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Recent studies have reported shortcomings in the ways in which ophthalmic teams respond to the emotional and information needs of people who have age related macular degeneration (AMD). Research that I and colleagues have recently completed found similar concerns but also identified potential solutions.
Mitchell et al’s study1 of the quality of health care in macular degeneration revealed that nearly half of the 2000 surveyed patients were critical of their eye specialist’s attitude (variously described as unfeeling, uninterested, or dismissive) as well as lack of information and advice in eye clinics (about the sight condition, low vision aids, and support services). Howe2 reminds us that these problems are not new, and that there is routine failure in ophthalmic units to provide adequate information and support. Improvements may be slow, partly because, as Stein et al3 discovered, ophthalmologists tend to underestimate the impact AMD has on quality of life.
Our recently completed research,4 which focused primarily on the housing and community support needs of blind and partially sighted post-retirees (most but not all suffering AMD), did not specifically solicit views on ophthalmic care per se. However, a strong theme arising out of the quantitative and qualitative interviews with our random sample of 400 people was that ophthalmic teams could have done more to prepare individuals for the emotional and practical consequences of late onset sight loss. Additionally, our data indicate a number of ways in which ophthalmic teams, through closer collaboration with social care professionals, can help address these criticisms of quality of care within eye clinics.
If people generally find it difficult to present emotional needs within consultations with their family doctor, the case in regard to 64% of patients interviewed by Cape and McCullagh,5 raising worrying feelings within a specialist hospital setting is likely to be even more problematic. It follows that when patients cannot confidently articulate troublesome feelings then their emotional needs may be overlooked. The recognition of patients’ emotional needs, by doctors, nurses, and allied specialist staff, is clearly important and yet, according to Barrick,6 awareness training initiatives do not appear to be reaching sufficient numbers of ophthalmic nurses. Our research suggests that eye clinics should have on site, or on call, appropriately trained staff, such as specialist sensory impairment social workers, occupational therapists, or rehabilitation workers. These professionals would be available to raise staff awareness of non-clinical needs, listen to patients and provide advice about possible sources of further help, such as counsellors.
Good patient care after diagnosis of AMD, or any other serious sight impairment, also includes the provision of timely and accessible information. Although it was the case that respondents in our research had often developed personal strategies to adapt to and cope with newly acquired impaired vision, they would have been greatly assisted in this process if they had been informed, at an early stage, about local blind associations, eligibility for financial benefits, and the availability and efficacy of low vision equipment. Again, close working between relevant professionals can make it more likely that relevant information is routinely made available. To this end, specialist workers from local social services sensory impairment teams and relevant voluntary sector agencies could usefully join forces to provide an “outreach” information/advice service within eye clinics.
In parallel with these initiatives, and to further bolster a more proactive approach to meeting the “social care” needs associated with late onset sight loss, ophthalmic units may additionally benefit from the regular input of relevant case study material and outcomes, presented at clinical meetings by practice and district nurses, rehabilitation workers, and specialist social services staff. Such an exchange of professional experience and knowledge offers the opportunity for developing a more holistic and integrated approach to improving the services available within eye clinics.