Improving later life for people with sight loss Contents 4 Welcome 6 Sight loss in an ageing society 10 The lived experience of people with sight loss Dedicated to the memory of Alan Suttie, 20 The policy environment a former Trustee of RNIB who passed away in 2014. Alan 22 Ways forward and dedicated his life to recommendations improving the lives of blind and partially sighted people, 28 Agenda for action championing the cause of older people. 29 References 3 Welcome On 22 June 2015, The learning from the more older people are Age UK and RNIB seminar will be used by able to look after their RNIB and Age UK to set an sight for themselves held a joint seminar agenda for positive action and are enabled to live ‘Improving later in order to empower and independently, with real life for people with support older people with choice and control over sight loss to shape their their lives. sight loss’. The own futures. seminar drew on the Our seminar concluded expertise of older Almost two million people that when people in the UK have significant experiencing sight loss people with sight sight loss. They are succeed in finding the right loss. We considered predominantly older people advice and support, this the latest research and, as more of us live can have a transformative evidence and longer, these numbers are impact on their lives. set to increase. With this However, at present there current policy demographic shift come is no universal safety net landscape. Our aim new challenges: more older or signposting to services. was to understand people needing support Such advice and support the implications to live with sight loss, is usually provided by and more experiencing voluntary and community of sight loss in an sight loss alongside groups and organisations, ageing society for other challenges often whose funding is often public policy and the associated with ageing, fragile and whose outreach including the need to capacity is inevitably provision of services manage multiple long constrained. and support. term conditions, lower income, reduced social We know that all blind and networks and experience partially sighted people, of bereavement. In this and all older people, are context, we need to ensure different. We need to 4 recognise and respond to people’s individual strengths, interests, wishes and needs – offering a range of advice, information and joined-up options that provide choice and enable older people with sight loss to live life as they wish. We are determined that our organisations will Fazilet Hadi Caroline Abrahams lead by example, working together with people in later life to meet the challenge of sight loss in an ageing society. This report, and the seminar on which it is based, marks the start of our efforts to do this. We look forward to “ We are determined that our working with partners and colleagues across organisations will lead by example, the voluntary, statutory working together with people in later and private sectors, as life to meet the challenge of sight well as with many older loss in an ageing society.” people, in the weeks and months ahead. 5 Sight loss in an ageing society Society is ageing – in the UK and across the world. The scale and significance of this longevity revolution is frequently underestimated. The last thirty years have seen an increase of one third in the proportion of the UK population aged 65 and over [1] and a three- fold increase in the proportion aged 90 or over [2]. 800 700 600 500 400 300 200 100 0 1983 1987 1991 1995 1999 2003 2007 2011 People age 90+ per 100,000 Figure 1: Growth in UK population aged 90 plus 6 The number of people in the UK aged 65+ is projected to 50% rise by nearly 50% (48.6%) in the next 20 years Figure 1 is a bar chart These figures are glasses. These people are depicting the number of significant because all living with significant people aged 90 plus per the prevalence of sight sight loss. At least one- 100,000 of the population loss increases with age. third has irreversible sight by year between 1983 Currently almost 1.5 million loss and some have vision and 2011. The chart people aged 65-84, and a that is equivalent to people demonstrates a rising further 580,000 aged 85 who are registered as trend from approximately and over, are living with partially sighted or blind. 300 people aged 90 plus sight loss in the UK [9]. And these numbers are per 100,000 population in That’s one in five people set to grow. 1983 to 800 per 100,000 aged 75 or over, and one by 2011 [3]. in two people aged 90 and The leading causes of over living with sight loss sight loss in the UK are Today, there are 11.4 [10]. These figures include uncorrected refractive million people in the UK the circa 25,000 people error, age-related macular aged 65 or over and three annually who are certified degeneration, cataract, million are aged 80 or by an ophthalmologist as glaucoma and diabetic over [4]. Life expectancy severely sight impaired or retinopathy. The evidence estimates at age 65 are sight impaired and who clearly shows just how 86.1 years for women are added to the registers common eye conditions are and 83.6 years for men of around 350,000 blind in later life, for example the [5] compared to 83.0 for and partially sighted majority of women aged women and 79.0 for men people maintained by 85 and over has at least in 1985 [6]. The revolution local authorities, as well as one eye condition [11]. is set to continue. The those whose sight is just Furthermore this has a real number of people in the UK better than the levels which effect on daily lives, with aged 65+ is projected to qualify for certification. only half of women aged 85 rise by nearly 50% (48.6%) It also includes people and over reporting that they in the next 20 years (from who are awaiting or are able to read newsprint 2015) to over 17 million [7]. having treatment such at arm’s-length, even when The population aged 85 as eye injections, laser wearing glasses [12]. and above is expected to treatment or surgery that The evidence also treble in the next 30 years may improve their sight. demonstrates that sight [7]. A baby born in 2011 is And it includes people loss in later life is often almost eight times more whose vision loss could experienced alongside likely to reach 100 than be improved by wearing other challenges. one born in 1931 [8]. correctly prescribed 7 Those in the poorest fifth of the population had an almost 80% higher risk 80% of developing severe visual impairment than those from the wealthiest fifth Compared with the general • Are more likely to position in society to be older population, older experience falls low. Those in the poorest people with sight loss: fifth of the population had • Are more likely to an almost 80% higher risk • Are more likely to have be disabled of developing severe visual other health conditions impairment than those from • Are more likely to report the wealthiest fifth [13]. • Are more likely to have having poor quality social difficulty accessing health relationships Furthermore, older people services who develop sight loss in • Are more likely to have later life are more likely • Are more likely to live negative views of their than those who do not in poverty neighbourhood. to experience: • Are less likely to be And the evidence suggests • A fall in quality of life; able to shop for every that sight loss may be both day necessities without a cause and consequence • A decline in social assistance of these other engagement; and disadvantages: people • Are less likely to play in the highest income • A fall in income. [13] as much sport as they groups are significantly would like to more likely than those in Taken together, this the lowest income groups evidence demonstrates • Are more likely to to retain their sight in later a clear need for action to experience chronic pain life – so there is a clear address the issues faced by older people with sight • Are more likely to have link to the wider health inequalities agenda [13]. loss. Given the prevalence problems with mobility of sight loss, it is clear outside the home Research has that our wider ambitions • Have greater need for demonstrated that the to promote healthy, active services risks of developing both later lives will not be moderate and severe realised if people with sight • Are more likely to live in vision loss are significantly loss are not able full to poor quality housing greater among people from take part in daily activities poorer backgrounds and and contribute to their those who perceived their communities. 8 9 The lived experience of people with sight loss People in later life John Thomas is a retired are heterogeneous, RNIB’s Panel of university lecturer, radio the Third Age presenter and consultant, varying widely in RNIB has established and is a member of health, housing, the self titled “Panel P3A. He has Retinitis economic of the Third Age” or Pigmentosa (RP) which circumstances, P3A to ensure that was first diagnosed when the perspectives of he was in his 20s. He is interests, blind and partially now in his late 70s. He has aspirations, needs sighted people experienced a range of and a host of other in later life are forms of sight loss – from characteristics.