Specialist Children’s Services
Children’s Visual Impairment Services
Greater Glasgow and Clyde
Annual Report
2012 - 2013
1. Introduction
This is the fifth report following the introduction of services developed as a result of the multiagency plan to consistently and effectively address the needs of children with a visual impairment ( VI ) in Greater Glasgow and Clyde following the national review of community eyecare services. Services and developments are monitored by the steering group which has representation from all six local authorities, acute and community health services and the voluntary agencies.
This report summarises activity and progress made across the Board area and within each local authority in the identified key areas of: care pathways; datacollection and multiagency review; and service provision. Previous reports have documented positive patient feedback from service developments ( joint functional vision clinics , low vision aid clinic redesign , introduction of services from specialist nurse ) and this year particular focus is on habilitation services ( appendix 1 )and also the provision of information through a website.
2.Integrated care pathways
A central referral pathway from all eye departments across GG&CNHSB is used to refer children to appropriate visual services timeously. This system allows for faster referral from eye departments to community services and for basic initial information to be sent along with consent for sharing information.
3. Data collection and Multi-agency Review
a)Data system
Datacollection is ongoing and currently the service holds consent for sharing information between services for 318 children from GG&C and 36 from other areas. There is information held on 48 other children who have had involvement through multiagency meetings or joint clinics but for whom a signed consent form for sharing has not been completed. The responsibility of gaining formal consent is shared across agencies and there is a need for renewed efforts to ensure completion when children are seen
Table 1. Children with VI specific consent for information sharing documented
2008 / 2009/10 / 2010/11 / 2011/12 / 2012/13Glasgow / 69 / 83 / 125 / 143 / 161
East Dunbartonshire / 9 / 10 / 24 / 23 / 23
West Dunbartonshire / 12 / 7 / 10 / 14 / 18
East Renfrewshire / 13 / 24 / 31 / 33 / 30
Renfrewshire / 30 / 39 / 40 / 52 / 55
Inverclyde / 15 / 24 / 30 / 30 / 28
Total / 148 / 187 / 260 / 295 / 318
Information on children notified from other health boards and is passed by our service.
A basic database has been developed to store this information and it is anticipated that this will be fully populated by end August 2013. This will allow gaps in consent completion to be identified and also allow identification of children due for transition who may require a review of needs. It is hoped that this will also aid in national developments in VI services by providing more accurate population figures.
b)Multiagency review
Visual Impairment Review Groups (VIRGs)continue to meet regularly in each local authority area according to an annual schedule and produce individual VI specialist advisory reports for children to support their overall care plan. The groups advise professionals, identify gaps and duplications in services and report them to relevant service managers in order to effect change for individuals and improve services. These groups are also responsible for updating service information for their area. There are difficulties in some areas with the capacity of Local Authorities to provide representation which is of concern.
Table 2. No of multiagency care plans produced
2009/10 / 2010/11 / 2011/12 / 2012/13Glasgow / 26 / 26 / 35 / 34
East Dunbartonshire / 6 / 8 / 6 / 9
West Dunbartonshire / 4 / 2 / 6 / 8
East Renfrewshire / 7 / 9 / 8 / 7
Renfrewshire / 11 / 14 / 11 / 14
Inverclyde / 6 / 7 / 8 / 8
Total / 60 / 66 / 74 / 80
Issues identified as gaps / difficulties within services:
( individual issues not identified within Renfrewshire, Inverclyde and West Dunbartonshire due to process not being used rather than no incidents/concerns raised )
GG&C wide / System issues
- Lack of child mobility and independence assessment and training ( habilitation ) – this is particularly acute in East Dunbartonshire and Inverclyde where services are not provided for children. Studies by RNIB Employment Services have identified lack of independence skills as a major barrier to employment of young people with VI . Local authority managers have been made aware of the concern . A Visibility project has offered limited input to selected children in some areas
- Lack of a social work representation on Visual Impairment Review Group due to long-term illness and retirement ( East Dunbartonshire, Glasgow )
Individual Issues
- Delay in minor adaptations to school buildings to allow independence ( resolved on raising concern with education management)
- Delay in provision of input from VI education service ( resolved on identification at VIRG )
- Delay in recommended referral for joint assessment being made ( resolved on identification at VIRG )
- Delay in OT assessment due to waiting lists ( child now seen )
- Lack of support for on-body signing ( raised, not yet resolved )
- Insufficient support planned for tactile learner compared with national recommendations (assurances given re increased support once raised with education manager )
- Failure of transfer of specific VI information on child moving between local authorities
- Lack of coordination in care between health and education ( need highlighted )
It is clear from VIRG representatives that individual VI professionals are now more aware of the broad needs of children with VI and are more likely to know about and proactively seek supports for them than prior to the introduction of this multiagency review system.
4. Service provision
a)Joint Functional Vision Assessment (FVA) Clinics
These clinics, run jointly between health and education,take place in the 6 LA areas and involve an orthoptist, optometrist,occupational therapist, VI Teachers and paediatrician. They are held outwith eye clinics , mainly in education or social work premises. Inone area the accommodation limits the number of patients able to be seen.Feedback from parents, young people and professionals continues to be positive. Within these clinics training is also provided to a wide range of professionals from all agencies, local authorities and health boards.
Table 3.Joint functional vision assessments
No of clinics / No of appts offered / No of patients attended2009/10 / 2010/11 / 2011/12 / 2012/13 / 2009/10 / 2010/11 / 2011/12 / 2012/13 / 2009/10 / 2010/11 / 2011/12 / 2012/13
Glasgow / 16 / 16 / 18 / 16 / 38 / 46 / 44 / 50 / 23 / 31 / 36 / 35
East Dunbartonshire / 3 / 3 / 3 / 3 / 6 / 7 / 7 / 6 / 6 / 6 / 6 / 6
West Dunbartonshire / 2 / 3 / 4 / 4 / 5 / 8 / 8 / 8 / 4 / 6 / 8 / 7
East Renfrewshire / 3 / 4 / 3 / 3 / 7 / 10 / 8 / 8 / 6 / 9 / 7 / 7
Renfrewshire / 5 / 4 / 5 / 5 / 10 / 9 / 10 / 10 / 10 / 7 / 10 / 10
Inverclyde / 3 / 3 / 3 / 3 / 6 / 8 / 6 / 6 / 5 / 8 / 5 / 4
Total / 32 / 33 / 36 / 31 / 72 / 88 / 83 / 88 / 54 / 67 / 72 / 69
Current waiting list : 32
At these clinics assessment for and provision of basic independence and low vision aids continues in order to reduce the need for multiple appointments for families and services.
b)Habilitation Training ( Child Mobility and Independent Living Skills )
We are delighted that 5 students sponsored through our funding have now been awarded their Graduate Diploma in Habilitation and Disabilities of Sight. This increases the pool of trained workers across the 6 LAs, including one from the voluntary sector, by more than 100%. Unfortunately, the situation remains that not all have had their contracts/roles adapted within their current employment to allow increased service delivery to children. 2 LAs remain without any service for children and further offers of funding for training have not been taken up.
Habilitation training remains a high priority for the group as lack of this affects individual’s social opportunities, employment prospects, educational opportunities and finances in addition to increasing the financial burden on the state.
Appendix 1 includes a narrative from one of the newly trained habilitation specialists on how the training allowed her to provide a service to children and from a young person on what provision of habilitation training has meant for him.
c)Early Intervention Nurse Specialist and Web-site
The main focus this year has been on supporting parents through working with Visibility within their Little Explorer , toddler groups ( 0-4yrs ). These groups allow the opportunity for families and children to meet and gain information and support from each other in addition to professionals. She has also worked closely with Visibility and parents on the setting up of the website , The website aims to help in directing parents to the most useful information ( identified by our parents and professionals ) and give practical information on toys etc and local service information. It has been funded through the GG&C Eyecare Review funding allocation and is operated through and monitored by Visibility on the Steering Groups behalf. It has been designed with parents and a significant amount of the content is provided and directed by them. It is hoped to hold a launch event in future and publicise the site more widely.
The nurse continues to provide rapid support to the parents/carers of newly diagnosed children at home, in hospital wards and at school. She also provides in some instances interaction training to families through videointeraction guidance. Some input is brief, involving phone contact only whilst other is long-term and ongoing dependent on the needs of the child and family.
Funding for this post at present remains fixed term and permanent appointment will continue to be sought with contract extensions in the short-term.
d)Mobility network
This network was created to provide peer support and continuing professional development for child habilitation workers throughout the West of Scotland with sponsorship from our GG&C group.It continues to meet and has agreed shared assessment protocols, paperwork and reporting formats across the West of Scotland. This is necessary as no agreed national or professional standards/protocols exist for work with children.Attendees are from Lanarkshire, Ayrshire and Argyll and Bute in addition to our six local authorities.
e)Low Vision Aids Service
The redesigned clinic service with child specific clinics attended by VI teachers continues to receive positive feedback.
f)Local Service Information Booklets
These have been produced for all areas and are held by the VI administrator. It is the responsibility of the members of each visual impairment review group to ensure that details are updated for their agency. These have been uploaded to the i-needs website.
5.Monitoring and Strategic Overview
The Children’s Visual Impairment Steering Groupwith representation from all local authorities and the voluntary agencies meets biannually. The purpose of this group is to : maintain progress, monitor effectiveness, promote interagency working and links , develop services, promote research and act as a local expert group for local and central government.
6, Key Successes and Future Developments
Key successes
- Training for 5 child habilitation specialists with provision of service from 3 at present
- Creation of the i-needs website
- Provision of mobility network to support practitioners
- Provision of support to parents through the VI specialist nurse.
- Increased joint working with parents and Visability
- Provision of joint clinics across all local authorities
- Provision of multiagency care plans for children within all local authorities
Future developments
- Continue to seek a means of sharing specialist equipment across LA boundaries
- Work with national managed clinical network ( VINCYP ) to improve services for children and young people with VI
- Continue to seek solutions for provision of habilitation services to children
Dr Katherine Spowart, Associate Specialist in Community Paediatrics and Clinical Lead Children’s Visual Impairment Services GGCNHSB
Appendix 1
Reflections on the impact of habilitation training
Child
This young person ‘A’ was assessed at a joint functional vision clinic . The findings were explained to him and information given to his habilitation specialist
A – It was found out that it is harder for me to see in the dark and I did not know that before this. They also told me that my vision is contracting – so that means that is harder for me to see out of the sides. These were the main things that they discovered. They also explained that my vision was getting worse as I got older.
Did anything change for you after this information was passed to the people who work with you in school and the habilitation services?
A – Since I had been told I could not see very well in the dark I started eating more carrots! But this has not made much difference so far. The habilitation worker was working with me already but she started seeing me more regularly. She had given me a cane to use walking to school, she taught me how to use the cane to go to and from school; she also taught me how to move around the school and how to get up and down the stairs safely. Just now I use a lift pass so I don’t really need access to the stairs too often.
In school I was given a laptop and a magnifying camera to use in my classes so it would be easier to copy work and see from distances. I also get out of class 5 minutes early to avoid the busy crowds in the hall.
Do you think the support that you receive from the habilitation specialist has been helpful?
A – YES because it has given me a good start to first year knowing what I need to improve. I find it easier to move about from location to location, in school and out of school, knowing what I need to do. I can imagine myself moving around much easier, using transport and things, but I will need to work harder at it if my vision doesn’t improve as I get older and if my vision does get worse the team and I might have to find a new helpful way instead of eating carrots.
Professional
As one of the first qualified Habilitation Workers from the Scottish Cohort of the Habilitation Studies Course, I feel that the course has been instrumental in developing my new found confidence in working with children and families affected by sight loss. Prior to gaining the qualification I was employed in Social Services as a Rehabilitation Worker for adults and children. However I did not have the skills or experience to work competently with children as my qualification was with visually impaired adults. I tried hard to get additional training even before the course I undertook became available and avoided working with children as much as possible for fear of doing the wrong thing. My belief was, and is, that the adult course does not equip you to work with children who have VI. You cannot just apply the same strategies for children as the wrong kind of input could be potentially damaging.
Since qualifying as a Habilitation Specialist I have gained confidence in supporting children and their families and regularly have approximately equal numbers of children and adults on my caseload. I now have the skills to accurately assess and plan successful programmes of independence training. I feel confident in offering advice to families, signposting them correctly to other services and knowing when to refer to other professionals such as physiotherapists for assessment or joint working for the benefit of the child. The big difference for me is that I now have an understanding of typical and atypical child development and how it is impacted by visual impairment. Without this knowledge it is impossible to correctly assess a young child’s needs.
The course also taught me to involve parents and other key people in reinforcing the child’s habilitation skills as previously I would try to do everything myself and this would actually delay the child’s progress. Another important part of the course for me was the module on working with professionals including Education as coming from a Social Care background it can be daunting going into schools and trying to build relationships with staff – all vital for the child. I also found the training on risk assessments a real eye opener as through ignorance I previously did not complete these formally . I now know how and when to complete this required process.
Since the course I now have more involvement with Health too as I regularly attend our authority’s Visual Impairment Review Group (VIRG) and contribute confidently in expressing the child’s needs and the input I can offer. Finally I have now run some VI events so that children with similar needs and abilities in different areas of my authority can get together with their peers while learning new skills and having fun. The feedback I have received from both the children and parents has been very positive and I hope to repeat this in the future. I would never have dreamed of this previously ! I feel my skills and confidence have developed immeasurably and I can now use this to the real benefit of young people with VI.
Appendix 2 – Reporting pathways
Glasgow
Education
John Butcher, Area Education and ASN Manager
Health
Jamie Redfern, General Manager of RoyalHospital for Sick Children
Stephen McLeod, General Manager of SCS
Jacquie Campbell, General Manager of Surgery and Anaesthetics, Acute Services for GGC
Social Work
Mike Burns , Head of Social Work Services, North-West
Ann-Marie Rafferty , Head of Social Work Services, North-East.
Sheena Morrison, Head of Social Work Services, South
East Dunbartonshire
Education
Gordon Currie, Head of Education
Health (as Glasgow plus)
Karen Murray, Director of East Dunbartonshire CHP
Mark Feinmann, Head of Children’s Specialist Services and Director of East CHP
Social Work
Tony Keough, Chief Social Work Officer
West Dunbartonshire
Education
Lynn Townsend, Head of Service
Healthand Social Work
Anne Ritchie, Head of Children’s Healthcare & Criminal Justice
East Renfrewshire
Education
John Wilson, Director of Education
Health (as Glasgow plus)
Kirsty Gilbert, service manager , east renfrewshire
Lee Urquhart, Acting Service Manager for SCS in South GlasgowCHP
Social Work
Safaa Baxter, Head of Children’s Services and Criminal Services
Tim Eltringham, Head of Health and Community Care
Renfrewshire
Education
Robert Naylor, Director of Education and Leisure Services
Health (as Glasgow plus)
Liz Daniels , Service manager for Specialist Children’s Services , Renfrewshire
Social Work
Peter MacLeod, Director of Social Work for Renfrewshire CHCP
Inverclyde
Education
Albert Henderson, Director of Education
Health (as Glasgow plus)
Fiona Houlihan ,Acting Children’s Service Manager
Social Work
Sharon McAlees, Head of Children’s Services and Criminal Justice
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