ECLO Patient Experience Questionnaire UK report February 2017 – July 2017

“Everything has fallen into place after seeing the ECLO, I feel over the moon.”

Impact data

This document summarises the findings from the RNIB ECLO impact tool and the monitoring data. The following findings are a summary of national figures for England, Wales, Scotland and Northern Ireland. Between 1February 2017 to 31 July 2017 693Patient ExperienceQuestionnaires (PEQ) have been carried out. The PEQ includes 15 quantitative questions and 3 open ended qualitative questions, which have yielded a wealth of information and insight. We have monitoring data for 10,750 individual customers seen between 1 February to 30 July 2017. We also have interaction data for 25,253 individual customer interactions with the ECLO. Please see appendix for full data set.

Summary of the findings

  • The people supported by ECLOs are more likely to be female (59 per cent – monitoring data).
  • Majority of customers aged 75 years and over (56 per cent – monitoring data).
  • Support from the ECLO came at the right time for 83 per cent of patients.
  • ECLOs are substantially increasing people awareness of the support available to them. When asked how informed they were about the support available to help them/people living with sight loss, prior to seeing the ECLO 15 per cent felt that they had been well informed or very well informed and after seeing an ECLO, this rose to 96 per cent (an 81 per cent point increase).
  • ELCOs are increasing people’s understanding of their eye condition and how to treat their eye condition. After contact with the ECLO 57 per cent of patients had a better understanding of the eye condition and 45 per cent of patients felt that they had a better understanding of how to care for and treat the eye condition(s).
  • Most patients(94 per cent)felt that the ECLO gave them the support they needed at the time.
  • Patients reported increased emotional wellbeing as a result of the support provided by an ECLO (82 per cent).
  • A large proportion of clients were not certified (41 per cent – monitoring data).
  • ECLOs are vital in helping people get the support they need. 78 per cent of patients stated that the ECLO referred them, put them in touch with, or informed them of services outside of the hospital. Of these patients, 79 per cent felt that they would not have accessed or found this support without the ECLO and 68 per cent of patients used these services and 99 per cent of patients found these services helpful or very helpful.

“I would have been lost without this service, they have been brilliant.”

Findings

ECLO customers and their interactions

ECLOs are situated in eye clinics to provide emotional and practical support at the point of need for all patients, family, friends and carers, acting as the bridge between social and medical provision. Most customers are people with sight loss (81 per cent) but a significant proportion are the friends, family and carers of people with sight loss (16 per cent).Monitoring data also suggests that one in seven customers (14 per cent) have more than one enquiry within this six-month period.

Monitoring data also reveals that:

  • Majority of customers were white British (82 per cent). Only 5 per cent of customers were from black and minority ethnic.
  • Majority of clients either lived alone (42 per cent) or with a partner (35 per cent).
  • A large proportion of clients were not certified (41 per cent).
  • Just over a quarter of clients were certified partially sighted / sight impaired (27 per cent).
  • One in five clients were certified as blind / severely sight impaired (20 per cent).
  • Most common eye condition were:
  • Variations of AMD (50 per cent)
  • Variations of Glaucoma (20 per cent)
  • Variations of Cataracts (12 per cent)
  • Family support was provided for over a fifth of customers (22 per cent)

Outcomes of the ECLO service

Emotional well-being

“We felt so alone and lost. Before we spoke to the ECLO we were at rock bottom, we were left in limbo. The ECLO changed our lives. She kick started things off and got the ball rolling. She was a life saver.”

Both the qualitative and quantitative findings suggest that patients have experienced an increased sense of emotional wellbeing because of ECLO support.81 per cent of respondents reported their emotional well-being had increased as a result of seeing an ECLO.

“She was the lifeboat.”

Qualitative comments suggest people appreciated the ECLOs taking time to explain different services, eye conditions, and for providing a listening ear for worries and anxieties. Many people also commented on the empathetic and friendly nature of ECLOs. Before contact with the service people reported feeling upset and not able to see a solution, which changed after seeing the ECLO as people often felt calmer, reassured and more positive.

“I went right down, I lost my self-esteem and suffered with depression. I stopped going out and would not answer my friends. I went to the clinic and got really angry and said, ‘why is no one answering my questions? You are taking away my independence.’ The doctor filled out a form for me and I got to meet the ECLO. I asked all the questions and received lots of answers and I was put in touch with groups and people started coming to my home to help. I just gelled with the ECLO and it was fantastic. I am now a different person. I go out again and have caught up with friends. I am a happier person; the service is wonderful. My life has changed I am now a happier person and its brought life back to me.”

“My father was extremely depressed and suicidal and said he felt so lonely. Once I reached the ECLO service it was brilliant, without her we would not be where we are today. She actually sent out all the forms she had promised, she checked on things and dealt with me on my father’s behalf, which was fantastic. She told me what I had to do to get him registered and she even offered to attend appointments with him when I could not go…his confidence has increased enormously, he is now going out independently, his quality of life is now fantastic.”

Getting support at the right time

The majority of people (83 per cent) said they saw the ECLO at the right time. However, 12 per cent of people said they saw the ECLO too late, and a small proportion 4 per cent said they saw the ECLO too early. In the qualitative feedback, many people noted that they would have benefitted from knowing about, and accessing, the service sooner.

“I did not know anything about the service, I have been going to the hospital for 6 years and never heard of any support, you’re left in limbo. I saw a doctor I had never seen before who rang the ECLO service. I could not believe how fast things then moved and the fantastic support I have received. The simplest of things like stickers on my appliances and a thing for your drinks have made an enormous impact on my life and independence. It is fantastic, I cannot stress enough how much of a difference it has made to my life, it’s like winning the lottery.”

“I got very depressed when I lost my driving licence as driving was my livelihood and I went to a very dark place, I wish I had the ECLO 5 years ago to help me through that.”

Reassurance and a single point of contact

Many people reported feeling reassured by knowing the support was available even if they weren’t in the position to access the support presently. People felt reassured to know that support was available in the future for if, and when, their sight deteriorates and/or their circumstances change. People also felt reassured by having a single point of contact at the hospital for any queries, someone that they can trust and rely on to advocate for them.

“It's nice to know there is help for me in the future as things change as my sight loss is slowly changing.”

“Just knowing the ECLO is there is a great relief but at the moment we don't really need her as my daughter is doing well now…I will get in touch if I need to.”

“We didn't know which way to turn. We had no idea where to go or who to ask. We were very impressed with the ECLO service, really pleased…We now don't feel we are out on a limb, things really moved when we had had the contact with the ECLO and we have someone to talk to now and ask questions.”

Time to talk and listen

Most of the individual client interactions occurred in the ECLO’s office (19 per cent) or over the telephone (18 per cent, see note 1). Whilst most of the client interactions lasted around 20 minutes or under (55 per cent).

Findings from the PEQ demonstrates that people appreciated the time that the ECLO spent with them and noted not feeling rushed. The ability to spend time with patients, family, friends and carers discussing services, aids and adaptations and providing emotional support is valued, as clinicians are unable to spend time with people in this way.

“The ECLO had lots of time for me, the hospitals never seem to have time for patients and the ECLO seems to be always available for us, which is fantastic.”

“The ECLO explained a lot, had more time than the consultant as they don't have a great deal of time they only answer one or two questions, but the ECLO was brilliant and spent a lot of time with me answering any questions I had.”

Understanding of support and services

ECLOs have a significant impact in helping people to have a much better understanding of the support that is available outside of the eye clinic. Prior to having contact with the ECLO only 15 per cent of respondents reported either being very well informed or well informed about support outside of the eye clinic; this increased by 81 percentage points to 96 per cent after visiting an ECLO.

“She gave me lots of information she also introduced me to new contacts, an IT service, and to new ideas on how to progress with my life. She made me feel more confident. I can't praise her enough, so helpful and encouraging.”

Practical support and take-up of services

The ECLO is a both a source of information and advice and a vital gateway to further practical support. The most frequent type of support provided for clients was the provision of specific information, advice and guidance (65 per cent).

“The minute I spoke to the ECLO my life changed completely. She sent me leaflets and a booklet. She referred me to social services, the RNIB and the opticians, and she put me in touch with groups. She was easy to talk to and understanding. Nothing was rushed, she took her time and listened to me. I went from 0 to 1000 in a matter of 2 weeks as a result of seeing the ECLO.”

Information, advice and guidance interactions were given most frequently about:

  • Local information (52 per cent)
  • Equipment / Resources (49 per cent)
  • Their eye condition (38 per cent)

PEQ findings also suggest that respondents have a better understanding of how to care and treat their eye conditions after visiting an ECLO with 57 per cent of respondents reporting a better understanding of their eye condition (28 per cent said that this was not discussed). 45 per cent said they know more about how to care and treat their eye condition (34 per cent said that this was not discussed).

“I have been made more aware of what macular degeneration is. I did not understand it but after speaking to the ECLO I have found out a lot more and it really helped.”

“I have limited mobility and the ECLO explained how my condition was affecting the distance perspective, which I did not realise. It made me realise what I can and can’t do and not to feel guilty about asking for help.”

“She explained everything about the condition, how to care for it - we feel very lucky because everything became so much clearer.”

17 per cent of customers were referred to other forms of support. Of the total number of customers with recorded interactions, referrals were made most frequently for:

  • Sensory teams (rehabilitation) (29 per cent)
  • Low vision teams (24 per cent)
  • Local societies (8 per cent)

“The ECLO put everything into place for me. She arranged for social services to visit who gave me a level indicator, and someone else who gave me a magnifier and anti-glare glasses. She arranged for D.W.P to sort out the attendance allowance and pension credit. Everything has fallen into place after seeing the ECLO, I feel over the moon.”

“The ECLO boosted my confidence in so many areas. The ECLO put me in contact with a rehabilitation team, and help with access to work and PIP.”

PEQ responses demonstrate how important the information and referrals are for customers.

  • 78 per cent of respondents said they were informed of, or put in touch with, services outside of the hospital.
  • Of those who were informed or put in touch with services, 68 per cent of respondents reported having used the services, and 22 per cent reporting that they intend to use the services
  • 99 per cent of patients who used the services found them helpful or very helpful.
  • 79 per cent of respondents who used the services said that they would not have accessed or found the services if the ECLO had not referred them.

As a result, 94 per cent of respondents to the patient experience questionnaire reported they felt they had got all or most of the support needed to help them live with sight loss.

Qualitative comments support this as many people noted that they wouldn’t have known where to turn without the support of the ECLO, this further applies to the services and support the ECLO referred and/or informed people of.

“I didn't know she was there. She opened up a whole new world for me. I wouldn't have thought there was support there for me but the ECLO opened lots of doors for me. She gave me leaflets and a booklet and told me about aids and equipment, and they referred me to the low vision clinic who helped me with magnifiers and are going to help me at work. The ECLO has helped to make my life easier and safer.”

“I was having a bad day, very tearful and the registrar sent me to the ECLO who was really good. I felt she understood and she made me feel more confident and optimistic. She showed me little tricks that have helped with lighting and how to do my puzzles. I love to cook but can’t see things on my cooker and she told me about things that can help with that.”

“Since meeting the ECLO my whole world has changed for the better. I had lost my confidence but since seeing the ECLO it has come back. She told me about Galloways where I met 8 lovely people who all also have sight conditions and all have the same emotional issues. We have all became good friends and we now meet up once a month… I am so happy since seeing the ECLO it was like Pandora's box, it was opened up.”

Independent Living

Support and services provided by ECLOs can help people maintain independent living, stay in their homes, and retain employment with the help of aids, adaptations and support services.

“The ECLO made me feel more confident and made me feel as though I could go back to work.”

"I can’t think of anything she didn't do. I live on my own so she sent people who put things in my home a stair lift, wet room, and altered all the lighting.”

“The ECLO sent someone round regarding aids for my home, he put dots on my light switch as I was having trouble finding them, also the dial on my microwave wasn't clear and put some orange dots on it so I can see it better. She was so helpful, plus she sent someone round to put handrails outside my back door. I go to the monthly meeting for the blind society, which I enjoy and is very informative, they send a taxi for me which so helpful, she has made a lot of difference to my life I can't praise her enough.”

Referral pathways

The ECLO acts as a bridge between the medical and social provision, linking the two often disconnectedareas, thereby making the patient journey more seamless. Monitoring data shows the ways in which the ECLO acts as the link between the two:

  • CVIs were completed for a quarter of customers (24 per cent)
  • 52 per cent of customers were given local information
  • 38 per cent of customers were given information, advice and guidance about Social Services

“She acted as a liaison between myself and the Low vision clinic making sure that my eye assessment went off to them and Social Services.”

Learning

When asked about improvements to the service and how they found out about it, many people noted frustration and surprise that they were not systematically made aware of the ECLO service by consultants and clinicians.