Modificación de medidas como consecuencia de alteraciones en los hechos

Accessibility/timing of information

Several people across the sites felt that information about what help was available should be more forthcoming, timely and readily accessible. Expecting service users to ask for information assumes that service users always know what help they need.

The general feeling among people who had lived with their condition for a long time was that people often get help when it is too late or access a service when they have to have it. Several people said that the help they had received from the rehabilitation team had been tremendous but had they had the support sooner, they would have been better able to come to terms with their condition and be prepared for the future:

‘I think really from the beginning I should have been told, from ... having a sight problem that, ... I may need, you know, this service or I may need some training here or I may need help there .. could’ve been … advised on … how to cope with the condition… with work life, you know, and socialising … [I] would have been better prepared for it’ (A3)

Another participant talked about his experience at the eye clinic:

‘I had to make all the running myself. If I did not get up and go, … it got that bad I had to seek help … they should have prompted me to get help quicker, took a long time. If seen more regularly at the beginning, it could have been avoided may be’ (B2)

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Participants who had some sight left were worried about losing all their sight. They felt they would benefit from a training course that taught them how to cope with having no vision in the future. One person

reported that having the cane training with his eyes closed when he still had some sight was a great advantage to him as his remaining sight had made the training process much easier and quicker (C5). However,

several service users said that they had not been mentally ready to receive help at early stages; some had resisted getting help from the rehabilitation team early on because they were still hopeful that things might improve:

‘… [I] took the basic that I would need to get by, really, and didn’t want anything to do with anything that I thought I was going blind. I mean, I didn’t even want even to contemplate it, even though it was happening. So, I, sort of shunned [the rehabilitation team] for quite a while…I had made it blatantly clear to them that I didn’t want anything else from them at the time’ (C3)

In retrospect, they all thought having had more support at the beginning would have been very helpful.

Emotional support

Participants who acquired sight loss later in their lives described it as devastating. Some people, mainly older people, felt that the ROs’ involvement was tremendous in helping them come to terms with it. Several people had mainly relied on their family members for emotional support. Two people (B4 and B5) had been referred to the mental health team by their GPs. However, a few younger people who had lost their eye sight at young age felt that their emotional needs had not been met effectively. One person explained that she had never discussed her emotional problems with the ROs thinking that they would not be able to help her as they were not counsellors. Another person felt that the

rehabilitation team had only helped him to cope with the physical and not the emotional side of things.

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‘People of my age would need more help mentally than other people ... Losing your sight at 70 may not be as devastating as somebody his age. They [ROs] should have pushed me to get some psychiatric help …most people who need psychiatric or psychological help would not ask for it’ (C3)

Access to social activities

As mentioned above, several younger participants reported that they were interested in joining social events and sport activities where they could meet other young people in a similar situation and with similar interests. However, they thought social activities appeared to be more geared towards older people. One young person reported that all he had been offered were coffee mornings and pottery classes. He said the only social meeting he had attended, which was supposed to be for younger people, was held in a church. He thought younger people would be more interested in going to more ‘youthful places’; having a meeting in a

church would frighten a lot of young people off:

‘I think when you arrange social events, the younger generation needs to be thought through a little bit more. I can understand why the over-60s would go to a church ‘cause most of them probably are Christian or

Methodists or so on and so forth, whereas the younger generation, we’re not quite as pious as they used to be’ (C3)