Table 5 Improving the support provision for caregivers.

Improving the accessibility of information to help guide and signpost caregivers

Some participants commented that they had all the information they needed. However, many emphasised the importance of information about support services at the local level. In particular, HCCP’s recommended accessible, consolidated information readily available offline as well as online; for example, one participant suggested a more defined pathway and “who’s who” to help the caregiver to navigate the care and support system, and to know whom to approach at what stage. It was recognised that keeping information up-to-date was a challenge, as individual and organisational responsibilities are continually changing. Overall, HCCP’s would benefit from quick access to up-to-date contact details of relevant local and national organisations to whom they can signpost or formally refer caregivers, as well as to seek information themselves.

“I have the information I need - leaflets, information about other agencies.” (P31)

“Information about local services for caregivers; leaflets/booklets that could be given to caregivers; information about any groups or helplines that might be useful.” (P28)

“There is plenty of support available but it is generally online and confined to disease-specific groups.” (P34)

“Services that are available are generally unknown to the public. If the required info was more readily available, I would feel more confident in passing it on.” (P43)

“One place to receive all the up to date, current information you need at that point in time.” (P14)

“Easy access to contact details of local contact support organisations including benefits advice. Recently there have been changes in local organisations doing visual impairment support.” (P18)

Additional learning and training for professionals

Participants expressed a wish for generic training in working with caregivers and raising awareness about caregiver support across the low vision workforce. There were also specific training avenues suggested, such as emotional support to upskill professionals in engaging in sensitive conversations with caregivers. Participants also referred to the importance of listening to and better understanding caregivers’ lived experiences, in order to inform their professional practice.

“Improving awareness that [caregiver support] is an area requiring additional input… It starts with training, it is not something we think about.” (P54)

“More training to provide emotional support that will encourage people to open up and talk about their own feelings, but will enable a conversation that will encourage to access support through their GP, Counsellor, etc.” (P24)

“Hearing from a caregiver what their day involves, the highs and lows, so [that] as professionals we learn from them.” (P44)

Funding to improve how services structure and deliver caregiver support

Participants discussed inconsistencies in the caregiver support infrastructure in the UK. Some participants saw support for caregivers as underfunded, inequitable, and - when available – rarely extending beyond the period when a condition is diagnosed or a PVI is certified as visually impaired. The under-resourcing of services prevents timely access to low vision services that can support both the PVI and the caregiver.

“This varies so much, [it’s] a postcode lottery. Cuts in statutory services leaves caregivers stressed and often ill themselves. Support not just at diagnosis or registration - it needs to be ongoing.” (P32)

“Often rehab staff are insufficiently resourced so timely intervention for both the individual and the carer is often lacking.” (P30)

Adapting services to the complexity of caregivers’ living situations

Even where support for caregivers is of good quality, caregivers may be unable to benefit due to constraints imposed by their caregiving role. This suggests that for caregivers to benefit appropriately, support services need to be flexible and adapted to the complexity of caregivers’ living situations.

“We have a very good carer’s support service, the problem is that a lot of people cannot attend due to their caring role. Maybe some kind of app or online carer’s support where they can discuss how they are feeling or have a chat without physically getting out” (P65).

The importance of public services recognising caregivers of PVI

Participants recommended inculcating awareness and recognition of caregivers’ role across services.

“Recognition for what caregivers do” (P42).

“Awareness from government agencies of the impact on carers of coping with someone with low vision.” (P46)