The fact that overall, participants prioritised and met their basic material housing and food needs sometimes meant restrictions in other spending areas, which are now looked at in turn. Social participation In the standard MIS budgets there are allowances for leisure activities to allow individuals to socialise outside the home, eat out and take a holiday as a minimum for social participation. Similar provisions are made for the MIS VI budgets but with additional amounts to cover extra costs where these are incurred. Socialising was cited by many of the participants as the next priority after bills and food. This included activities such as taking part in sports, including VI specific sports; exercising and going to the gym; participating in social or drama clubs; attending lunch clubs; going to church and church activities; watching live sports; attending walking groups; going to the cinema and going out for meals. The cost of participating in these activities includes some elements common to the whole population (like the price of a cinema ticket) and others that are distinctive to VI people (like paying additional transport costs or treating a friend to a drink or a meal as reciprocation for practical help when going out). Participants in the study, who lived alone, saw it as important that they should get out of their homes and meet people. Several noted the risk of isolation and need to keep occupied and appreciated having meals out (for pension age individuals this was sometimes subsidised through groups or lunch clubs). Many of the participants emphasised the positive impact that socialising had on their lives. For some, interacting with other individuals with visual impairment was important as it allowed them to discuss shared experiences as well as identify new equipment and gadgets that could improve their day to day lives. Social participation was clearly important for mental well-being and helping to limit seclusion and loneliness. “If I had to prioritise it I would say that I will always make sure that my bills are paid first, probably it would be socialising would be my next big expenditure and important to me because without that I wouldn’t cope at
Feeling vulnerable and not wanting to feel conspicuous. Some participants felt very ‘wary’ when using money or magnifiers when out for fear of being seen as a ‘target’. A few were reluctant to use a white cane, because of how they felt they might be viewed by others while at the same time being worried about drivers not realising that they could not see traffic. A key issue is how people are provided with a cane and the explanation of its benefits and how to use it. “Q: What puts you off using it [cane]? R: Well I feel a bit vulnerable that people could take advantage of you ….I fear maybe someone would come and take my handbag or try, stuff like that”. (PA, SI) ”When I had the white stick … I said ‘I don’t need a white stick’, and they said’ use it because it is not for you, it is to let them know you have got a problem’, and when I said that about the buses she said ‘that is why you need the white stick because if you have got a white stick the driver gives you time to sit down’, and I have found that that happens.” (PA, SI) Being at risk of isolation. Issues curtailing social contact such as no longer being able to recognise people when they were out, or the need for intense concentration making it hard to engage with others when walking, can impact on people’s feelings about going out and social activity. These factors combined could present more challenges for some people who had recently lost their sight than for those who had developed strategies and confidence over a longer period. Some participants talked about what helped them cope. This included acceptance, though this can come gradually, learning different ways to do things, having to be patient, ‘getting on with it’, having to make themselves get out and about to avoid social isolation. “You have got to accept it…, I wouldn’t accept it at first, you think well come on there is a jolly sight worse than that… I have got used to it you see, you have to.” (PA, SI)
Finally, the study underlined the importance of getting such information and support to people when they first become visually impaired, a time when the challenges can be the greatest but knowledge of what is available the lowest. A crucial factor is being well linked in to VI networks, a process in which registration and its follow-up can be crucial. But access to VI groups before registration can also be valuable. This research suggests that there is a gap in support, especially for pension age people who become visually impaired, and a need to give timely assistance to those trying to cope with the early stages of sight loss. A more joined up system for ensuring that people are linked in to the support they need would be a good start in improving the sight loss pathway and life in general for people at this critical time. References Davies, M., Porter, L., Lepps, H., Icardi, R.and Bicquelet, A. (2017) Experiences of Personal Independence Payment (PIP) for people with sensory loss. Research Findings 54, London, Thomas Pocklington Trust. Flynn, K. and Lord, C. (2015) Living with Sight Loss: updating the national picture, London, RNIB Harris, E. and Gregory, F. (2018) Inclusive fitness equipment for people with a visual impairment, Thomas Pocklington Trust, London Hill, K., Horsley, N., Hirsch, D. and Padley, M. (2017) . Loughborough: Centre for Research in Social Policy Hirsch, D. (2017) Loughborough: Centre for Research in Social Policy Nazroo, J., Whillans, J. and Matthews, K. (2015) Changes in vision in older people; causes and impact, Research Findings 49, London, Thomas Pocklington Trust