Every day 250 people start to lose their sight | At least half of all sight loss is avoidable | More than two million people have sight loss | 350,000 registered blind or partially sighted | Age-related macular degeneration is the leading cause of blindness in adults. |
The lockdown measures introduced due to coronavirus have had a disproportionate impact on blind and partially sighted people in the UK. This submission looks at the effects of the lockdown on blind and partially sighted people, focusing on the impact these changes, across the many functions of government, have had on blind and partially sighted people’s physical and mental health and wellbeing, and making recommendations for lessons that could be learnt by public sector bodies for the future.
The initial Government focus was, and has continued to be, on protecting and supporting extremely clinically vulnerable individuals. With the threat the virus posed to them, this was understandable. However, the unintended consequences of the decisions made at this time demonstrated how disability must be better understood and considered in Government’s broader policy making, in future public emergencies and beyond.
In the main, problems that blind and partially sighted people have experienced as a result of coronavirus and resulting restrictions have been the result of:
RNIB has worked with the Cabinet Office, DHSC, DEFRA, DfT, BEIS and DCMS, and directly with supermarkets among others, to mitigate the effects of coronavirus legislation and regulations on blind and partially sighted people across multiple areas of life, and will continue to do so. However, the third sector should not have to intervene retrospectively, when the Equality Act, public sector equality duties, and the Accessible Information Standard are in place.
Future disease-related emergencies are likely to involve social distancing as a mitigation against transmission. Social distancing is near-impossible for many blind and partially sighted people, who not only may be unable to tell how far away other people are, but whose vision impairment may not be obvious, leading to challenges by staff or members of the public. Additionally, purely visual warnings or cues, such as queue markers, one-way systems, areas marked off with floor tape and posters stating the precautions that need to be taken in a particular building, would be inaccessible for many.
“It is very hard to know how to keep two metres away from people when you can’t judge distance… I can’t see the markings on the floor, so have been shouted at… I ended up in tears. It’s not my fault that I can’t see the floor markings.”
“People don’t understand what a white cane is for which makes you a target for comments like, ‘Two metres, give me some room’!”
The impact of these measures on blind and partially sighted people, and on disabled people more widely, did not seem to have been anticipated or mitigated against by government in its initial planning. Additionally, only occasional reference to planning for reasonable adjustments was made in BEIS/DCMS Coronavirus guidance for businesses – in the main, a generic reminder that their Equality Act obligations still applied to employees and customers, with organisations left to determine for themselves what that meant for them. Specifying possible reasonable adjustments in itself would have been a “quick win” for the Government, rather than leaving it to individual businesses to work out how the changes might be inaccessible.
As a result of this newly unfamiliar, more visual, environment, many once-confident blind and partially sighted people simply didn’t leave their house. The effect on confidence and wellbeing was significant, with two in three blind and partially sighted people reporting that they felt less independent than before lockdown:
“I'm normally a truly strong and resilient person and can tackle so many things in my life, but lockdown is really tough; it has taken away so much from me. Going out has become another area of life to negotiate… If people could just keep a wide berth, I'd feel a lot more comfortable. The possibility of people getting too close makes me fearful going out. All I ask is for people to just take that little extra care to look around them, and we can all be safe together.”
Coronavirus rules – including the lack of clarity about whether blind and partially sighted people could use a sighted guide from outside the household - have made it particularly difficult for blind and partially sighted people to exercise, or access goods and services in person. Many also reported feeling particularly isolated, feeling as though they were forced to stay indoors. Others reported a reduction in confidence in navigating independently, for example forgetting previously-familiar routes or cane skills.
RNIB has worked with the Cabinet Office to create the “Please Give Me Space” logo (a figure in a circle with two arrows) which can be worn by those who find social distancing difficult or are particularly anxious about catching coronavirus – like those in the extremely clinically vulnerable group – to ask others to keep their distance. However, not all blind and partially sighted people are comfortable drawing attention to their sight loss.
Despite Equality Act and Accessible Information Standard legal duties requiring accessible communications, social media posts from governmental departments and bodies, and critical letters about the pandemic have been provided in formats inaccessible to blind and partially sighted people.
As one in five people aged 75 and over have sight loss, and many blind and partially sighted people have comorbidities, it is vital that information about changes in policy, procedures or advice is accessible to them, giving it the best chance of reaching those at high risk.
A quarter (26%) of respondents to our lockdown survey said they had struggled to get written information in a format that they could read and 17% said that they had struggled to access online information. RNIB advocated for the appointment of a Senior National Lead for Accessibility within the Cabinet Office. We continue to work with her to try and embed accessibility across all Government communications, however over the course of the pandemic progress was inconsistent and slow. For example, although RNIB has been providing accessible formats of the shielding letters, the recipient would need to be able to read the print phone number on the letter in order to access them. Preferred formats should be being routinely and automatically sent to those who use them, at the same time as everyone else.
A blind woman was recently given permission to take the Government to Judicial Review after she was unaware she should be shielding despite receiving four letters to this effect from the Government because the letters were inaccessible to her. The Government settled the case and have pledged to make changes to their systems.
This basic level of inclusion, to enable all members of society to participate freely, or in this case to stay healthy, safe and access support, should be at the heart of government planning, and not need the intervention of third sector organisations.
Similarly, increasing numbers of government systems now rely on digital-only systems, with no alternative routes to access, shutting out the digitally excluded, including a significant number of blind and partially sighted people. Sometimes these systems have also been inaccessible to disabled people using screen readers or other access technology, or in the way they are designed to interact with the user’s environment.
This is simply not acceptable. Under the Equality Act, and detailed in The Public Sector Bodies (Websites and Mobile Applications) (No. 2) Accessibility Regulations 2018, service providers are obliged make reasonable adjustments to ensure their services are accessible to all disabled people.
It is unacceptable that, until recently, blind and partially sighted people could not take a COVID-19 test independently. RNIB worked with DHSC to retrospectively ‘fix’ coronavirus home tests to make them more accessible. Changes made included the removal of the requirement to have an email address, remote support to read a small print bar code, and pre-made return boxes. However this “retrofitting” meant that they could only be made partially accessible.
RNIB also assisted with the NHS Covid-19 app, but was unable to prevent the use of QR codes as the primary basis for the system, which are inaccessible to those unable to see a poster’s location.
“Government adverts say ‘stay home, save lives’ but blind people who rely on online food shopping are being forced to go [out] shopping.”
Supermarkets were instructed by the Department for the Environment, Food and Rural Affairs (Defra) to prioritise the 1.5m people classed as extremely clinically vulnerable to coronavirus. In the days following, we heard from blind and partially sighted people used to relying on supermarket deliveries that this service had been withdrawn.
Many blind and partially sighted people had relied on this service for access to groceries for years, with some supermarkets like Sainsbury’s already having a priority customer list for disabled people. This instruction from the Government, at a stroke, left many blind and partially sighted people unable to access an online delivery slot, and without access to food.
“I’m registered blind with only central vision on my left and it’s so hard with everything going on. No online shopping spots and no help in shops”
At the same time, those blind and partially sighted people who had previously shopped in person found it difficult or impossible to navigate supermarkets with social distancing measures – new queuing rules, layout changes, markings on the floor indicating where to stand, instructions not to pick up goods to check, one-way systems, increased signage, or the addition of difficult-to-see Perspex screens. Some supermarkets only allowed one adult from a household inside at once, so preventing the use of a guide. And those who had relied on a guide from outside of their household to take them shopping were no longer allowed within 2m of that person. Social distancing also made it is less easy to seek assistance from staff who were understandably keen to keep their distance.
At one stage the RNIB helpline was getting over 100 calls a day about food – something we never usually hear about. Our research in early May 2020 found 74% of respondents were concerned about getting access to food while 21% of people had had to ration food, impacting both their physical and mental health.
RNIB, Visionary, Thomas Pocklington Trust, Vision UK and Guide Dogs wrote to Defra raising this issue on 27 March and submitted our joint petition with 22,653 signatures in April, calling for priority delivery slots to be given to those blind and partially sighted people that need them resulting in a discussion between our Chief Executive and Defra officials. Ultimately, RNIB’s helpline was authorised to refer blind and partially sighted people who need them for priority online delivery slots.
Over the course of the year, RNIB has also been in conversation with supermarkets, to share best practice on how best to embed accessibility considerations into any operational guidelines, and ensure that the welfare of customers with sight loss is not put at risk. These guidelines include advice on visual indicators, social distancing and accessing payment.
Several supermarkets committed to specifically helping blind and partially sighted people in store. As a result of this outreach we have been able to build relationships with supermarkets to create workable solutions to help increase access to groceries for blind and partially sighted people.
The decision to prioritise the shielding population for supermarket delivery contributed to a huge food access problem for disabled people. This unintended consequence could have been prevented if disabled people or their organisations, who understood many blind and partially sighted peoples’ reliance on food delivery, had been consulted.
Sighted guiding is support from a third party, that enables someone whose vision isn’t sufficient to navigate an unfamiliar environment.
RNIB raised sighted guiding as an issue with DHSC in March 2020, and was directed to guidance produced for unpaid carers who were could enter households to provide personal support, with suitable mitigation including Personal Protective Equipment (PPE). However, the definition of activities undertaken by a carer used in the guidance excluded sighted guiders.
The impact of this lack of foresight was to isolate blind and partially sighted people at home, preventing them from taking advantage of the limited options for socialising, exercising, or visiting family members in adult care settings, with inevitable consequences for their mental health and wellbeing.
“Because I live alone the isolation has been very difficult. I would usually go for walks with friends or family. However, they are so fearful of being fined as they live outside of my household ... I felt like I had been making so much progress before lockdown and now it’s as though I have taken 10 steps backwards.”
It wasn’t until six months later, in September 2020 that DHSC published “Supporting people outside their home” (currently titled “Finding support outside of your home during coronavirus”), which did help clarify that disabled people were allowed to use support from outside their household to get around outside of the house.
The situation would be improved through the implementation of recommendation 1.
The importance of the contribution of exercise to health and wellbeing was established by government early on, and changes to regulations have attempted to protect individual citizens’ ability to leave their house for exercise and essential journeys, whenever this was safe.
Local authorities were instructed by the Government to carry out rapid street changes with the intention of enabling more cycling/social distancing. However, because of the timescales involved local authorities have rarely carried out proper equality impact assessments.
The effect of these changes has in some cases been to inadvertantly make streets less accessible for previously confident and independent blind and partially sighted people.
We raised the risk of changes being made without proper consultation and therefore being unlawful directly with the Government in Spring 2020. A recent court case, by the London Taxi Drivers Association found the guidance for London’s Streetspace scheme unlawful because, amongst other things, it failed to take account of the needs of disabled people.
RNIB is developing “Key principles of inclusive street design”, in response to the volume of short-deadline local consultation, to establish a baseline for safe, equitable streetscapes.
Coronavirus has disrupted the delivery of routine eye checks carried out by high-street optometrists. This aspect of primary health provision relies on charging for appointments to be sustainable, which already means that deprived areas with the greatest health need have the least provision. This is likely to be exacerbated following the disruption to business caused by coronavirus.
Since late March 2020, throughout the UK, significant numbers of secondary eye care patients are having their appointments deferred. This has included patients requiring monitoring for glaucoma and diabetic eye disease screening, increasing the risk of undiagnosed permanent sight loss. Surgery to treat cataracts has also been disrupted.
Patients requiring immediate sight saving treatment for previously diagnosed conditions such wet AMD and diabetic eye disease are still being treated in hospitals. Although, as in other health care areas, there was evidence of patients not attending appointments or going for emergency care because of their concern about contracting the virus and burdening the NHS.
The COVID-19 Urgent Eyecare Services (CUES) framework has been developed by NHS England to ensure high-risk, urgent and emergency eye care services continue during the pandemic. However, implementation is inconsistent. It is essential that all Integrated Care Systems (ICS) implement CUES, and clearly publicise information to patients about how eye care services can be accessed.
People who develop sight loss rely on local authority provided vision rehabilitation services to regain their independence. These form part of the Care Act 2014 Section 2 preventative duties.
During the pandemic, the needs of rehabilitation staff were not considered by government or local government alongside those of NHS and social care staff, even though their work also necessitates in-person assessment and close support in peoples’ homes. As a result of this, they were not able to access PPE, and newly diagnosed blind and partially sighted people were left without formal support to regain independence.
The work of rehabilitation services is poorly understood and undervalued. At the start of the pandemic, rehabilitation staff were displaced from service delivery to support other areas of adult social care, even though their work has been demonstrated to cost-effectively prevent the escalation of need.
Prior to coronavirus there were reports of substantial waiting lists, in excess of one year in some areas, for assessment and support. The existing backlog is likely to be made worse following the end of Coronavirus restrictions, with those who have lost skills and confidence during the restrictions adding to those who were already waiting and those who have been diagnosed with sight loss since March 2020.
There are concerns that local authorities will prioritise the completion of care needs and financial assessments before specialist rehabilitation assessments, as more normal working resumes.
There are almost 80,000 registered blind and partially sighted people of working age in the UK, however, only one in four are in employment. Over three-quarters of those in employment receive some type of support. Over half (51%) receive support through the Access to Work (AtW) Programme.
Providing a wet signature was extremely challenging for many blind and partially sighted people without sighted support, particularly while they have been working from home. The easements to AtW during the pandemic were well-received, allowing blind and partially sighted people more flexibility and time when making claims for funding.
However, inconsistencies in approach and messaging meant not all individuals were able to benefit from AtW easements. Some, despite being key workers, found the process slow and did not had the continuity they were expecting from AtW advisors, as staff had been moved to other teams. Some also reported receiving conflicting information, depending on which AtW staff member they spoke to. In addition, not all blind and partially sighted people in receipt of AtW support were aware of the easements, and what support was available.
All of this contributed to feelings of anxiety and stress, and financial hardship for those who paid for AtW support from their own funds while waiting for payments.
Accepting email claim forms from clients who request this as a reasonable adjustment under the Equality Act. Accepting employer and support worker signatures via email, made the AtW programme more accessible for blind and partially sighted people. AtW should extend these easements permanently, to include accepting the submission of important documents by email and accepting electronic signatures on claim forms.
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.
Every day 250 people begin to lose their sight. We want society, communities and individuals to see differently about sight loss. In our 150th year RNIB renewed our focus on creating a world where there are no barriers to people with sight loss.
April 2021