A fractured system: have existing problems in health and social care for visually impaired people been exacerbated by COVID-19?

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  • 1 Henshaws Society for Blind People, , UK
  • | 2 RNIB, , UK
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Visually impaired people in the UK have been adversely impacted during the COVID-19 pandemic due to an inconsistent approach between agencies and a failure to effectively manage key data. In this paper, fractures in the system already evident, particularly around the transition between health and social care, and the ways in which the COVID-19 pandemic has further starkly highlighted them, are presented. Key recommendations are proposed to improve the system and prevent such failings being repeated.

Abstract

Visually impaired people in the UK have been adversely impacted during the COVID-19 pandemic due to an inconsistent approach between agencies and a failure to effectively manage key data. In this paper, fractures in the system already evident, particularly around the transition between health and social care, and the ways in which the COVID-19 pandemic has further starkly highlighted them, are presented. Key recommendations are proposed to improve the system and prevent such failings being repeated.

Introduction

Measures taken by the UK government to address the coronavirus pandemic were deemed necessary to protect public health. However, the restrictions required had far-reaching consequences particularly for people already facing challenges in their everyday lives through Vision Impairment (VI) and other health conditions and disabilities.

Unassailable evidence is emerging around the impact of the pandemic on the disabled community as a whole. Key recommendations have been advised in recognition of the likely disproportionate impact of the virus on people with disabilities (Disability Rights UK, 2020; International Disability Alliance, 2020). However, many of these recommendations have not been implemented in the UK and disabled people have been disproportionately affected, with death rates considerably higher and the impact of the virus significantly more severe among disabled people in comparison to non-disabled people (Disability Rights UK, 2020; Greater Manchester Disabled People’s Panel, 2020; Inclusion London, 2020; ONS, 2020b, 2020c).

The pandemic has presented further significant issues for VI people, increasing their layers of risk and marginalisation (Allen and Smith, 2020; Au, 2020; Kampf et al, 2020; WHO, 2020). They are more likely to face multiple risk factors of age, co-morbidities and deprivation, meaning if they do contract the virus they have a higher probability of serious illness and for the disease to prove fatal (Emami et al, 2020; ONS, 2020c). In addition, significant and systemic failings in the support for VI people pre-COVID in the UK have been further exacerbated during the pandemic.

Pre-COVID-19

Working within a VI charity, it has become increasingly clear that VI people experience a greater incidence of depression, decreased levels of mobility and higher rates of poverty, which is further illustrated by the evidence (Allen and Smith, 2020). They also face issues around the management of their condition. The voluntary sector can play a key role in improving policy making and delivery by ensuring that those directly affected by a particular policy have a voice (Rabey, 2015). Characteristics of good policy making highlighted by Rabey include inclusivity, openness, transparency and collaboration, which can be harnessed through the embedding of voluntary sector organisations into the process. The World Health Organization recently recognised that as people live longer and their health needs become increasingly complex, there needs to be a range of services involved across the health, social care and voluntary sectors (WHO, 2017). In England there are up to 15 million people living with a long-term health condition and 1.2 million older people who are not getting the help they need (Richmond Group, 2017). There is widespread recognition in this country that better-integrated person-centred models of care are needed to meet these needs and that the voluntary sector can and should play a key part in this.

Where there is successful integration of voluntary sector provision, studies have shown clear results for some complex patients in terms of improving wellbeing outcomes and, for some groups, reducing health and social care costs (Gradinger, 2020). There is strong evidence that voluntary sector organisations achieve these health and wellbeing outcomes through direct treatment and support and supported self-management, and also that they deliver productivity and efficiency outcomes through system redesign (NPC, 2016).

It is a priority to integrate voluntary sector organisations into complex health and social care provision; however, it can be a struggle for organisations to collaborate equally with health and social care organisations and to make their voice truly heard (Croft and Currie, 2020). There can be huge variation even across relatively small geographical areas based on commissioning arrangements and relationships with local providers (Baird et al, 2018).

This paper highlights an example of voluntary sector engagement at a local level around a specific condition, with the aim of highlighting how voluntary sector organisations can advocate for their communities to highlight systemic issues and problems and hopefully instigate real change. Research undertaken by Henshaws (a voluntary sector organisation working with people with VI in Greater Manchester) over recent years aimed to ascertain the circumstances of VI people and how health and social care policy affects their lived experiences of sight loss.

Surveys undertaken from 2014 to 2018 (see Table 1) (Henshaws User Survey, 2018), reaching a total of just over 600 VI people from across Greater Manchester, found several key gaps in people’s experiences around the level of care expected under The Adult Sight Loss Pathway (Vision UK, 2015). This pathway provides a process map to promote a unified best practice response across local authorities in the UK.

Table 1:

Visually Impaired Peoples’ Experiences of the Adult Sight Loss Pathway in Greater Manchester

Percentage of respondents who answered ‘no’ in 2014Percentage of respondents who answered ‘no’ in 2016Percentage of respondents who answered ‘no’ in 2018Average percentage of respondents who answered ‘no’
When diagnosed, did you feel you understood your eye condition and what it might mean?48%47%44%46%
Was the certification and registration process explained to you at any stage?52%42%40%45%
After diagnosis, did you speak to anyone for support, advice or information?46%44%41%44%
Did you receive an assessment from the local council or sensory team?49%40%33%41%
Were you given information about other organisations that could help/support?55%37%42%45%

The results highlight major issues six years ago, with little improvement seen over the intervening period. In addition, a recent survey of patients with sight loss from across Greater Manchester showed that only 60% were aware of sight loss services available in their area and 71% stated that the main barrier was access to information, with lack of provision and complex referral routes also mentioned (GM LEHN, 2018). Evidence shows that good management of patients can minimise the visual loss and disability that are related to chronic eye disease, thus enabling people to remain independent (GMCA, 2017). Additional research carried out by Henshaws found that where there was proactive management of data (a Local Authority Register of Blind and Partially Sighted People), the following outcomes were achieved:

  • 66% were better informed about their eye condition and the support available to them;

  • 55% showed improvement in their emotional wellbeing and 52% in their physical wellbeing;

  • 52% reported improved confidence and independence.

This evidence highlights the fragmentation of the current system across Greater Manchester, meaning people with sight loss are not routinely getting access to the support and services they need but also that system changes can make a big difference to the outcomes experienced. As a voluntary sector provider, Henshaws’ research and understanding of VI people’s experiences are critical, with the potential to shape and inform policy and strategies for change. System changes with the inclusion and embedding of voluntary sector insight and services have been shown to achieve better overall outcomes in a number of settings (Local Government Association, 2017).

Systemic problems highlighted by COVID-19

The already fragile system we have outlined was exacerbated even further through the impact of COVID-19, underlining the need for systemic change.

At the start of the first UK lockdown in March 2020, Henshaws developed a survey to ensure that the Pathway to Independence model, a ground-breaking model to support VI people within the voluntary sector (Cooper et al, 2015), was responsive to the needs of VI people during th is time (see Figure 1).

In the illustration, at the center is a family symbol representing a family of four. The symbol is surrounded by textboxes on four sides, each of which in turn are connected to another textbox. The textboxes are as follows. A textbox on the top reads how can we help you? This textbox is connected to another textbox that reads over the telephone or face to face, we can provide you with specialist information to help you overcome everyday challenges and help you to take the next step. The textbox on the top is connected to the family symbol via a solid line. A textbox on the right reads let’s make a plan. This textbox is connected to another textbox that reads our expert team will work with you to assess your needs and develop a tailored support plant to ensure that you are in control of your development. The textboxes on the top and right are connected to one another via a solid line. A textbox on the top right of the family symbol reads if we don't offer what you need we will put you in touch with partner organizations that can. This textbox has dashed boundaries and is connected to textboxes on the top and right of the family symbol via dashed lines. A textbox on the bottom of the family symbol reads independence matters. This textbox is connected to another textbox that reads develop core skills to help you to live independently, communicate with confidence, increase your employability, and build your self-esteem and wellbeing. The textboxes on the right and bottom are connected to one another via a solid line. A textbox on the left of the family symbol reads friendship matters. This textbox is connected to another textbox that reads this programme of friendly, social, support and hobby groups aims to introduce you to likeminded people. They are a place to explore interests, develop skills or gain support. The textboxes on the bottom and left are connected to one another via a solid line. The textboxes on the left and right are connected to one another via a dashed line. The textboxes on the left and top are connected to one another via a dashed line. A text on the top left of the illustration reads pathway to independence enabling people of all ages living with sight loss and a range of other disabilities to make informed choices about their future. A text on the bottom right of the illustration reads Henshaws community and has a tagline that reads services beyond expectations.
Figure 1:

Henshaws Pathway to Independence Model

Citation: Voluntary Sector Review 2022; 10.1332/204080521X16265171827075

The survey was carried out with 955 VI people (Doyle and Cooper, 2020). Respondents were predominantly over the age of 70 and prioritised according to those deemed most vulnerable, mirroring key criteria set by the UK government. Headline findings were as follows:

  1. The overwhelming majority of respondents (83%) were not contacted by their local authority sensory team during the early stages of the pandemic.

  2. Forty-one per cent of respondents did not receive any of the public health messaging about coronavirus/COVID-19 in a format that was accessible to them.

  3. One quarter of respondents were informed they were at very high risk from coronavirus (extremely vulnerable and should be shielding).

  4. There was considerable variation across Greater Manchester with regard to the support people with sight loss received during this time.

These findings raise a number of key issues.

First, with regard to the lack of or delayed contact from local sensory teams, a critical part in the sight loss pathway is the management of the Certificate of VI (CVI) process and the conversion of CVIs into people actually being registered on the Blind and Partially Sighted Registers, a statutory duty of each local authority to hold. The survey findings raise some key questions about the management of this process:

The Certificate of Vision Impairment (CVI) form is for use by the patient or representative, consultant ophthalmologist and hospital eye clinic staff. It formally certifies someone as visually impaired, and also acts as a referral for a social care assessment if the individual is not yet known to social services. Its secondary purpose is to record data to be used for research into the underlying causes and the effects of visual impairment. (Royal College of Ophthalmologists, 2020)

As well as capturing significant information on a person’s diagnosis, the CVI form also captures vital information, which ascertains whether a person is living alone, requires the support of a carer, has any other known disability and, crucially, what their preferred information and communication needs are. The data are therefore being collected and retained and arguably should be used proactively at any point in time and especially during a pandemic.

Assuming a person who receives a CVI then goes on to be registered with their local council, they will then be entitled to a Social Care and Rehabilitation Assessment and potentially some rehabilitation support:

The benefits of vision rehabilitation are widely recognised amongst VI people and professionals. Vision rehabilitation services provide crucial daily living and mobility skills, confidence and advice to VI people on how to maintain and live in their home safely, and to get out and about with safety and confidence. It provides people with the skills they need to be independent and to access and participate in the community. It can also prevent, reduce or delay the need for more costly care and support. (ADASS, 2016)

If this is the case then it raises the question as to why a large number of local authorities delayed communication with their registered population or failed completely in this task in the early stages of the pandemic. Recognising this issue, the RNIB and other charities working across England ensured that eventually 108 out of the 151 local authorities did communicate essential information to their VI communities; however, this could have been avoided with proper systems already in place (Chambers and Whitbourn, 2020). There are up to 15,000 people registered across Greater Manchester who did not necessarily receive timely support. The registered figures themselves are known to be a considerable under-estimation of the true numbers of people living with VI; there are an estimated 75,000 people across Greater Manchester with sight loss; and, if this is extrapolated further to the people estimated to have sight loss across the UK, then concerns about marginalisation become even greater (RNIB, 2019). In addition, analysis of registration and CVI data across Greater Manchester for 2016/17 shows only 75% of CVIs issued (total number 1,051) were actually converted into people becoming registered (RNIB, 2019). Analysis of this data across England shows 87% of CVIs are converted into registrations (total number 23,453) (Public Health England, 2020). As support is reliant on registration, there is justifiable concern not only about those who are registered but also about those people who have been issued a CVI but choose not to be registered. The current system was evidently unable to ensure that all VI people received the support they were entitled to during the early stages of the pandemic.

As voluntary sector practitioners, Henshaws has long been aware of the challenges involved with the certification and registration process; however, it is clear that COVID-19 has made existing disparities even starker. If such data processes were effectively managed there could have been a different outcome to the experiences reported within the survey. Our own work as a voluntary sector provider throughout the pandemic highlights that, due to our flexibility and responsiveness, we were able to communicate with 6,000 VI people across Greater Manchester by letter, followed up with welfare calls to more than 3,000 of the most vulnerable service users to offer support quickly and responsively. We also have evidence to show that where third sector organisations actually manage the Register on behalf of a local authority, they were also able to respond much more quickly. The chief executive of Sight Service in Gateshead stated:

‘We used the Register (our database) to identify those “high risk/isolated” and made telephone contact to ensure they were able to access support – this was to 300 or so people in the first instance, then we expanded the criteria gradually. This was all coordinated with the GP vulnerable lists and local authority response.’

Similarly, Bury Society for Blind and Partially Sighted People, which manages the Register on behalf of Bury Council, was able to respond quickly and efficiently – at the outset of the pandemic it utilised its data to identify lone or highly vulnerable clients and contacted them to offer support and assistance. Overall it was able to contact 1,169 people in Bury to check on their welfare and provide support. These examples highlight the ability of the voluntary sector to provide support quickly and efficiently when it is able to access the data to identify the appropriate people. Evidence from other sectors recognises that decisions had to be made quickly across government and the health and social care sector during the pandemic, but that the exclusion of people with lived experiences of certain conditions and disabilities was regrettable and would have mitigated against some of the adverse effects then experienced by these communities (Richards, 2020).

The second key issue is that 41% of respondents did not receive public health messaging in a format that was accessible to them. This was one of the key recommendations set out by the International Disability Alliance (2020) at the outset of the pandemic. The introduction of the Accessible Information Standard (AIS), in April 2016, legally requires health and adult social care providers in England to provide medical information in a format that VI people can access. There is evidence to show that this was not happening routinely pre-COVID-19 – a study conducted by Henshaws shortly after the introduction of the AIS found that 36% of VI respondents felt they had little or no access to health information (Doyle, 2017).

The CVI’s secondary purpose is to record data for research into the underlying causes and effects of VI. This arguably should be expanded with a requirement for health organisations to hold local CVI databases to ensure all people with a CVI receive accessible information, support and guidance as they navigate through health and their transition to social care services. This would ensure that data which are already routinely recorded are harnessed and utilised to support people rather than disappearing in the transition from health to social care.

An All-Party Parliamentary Group on Eye Health and Visual Impairment in June 2018 made a number of recommendations about the better management of data across ophthalmology departments. These included improvements in IT connectivity between services and ensuring the eye care pathway is clear and that it is effectively communicated to patients. This should also include the transition from health to social care and the management of the CVI to registration process. In the face of a global pandemic, to be effectively excluded from receiving key health information in an accessible format is, at the very least, marginalising but also arguably neglectful.

Third, just 25% of respondents were informed they were at very high risk from coronavirus and needed to shield, meaning 75% of respondents, who were potentially still extremely vulnerable, were unable to get the support they needed. The initial government-set criteria were narrow and based wholly on a medical model. Utilising this model failed to account for VI people who may have been equally as vulnerable to the virus and very much in need of the support provided (Maboloc, 2020).

The adherence to the medical model of disability by the UK government during the COVID-19 pandemic has affected visually impaired people in unexpected ways. It has been evident that there remains an absence of understanding at governmental level of the barriers that visually-impaired people face in everyday life. (Pilson, 2020)

Had the social model of disability been utilised, whereby there is recognition that social structures and systems and the way they are organised effectively discriminate against disabled people, people with VI may not have had to fight to get the support they needed.

Finally, the results indicated considerable variation in the support VI people received during the initial lockdown phase. A duty of care to all is outlined in the Care Act 2014, which aims to improve people’s independence and wellbeing. The Act makes clear that local authorities must provide or arrange services that help prevent people developing needs for care and support or delay people deteriorating such that they need ongoing care and support. Such disparities in support would therefore seem at odds with these principles. In addition, the England Health and Social Care Act 2012 introduced legal duties to reduce health inequalities, so to see inequity of provision and support in a relatively small geographical area indicates that for many health and social care organisations the VI community is simply not at the forefront of their provision and planning.

The future

The impact of their visual impairment on peoples’ mental health and emotional well-being is well documented and has been further evidenced during the pandemic. Of VI respondents, 54% stated the pandemic had had a negative impact on their mental health (Doyle and Cooper, 2020). This is higher than in the general population where 47% reported that their mental wellbeing had been affected (ONS, 2020a); international studies have found similar patterns (Gordon, 2020).

The ability to get out and about is crucial for independence and wellbeing and VI people will inevitably require expert support to relearn navigation and mobility skills, something they should expect to receive from their local sensory team. VI people across the country will require their own specific roadmap back to independence, involving re-enablement provision and significant support around the psychological challenges this will also present. For many people the ability to live life after losing sight has been made harder by some of the necessary, but restrictive, measures put in place as a result of the pandemic (Rehabilitation Workers Professional Network, 2020). This challenge to rebuild the ‘community confidence’ of VI people is one that must be accepted and factored into the future planning of health and social services. The information documented on a CVI form will be crucial to ensure all VI people get the support required.

Conclusion and recommendations

The voluntary sector, by its very nature, is able to look at the world and imagine how it could be better. Voluntary sector providers are able to work with people in a way that is unencumbered by health and social care bureaucracy. They are able to get closer to the people accessing their services and truly hear their voices and lived experiences. This includes their experiences of the health and social care structures that they may have to navigate through. As such, voluntary sector providers are in a unique position to represent those lived experiences and, where there may be issues and problems for people, to not only support them and fill some of those gaps, but also to advocate and champion their cause for these structures to be changed. Research has highlighted the challenges around patient advocacy, underlining the need to avoid tokenism and to fully embed patients across all stages of healthcare (Ocloo and Matthews, 2020). However, where advocacy works well, voluntary sector organisations are able to convey the experiential knowledge of the communities they work with and utilise this knowledge in such a way that its authenticity is not lost but harnessed to effect real change (Jones et al, 2020).

Henshaws’ ongoing research and frontline work with VI people over many years have highlighted that the voices of VI people and their experiences of a system that does not work for them have led to a number of negative outcomes for them and their families and that COVID-19 has further exacerbated these issues.

As voluntary sector providers within the VI sector, we believe a strategic transformational review with regard to the management of CVI data and the transition from health to social care services is long overdue. Clinical elements of the Adult Sight Loss pathway are currently being reviewed by NHS England under the Transforming Elective Care Services for Ophthalmology programme but we would urge NHS England to extend its focus to post-diagnosis support and better management of the CVI data. Inclusion on the local authority register is voluntary but there is still a requirement for individuals to have access to care and support that is not dependent on registration, and those with eligible needs for care and support should continue to receive this regardless of whether they consent to inclusion on the register. If they are not included on the local authority register then the only foreseeable way an individual could be reached would be through self-referral or through the information obtained within the CVI.

For the VI sector specifically, this need for a strategic transformational review of the interaction between health and social care with regard to the management of eye health and vision loss services is paramount. Within this review it will be imperative that there is recognition of the key role that charities and voluntary sector organisations have played for many years, and in particular during the COVID-19 pandemic, in supporting people with VI and plugging the many gaps in statutory services. The flexibility and responsiveness of many third sector VI organisations, coupled with their closeness to their service users, meant they were able to respond efficiently and swiftly to the COVID-19 crisis and provide much-needed support at the community level.

Greater guidance needs to be provided to local authorities around General Data Protection Regulation (GDPR) compliance and the administration of registers. Patients must be informed and fully understand the benefits attached to registration, and for those individuals who choose not to be registered, their data must be maintained on appropriate GDPR-compliant databases so they still have access to support should there be a legitimate interest.

Creating local and regional CVI registers within health organisations rather than local authorities will ensure all people issued with a CVI receive the appropriate information, advice and guidance, at all times supported by the expertise and flexibility of voluntary sector organisations. This will aid the Adult Sight Loss Pathway and ensure no individual has a known sight loss diagnosis without the support they require.

In sharing the evidence from this research we hope that other voluntary sector providers within the VI sector in the first instance could work in partnership to achieve these aims across the country. More broadly, we hope that wider voluntary sector organisations will also be able to utilise this evidence to facilitate holistic and person-centred pathways for people across the health and social care sector.

Acknowledgements

The authors would like to thank Dr Selwyn Hodge, Hon FRSPH, Hon MAPHA.

Conflict of interest

The authors declare that there is no conflict of interest.

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    • Search Google Scholar
    • Export Citation
  • Au, S.C. (2020) Blindness during the coronavirus outbreak, Cancer Research, Statistics and Treatment, 3(suppl S1): 901. doi: 10.4103/CRST.CRST_60_20

    • Search Google Scholar
    • Export Citation
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    • Search Google Scholar
    • Export Citation
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    • Search Google Scholar
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  • 1 Henshaws Society for Blind People, , UK
  • | 2 RNIB, , UK

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