Download
1 / 55
550 likes | 559 Views
My Voice 2015 The views and experiences of blind and partially sighted people in the UK John Slade and Rose Edwards Evidence and Service Impact. Introduction. Context Definitions My Voice key findings Quotes from blind and partially sighted people Questions. Context.
E N D
My Voice 2015The views and experiences of blind and partially sighted people in the UKJohn Slade and Rose EdwardsEvidence and Service Impact
Introduction • Context • Definitions • My Voice key findings • Quotes from blind and partially sighted people • Questions
Defining sight loss Around 25,000 adults each year receive a Certification of Vision Impairment
Defining sight loss Around 350,000 adults are registered as blind or partially sighted. This includes the majority of people who have been given a CVI.
Defining sight loss Almost 2 million people are living with sight loss. This includes people are registered, and those who eligible for registration. It also includes people who are undergoing treatment or whose sight could be improved. Finally, it includes people whose sight loss is not severe enough for them to be registered.
Defining sight loss My Voice findings are representative of adults who are registered blind or partially sighted.
Aim and objectives Aim To better understand the circumstances, views and experiences of registered blind and partially sighted adults over time. Objectives • Establish a random sample • Ensure sample has a good distribution of age and different parts of the UK, and that it is generalisable • To conduct telephone interviews in 2014/15 with this group and publish the results • To keep in touch with these people in order to understand how circumstances change over time.
Methodology • Ethical approval from Social Care Institute for Excellence • 22 local authorities gave access to the register • Existing RNIB contacts were also used • A random selection of people were approached about taking part in the My Voice research • Children and young people under the age of 18 were not approached • Over 1,200 registered blind and partially sighted people opted in to take part in a 45 minute telephone interview • Youngest participant was 18, the oldest 97 years.
Why focus on the register? • Sampling frame - we know how many people are registered, which helps us with sampling and with generalisability • Practicalities of fieldwork - issue with identifying who has sight loss but is not registered (would require household survey = very expensive) • Availability of other research provides evidence for the wider population, such as Labour Force Survey, Life Opportunities Survey, etc.
Involvement • Key aspect of the research design was to involve blind and partially sighted people • Focus group at RNIB UK Members' Forum • Piloting of materials and questionnaire with two dozen blind and partially sighted people • Involvement of a user representative at all project meetings • Focus group of presenting key messages
Exercise using My Voice data • We will distribute some tables from the My Voice survey • Nominate someone on your table to feedback a few key points to the wider group • Discuss the data and any important findings that you can identify • Talk in your group about the potential implications of data – for example, what does it mean in terms of campaigning or services? • If you have time, discuss what other evidence would be useful to help inform any decisions, either from this survey or from other sources.
My Voice: key findings There were huge variations in the experiences of blind and partially sighted people • Age • Level of functional vision • Age when experienced sight loss • Additional disabilities
"It would be wonderful for people to see me as a person … standing outside the school gates I do not get spoken to. When I go swimming I bump into people and they think that I am just rude, and not that I cannot see."
My Voice: key findings Residual sight was unstable, and people experienced changes in sight over a long period of time • Nearly half of people now registered blind were at one stage registered partially sighted • Nearly three-quarters of blind and partially sighted people experienced deterioration in their sight in the last 12 months • Sight loss is not a journey along a fixed pathway, but rather a series of changes and challenges.
"They could have come out and showed me things, like how to use the kettle without being scalded."
My Voice: key findings The vast majority of people did not receive any counselling or emotional support in relation to their sight loss • Only 17 per cent of people experiencing sight loss were offered emotional support • Two-thirds of people of working age and one-third of people of pension age would have wanted emotional support if it was available to them.
"The letter they sent telling me [about my diagnosis] … it wasn't even signed - I was devastated."
My Voice: key findings Only a small proportion of people received key elements of practical support in the first year after experiencing sight loss • The most common type of practical support received by people experiencing sight loss was around the use of aids and gadgets and benefits advice • Only one in three were offered mobility training • Only one in five were offered support around the home with things like preparing food • Younger people were more likely to be offered practical support than older people.
"I had lots of falls and could have needed the help, but I didn't get any help and I hurt myself a lot."
My Voice: key findings Most blind and partially sighted relied on some form of care, and often this was informal and unpaid • The majority of people rely on some form of care around the home • This ranges from help with cleaning or prepping meals, to help picking out clothes or setting heating controls • Nearly half of people frequently or always needed support to read written information • The most common source of this support was family living in the same household.
"I would like someone to help around the house that isn't my husband, to take the pressure off him."
My Voice: key findings The proportion of blind and partially sighted people in employment has decreased • Only 27 per cent of registered blind and partially sighted people of working age were in employment • This compares to 33 per cent in 2005 • Amount of functional vision and number of additional impairments were significant factors in likelihood of being in employment.
"I struggled for 12 months without help … I could have got that help immediately, it would have made a lot of difference."
My Voice: key findings People of working age were struggling financially • Nearly half of people aged 30–49 and one-third of people aged 50–64 were struggling financially • More than one in four people say the disability benefits they receive are rarely or never enough to help meet the extra cost of sight loss • Blind and partially sighted people have a lower personal income when compared to the general population, but also higher expenditure as a result of the extra costs associated with sight loss.
"My main issue for the last few years was the lack of my job. It affected everything."
My Voice: key findings Travel remained a major issue for blind and partially sighted people, especially obstacles on the pavement • Four out of 10 people were not able to make all the journeys that they want or needed to make, and nearly half required support to get out of the house • Two-thirds of people of working age and one-third of people of pension age had collided with an obstacle on the pavement in the last three months • Travel, transport and mobility was the most important issue when we asked people about what would make everyday better for them.
"I want the freedom to go out without thinking about whether I may fall over."
My Voice: key findings There is a generational divide in the use of technology, but most people who did not use a computer or the internet want to if all the obstacles were removed • Less than one-third of blind and partially sighted people felt able to make the most of new technology, but this was closely linked to age • There is low level of usage of computers, the internet or smartphones amongst people aged 75 and over • The majority of people not using technology would like to if obstacles were removed.
"I would like better access to technology … one problem of being blind is you can't get information on current events."
My Voice: key findings Access to information was an ongoing issue • Nearly half of blind and partially sighted said that information on their medication or food packaging was impossible to read • Four out of 10 people said that information from health providers was never accessible • Three out of 10 people said that information from banks was never accessible.
"I am a very independent lady, and I have been all my life, and having to have other people to read things for me is very frustrating and not always private."
My Voice: key findings Some blind and partially sighted people felt cut off from the people and things around them • Four out of 10 blind and partially sighted people felt moderately or completely cut off from the people and things around them • This should be of concern for people over 75, with over half of this age group living alone • But also people of working age, with younger blind and partially sighted people more likely to be living alone than the general population.
"I feel sorry for my daughter and I feel awful that I won't be able to see her."
My Voice: key findings Some blind and partially sighted people felt limited in the choices they have, particularly around leisure activities and options for how they spend their free time • Half of people said that they were always or frequently limited in the activities that they were able to take part in • Nearly two-thirds said that they would like to do more physical activity.
"I want to be able to walk down the street without being laughed at or pointed at."
My Voice: key findings Public attitudes towards sight loss was poor • Younger people and people who are registered blind are more likely to experience negative attitudes • One in five people of working age said that they always or frequently experience negative attitudes from the general public because of their sight loss • One in three people who were registered blind said that they had been treated unfairly because of their sight loss in the last 12 months • Strangers on the street and retail staff were the most common sources of unfair treatment.
"People see you as blind and feel frightened. I wish they wouldn't back away."
My Voice: key findings Feelings of wellbeing were lower amongst blind and partially sighted people • People with sight loss… • Felt less optimistic about the future • Felt less useful • Had more problems relaxing • Felt less close to other people • …when compared to the general population.
"I want more support from people in a similar situation, to have someone of my age who understands what I'm going through. "
My Voice: key findings Sight loss is the biggest barrier that people face • We asked people who were experiencing barriers or restrictions about the reasons why • Issues relating to sight loss were by far the common reason • This is true for transport, access to technology, employment, leisure opportunities or access to services
In conclusion… • Some blind and partially sighted are doing well - it is not all doom and gloom. • However, My Voice highlights that many people are still experiencing barriers or missing out on crucial support, particularly when compared to the general population. • It is unacceptable that most blind and partially sighted people: • Cannot walk safely down the street • Read basic information about what medication they are taking • Are not in employment • Do not get crucial emotional or practical support when they are experiencing sight loss
