RNIB Evidence & Service Impact

Notes of the Dementia and Sight Loss Interest Group meeting on 21 September 2010 – Arup Offices, London

Present / Action
Clive Evers (CE) – Alzheimer’s Society (AS) - Chair
Matthew Athey (MA) - RNIB
Sarah Buchanan (SB) – Thomas Pocklington Trust (TPT)
Pam Lacy (PL) – RNIB
Rebecca Rogers (RR) – Arup
Pam Turpin (PT) - Arup
Chris Smith (CS) – RNIB – minutes Secretary
Apologies – Lyndon Reardon
1.0 / Welcome and introductions
1.1 / PL and CS joined the meeting via telephone. CE welcomed everyone present.
2.0 / Conference update
2.1 / Delegate numbers
2.1.1 / RR had circulated a spreadsheet highlighting the 23 delegates that had accepted and 7 that had declined. Very positive response.
2.1.2 / The meeting agreed that the Priority 2 groups should now be contacted and a reminder sent to the Priority 1 contacts as some MP’s, for example, will just be returning to office. / RR
2.1.3 / Additional potential delegates were discussed. Check whether the College of Optometrists have been invited and the availability of Sonal Rughani. / RR
PL
2.1.4 / The programme content has now been completed. RR to re draft and circulate for comment. Time should be allowed for Q & A sessions. / RR
2.2 / Speaker arrangements
2.2.1 / The meeting discussed the speakers that had already confirmed their attendance, inc Agnes Houston, Graham Doggett (subject to health permitting), Prof David Croisdale-Appleby, Dr Graham Stokes, Dame Sally Greengross, Stephen Clarke, Penny Redwood, Prof Sube Bannerjee and PT. The 11.30 slot remains to be confirmed.
2.2.2 / CE to contact Paul Burstow and discuss a ministerial address. / CE
2.2.3 / The idea of an additional service user should be explored. CE/PL to liaise with Martina Leeven (Senior Counsellor – RNIB). The best day for ML would be a Wednesday. CE available till 10.30 on 22/9. / CE/PL
2.2.4 / The meeting agreed that the key speakers should receive a communication to confirm the time and determine the content of their respective sessions (with some guidance from the group) and to avoid any overlap and to request abstracts, biographies and the format for presentations. A final date should be included in the document for the receipt of information. It was generally thought that:-
·  Graham Stokes will discuss the Dementia issues for leadership, training and practitioners in the work place (carers and care home staff)
·  CE will discuss the session content for Prof David Croisdale-Appleby with AS colleagues but expected to be around the framework, competencies, qualifications and awards
CE agreed to draft a letter to both of the above.
SB to brief Sube and Dr Declan McKeefry/Dr Ruth Bartlett about the inclusion of TPT research
Penny Redwood will talk about assessments. / CE
SB
3.0 / Poster, stands and delegate packs
3.1 / Posters
3.1.1 / Andrew Queen (RNIB) is working on the poster content and there will be a poster display area.
3.1.2 / The group has received a request from Geoff Shayler to display a poster which was agreed. It was also agreed that there would probably be enough space for 6 posters. RR to check practicalities with the venue. / RR
3.2 / Stands
3.2.1 / Group members were asked to think about ‘manning the stands’ during the session breaks. It is expected that:-
·  RNIB - MA and Fran McSweeney will attend. PL and CS would be available as required. Stand material – LV Clinic materials, CS to liaise with AQ and Martin /Shervington re Falls Policy and use of Sim Specs
·  Arup – PT – Healthcare materials, Patients pathway
·  AS – 2 people – AS Society brochures, training materials and factsheets
·  TPT – 2 people – Research information / CS
3.3 / Delegate packs and badges
3.3.1 / It was agreed that we should produce at least 120 delegate packs using the clear wallet samples circulated by CS.
3.3.2 / Instead of using labels affixed to each pack frontage it was agreed that organisation logos and the D&SLIG message would be on a printed sheet inserted at the front of the pack contents. RR to produce a mock up. / RR
3.3.3 / The pack contents, in no particular order, was agreed as follows:-
·  Speaker biographies
·  Speaker presentations
·  Programme
·  Factsheets (TPT Research)
·  Living with Sight loss brochures (RNIB). CS to liaise with AQ
·  AS factsheets
·  Evaluation form (currently in draft)
·  Delegate list
·  Pens
·  Arup Healthcare Consultancy brochure
·  D&SLIG document / CS
3.3.4 / RR circulated a page of badge samples. Group agreed that the logos should be reduced in size. RR to reformat. / RR
4.0 / Finance update
4.1 / SB stated that the previous arrangements should still apply. RNIB and AS to pay fees to TPT. TPT to pay Arup. This avoids setting up 3 separate internal projects.
4.2 / PL advised that the RNIB contribution is in hand.
5.0 / Top Tips flyer
5.1 / The current version will be used at the forthcoming AS events and the SCA conference but not for the 1 Dec conference.
5.2 / AQ has designed a version in an FAQ format. MA and FM have both commented on the content. PL will follow up recent email correspondence and provide a progress report to the group. / PL
6.0 / Feedback from AS Workshops
6.1 / The 2 workshop sessions were very well received by the audience totalling 27 in number.
6.2 / The majority of people were hungry for general information about sight loss and the main eye conditions. Delegates included some carers and care workers and some with personal experiences.
6.3 / MA advised the group that he was not clear on the subject of hallucinations and how it is associated with Dementia. MA will update the presentation by mid October and include some of the other sight loss issues, for example, stroke, diabetes and glaucoma. / MA
6.4 / PT agreed to send the book details to the group which features 2 chapters on sight loss. / PT
6.4 / PL thanked MA for his time and input into delivering the sessions.
7.0 / Dementia Congress
7.1 / CE, SB and MA are attending the Congress.
7.2 / MA to complete the booking form, abstract and send to CS. The delegate place should be free - PL to send CS details. CS to liaise with MA regarding travel and accommodation. / CS
PL
CS
8.0 / Any other business
8.1 / Lord Ashley
8.1.1 / RR mentioned that she had received an enquiry from Lord Ashley and would like a response from the Group. Clive offered to brief him on questions he can raise questions in the house on the national strategies for Dementia and Sight Loss. PL has sent an enquiry through to Dan Scorer asking for RNIB's response. / CE
8.1.2 / CE agreed to draft questions for Nicola O'Brien (AS - APPG) and PL agreed to send these on to Dan. PL will then send the final questions to RR and circulate around the Group. / CE/PL
8.1.3 / PL advised that she will be on annual leave from 11 Oct for 2 weeks. Any documents that need to be forwarded should be with PL by 5th / 6th Oct.
8.2 / Fundraising
8.2.1 / A funding bid opportunity has arisen with the Will Charitable Trust for an amount of £20000. Completed bids have to be submitted in Jan 2011. PL agreed to contact RNIB Fundraising Dept. to check they are not already applying to this Trust. / PL
8.2.2 / PL mentioned that Philippa Simkiss at RNIB would like the Dementia and Sight Loss work to take the form of a more formal project. It was felt that some ideas and aims may be gained from the conference feedback and a debrief meeting could be arranged later on in Dec 10.
8.2.3 / It was agreed to hold a development meeting on 16 Nov. CS to look at room availability at Judd St and advise the group. / CS
8.2.4 / SB advised the group that TPT will be conducting some research into eye tests and spectacles. The work may be funded separately.
8.2.5 / PL advised that Sonal Rughani from RNIB had suggested some members of the Group having a meeting with Professor Francesca Cordeiro prior to the conference to talk about the work of the Group and how she could advise it. PL will arrange a meeting and let the Group know the venue/date. / PL
8.3 / Database
8.3.1 / CS had circulated a draft of the Person's Experience database prior to the meeting for discussion by the group.
8.3.2 / The group felt the format met the current requirement.
8.4 / Letter to Paul Burstow
8.4.1 / The group felt that correspondence to Paul Burstow should be signed by the CEO of each partner. MA to follow up with RNIB CEO Office in Judd St / MA
9.0 / Purpose and dates of next meetings
9.1 / 26 Oct (RNIB Judd St - 13.30 - 16.00) - 1 Dec Conference
9.2 / 16 Nov (RNIB Judd St - 13.30 - 16.00) - Group Development
There being no further business the meeting ended @ 15.15

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