In a new investigation, the sight loss charity, Thomas Pocklington Trust (1), exposes multiple failings in the current provision of support for people with sight loss. The system is structured to offer short-term help, but can marginalise the very people it aims to support in the long term. People with sight loss feel abandoned says the study: The Changing Needs of People with Sight Loss (2) and, though support is available, a serious lack of information, referral, and follow-up leaves potentially thousands (3) struggling to cope alone.
“The long term support needs of people with sight loss aren’t being met,” says Dr. Clare Thetford, an author of the study. “Social, rehabilitative, financial and other supports may be available but they can be extremely difficult to access in the long term and at the time of need.”
The study, by the University of Liverpool, conducted 37 in-depth biographical interviews with visually impaired people. In addition, interviews with 18 sight loss professionals provided insights from inside the system. The study showed:
– Eye-care professionals can send the wrong message: Patients make no distinction between medical and other forms of care. When eye-care specialists say “there is nothing we can do”, they can put people off seeking other forms of support. As a result many struggle to cope alone because they lack awareness of what help is available. (4)
– No checks to halt the deterioration of eyesight: Long-term follow-up is not built into the system. This effectively prevents secondary causes of visual impairment from being detected and treated.
– Professionals fail to seize chance to intervene: Specialists such as occupational therapists, physiotherapists, domiciliary carers and social workers didn’t have sufficient knowledge to help.
– Offers of support not reinforced: When first diagnosed with visual impairment people are often not ready to accept help. But this is the most common time for social support to be offered. With no routine follow-up people are often out of touch with the specialists before they realise the precise extent of their needs.
– System too complex to navigate: Overall the people in the study found statutory services confusing and difficult to access. Voluntary services were more accessible but in some areas they were more difficult to find out about.
– Full benefits of rehabilitation not being maximised: Only 8 out of 37 interviewed had completed a full programme of rehabilitation and mobility training, despite high levels of visual impairment and associated disability.
Says Dr. Angela McCullagh, Director of Research at Thomas Pocklington Trust, “The system for provision of services is just too passive. Lack of information, referral, and follow-up means that once the patient goes through the initial system he or she often ends up on the outside, unable to get back in.”
In a series of recommendations the study urges eye care professionals to forge links with social care providers and to use their first contact status to pass people on to other services.
The study also recommends that:
– eye clinics should automatically refer people to low-vision clinics and local sources of social support.
– long-term follow-up by social services should be a matter of routine.
– patients, even those diagnosed with untreatable degenerative eye conditions, should be encouraged to attend for community sight tests so that other eye conditions can be identified and monitored.
1. Thomas Pocklington Trust is a charity which aims to improve the quality of life of people with sight loss. It is a leading provider of housing, care and support services for people with sight loss in the UK, and is a major research and development body.
2. “The Changing Needs of People with Sight Loss” is available from: pocklington-trust from 17th February. The report is by Clare Thetford, Jude Robinson, Paul Knox, Jignasa Mehta and David Wong from the University of Liverpool. This university, a member of the Russell Group of UK research-intensive institutions, attracts research commissions valued at more than ??93 million annually.
3. A Medical Research Council study has estimated that serious sight loss affects 1:8 of people aged over 75; and 1:3 of people aged over 90. Using 2005 population data this means that around 600,000 people over 75 years old suffer serious sight loss. In addition some 2 million people in the UK are estimated to have sight loss that affects their everyday life. (Thomas Pocklington Trust. Prevalence, causes and impact of sight loss in older people in Britain. Occasional paper 8. London, Thomas Pocklington Trust, June 2006.)
4. The Changing Needs study included people who had lived with sight loss for a number of decades as well as those diagnosed more recently (a minimum of three years ago). As such, some of the experiences reported may not reflect current practice. However, the data reflects the realities of living with sight loss in contemporary Britain as those people diagnosed and registered in the past continue to live with their sight loss and to engage with vision-related services. More recent interviews confirm that the unbridged gap between medical and social care and support still very much exists and long term help remains difficult to access. A follow-up study is currently in the planning stage.
Thomas Pocklington Trust