Coming together for the mental wellbeing of those with visual impairments
The mental health of those diagnosed with sight loss was discussed at the July meeting of the APPG on Eye Health and Visual Impairment
06 July 2023
The emotional impact of sight loss was the key focus at the July meeting of the All Party Parliamentary Group (APPG) on Eye Health and Visual Impairment.
Held on Wednesday 5 July, the 75th anniversary of the creation of the NHS, the meeting was hosted by Marsha de Cordova, MP for Battersea and co-chair of the APPG.
Speakers from Royal National Institute of Blind People (RNIB) and the optometry and psychiatry professions detailed how mental health support is lacking for those diagnosed with sight loss, and why increased provision in this area is vital.
Speakers included Baroness Sheila Hollins, a professor of the psychiatry of learning disability at St George's, University of London, former president of the Royal College of Psychiatrists, and former chair of the Health Inequalities Committee; Amanda Hawkins, the strategic lead for counselling and mental health at the RNIB; counselling services manager at the RNIB, Tina Doyle, and optometrist and postgraduate module leader at Cardiff University, Marek Karas.
Opening the meeting, de Cordova noted that eye health was not given priority in NHS England’s Long Term Workforce Plan, which was published on Friday 30 June.
De Cordova told attendees that she had raised the lack of eye health consideration in the plan in Parliament on Monday 3 July.
Four in 10 of those presenting at low vision clinics are suffering from poor mental health, de Cordova shared.
Baroness Hollins, speaking about mental health and disability, added that around 10% of people with learning disabilities will lose their sight.
The Special Schools Eye Care Service (SSECS), which is set to be expanded to around 160,000 children from 2024, is “brilliant” in tackling this issue, Hollins said.
“In some ways, learning to talk about our mental health is what matters most,” she said.
Hollins shared the story of a personal friend, who has recently been told that she will lose her sight and is experiencing a high level of distress as a result.
Support in such cases cannot be left to family and friends who do not have lived experience of the issue, Hollins emphasised.
She added that social isolation can quickly become a problem in such cases, and that there is currently no National Institute for Health and Care Excellence (NICE) guidance for psychological care for those suffering from sight loss.
Counselling is required, Hollins said, and Eye Clinic Liaison Officers (ECLOs) can also help.
De Cordova also noted that ECLOs should not be entirely funded by the voluntary sector, as they currently are.
View from the charity sector
Amanda Hawkins shared that, upon joining the RNIB, she was surprised to find that there was no embedded mental health support for those diagnosed with sight loss.
This is despite sight loss being one of the conditions that the public most fears a diagnosis of.
Hawkins explained that the impact of sight loss can hit individuals at any point in their life, no matter how long they have been experiencing it for.
She noted that it is “hard to be disabled at the moment,” with the COVID-19 pandemic and waiting lists for cataract surgery making life for difficult for many people.
Hawkins shared the story of a blind woman who was left entirely unable to care for herself after her husband was admitted to hospital with COVID-19, as there was no external support in place.
The number of people seen by the RNIB’s counselling service in 2022
Destigmatisation in the seeking of mental health support, coupled with an increasing number of people going blind, meant that the RNIB’s counselling service saw more than 3000 people in 2022, Hawkins said.
Over half (56%) of blind and partially sighted people are worried about the future, she shared, adding that “people are living with huge amounts of anxiety every day” and that this takes a severe toll on mental wellbeing.
Over two thirds (67%) of blind and partially sighted people want someone to talk to, Hawkins said, but the RNIB currently only reaches 19% of them.
She added that people often feel talking about their mental health to their families can make them feel like a burden.
“Hope is incredibly important when we talk about mental health,” Hawkins said.
She believes that normalising the emotional impact of sight loss and embedding it into clinical training is the first step to tackling the issue.
Awareness raising amongst allied health professionals, led by them so that they can be upskilled in a way that works effectively, is also important, she explained, as is developing a sight loss model for NHS therapists who are accessed via the Talking Therapies service.
She also highlighted that mental health issues are often seen in blind or partially sighted young adults, who have had support in mainstream school but find themselves without it when they reach university.
Ensuring that children grow up ‘sight loss informed’ will mean they develop the skillset to cope with adult life, Hawkins said.
She also believes that mental health support should be part of the care pathway for those diagnosed with sight loss in the same way it is for those diagnosed with cancer.
Tina Doyle, counselling services manager at the RNIB, told attendees how stigma and lack of awareness around sight loss has severely impacted her life.
Doyle had a sight impairment since birth, but was not told until her 30s that she would lose her sight entirely.
She explained how, after a misdiagnosis at the age of five, her parents told her that she should not tell anyone about her sight impairment or that she had “bad eyes.”
Despite significant difficulties at school, Doyle grew up believing that everyone saw in the same way that she did.
She explained how lack of assistance led to “lots of accidents,” including being “run over several times.”
She developed a lack of self-worth that existed until she had children, Doyle explained.
It was after she fell off a pavement, pulling her four-year-old son with her, that her husband and brother were able to persuade her to undertake mobility training.
Her four-year-old son then told her that her white stick had ‘made his life so much easier,’ Doyle said.
She was later told that she would lose her peripheral vision and light perception, she shared, adding that “the thought of having no sight at all was very daunting.”
With the support of her husband, she was able to attend college and evening classes, and later university, where she completed a counselling and psychology degree.
Doyle joined the RNIB in 2016, and is now the charity’s counselling services manager.
Despite her increased self-confidence and the use of mobility aids, Doyle explained that she still regularly has to explain that she cannot socialise anywhere that music is playing, and that crowded spaces are very difficult to navigate.
“Unfortunately, in my job I do see people with very similar situations coming through,” she added.
A numbers game
Optometrist Marek Karas works in the low vision clinic at St Thomas’s Hospital, and also with SeeAbility.
He emphasised that the expansion of the SSECS was based on evidence and hard numbers.
Karas reported on research by Professor Tom Margrain and Dr Claire Nollett at Cardiff University, involving 1000 patients over 30 months, half of whom were seen at St Thomas’s Hospital and half in Welsh optometry practices that offer a low vision service.
The trial used a 15-point questionnaire to identify symptoms of depression and anxiety in patients, Karas explained.
It revealed that 43% had symptoms of depression, and that of these 75% had not received any support.
This ‘real life snapshot’ provides the best evidence in the UK for the link between sight loss and depression, Karas believes.
As a result of the study, a requirement was made that two questions on depression be asked during all low vision appointments in Wales.
Data and evidence from the profession is key in making the case for mental health provision in the sight loss treatment pathway. Those with information to share can do so by contacting the APPG on Eye Health and Visual Impairment directly.
Two questions on anxiety will also be added as a requirement in the near future, he said.
He believes this work could be a model for “a nationwide programme for identifying people with depression.”
The same team are now looking into the way the questions are asked, Karas said, adding that training for the charity sector on how to identify depression has also been created.
“The next piece of news is what is done with those patients who are identified with depression and anxiety,” Karas said, noting that the results lead to bigger questions around provision of mental health services.
De Cordova added that the prevalence revealed by the study succeed is “giving NHS England a question to work with.”
For now, Karas believes that “the ECLO system is our best hope of getting to people in a timely manner.”
Doyle added that, in working to secure mental health provision for those with sight loss, the most important thing is that “we all come together.”