Report from RNIB Research and Practice Day 4 Nov 2016

Report from RNIB Research and Practice Day 4 Nov 2016

‘Early Intervention: Practice, Impact and Learning’

Receiving a diagnosis that you are losing your sight can be extremely distressing. This year RNIB’s Research and Practice Dayfocused on new developments in evidence and practice enabling us to better meet the needs of people going through this experience in the eye clinic. The Eye Clinic Liaison Officer (ECLO,or Sight Loss Advisor) is central to this. The result was an exciting day that saw a packed room of people from diverse roles, organisations and locations involved in discussion and debate, cementing the importance of working together.

Presentations

Carolyn Chamberlain

Carolyn, Head of Operations for ‘Being There’ with Action for Blind People, explained that around 100 people each day are told they are losing their sight and there are seven million consultant led appointments each year. The potential need for ECLO support is therefore massive and the ambition is to provide coverage across the whole of the UK. Of the 150 trusts in England with the highest footfall, still only 52 have ECLO provision. The challenge is significant and currently we struggle to get the NHS to fund ECLO posts, however there have been recent successes, with three new RNIB Group ECLOs in place this year, and three new contracts agreed just this week.

Colin Whitbourne

Colin,Action for Blind People’s Director of Partnerships, described how new partnerships across the sight loss sector are succeeding in getting ECLOs in new places. For example, in Sheffield, after 12 years of trying, joint funding between Sheffield Royal Society for the Blind, RNIB and the Clinical Commissioning Group (CCG) has now secured funding for a full-time ECLO post.

Ann Bamford

Annreminded everyone of the power of ECLOs. A stroke had left her with some cognitive impairment, speech problems, and unable to go out alone. She described how meeting her ECLO was ‘like being given a bag of magic beans with each of the areas that he went through with me being like seeds’. Her ECLO helped her access vision rehabilitation and benefits, linked her to her local sight loss society, and crucially had listening skills which enabled her to share symptoms. Ann thought she was ‘going mad’, but her ECLO confirmed what she was describing was Charles Bonnet Syndrome, visual hallucinations common among people who have lost sight. Now she volunteers with her local society and on local strategic boards. Ann reflected that ‘a sturdy plant has emerged from these beans’.

Cathie Burke

Cathie shared her experiences of 17 years working as an ECLO: ‘a job I love’. Based at Sunderland Eye Infirmary, she had succeeded in becoming embedded in the clinic, and made strong links into the community, so that referrals came to her from a wide range of internal and external sources. Cathie talked about how she had initially needed to persuade some clinicians, including one who she made a bargain to ‘give me one client and if I have made a difference in six months you give me more’. After that trial period she had proved the value of the service she offered.

Cathie described the wide range of areas she offered support with, from lifestyle advice in the early stages of sight loss to staying in employment: the challenge is staying up to date on all of these areas. Support can be provided at all points as an individual’s sight deteriorates, with the role being similar to a ‘life coach on a journey’. The final point of this journey can sometimes be preparing people for the end of treatment; emotional support throughout is crucial.

Gina Floyd

Gina, Evaluation and Impact Officer at RNIB, challenged those attending to estimate how many people the 47 ECLOs she has monitored have reached over the last year. Responses were much lower than the actual number of 19,200. Over 1,700 people have completed a questionnaire to assess the impact of ECLOs following their contact, revealing that:

• knowledge of services and support increases, as theECLO plays a navigating role to other services;
• nearly three quartersof people had not sought support before contact with the ECLO, two thirds had used the services they were signposted to, and almost all found them helpful or very helpful;
• nearly three out of five people know how to treat their eye condition as a result of the ECLO intervention; and,
• levels of anxiety and optimism remain stable in the three months after seeing an ECLO.

With many existing ECLOs at risk, this is valuable information to make the case for maintaining, as well as extending, ECLO provision (contact to obtain the full report). A next step is to develop shared resources to support local sight loss charities in measuring the impact of the ECLOs they employ. Gina highlighted that those who’ve had ECLO support are passionate that others should have access, but that people often aren’t aware of their existence: her challenge to the audience was how do we make this happen.

Mark Llewelyn

From the Welsh Institute for Health and Social Care, University of South Wales, Mark gave us a preview of findings from his research to answer key questions about the impact of ECLO provision on the quality of life of people with sight loss, and on the eye clinics in which they are based.

Over the last two years, Mark has carried out over 140 interviews with, and surveyed over 300 people with, sight loss; collected details of activities from almost 100 members of clinic staff; and analysed over 26,000 ECLO appointments. ECLOs clearly take multiple roles: they help patients deal with worries and concerns, advocate for them, act as a connector, bring together and educate professionals and stimulate change in clinic settings. Mark’s conclusions are thatECLOs:

• help those people with the greatest needs and appear to maintain their health related quality of life; and,
• enhance and broaden the care which clinical services provide, potentially reducing peoples’ longer-term care needs, and they release NHS staff to perform their clinical roles.

Mark flagged two important caveats: that we need to ensure that the impacts expected of ECLOs are realistically within their remit and that some people have needs that they are not getting support for and the challenge is how we meet this. Mark’s research will be published in Spring 2017.

Tom Margrain

Tom, from Cardiff University, drew our attention to high levels of depression among people who have been diagnosed with sight loss. Tom described how the DEPVIT study (Depression in Visual Impairment Trial) assessed over 1000 people in low vision clinics and found that 43 per cent reached clinical levels of depression. As comparison, three per cent of women and seven per cent of men in the general population suffer depression at any one time.

Tom compared two treatment methods, and found that Problem Solving Technique was more effective than referral to a GP or doing nothing, however effects were small (see for more detail).

Tom concluded that screening for depression should be routine practice in low vision clinics, however only two are known to do this across the whole of the UK. Then, at minimum, people should be referred to their GP but new research is needed to explore treatments. Tom called for charities to fund high quality research in order to extend the evidence base for effective services. The potential for the sight loss sector to jointly lobby for Government research funds came out of discussion.

Chrissie Moorish

The contribution of ECLOs to maintaining wellbeing was highlighted by Chrissie. She initially contacted RNIB to give feedback on the ‘amazing service’ she had received from her ECLO at Sussex Eye Hospital, and her experiences were capturedin a short film. Chrissie is ‘72 years young’, has had Glaucoma for over 20 years, cataracts and, most recently, has developed AMD. She described how the diagnosis of AMD happened when she was at her lowest ebb, but meeting her ECLO, Emma, ‘has opened doors for me that will never be closed, she has seen me through the worst part of this journey... I have felt like I was the only person on the planet... because I’ve got wellbeing, because there’s my sight loss angel Emma there, I know I’m not on the scrapheap’.

Highlighting new practice developments

Four new developments in support for people with sight loss around the time of diagnosis were discussed. All of these are rooted in partnerships between people with sight loss and professionals, and partnerships across organisations.

1. Stevie Johnson

Stevie, Clinical Lead at RNIB, described new practice guides available to support ECLOs. Covering learning disabilities; children and families; employment and dementia, they’ve been written in partnership with ECLOs and other professionals and are available at In addition printed copies of flyers and laminated posters are available to remind clinic staff of the benefits of referring to ECLOs by contacting .

2. Tina Houlihan

RP Fighting Blindness ( has recently increased its support for professionals so that they better meet the needs of people with Inherited Retinal Dystrophies. Tina Houlihan,CEO,described how they are equipping professionals who might not have experience of supportingindividuals with RP with a comprehensive list of sources of help, the offer of training sessions and ensuring they’re aware of the organisation’s helpline and services.

3. Simmone Miller

People who’ve experienced the CVI and registration process have developed ‘Sight Loss: What we needed to know’, a booklet setting out the information they would have liked to receive when getting their diagnosis.Simmone, Early Intervention Manager at RNIB, signposted people to for an electronic version, or large print copies are obtainable free of charge by contacting . The booklet has been supported by several sight loss charities.

4. Emma Hughes

Emma, Development and Engagement Director with Visionary( discussed partnership working between local and national sight loss organisations to share learning on what makes for high quality services. Emma described how local organisations have enthusiastically welcomed this approach. The Information, Advice and Guidance (IAG) Framework is an initial output from this joint working, giving guidance and a self assessment checklist ( /local-charity-staff-guidance).

An international perspective

Partnership, and awareness raising, were picked up again byIrma Uijen de Kleijn and Marloes van Oort, but as themes in their work in the Netherlands. Royal Dutch Visio ( provides a wide range of services across the Netherlands, but they need referrals from ophthalmologists, in order to unlock funds to deliver a service to an individual with sight loss. Educating clinicians about the benefits of their services is key. The support needs of children, and their families, are met through multi discliplinary teams, including a child psychologist, social worker and low vision specialist, who carry out home visits to observe, assess and co-operate with parents. Relationships with families extend over a long period but the challenge is to work in effective partnership with parents.Achieving a balance between supporting parents to retain control, and acknowledging their skills,whilst needing to pass on expertise about the child's blindness is difficult. They work hard to ensure that goals are the parents’ rather than the Visio workers.

Round table discussions

The event culminated with round table discussions to share views on ‘what had challenged us during the day?’, ‘what we are still missing?’ and ‘what should we do next?’

What had challenged us during the day?

Issues emerging included:

• Realising that people are ‘slipping through the net’and missing ECLO support, including black and ethnic minority people.
• The broadness of the ECLO role, for example, the extent to which we can expect ECLOs to take on entrepreneurial aspects.
• The ECLO role in relation to depression: should ECLOs be dealing with depression? Do ECLOs need training to screen?
• Needing to understand what constitutes depression and the difference between anxiety and depression.How does sight loss compare with hearing loss in its link with depression?
• How can we encourage consultants to refer to ECLOs? Needing to change their mindset so they don’t wait until the end of treatment.

What’s missing?

Round Table Groups identified the following as being needed to increase early intervention support:

• case studies to complement data (maybe captured through video) and ensuring that local societies have the ability to capture their good practice;
• desire to hear more about policies and practice in other countries;
• support from paediatrics for blind and partially sighted children at an early age and support for parents to cope with, and get advice for, supporting their child; acknowledgement of the potential influence of parental depression;
• understanding the barriers to ECLOs widening their expertise;
• sharing best practice: what do ECLOs do really well and why;
• a need to concentrate on prevention rather than just intervention, including in relation to mental health;
• understanding who ECLOs are not engaging with, for example are they reaching black and minority ethnic people?
• understanding how to engage with people who have been discharged or have left the eye clinic;
• education for clinicians about referral pathway to ECLOs;
• increased professional recognition for ECLOs;
• understanding of what commissioners want; and,
• cohesive ECLO implementation plans.

Where these elements already exist, or are being implemented, then we need to ensure effective communication and sharing.

What should we do next?

Attendees came back together to share their recommendations. The most strongly endorsed were:

• A call for strong leadership in developing and implementing strategy on early intervention in eye clinics.
• To encourage more mixing of ECLOs, vision rehabilitation workers and occupational therapists; to clarify the roles of each and ensure collaboration.
• Universal availability of ECLOs through advocacy and leadership among ECLOs and people with sight loss;greater buy-in from clinicians to achieve this; and a paid for branding and awareness campaign so that people expect to see an ECLO, fundraise and lobby for them.
• Ensuring that the referral pathway to ECLOs works effectively, and that everyone with a need reaches them.

Reflections on the day

FaziletHadi, RNIB’s Director of Engagement, gave some final reflections on the day, asking us to consider:

• How do we reach blind and partially sighted people so that they advocate to demand better services? And,
• How can research be combined with advocacy, as this is an essential link if research is to be valuable?

Fazilet noted that many of the ingredients for bringing about change were obvious at the event, with strong commitment to partnership and using evidence, but that we must ensure we are not in the same position in three years time.

rnib.org.uk