London Visual Impairment Forum
DATE: 26th June 2015
10.00am – 3.00pm
Room 5&6, RNIB, 105 Judd St, WC1H 9NE
Minutes
Present:
Peter Corbett (PC), Thomas Pocklington Trust (Chair)
Roger Clifton (RC), ELVis
David Samuels (DS), Moorfields
Laurence Gardner (LG), Camden SIT
Maria Van Der Vorst (MvdV), Living Paintings
Ollie Natelson (ON), Barnet Borough Sight Impaired (BBSI)
Bernadette (B), Barking & Dagenham SIT
Alexa Sage (AS), Thomas Pocklington Trust
Mercy Jayasingham (MJ), VISION 2020
Jim Bole (JB), Brent SIT & RWPN
Tracey Cross (TC), Thurrock SIT
Jo Hall (JH), Thurrock SIT
Liz Cooke, (LC)
Roy Benjamin (RB), MSSC
Elaine Gardiner (EG), KAB, Bromley SIT
Miriam Osborne (MO), Kingston SIT
Dean Apps (DA), LBBD SIT
Jan Petrovic (JV), PrioritEyes
Mercy Oghenekaro (MO), Haringey Phoenix
Tracey Low (TL), Blind Veterans UK
Mike Woolston (MW) Guide Dogs
Toby Davey (TB), Vocal Eyes
Mike Brace (MiB), Havering Vision Strategy Group
Elizabeth Jones (EJ), Islington Talking News
Milena Dimitrova (MD), Hackney SIT
Madeleine Cassidy (MC), Support 4 Sight
Hassan Khan (HK), Thomas Pocklington Trust
Karl Farrell (KF), Hackney Vision Strategy
Marina Wilson (MW), IEDA
Desen Denktash (DD), WF Vision
Sue (S), WF Vision
Andrew Hutchings (AH), Hackney SIT
Brendan Eastwood (BE), Lewisham SIT
Mo Brace (MB), Sight Action Havering
Georgina Manly (GM), Thomas Pocklington Trust
Yazdan Elyas (YE) Redbridge SIT
Guest Speakers:
Davinder Kullar, RNIB
Sue Sinton Smith, DeafBlind UK
Beverley Duguid, Thomas Pocklington Trust
David Parkins, NHS, LEHN
Rowland Myers, Infosound London
Apologies:
Sharon Schaffer (SS) LVIF
Richard Holmes (RH) RNIB
Jackie Venus (JV) VISOR (Vice Chair)
Pauline Acott (PA) IEDA Newham
Chris Wilson (CW) KAB
Beata Duncan Jones (BDJ) H&F SIT
Christine Dolyak (CD) VIPON, Newham Eye2Eye
Hasmukhlal Dave (HD) Essex Cares SI
Adrian Hewitt (AH) Blind Veterans UK
Sue Chrimes (SC) Blind Veterans UK
Kevin Gregory (KG) Merton Vision
Pam Jarmian (PJ) Nystagmus Network
Roy Smith (RS) Metro Blind Sport
Ian Francis (IF) Metro Blind Sport
Norma Baillie (NB) PrioritEyes
John Harris (JH) RLSB
Dulal Ahmed (DA) RLSB
Simon Beyer (SB) TPT
Tania Dee (TD) Deafblind UK
Odette Battarel (OB) TPT
Robert Harris (RoH) Guide Dogs
Lorraine Lowther (LL) Sutton Vision
Rosa Gomez (RG) ActivEyes Redbridge
Rosie Watling (RW) Appa Me
Bob Hughes (BH) Sight for Surrey
Mary Hynes (MH) VIC
John Roulston (JR) RBKC SIT
Marsha de Cordova (MdC) SELVis
Jason Beal (JB)
Chris Wilsdon (CW) KAB
Fran Hibbert (FH) Merton Vision
Carol Serle (CS) WF SIT
Hayley Hurst (HH) Barnet SIT
Samantha Gager (SG) Beyond Barriers
Barry Cahill (BC) Guide Dogs
Marcia Green (MG) Haringey Phoenix
Gregg Szarzynski (GS) Croydon SIT
Paula Thomas (PT) GOSH
Marion Dodgson (MiD), Redbridge SIT
1. Seeing It My Way mapping: Beverley Duguid (TPT)
 In 2011 the RNIB created Seeing It My Way from the endorsement
of 1,182 blind and partially sighted people. The RNIB collected
information about what those with a visual impairment would like
through different services.
 10 outcomes were created, and together this is called ‘Seeing It
My Way’.
 Each Outcome is very detailed and you can find them at
https://www.rnib.org.uk/about-rnib-what-we-do-uk-visionstrategy/seeing-it-my-way
 In late December 2014, further research was completed to
understand how to measure these outcomes and identify if the
outcomes are meeting the needs of those with a visual impairment
(VI).
 Thomas Pocklington Trust (TPT) currently use the Seeing It My
Way outcomes framework (SIMW) as a tool to develop and
monitor Vision Strategies across London. This is especially useful
during the Action Plan implementation stage.
 One area that has been problematic when using the SIMW as a
tool with voluntary organisations is the lack of funding to complete
or start to explore all outcomes.
 Some voluntary organisations have chosen to embed the
outcomes into different projects.
 Circa six organisations have used, or currently use the SIMW
outcomes.
 It should be noted not all organisations can cover all outcomes
because they work in specific areas.
 Documents such as SIMW can be used to gain funding or support
new work.
 Work to identify potential gaps in the pathway is to be completed,
to help people with varying needs to use it.
 To create a more easily useable document a version with fewer
headings was created that still covers all of the outcomes.
o Social Care: Certification, Care Act, etc.
o Dual diagnosis: Learning disabilities, etc.
o Health & Wellbeing: Counselling, keeping healthy, peer
support, etc.
o Technology: Employment, Living at home, Banking,
Accessible formats, etc.
 Q: If we use the condensed SIMW outcomes to measure progress,
would it be a good use of SIMW?
 A: Yes, as the four areas make it more manageable and cohesive.
 Q: There is a lower incidence of higher needs including DeafBlind
people in many areas but they still need to be found and helped.
 A: This is important, when mapping strategies across SIMW, these
groups should be included – however funding to support this
should come from the Local Authority.
 Currently Merton Vision is measuring work with the SIMW
outcomes.
 If SMIW is used pragmatically, it will not be difficult to use.
 As the Local Authority have to respond to the Care Act, it would be
interesting to see if their work covers SIMW.
 It is important that SIMW is not solely on the agenda for voluntary
organisations.
Online Today (Switch On) project: Davinder Kullar (RNIB)
 The Big Lottery Fund are sponsoring a project to encourage those
who are VI to access information online and help develop skills
using technology, such as touch screen devices.
 Target is to reach 125,000 over three years within the UK.
 Help can be provided in two ways; either through peer support
workshop events, or one to one support at home.
 One of the main aims is to ensure people feel comfortable with the
new devices and intervening at the right time.
 Q: Is there a standard that people can aspire to, and can people
get retrained later if needed?
 A: The scope of the project is introductory level – so the initial fear
is removed. If people want to have further training they can be
referred to their local service point in their area.
 Q: Who is this offered to?
 A: Anyone with sensory loss.
 Q: Will you link with other agencies and organisations to not
duplicate work? Is this at the expense of losing volunteers from
buddy technology schemes?
 A: We welcome conversations with other organisations and
agencies. Other schemes are not at risk at all, as new volunteers
have been recruited.
 Q: Is there a charge?
 A: No charge.
 Q: What if there are not enough volunteers in one area to assist?
 A: We will find more support.
 Q: Are there opportunities for advanced users to benefit from the
scheme?
 A: Not at the moment for Online Today – however this is
something the RNIB is looking into.
 Q: Is there provision to train rehabilitation workers?
 A: Yes, they can either train to volunteer as they receive training or
come to an event.
 Q: Will you be working with the British Computer Association for
the Blind who also provide support in this area?
 A: We are happy to work with them.
RWPN (Rehab Workers Professional Network): Jim Bole
 In 2012 Lord Low agreed to discuss rehabilitation as a profession
in the House of Lords.
 After meeting with the Department of Health it was expressed that
such care should be provided by local councils to prevent safety
risks and that the professional body should be set up on a
voluntary basis.
 The RWPN was recently formally launched under the
administrative auspices of the professional Orthoptists body, BIOS.
 There are 130 members and 8 new members in the last two
weeks.
 The network is open to those who are interested in sight loss as
either full or associate members.
 There is a lack of training for those who wish to become a
rehabilitation worker.
 Training is important to raise standards so that VI people get a
consistently good service.
 There is a one day refresher training course and a four day
mobility training course.
 There is an annual subscription fee.
Deafblind Awareness Week 2015: Sue Sinton Smith
 356,000 are Deafblind in the UK.
 The red and white cane symbolises deafblind.
 Deafblind UK supports those who are aged 18 years and above.
 The majority of users are older who have led independent lives
and now struggle to come to terms with their condition.
 Consists of a lot of advocacy and signposting work.
 Main areas are in London and Essex – however they work to
provide services across the country.
 There are three social groups: Tower Hamlets, Newham and
Camden. These are all user led groups.
 Have befriending services for those who like company.
 Digital inclusion with iPads/tablets – volunteers work one to one
and everything is personalised to the user.
 Quarterly magazine, available in large print, email, braille and
audio.
 Hold guided walks for the VI.
 If organisations are interested, there is a small fee to organize and
hold.
 Walks are currently held in Islington and have others across
London that can be adapted.
 Sense support more of the younger generation – however both
Sense and Deafblind cooperate to support all ages.
 Re-chargeable ear aids are possible to purchase – however they
are not free from the NHS.
 Action: SS to send referral form with the minutes.
Eye Health and…Salt: Ollie Natelson (BBSI)
 Supporting documents were distributed prior to the meeting and
are available on the News/Resources page of the LVIF website:
http://lvif.co.uk/category/resources/h
 NHS Choices Website is helpful and provides a good diet plan –
however they promote 6g of salt a day.
 Body cramps do not relate to salt.
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Q: How beneficial are eye vitamins?
A: If you have a balanced diet, there is no need for supplements.
Alcohol does contain salt.
Any root vegetables or leafs boiled in water dissolves certain
nutrients such as potassium, therefore it is best to eat raw or bake.
Infosound London: Rowland Myers
 Pilot service began in December with launch as a charity since the
1st April with financial help from TPT.
 Provide information about services and events in audio for those
with a VI in all London boroughs, the city and all areas within the
M25. However it is a national charity.
 Each listener can choose what to listen to. Every listener can
decide when, how, and where they want to listen.
 Can listen via podcasts, website and audio player.
 Keen to work with all Talking News and magazines in London – as
long as the material they provide is not edited.
 Encourage listeners to listen online – however have to be aware
not everyone has access to the internet.
 Some articles are interview based and last up to 1 – 5 minutes.
 Have worked with over 20 organisations and would like to work
with many other organisations.
 All articles are non political and non commercial.
 All articles are pre recorded and edited.
 A quick count-up shows that, in June, individual Infosound
LONDON audio articles were downloaded a total of 1913 times.
 Estimate that Infosound LONDON listeners currently access
roughly 4,800 Infosound audio features per month.
 Infosound would like to work with Insight Radio RNIB.
 Can include a link to the article in a blog.
 From the website statistics it shows there are circa 150 listeners a
day. For individual items, there are circa 300 listeners a week.
 From next year there is hope to identify who is using the service.
 Action: Follow up with Talking News Islington – Rowland
Myers
 Action: Cascade information about Infosound – SS
London Eye Health Network (LEHN) Update: David Parkins
“Eye Health Network London: achieving better outcomes” and
LEHN in relation to the Voluntary Sector and Local Authorities –
Peter Corbett (Thomas Pocklington Trust)
 We need one consistent strategy for London covering the whole
eye health and sight loss pathway.
 DP meeting Clinical Senate soon with an Eye Health plan which
includes voluntary sector input and covers local authority services.
 In four months six working groups have developed a strategic plan.
A detailed document and stand alone executive summary
document have been created – available also in large print (other
formats on request).
 It is vital to understand there are different medical pathways
depending on the background of people’s sight loss.
 A key recommendation is to have an ECLO in every local area and
eye clinic.
 Need to understand how to measure work in order to know how to
improve.
 Would like to embed all national issues, such as waiting times and
proper follow-ups across the UK.
 Commissioners meeting in London to discuss: delivery of CCGs in
London, collection of data and contracts with providers. The need
for ECLOs in Hospital Trusts.
 The evidence has to be available to show financially and clinically
that a service improves the lives of VI people.
 Groups of CCGs now working together in some areas.
 The document has been and will be shared with CCG chairs,
Health & Wellbeing Boards, Royal College of Ophthalmologists,
Local Authorities, HealthWatch, Voluntary organisations, England
Vision Strategy, RNIB, International Glaucoma Society, and
Macular Society.
 Public Health and VISION 2020 have promoted this work
throughout.
 Q: If you place an ECLO in a hospital, will they become another
small cog in a very large machine – the NHS?
 A: ECLO services have been pushed through various channels. If
the hospital and local authority develop better communication,
more people can be helped. It would be ideal to have a dedicated
budget for low vision in the local authority and NHS.
 The split between optometry services and eye health care
provided by the NHS is not working as well as we need it to and
needs to be improved to address capacity and financial
constraints.
 The Care Quality Commission should challenge the eye health
system.
 Certain hospitals such as Moorfields are busy because other
centres close early and the quality of the service is therefore
reduced. The right people need to be seen in the right hospital and
at the right time.
 Need to develop what a best practice community ophthalmology
centre looks like.
 The voices of the users are not yet making an adequate impact on
political leaders.
 Need to identify people who do not know about their eye health
conditions and provide information about how to get treated quickly
and efficiently.
 Education is needed across the whole population so a patient can
know what the whole pathway is (and professionals!)
 There is a clinical cost for each of the other dual disabilities people
may have.
 The local authority is welcome to join the LEHN.
 There should not be an issue with sharing a patient’s information
from the hospital to the council if the patient is happy to share their
details. Need to ensure all sight loss sector organisations are
joined up and working together. They should be measuring what is
working and what is not working to move forward with their work
and should be made accountable
 Clinicians are good, it is the system that is letting them down.
 It is important to have a strategy to compare to other documents
such as the JSNA and Public Health Strategy – too many official
documents do not mention eye health adequately or at all.
 Action: To cascade large print copies of the document to all –
SS.
 Action: Provide Case studies, personal stories about what
has not been working in all services before the 21st July 2015
to David Parkins to reinforce the message to the Senate.
 ACTION: TPT to coordinate an endorsement letter from all
Vision Strategies in London. Email at d.parkins@nhs.net
LVIF Communication
 Stan Lopes has left Camden’s SIT.
 Moorfields now have an ECLO in Croydon and soon in East
London in conjunction with TPT.
 Alexa Sage is the new Development Manager for the employment
programme from TPT. The Project is aimed at people willing and
ready to go into paid work. Hope to deliver new project by
September 2015.
 Barking and Dagenham SIT: invite you to the launch of the new
Macular week, which they are pleased to be promoting:
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Venue: Barking Learning Centre, Barking Town Square, Barking.
Date: 8th July 2015
Time: 10:00 – 15:00
Potentially a new rehab worker will be employed by Islington
Council.
30th July – Shaftsbury Avenue audio described show.
19th July audio described show in Holland Park
National Eye Health Week 21st – 27th September 2015.
Can transfer CDs on to MP3 and Jaws with the RNIB. Ask Mike
Brace for more details.
Ollie welcomes comments on documents on salt and diet. Please
make comment to paragraphs as numbers.
15 new listeners to Talking News Islington.
Through the new Islington events calendar mail out, there were
three new members to a clinic session and identified two people
who needed a CVI.
Islington held a London Fire Brigade in June event which was well
attended and there are future events planned in the borough.
Andrew Hutchings is leaving Hackney Council Sensory Team.
7th July, the local authority will know their budget for the year.
Inform Infosound of all events taking place in London. Email at:
info@infosound.org.uk
End of Document
Next Meeting: 11th DEC 2015