Written evidence submitted by The Royal National Institute of Blind People (CBP0019)
The Royal National Institute of Blind People (RNIB) is one of the UK’s leading sight loss charities and the largest community of blind and partially sighted people. We provide a wealth of services including practical and emotional support through our RNIB Connect community and our Sight Loss Advice Service, guide business and public services on accessibility, campaign for change, and have a library of over 60,000 accessible reading materials, including daily newspapers.
Every day 250 people begin to lose their sight. We want society, communities and individuals to see differently about sight loss.
Our response has been divided into different subject areas as follows.
Section 2 deals with eye care and the problems that have been exacerbated by the pandemic, particularly the capacity of the NHS to deal with the demand for eye care. Section 3 deals with Vision Rehabilitation services provided by local authorities. These are facing pressures additional to those of existing waiting lists and backlogs, in the form of individuals who were previously confident and independent becoming deskilled and forgetting routes, while either self-isolating or being unable to find support to mobilise outside of their home. Section 4 highlights the importance of sight loss registers held by local authorities. Section 5 focuses on child vision screening and the need for adherence to Public Health England guidance, the final section 6 relates to the provision of eye health services for children in special schools.
Ophthalmology is the largest outpatient speciality. Prior to the coronavirus pandemic, hundreds of thousands of people received excellent sight saving NHS treatment. However robust evidence from the Ophthalmology Get It Right First Time (GIRFT) programme and the ‘Lack of timely monitoring of patients with glaucoma’ Healthcare Safety Investigation Branch (HSIB) inquiry found that thousands of patients experienced delays which resulted in hundreds of people losing sight that could have been prevented if they had been seen on time. The need to increase capacity within ophthalmology was recognised by NHSE&I prioritising eyecare within the NHS Outpatient Transformation Programme. As a result of the pandemic it is likely that thousands of people will have experienced avoidable sight loss due to the inevitable delays in monitoring and treatment.
The suspension of routine eyecare and cataract surgery due to the pandemic will create an unprecedented backlog that current eye care services will be unable to meet without significant changes. Amongst older people sight loss has a profound impact on health, wellbeing and ability to maintain independence. A recent Public Health England report ‘Wider Impacts of COVID-19 on Physical Activity, Deconditioning and Falls in Older Adults’ highlights the physical and mental health of older people has been impacted by lockdown. The majority of eye care patients are over sixty. People with sight loss are more at risk of injury due to falls, requiring hospital treatment and often leading to loss of independence. Older people with sight loss are also more at risk of isolation and poor mental health, the impact of lockdown, the lack of access to rehabilitation services will also have had an increased impact on the health and wellbeing of blind and partially sighted people.
NHS care beyond the pandemic requires transformation of eye care services to ensure that the best use is made of the whole eyecare workforce, including high street optometrists, orthoptists, ophthalmic nurses and technicians alongside ophthalmologists. It is vital that professional competencies are used appropriately to increase capacity within eyecare.
This requires effective IT connectivity between high street opticians and hospital eye care services. The current situation has promoted healthcare economies throughout England introducing new ways of working, particularly between optometrists and ophthalmologists using a variety of IT systems. In effect, a variety of IT systems are being trialled. Learning from these pilots must be collated to enable the most efficient and effective IT systems to be widely adopted. New ways of using technology such as video consultations, virtual clinics and teleophthalmology are being used. There is tremendous potential for these new ways of working to significantly increase capacity in eye care. However it is essential that patient satisfaction and experience of these new ways of working is monitored and evaluated, to ensure inequalities in access and outcomes are not exacerbated.
Eye Clinic Liaison Officers (ECLOs) are key in helping patients understand the impact of their diagnosis and providing emotional and practical support. They work closely with medical and nursing staff in the eye clinic, and the sensory team in social services. ECLOs have the time to dedicate to patients to discuss the potential impact of their eye condition, enabling clinicians to focus on diagnosis and treatment. Currently about 40% of ophthalmology departments in England fail to provide accredited ECLO services. This needs to change to ensure patients with sight loss are able to access appropriate support services and maintain independence.
Provision of low vision services varies enormously throughout England, including through hospital eye services, high street optometrists and charities. Essentially low vision services seek to enable people to make the best use of the sight available to them. Practitioners conduct an assessment, provide or sell low vision aids, such as magnifiers, lighting and eye shields to help people with everyday tasks like reading and going outside in bright light. A service will provide training about how to use the vision aids. Most low vision service users are older people. Some services have closed completely during the lockdown while others are providing some level of services remotely. Over time services will need to adapt the way they work to reduce infection control.
People who develop sight loss rely on local authority provided vision rehabilitation services, which form part of the Care Act Section 2 preventative duties. These services carry out a rehabilitation assessment, preferably in-person at the individual’s home, so that their interaction with the home environment can be assessed for, for example, lighting and trip hazards, and the impact of their sight loss on daily living skills and mobilisation can be evaluated. Adaptations, equipment, aids and training can then be provided to maximise independence.
There was already a substantial existing backlog of people in England waiting for vision rehabilitation assessment, and services, upwards of 12 months in some areas. The reasons for this are complex, but include:
However, we are aware that some local authorities had suspended waiting lists, and that Rehabilitation Officers of Visually Impaired people (ROVIs) have been redeployed away from rehabilitation duties in response to front-line pressures, in response to front-line pressures during the pandemic.
Because specialist rehabilitation services (Tertiary Preventative Services as defined by Care and Support Statutory Guidance) are not regulated activities, vision rehabilitation suffers from a low visibility and priority from management and political leads. These services are unique in this regard, being high risk activities, assessed and delivered by specialist staff, yet going unreported, unmonitored and uninspected.
The existing backlog is likely to be made worse following the end of COVID-19 restrictions, as local authorities are likely to prioritise the completion of care needs and financial assessments before specialist rehabilitation assessments, unless directions are received to prioritise assessment and delivery of services in parallel. We are also concerned to hear reports of local authorities that are considering a “Year 0” approach post COVID-19, deleting previous waiting lists and starting again.
Section 77 of the Care Act 2014, which requires councils to maintain a Sight Loss Register, is an important duty for blind and partially sighted people, in requiring the local authority to identify and make contact with those who have been referred with sight loss, and keep this register updated.
The COVID-19 response highlighted a problem that contact details and preferred communication format on the Sight Loss Register are not actively maintained and may be years out of date. This should be corrected and considered as part of emergency response preparedness in future, to ensure those who have alternative format preferences for communication are not disadvantaged in a crisis.
Child vision screening, when first attending school at the age of four or five, is undertaken as part of prevention and early intervention services, is important to identify and treat eye problems during the critical development period, while the brain is still developing neural connections to the eyes, therefore preventing avoidable sight loss such as amblyopia (lazy eye).
Over 20% of 6-7 year old children in the UK have imperfect vision; mainly refractive errors such as hypermetropia (far-sightedness), myopia (short-sightedness), anisometropia (eyes having different refractive power) and astigmatism, but also vision deficits such as strabismus (where the eyes are not straight) and amblyopia. Amblyopia is the most common vision deficit in children in the UK, occurring in 2-5% of children, which can lead to a failure to develop binocular vision, interfere with social and psychological development, and ultimately lead to loss of sight in the weaker eye, and an increased risk of blindness, if untreated.
Child Vision Screening, for which the UK National Screening committee has produced guidance, forms part of the “Healthy Child Programme: Pregnancy and the first 5 years of life” document from the former Department of Health. Delivery of the programme is a legal duty for local authorities under “The Local Authorities (Public Health Functions and Entry to Premises by Local Healthwatch Representatives) and Local Authority (Public Health, Health and Wellbeing Boards and Health Scrutiny) (Amendment) Regulations 2015”, which transferred specific NHS Act 2006 health functions from the Secretary of State.
However, screening services are only mentioned in general terms 2015 amended regulation 5A(5)(b), and Child Vision Screening is not specifically included in the mandated universal elements of the 0-5 Healthy Child Programme, or the Mandation factsheets, produced as part of the transfer of functions.
All of this makes it unclear as to whether or not Child Vision Screening is a mandatory element of the screening services delivered by English local authority Public Health departments.
The most recent 2020 Survey of Child Vision Screening services in England undertaken by the British and Irish Orthoptic Society found that only 47% of local authorities followed UK NSC guidance in their provision or commissioning. RNIB is concerned that an already inconsistent approach to screening in England, by contrast with the universal coverage in the other devolved nations, could be exacerbated post COVID-19 if local authorities feel able to opt-out of provision. This will lead to a greater risk of vision deficits being missed, in time to be treated.
Children with learning disabilities are at a much higher risk of sight problems and eye health disorders, and there is evidence of barriers to their accessing eye care and high unmet need.
They also face extra barriers to accessing wider healthcare, which can put them at increased risk of missing out on the care they need, and avoidable death. In addition, due to the increased risk of adverse outcomes from respiratory conditions for many disabled people, they may be more likely to need to access healthcare services.
At this time, it is vital that health and social care workers can still make the reasonable adjustments required by law that these patients need.
In the longer term, SeeAbility, a sight-loss charity that specialises in working with people with autism and learning disabilities, reports that 85% of children attending special school would either be unable to participate in or fail the UK NSC child vision screening tests, which makes these tests unsuitable for this customer group. There is also, currently, no wider planning for their community eye health needs.
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