NOTES OF MEETING

CHILDREN AND YOUNG PEOPLE WITH A VISION IMPAIRMENT (CYPVI)

Held on 16th May 2007

1.ATTENDEES AND APOLOGIES

In Attendance:

Mike Brace / VISION 2020 UK
John Ravenscroft / VisKids, Scotland
Mary Bairstow / VISION 2020 UK
Nicola Crews / RNIB CYMRU
Megan Barley / VIEW
Libby Halford / CHECT
Alison Salt / MoorfieldsEyeHospital
John Ellery / Action for Blind People
Sue Keil / RNIB
Elizabeth Cleary / RNIB
Megan Barley / VIEW

Apologies:

Isabelle Hart / Gt Ormond Street Hospital
Juliette Carter / CHECT
Eileen Boothroyd / Sense
Wendy Sainsbury / NBCS
Isabelle Hart / GOSH
Alistair Fielder / RCOphth
Carolyn Fullard / NBCS
Pat Beech / RNIB
Liz Farrell / RNIB
Nathalie Freeman / Coats Disease Support Group
Steve ? / VICTAR
Michael Clarke / Paediatrics

2.Minutes of previous Meeting

These were agreed.

3.Matters Arising

All items on main agenda.

4.Work Plan for the Group

John introduced this item. Given the numerous issues facing children and young people with a vision impairment across the UK, it was important that the Group were able to focus on specific pieces of work and perhaps set a task of completing one area of focus before moving on to the next. After some discussion and acceptance of this point, John then gave a presentation as to why the focus should be “establishing a pathway of intervention for children with vision impairment in the UK”. He then gave a presentation which used primarily the medical model of pathway development, but it was agreed that this could then be adapted for each of the four home countries and also the particular groupings of other professionals that would need to be involved in each of those countries.

The CVISTA model which John demonstrated had been developed by Dr. Margot Campbell and is used in Tayside in Scotland. Dr Campbell is a Community Paediatrician and has established a clear analysis that focuses on the child with vision impairment and identified two pathways

  • Pathway for children with vision impairment but no other disabilities
  • Pathway for children with vision impairment and dual/multiple disabilities

In these two pathways it is important to note that the main clinical lead was the paediatrician with other key professionals being specified as part of the core planning group.

It was thought that this model might actually exist in certain areas of England but Members of the Group were asked to find out information re different aspect of the process and how it was operating in their area and also provide examples of good practice elsewhere.

Mike Brace/John Ravenscroft undertook to raise this issue with Mike Clarke (Chairman of the RCOphth Paediatric Sub Group) and Mike Brace would ask for some discussion of this issue at the Paediatric group’s next meeting on 12th July.

Kay and Megan would consult with VIEW Members as to what involvement they had in such structures and also, if one was to be developed, what their involvement might be and what effect this system would have in their area.

Alison Salt also undertook to consult with colleagues re linkage between paediatric based lead services and the involvement of paediatric ophthalmologists - does this already work, i.e. what are the links between a lead clinician such as the paediatrician in managing the whole case, especially if a child has not got other disabilities?It was stressed at the meeting that early intervention by the age of three is critical and this must be reflected in any pathway analysis.

John estimated from the work in Scotland, that 80% of all children known to VISKIDS had either acquired or was born with a visual impairment by three years of age.

It was recommended that the notion of a VISKIDS England model which could also provide the database/information capacity

should be resurrected with some urgency, as basic information in England was scant.

It was agreed that the above item should be the major focus at the next meeting.

5.Date of Next Meeting

2:00pm on 26th Septemberat St. Dunstans 12 Harcourt Street, London, W1H - nearest tube Edgware Road on Circle and Hammersmith lines direct from Kings Cross or Euston Square.

Lunch can be arranged so please let Mike Brace know if you wish lunch booked.