Vision Support ServicesBeing there • Person centred • Self management

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ContentsForeword 4

Cost of sight loss 5

Sight loss and falls 6

Sight loss and depression 7

Vision Support Services 8

Vision Support Service locations 9

Emotional support 10

Practical support 11

Evidence and impact 12

Financial savings to health and social care 13

Additional benefits 15

• Peer support 15

Hidden sensory loss 16

• Learning disabilities and sight loss 16

• Dementia and sight loss 16

• Vision Support Services – complex needs 17

Interested in finding out more? 18

References 19

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ForewordBeing there: for when people find out they are losing their sight

Imagine what it must be like to be told that you are going to lose some or all of your sight. What would it mean to you personally – your family, your work, your social life?

Every day in Scotland, ten people begin to lose their vision; but only one in six will be offered any form of emotional or practical support. Yet without this, people can find it very difficult to cope. They can rapidly lose confidence, leading to social isolation, and experience feelings of depression, anger and confusion.

RNIB Scotland is working, along with partners, to establish a network of local Vision Support Services (VSS). These will offer people newly diagnosed with sight loss support, both emotionally and practically, in adjusting to their new circumstances.

We want everyone in Scotland to have the support they need to find their lives again.

John Legg, Director RNIB Scotland

“ The Vision Support Service provides a vital link at the point of diagnosis by offering emotional and practical support. Both patients and the eye clinic benefit immensely from the service and it ensures that patients adjust and learn to cope with their sight loss. There has been excellent feedback from those who have utilised the service and I have no hesitation in recommending the VSS.”Zac Koshy, Consultant Ophthalmologist

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Cost of sight loss200,000 people currently live with sight loss in Scotland. This is set to more than double by 2050 [1], which equates to an estimated 400,500 people. Of these 80 per cent will be over the age of 60.

In 2013 the direct costs associated with partial sight and blindness in Scottish adults was £151.1million [1] with indirect costs equating to £472.3million.

Summary of direct costs associated with partial sight and blindness in Scottish adults 2013

Direct costs £million

Hospital recurrent expenditure 44.7

Non-admitted expenditure 33.7

Prescribing expenditure* 20.6

General ophthalmic services (GOS) 32.3

Expenditure associated with injurious falls 1

Research and development 0.5

Residential care and community care services 13.2

Capital and administration 5.1

Total 151.1

* Includes the cost of Lucentis typically used to treat age-related macular degeneration.

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Sight loss and fallsFalls are a major cause of disability and the leading cause of mortality resulting from injury in people aged over 75 in the UK [2].

The rate of falls in older people with sight loss is 1.7 times higher than other older people of the same age, with hip fractures 1.3–1.9 times higher. We know from a large body of research that falls in older people result from multiple risk factors. These include increasing age, previous history of falling, gait and balance problems, mobility limitations, fear of falling, multiple medications, environmental or home hazards, and sight loss [2].

Almost half (47 per cent) of all falls in the population of blind and partially sighted people are directly attributable to the sight problem [1]. The cost to NHS of falls associated with sight loss in Scotland is at least £1million per annum [1].

The Vision Support Service can help people overcome their fear of falling and give advice on how to avoid falls.

The rate of falls in older people with sight loss is 1.7 times higher than other older people of the same age

“ My biggest obstacle was getting out and about, I was afraid I was going to fall which really knocked my confidence.”

Jean Robertson

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Sight loss and depressionThe prevalence rates of depression in elderly populations with sight loss are between 25 per cent and 45 per cent [1]. The relative risk of depression is estimated to be around 3.5 times higher for those with sight loss compared to those fully sighted [1].

Deteriorating vision can have a negative impact on lifestyle, leading to increased anxiety and isolation. It is estimated that up to 30 per cent of those living with age-related macular degeneration experience moderate to severe depressive symptoms due to vision loss [3].

In 2009/10 mental health problems cost Scotland an estimated aggregate cost of £10.7 billion with the costs of health and social care estimated at £1.9 billion [4].

The Vision Support Service provides critical emotional support freeing up clinical staff’s time. Emotional support is explained in more detail on page 10.

“ I was shattered when I was diagnosed and felt like committing suicide. I didn’t know how I was going to cope, go outside or read letters. I was totally depressed and had turned to alcohol to cope. The Vision Support Officer was someone who was willing to listen to me and understood my concerns.”

Steven Gardyn

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The relative risk of depression is estimated to be around 3.5 times higher for those with sight loss

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Vision Support Services include:

• Service users • Carers• Family• Ophthalmologists• Social work services • Rehabilitation and mobility

services • Nurses• Optometrists• Orthoptists• Falls teams

Vision Support ServicesThe Vision Support Service provides vital emotional and practical support to anyone newly diagnosed with sight loss and provides a critical link between service users and support services.

Vision Support Services

Service users

Nurses

Orthoptists

Optometrists

Falls teams

Social work services

Family

Rehabilitation and mobility services

Carers

Ophthalmologists

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Vision Support Service locations:

• With an RNIB service: Ayrshire and Arran, Borders, Edinburgh and Lothians, Shetland and Tayside,

• With a similar service: Grampian, and parts of Greater Glasgow and Clyde

• With no service: All other regions – Highland, Forth Valley, Fife, Lanarkshire, Dumfries and Galloway, Western Isles, Orkney

Vision Support Service locationsThere are 38 major ophthalmic outpatient departments across Scotland. In September 2014 only 36.8 per cent of these were offering patients emotional or practical support.

With an RNIB service:Ayrshire and Arran, Borders, Edinburgh and Lothians, Shetland and Tayside,

With a similar service:Grampian, and parts of Greater Glasgow and Clyde

No service:All other regions

1. Highland

2. Grampian

3. Tayside

4. Forth Valley

5. Fife

6. Lothian

7. Borders

8. Lanarkshire

9. Dumfries and Galloway

10. Ayrshire and Arran

11. Greater Glasgow and Clyde

12. Western Isles

13. Orkney

14. Shetland

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Emotional support includes:

• Listening • Empathising• Acknowledging• Talking through worries or

concerns• Normalising

Emotional supportEmotional support is critical for anyone newly diagnosed with sight loss, their family or carers. All our Vision Support Officers are skilled professionals who have undertaken the City University accredited Eye Clinic Support Studies Course.

Listening

Normalising Emotional support

Talking through worries or concerns

Acknowledging

Empathising

Tom had lived with sight loss from childhood but nothing prepared him when his sight deteriorated suddenly.

“ My biggest concern was my wife had passed away and how I was going to cope on my own. The Vision Support Service helped me in so many ways. I felt a sense of optimism and that I would be able to maintain my independence. I felt positive when I returned home.”

Tom Massey

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Practical support includes:

• Impartial information on local and national services

• Identification of need • Information on eye condition • Advice on good eye health• Information on importance of

treatment compliance• Referral to statutory and voluntary

services• Impartial advice and information

on registration• General helpful hints and tips• Advice on safety• Links to peer support

Practical supportPractical support is also viewed as an essential element for people living with sight loss, as well as their family or carers:

Practical support

Identification of need

Referral to statutory and voluntary services

Advice on safety

General helpful hints and tips

Links to peer support

Information on importance of treatment compliance

Information on eye condition

Advice on good eye health

Impartial information on local and national services

Impartial advice and information on registration

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Evidence and impactVision Support Services collate core data on each person supported by the service. In addition to this we effectively monitor the impact of our emotional and practical support through service user experience questionnaires and quarterly service user follow up surveys.

In 2013 Vision Support Services helped over 1,150 people who were newly diagnosed. A follow up survey of a sample of those helped shows the impact of the outcomes observed:

• 96 per cent reported better emotional wellbeing especially in regard to reduced pessimism about the future

• 92 per cent reported the meeting with VSS as “a major cause” or “the most significant cause” of improvements in their independence and quality of life

• 88 per cent who got advice said that they felt more confident in avoiding falls.

Jim was referred to ophthalmology and then told, he could no longer drive and was offered registration.

“ I was in shock and couldn’t take it all in. My concern was how I was going to cope. Everything felt easier after meeting the Vision Support Officer, she took us through services that could help and even referred me into the ones I was interested in. I would definitely recommend the Vision Support Service.”

Jim Boal

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Financial savings to health and social careA study [5] has been conducted by RNIB, Action for Blind People and Cardiff Institute for the Blind, to estimate the financial value of outcomes attributable to the Vision Support Service (known elsewhere as ECLO). This demonstrates the financial business case and cost effectiveness of providing early intervention and support through the Vision Support Service.

Based on a full-time and well-established service the study highlighted the following outcomes and savings:

Outcome Valuation* Savings*

Increased emotional wellbeing

Cost of NHS counselling(£910) £95,009

Increased independence in home

12 months of social services home visits(£2,673)

£257,080

Reduced fear of falling

NHS hip fracture cost(£27,085) £17,840

Reduced follow-up NHS appointments

Cost of two nurse appointments (£67) £8,009

Total savings per year £377,936

*Valuations are based on UK data. The study explains in detail the figures used to calculate these savings.

The results of the study concluded one full-time and well-established Vision Support Service can provide savings of £377,936 a year to health and social care budgets.

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In addition to the financial savings, there are other attributable savings, which include:

• reduced NHS follow-up appointments release nursing staff and appointment spaces

• reduced fear of falling releases surgical and theatre staff time, operating time, rehabilitation requirements and much more

• increased emotional wellbeing releases qualified counsellors and appointment times as well as reducing the knock on effect depression and mental health can have on other services such as GPs, mental health nurses, pharmacists and prescription costs

• increased independence in the home (equals savings to reduced social care home visits) frees up social work employees’ time, appointment times and can help to reduce waiting lists. In addition to this, the Vision Support Service screens each referral before it is sent to the social work teams, which can also aid the social work teams when prioritising case allocation and case management.

Return on investmentThe average cost of one full-time Vision Support Service, combining the salary, employer’s costs such as training and travel costs, full management and delivery of the confidence building Looking Forward programme (detailed on page 15), comes to £41,000.

This equates to a return on an investment of £9.22 for every £1 invested based on savings of £377,936 per year.

The savings to health and social care budgets as a unique result of the Vision Support Service are £9.22 for every £1 invested

“ I attended the optometrist because I thought I needed new reading glasses and was devastated at the diagnosis of two eye conditions and having to give up driving and work.”

Lynette Lusk

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Additional benefitsAt no extra cost, the Vision Support Service offers a four-week peer support programme to service users in the community called Looking Forward.

Peer supportThe benefits of peer support are widespread for individuals. These include better mental health, increased sense of wellbeing and increased confidence and learning skills.

As well as the recognised health benefits, peer support can prove to be a worthy financial investment in the long term, resulting in lower overall costs, fewer hospital admissions and reduced bed days [6].

By creating a supportive environment, the Looking Forward peer support programme allows people to talk about problems and solutions with others who are experiencing similar difficulties.

100 per cent say they would recommend Looking Forward

Average confidence level score before Looking Forward is 4.4 (1 = low confidence, 10 = extremely confident)

Average confidence level after Looking Forward – 8.25

““ Since attending Looking Forward I have a more positive outlook, I found out about support and services available and I am now more independent and confident in getting out and about on my own and would definitely recommend it to others.”

Barry Carmichael ”

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Hidden sensory lossHidden sensory loss is a term used to describe when sight loss is not the presenting condition. Consequently sight issues may be “masked” by the primary condition.

RNIB’s Bridge to Vision Service aims to increase awareness of the prevalence and incidence of hidden sensory loss and to ensure that people with learning disability, autism, dementia or stroke have their sensory loss identified and treated in their local community.

Vision is the key to learning, communication and movement. The more a person can see, the easier it is for them to make sense of their world.

RNIB has a team of Vision Support Officers who specialise in complex needs. This team help individuals to access primary optometric health and social care services as well as offering emotional and practical support.

Learning disabilities and sight loss• People with learning disabilities are 10 times more likely to have

serious sight problems and people with severe or profound learning disabilities are most likely to have sight problems.

• People with learning disabilities may not know they have a sight problem and may not be able to tell people.

• 6 in 10 people with learning disabilities need glasses and often need support to get used to them.

Dementia and sight loss750,000 people have dementia in the UK, most of whom are over 65 and around 1 in 7 of the over 65s is living with significant sight loss. By the age of 75 at least 2.5 per cent of people will have both conditions. As the population ages, the number of people with both dementia and sight loss will increase. In care homes, studies indicate a higher proportion of residents may have both conditions.

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Vision Support Services – complex needs include:

• Assessment of how the person uses their vision in everyday life

• Support to access community or hospital eye care services

• Emotional and practical support• A personalised vision passport to

influence support plans• Training to carers and

professionals• Advice, information and

signposting to other services

Vision Support Services – complex needs

Vision Support

Services – complex

needs

Assessment of how the person uses their vision in everyday life

Training to carers and professionals

Advice, information and signposting to other services

A personalised vision passport to influence support plans

Emotional and practical support

Support to access community or hospital eye care services

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Interested in finding out more?If you are interested in finding out more please contact:

Vision Support Services and Looking ForwardClare Jewellt: 0782 440 9816clare.jewell@rnib.org.uk

Vision Support Services – complex needsIain Kennedyt: 0758 411 4641 iain.kennedy@rnib.org.uk

Or alternatively contact our head office on 0131 652 3140 (further details on back page).

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Photos on pages 6, 7, 12 and 14 are posed by models. Photo credits: Aaron Amat, PT Images, Rasstock, Chubykin Arkady/Shutterstock.com

References1. Future of sight loss UK, 2014, RNIB

2. www.profane.co/vision-and-falls-prevention-infographic

3. Optometry Today, July 2014, www.optometrytoday.com

4. What’s it Worth Now? SAMH, 2013, www.samh.org.uk

5. Evidence and Impact Report, 2014, RNIB

6. Need2Know Briefing: Peer Support, 2012, Mental Health Foundation

RNIB Scotland12–14 Hillside CrescentEdinburght: 0131 652 3140e: rnibscotland@rnib.org.ukrnib.org.uk/scotland

RNIB is there for anyone living with sight loss.Call our Helpline on 0303 123 9999 or email helpline@rnib.org.uk

© RNIB Scotland September 2014Registered charity number SC039316

Breathing Space is a free, confidential phone and web based service for people in Scotland experiencing low mood, depression or anxiety.

Breathing Space and RNIB Scotland recognised the vital link between staying connected while also supporting people emotionally. Today emotional support is offered during working hours through the RNIB Vision Support Service and out of hours through the Breathing Space phoneline.

Call 0800 83 85 87 or visit breathingspacescotland.co.uk

Lines are open: All weekend from 6pm Friday to 6am Monday. Monday to Thursday from 6pm to 2am.