offered (36 responses): Indicates that required service is not available, or has not been offered to individual and the reason for this is unclear.
7. Dissatisfaction with support offered / available (26 responses): Indicates general dissatisfaction with the support available or offered.
8. Unsure if eligible for support (22 responses): Indicates uncertainty around whether individual’s needs qualify for care or health services.
9. No contact (18 responses): Includes individuals who received no follow-up or contact after seeking care or support.
10. Reluctance to ask for support (17 responses): Indicates reluctance to seek support, for example through feelings of guilt, concern, mistrust of professionals or concerns that the support provided may not be worthwhile.
11. Lack of financial support (16 responses): Indicates lack of financial support to cover the costs of support services to address needs.
12. No availability of staff (16 responses): Indicates a lack of available staff to provide necessary support services.
13. Geographical / transport limitations (15 responses): Indicates geographical or transport limitations that restrict access to care, such as a lack of services in the region or insufficient transportation options.
14. Disrupted continuity of care (14 responses): Indicates disruption in the delivery of care, such as challenges with transitioning care between locations (e.g., moving to a new area or transferring from a hospital to community) where services were delayed, unavailable or poorly coordinated.
15. Paid for own services / support (14 responses): Indicates that unmet support needs are being addressed by paying for own services or care.
16. Capacity barriers to accessing support (10 responses): Indicates capacity barriers that make sourcing support difficult, including mental exhaustion, competing responsibilities and memory issues.
17. Support reduced or suspended (8 responses): Indicates that care has been received in the past but needs no longer eligible for support, or allocated care has been suspended.
18. Language barrier preventing access to support (2 responses): Indicates that language barriers are preventing access to support services to address needs.

Please note that there is some crossover between categories. For example, theme 3, ‘services not easily accessible’, overlaps with theme 6, ‘required support not offered / available’. Theme 3 tends to be more explicit around the accessibility of services compared to theme 6, which is more focussed on the availability or provision of services. Similarly, theme 6 intersects with theme 2, ‘services perceived as inadequate for needs’, and theme 5, ‘non-qualifying needs’. As above, theme 6 tends to contain more generic quotes indicating that the support required is not available – where support is not offered it is unclear if this is due to a non-qualifying need. Finally, there is some overlap between theme 17, ‘support reduced or suspended’, and themes 5, ‘non-qualifying needs’, and 14, ‘disrupted continuity of care’.

Some cross-over between categories is expected as many are naturally interconnected – for example, delays may lead to dissatisfaction with the available services or concerns surrounding the accessibility of care. Additionally, several responses transcended multiple categories. In these instances, we categorised the quote in line with our own judgement surrounding the theme that best matched the response.