People Living With Disabilities
Population Outcome: People Living with Disabilities in Suffolk and North East Essex Stay Well
The best care and quality of life for people with disabilities are essential if everyone in Suffolk and North East Essex is to live well. Early diagnosis of disabilities, effective care, and supporting people to achieve their potential enables people with disabilities and their carers and families to have a good quality of life.
Learning Disability Data
- Approximately 1.5 million people have a learning disability (LD) in the UK, and face inequalities in health and social outcomes
- GP registers in SNEE record 5,559 people as having a learning disability
- 73.2% of adults with LD in SNEE live in settled accommodation (lower than average of 77.3%)
- 6.9% of adults with LD in SNEE are in paid employment (higher than average of 5.9%)
- Annual health check provision is not uniform – 60.1% SNEE ave. (2018/19), higher than Regional or England average
- Gaps in provision of reasonable adjustments in clinics (e.g. longer appointments, easy read material, lack of resources to support people with LD for whom English is a second language)
- Limited community dental care – Private dental care is available but often not affordable for this group
- Uptake of screening by people with LD is significantly lower
Sensory Disability Data
- The RNIB estimate that there are more than two million people living
with sight loss in the UK. Prevalence of sight loss can only be based on estimates, as there is currently no single directly measurable source of data.
- Sight loss includes people who are registered blind or partially sighted; people whose vision is better than the levels that qualify for registration; people who are awaiting or having treatment such as eye injections, laser treatment or surgery that may improve their sight; and people whose sight loss could be improved by wearing correctly prescribed glasses or contact lenses.
- Modelled estimates from Projecting Older People Population Information and Projecting Adult Needs and Service Information suggest that there are just over 400 people aged 18-64 yrs with a serious visual impairment in SNEE, rising to over 23,000 of over 65s
- RNIB estimate that within SNEE 45,160 people are living with some sight loss (2022), and 6,180 with blindness.
- The overall prevalence of all causes of visual impairment in those aged 65-74 years and over with visual acuity (VA) of less than 6/18 (moderate or severe) is 5.6%, and 12.4% for those aged over 75. VA of less than 6/18 is largely used as the point which approximates to the statutory threshold for qualifying as registered severely sight impaired (blind) or registered sight impaired (partially sighted).
- Of those aged 75 and over, approximately half have cataracts or refractive error (i.e. correctable sight loss) and if these are excluded, the prevalence estimate of those with ‘registrable’ eye conditions is 6.4% in this age group. A small proportion have both cataracts and some other registrable cause of vision impairment and these are included within this figure.
- Age-related macular degeneration is the most common cause of registerable sight loss in older people.
- Around 66,500 aged 18-64 and almost 272,000 aged 65 and over with some hearing loss, around 4,000 of 18-64 and over 20,000 aged 65 and over of which have severe hearing loss
- Evidence shows that hearing loss is a serious health condition that can have an adverse impact on a person’s health and quality of life, for example people with hearing loss may find it difficult communicate with other people and have an increased risk of social isolation and other problems such as anxiety, depression and dementia. People with hearing loss may also face barriers to employment due to poor deaf awareness or the lack of communication support.
- Hearing loss is a common long-term condition and is most cases is not remediable by medical intervention. The primary intervention for most people with hearing loss is hearing aids provided by audiologists. Some people with hearing loss may use British Sign Language (BSL) as their first or preferred language and may consider themselves part of the Deaf community, with a shared history, culture and language.
Physical Disability Data
- Estimates of the number of disabled people in the UK can vary depending on definitions, context and source of information.
- SCOPE estimate that there are 14.6 million disabled people in the UK – equating to approx. 22% of people
- Nearly 200,000 people in SNEE report that their day to day activities were limited because of a health problem or disability which has lasted, or is expected to last at least 12 months.
- Headway data from (2019/20) found there is still one admission to hospital for brain injury every 90 seconds, one head injury every three minutes and one stroke every four minutes in the UK.
- There were 5,234 hospital admissions for acquired brain injuries across SNEE in 2019/20. The majority of these were as a result of either head injury or stroke
The Story Behind the Outcome
Colchester Gateway Club
Waiting for care
Accessing primary care
Adjustments for visual impairments
Listening to people and their carers
Waiting for care
Caring for the whole person
Good quality physiotherapy
Medical vs social models of disability
Source: Inclusion London
Disabled people - prejudice
Disabled people and their families experience a range of different attitudes and behaviours. Such as:
- making assumptions or judging their capability (33%)
- accusations of faking their impairment or not being disabled (25%)
- staring or giving looks (19%)
Scope’s report in 2018 on the Disability Perception Gap found a significant gap in the perceptions of prejudice against disabled people between those who are disabled and people who are non-disabled. “This could be because non-disabled people are simply unaware of the levels of prejudice faced by disabled people, and potentially aren’t conscious of their own prejudicial attitudes towards disabled people”.
Choice and Control
Cost of Living
People in lower socioeconomic groups not only have shorter lives but they also spend more of their later years with a disability.
Recent research by Asthma + Lung UK found:
- 90% of people with lung conditions have already made significant changes to their lives.
- Two thirds are buying and eating less food, which can lower people’s immunity, putting them at increased risk of viruses that trigger asthma attacks.
- One in 6 are cutting back on using their inhaler to make it last longer, one in 10 are using electrical devices such as nebulisers, less.
- Half say their lung condition is worse because of changes they’ve made.
A survey by the MS Society, Reduced to Breaking Point, found:
- 1 in 20 have used a food bank in the past year.
- Almost two-in-five people with MS who claim means-tested benefits surveyed can’t afford heating.
- Around 3 in 10 people with MS surveyed have had to reduce reducing or stop therapies or treatments.
Impacts of disability
- After housing costs, the proportion of working age disabled people living in poverty is 27%. Which is higher than the proportion of working age non-disabled people at 19%.
- 21% of working age adults are disabled
- The employment rate of disabled people is 53%. Compared to 82% of non-disabled people.
- Disabled people are almost twice as likely to be unemployed as non-disabled people, and 3 times as likely to be economically inactive.
- For almost a quarter (24%) of families with disabled children, extra costs amount to over £1,000 a month.
After a stroke, adults may have significant disabilities that prevent them from returning to work.
Inequality and Disability
Impact of hearing loss on people’s health and wellbeing
- People with hearing loss often struggle to access education, employment, health, social care, transport and media.
- One in seven people with hearing loss have missed an appointment with their GP because they didn’t hear their name being called in the waiting room; and over a quarter did not understand their diagnosis.
- The communication needs of people who access social care are routinely overlooked.
- Make sure the communication needs of people with hearing loss are identified, recorded and met.
- Provide training for staff on accessibility issues for people with hearing loss.
- Take into account hearing loss and deafness when providing diagnosis, management and care for people who also have other long-term conditions, including mental health problems, dementia, learning disabilities, sight loss, cardiovascular disease and diabetes.
Make sure mandatory standards for accessible health and social care are in place and enforced.
Learning Disability and Inequality
Life expectancy for people with LD is significantly shorter than the general population. It is estimated to be 27 years less than average for women and 23 years male
A number of health conditions more prevalent and outcomes poorer for people with LD:
- Digestive Issues & constipation
- prevalence of diabetes is estimated to be twice as high
- Dental health outcomes are significantly worse
- prevalence of dementia is significantly higher than the general population
- Inactivity levels are higher
- The number of people with LD living with obesity is higher
- Cancer is the third most common cause of death of people with LD in England. – 1 in 10 chance of dying from the cancer, as opposed to a 1 in 36 chance in the general population
- Tumours more often diagnosed at a late stage
Reasons for these health inequalities are often multifactorial. This includes genetic factors, poor access to services and poorer socio-economic outcomes. Housing, educational attainment, employment and social inclusion determine their health and wellbeing
Learning Disabilities Mortality Review (LeDeR) found almost half (46%) of adults had 7 to 10 long term health conditions when they died
People with learning disabilities and/or autism – life expectancy
- The average age at death for people with a learning disability
is 23 years younger for men, and 27 years younger for women
than the wider population.
- People of Black, Black British, Caribbean or African, mixed
ethnic group and Asian or Asian British ethnicity died at a
younger age in comparison to those of white ethnicity.
- Avoidable deaths (ie those considered preventable and treatable
causes of death of people who died at younger than 75 years old)
are significantly higher for people with a learning disability.
People with autism – barriers in accessing healthcare
- far less likely to say that they could describe how their symptoms feel in their body, describe their pain levels, and explain their symptoms.
- less likely to know what is expected of them when they go to see their healthcare professional.
- less likely to feel they are provided with appropriate support after receiving a diagnosis.
- over 7 times more likely to report that their senses frequently overwhelm them so that they have trouble focusing on conversations with healthcare professionals.
- over 3 times more likely to say they frequently leave their healthcare professional’s office feeling as though they did not receive any help at all.
- 4 times more likely to report experiencing shutdowns or meltdowns due to a common healthcare scenario (e.g., setting up an appointment to see a healthcare professional).
The study found high rates of chronic physical and mental health conditions, including arthritis, breathing concerns, neurological conditions, anorexia, anxiety, ADHD, bipolar disorder, depression, insomnia, OCD, panic disorders, personality disorders, PTSD, SAD, and self-harm.
Deprivation of liberty
The CQC’s State of Care 2022 expressed continued concerns about:
- Staff knowledge and understanding about DoLS, and the quality of training – exacerbated by staff shortages and experienced managers leaving the care sector.
- Poor quality Mental Capacity Act (MCA) assessments – and in mental hospitals a lack of understanding of the interface between MCA and the Mental Health Act.
- Delays and backlogs in application – only 21% of applications completed in 21 days in 2021/22.
- Many families said they were not involved and not given information on DoLS.
References & Further Reading
What we know matters and why
|I have adjustments to enable me to have a good quality of life||Access to equipment, adaptations, assistive technology and support with mobility and independence, means I can live independently and reach my full potential.|
|I receive high quality care||Treatments, therapies and care provided by people trained in meeting my needs, given in the way that I wish, in my home and in my community, means I can be safe and live a full live.|
|I have information on my disability, care and living well||Information given in the best format and language for me, on my rights and entitlements, and the support available, means I can access the right financial, practical, social and emotional support for me. |
Advice on planning a family will help me to better manage pregnancy, childbirth and parenting.
|I am treated as an individual||Treating me, my carer and my family with dignity and respect, recognising my culture, characteristics and life circumstances, means my care and support is inclusive, sensitive and responsive to my needs.|
|I am seen and heard||Having choice and control over my care means I can organise my own life and do the things I want to, how and when I choose. |
Communicating with me directly, using a facilitator or interpreter if needed, means I am fully included in decisions about me.
Being respected as the expert in my own health means I can access the right support for my needs.
How will things be different in Suffolk and North East Essex
|We will embed the social model of disability in the ways that we work in health and care.||We will think about mental health and wellbeing, not only physical health, in everything we do.|
|We will co-produce with people and carers, care and support plans owned by them and not any single organisation, that enable them to live a safe and full life||We will support people with multiple disabilities and /or health conditions and their carers and family to understand how their conditions and treatments interrelate and interact.|
|We will support disabled people to be a friend, a partner and/or a parent.||We will encourage healthy workplaces and communities to better support disabled people.|
|We will combine budgets for individuals’ health, care and other services, wherever possible, to ensure people can access their funding more easily and more efficiently.||We will ensure decisions in the best interests of those who may need deprivation of liberty (DoLS) are made promptly and reviewed regularly.|
|We will co-produce ways to ensure health and care settings are sensitive to the needs of people with sight and hearing loss, autism, learning disability and physical disability.||We will support people to maintain their health and wellbeing before, while waiting for, during and after treatment to help them stay well and recover well.|
Case Studies – how we’re making progress across Suffolk & North East Essex
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Publish your case study here
Publish your case study here
Publish your case study here
Publish your case study here