vincyp report 2017/2018 · purpose of sharing this report with individual local authorities and...
TRANSCRIPT
1
VINCYP REPORT 2017/2018
Information on Service Provision for Children with Visual Impairment
Local Authority: East Ayrshire
Health Board: Ayrshire & Arran
Central Contact: [email protected]
Contact: [email protected]
Website: www.vincyp.scot.nhs.uk
Date of First Issue: 9th November 2017
Visual Impairment Network for Children & Young People
2
Contents Introduction to VINCYP ........................................................................................................................... 3
Introduction to mapping ..................................................................................................................... 3
Report Format ..................................................................................................................................... 3
Expectations of Local Authorities and Health Boards ......................................................................... 4
VINCYP Standards, Quality Indicators and Self Evaluation Tool ......................................................... 4
Section 1: Population Served .................................................................................................................. 5
Section 2: Local Authority / Health Board Service Structure and Responsibility .................................... 6
Section 3: Eye Clinic ................................................................................................................................ 8
A: Clinic Type ....................................................................................................................................... 8
B: Who does what, when? .................................................................................................................. 8
C: Investigations/ Services .................................................................................................................. 9
D: Information ................................................................................................................................... 10
E: Referral On .................................................................................................................................... 10
Section 4: Central Referral Point / Coordination .................................................................................. 11
Section 5: Neurodisability / Paediatric Services ................................................................................... 11
Section 6: Education Service ................................................................................................................. 11
A: Communications ........................................................................................................................... 12
B: Qualifications ................................................................................................................................ 12
C: Equipment / Service provision ...................................................................................................... 13
Section 7: Habilitation Services ............................................................................................................. 13
A: Qualifications ................................................................................................................................ 14
B: Equipment ..................................................................................................................................... 14
Section 8: Emotional and Family Support, and Activities ..................................................................... 14
Section 9: Early Intervention ................................................................................................................. 15
Section 10: Joint Working and Integrated Services .............................................................................. 15
Conclusions and Actions ....................................................................................................................... 16
Reply Slip ............................................................................................................................................... 17
Appendix A Baseline VINCYP Pathway .................................................................................................. 18
Appendix B VINCYP Standards .............................................................................................................. 19
Appendix C VINCYP Quality Indicators .................................................................................................. 21
3
Introduction to VINCYP The Visual Impairment Network for Children and Young People (VINCYP) was designated in April 2014 and aims to improve the care for children and young people with a visual impairment across Scotland. VINCYP involves professionals working in health, education and social work, parents/carers of children and young people with a visual impairment and voluntary sector organisations.
More information can be found on the website: www.vincyp.scot.nhs.uk. VINCYP is commissioned through the National Network Management Service (NNMS) at NHS National Services Scotland. More information can be found here: http://www.mcns.scot.nhs.uk/types-of-network/national-networks-in-scotland/
Introduction to mapping Members of VINCYP are aware that there is inequity of service for children with visual impairment across Scotland. By mapping what services are available, VINCYP will be able to support organisations to target initiatives and interventions more effectively and share learning across Scotland.
The information was provided to us by your services between 2015 and 2016 and the purpose of sharing this report with individual Local Authorities and Health Boards is to ensure that the information you provided us with is correct. VINCYP acknowledges that some information may require updating because the mapping exercise took nearly two years to complete; and the information that was provided to us may have changed. Where no response was provided VINCYP have concluded, and therefore recorded, that there is no service.
VINCYP plans to send out a two-yearly update request after the initial correction.
Report Format This Report is based on the VINCYP Pathway of Care (Appendix A) and indicates the structure of services, what services are available to children, the qualifications of those providing services and access to services.
The purpose of this report is to help Local Authorities and Health Boards to identify areas for improvement or where there is overlap or duplication. VINCYP welcomes your timely and honest responses to this mapping exercise; any identified service gaps will be highlighted for future support by VINCYP.
You may wish to use this report as the basis for information to your service users.
4
Expectations of Local Authorities and Health Boards Representatives from all Local Authorities and Health Boards across Scotland are expected to do the following:
• Liaise with colleagues to confirm whether the information is accurate for your area by 29/03/2019
• OR provide us with contact details for someone who can do this in your area
VINCYP Standards, Quality Indicators and Self Evaluation Tool VINCYP agreed Standards for care which can be found in Appendix B. These were agreed and endorsed by the VINCYP Steering Group on behalf of all their representative organisations. Individual standards have been highlighted throughout the report in boxes in bold text.
The VINCYP Steering Group also agreed Quality Indicators, which can be found in Appendix C.
VINCYP provides a service self-evaluation tool which can be accessed on the VINCYP website: http://www.vincyp.scot.nhs.uk/self-evaluation/. This allows you to benchmark your services against the standards.
5
Section 1: Population Served The expectation is that there will be services named at each point in the VINCYP pathway in each area. The agreed standards are that services will be available to all children with a VI and the timescales are set out in terms of what services should seek to attain.
The VINCYP database was created as there was no reliable database nationally or locally of children with a VI, its cause and service provision for them. Most areas have been entering data since January 2017. With training having been rolled out during 2016, data is not complete at present. CAS information below is accurate as of February 2019.
The total number of children currently notified on CAS as having VI in Scotland is: 870
The number of children identified as having a VI within CAS, in this Health Board is: 62 The number of children identified as having a VI within CAS in this Local Authority is: 28 Existing data on the numbers of children with a VI is poor, but from this approximate numbers of expected children have been extrapolated to give some guide at present. Expected numbers use 3 per 1000 of child population for board and LA. The approximate numbers expected within this Health Board are estimated to be 199 The approximate numbers expected within this Local Authority are: 65
6
Section 2: Local Authority / Health Board Service Structure and Responsibility
Health:
• There is an orthoptist with an identified role for children with VI within the NHS Board.
• There is not an ophthalmologist with an identified role for children with VI.
• The ophthalmologist does not have time allocated to the role.
• There is not a paediatrician with an official remit for VI.
• There is not a paediatrician with an official remit for VI so no allocated sessions.
• There is not a paediatrician with an official remit for VI so no age range.
Local Authority:
• Education provide a VI teaching service.
In each department there is an ophthalmologist with an identified role for children / young people with VI.
In each Health Board there is a paediatrician with an identified role for
children and young people with VI.
Each local authority has a service for children with VI through which all children have an assessment of need by a qualified teacher of visual impairment within , at most, 4 weeks from the date the referral was sent out (8 weeks if covering school summer holidays).
Each local authority has a service for children with VI though which all children have an assessment of need by a Habilitation specialist, qualified to work with children, within 4 weeks of referral.
7
• There are 0.5 Full Time Equivalent Qualified Teachers of VI and 1.8 Teachers of VI undertaking qualification. In addition 1.4 Full Time Equivalent Support Assistants.
• Education East Ayrshire provide services to all children with a VI regardless of age, other disability or school placement.
• Education East Ayrshire do not have criteria in place for referrals but would assess and decide if appropriate to continue involvement.
• Habilitation is provided directly by the local authority by Health and Social Care Partnership (HSCP) East Ayrshire.
• Habilitation is provided in school, college, local community and at home.
• The number of staff providing Habilitation from social work is two full time individuals.
• The number of hours of Habilitation provided by social work per week is 70 hours.
• Mobility and orientation skills are provided to all children and young people with a VI including those with additional disability.
• Independent living skills are provided to all children and young people with a VI including those with additional disability.
• Input is provided as required on an ongoing basis.
8
Section 3: Eye Clinic
A: Clinic Type Children/young people should all be seen in dedicated eye clinics for children/young people. (Dedicated children’s eye clinics see patients 0-16 only or up to 18 if remaining in education).
• No ophthalmology clinics comply.
• No orthoptic clinics comply.
There should be a children’s / young people’s waiting area.
• No ophthalmology clinics comply.
• No orthoptic clinics comply.
B: Who does what, when?
• There is a specific orthoptist in the department who sees all children with VI.
• There are no specific ophthalmologists in the department who see children with VI.
• Community Paediatricians would link in with members of the eye clinic to explore Cerebral VI
• Orthoptists do not consider it their role to diagnose cerebral VI in isolation.
• Ophthalmologists do not consider it their role to diagnose cerebral VI in isolation.
• Orthoptists do not provide LVAs.
• Ophthalmologists do not provide LVAs.
Children are seen in a dedicated children’s / young person’s eye clinic (0-16 unless still at school).
Children have a dedicated child’s / young person’s waiting area.
The diagnosis of cerebral visual impairment should be made following the agreed national VINCYP guidance. For this, basic processing defects require a hospital eye team, higher processing defects require a community paediatrician in addition.
9
C: Investigations/ Services
The following are available:
To Orthoptist To Ophthalmology
On-site refraction by optometrist Yes Yes
Written information for patients Yes Yes
Counselling/support Yes Yes
Pathway for MRI n/a Yes
Pathway for OCT – cross sectional retina
n/a Yes
Pathway for OCT – retinal nerve fibre
n/a Yes
Pathway for ERG/ VEP n/a Yes
Genetics n/a Yes
LVA assessment/provision Yes Yes
Retinal photography n/a Yes
Paediatric fluorescein angiography
n/a Yes
Formal field testing n/a Yes
There is a clear pathway to access specialist assessment, investigations and support.
Written information is available to parents or young people at the time of identification of VI.
10
D: Information
• Letters are copied to families by paediatricians.
• Letters are not routinely copied to parents or young people by ophthalmologists.
• Letters are not routinely copied to parents of young people by orthoptists.
• There is a complaint procedure.
• There is no systematic feedback process in place exploring the satisfaction of the VI service.
E: Referral On The VINCYP pathway provides a template for referral to community services. It is recommended that children should be referred once they are identified as having a VI, regardless of whether a final diagnosis has been reached.
• In the past ophthalmology would register children and this would have generated BP1.
• Currently VINCYP registration is undertaken by orthoptists.
• Orthoptists refer all children with VI to community services.
• Children are referred to: Education and Habilitation.
• It is not clear whether all children seen by Ophthalmology are also referred to Orthoptics in a timely manner to allow VINCYP registration and referral, or whether this waits for investigations to be completed.
• For orthoptists there is a documented pathway to access functional visual assessment.
Letters should be copied to parents / young people.
There is a process in place to measure patient satisfaction.
11
Section 4: Central Referral Point / Coordination Within the VINCYP pathway, Appendix A, a central referral point is identified within each Health Board to ensure that referrals are directed correctly and quickly to community services from all agencies.
The central referral point for this health board and local authority is:
Rainbow House
Ayrshire Central Hospital
KA12 8SS
Email: [email protected]
There is a pathway to access community VI services from education, habilitation and community child health.
Section 5: Neurodisability / Paediatric Services • Children with wider neurodisability and VI are managed by their community
paediatric consultant holistically, who will coordinate with orthoptics and ophthalmology and ensures community services (QTVI and Orthoptics are in place).
• There is a paediatrician who offers consultation to colleagues in orthoptics, ophthalmology, general paediatrics and community paediatrics to provide/supplement neurodisability / development assessments with a focus more specifically geared to visual impairment and around routes of referral to Education/Habilitation.
• The venue for specific additional assessment/consultation is through the multidisciplinary clinic held in Rainbow House each month, including contributions from Community Paediatrics, Orthoptics, and colleagues from Education QTVI and Habilitation.
Section 6: Education Service
Each local authority has a service for children with VI through which all children have an assessment of need by a qualified teacher of visual impairment within, at most, 4 weeks from the date the referral was sent out (8 weeks if covering school summer holidays).
12
A qualified teacher is required to hold a specific approved qualification in VI teaching
• There is a specific education service for children with a VI.
(see VINCYP standards).
A: Communications Response time to referrals The response time target is initial contact
within 2 weeks and a visit within 4 weeks.
Following referral the teacher always responds to the referrer
Yes
Following referral the teacher always provides a written assessment
Yes
Following referral the teacher always provides recommendations/support plan
Yes
Following referral the teacher always meets the parent
Not face to face but makes contact by telephone
B: Qualifications Assessment are carried out by: Support is provided by: Fully Qualified VI Teacher Yes Yes – but depends on
level of need VI Unqualified teacher in team
No No
VI Unqualified but ASN qualified teacher
No Yes
Teacher undertaking VI qualification
Yes Yes
Pupil support assistant No Yes – but depends on level of need
• Two children require non-sighted methods of access to learning. • Braille is currently being taught and has been for past 10 years.
13
C: Equipment / Service provision The following are provided / available from education:
Technology for school (CCTV/ electronic magnifiers etc)
Yes
Technology for home No Social skills training No Peer support groups No Parent support No Counselling No Afterschool/ out of school activities specifically for children with a VI
No
Input to joint functional vision assessment with health
Yes
Input to multi-agency VI review group Yes Referral to LVA clinic No – signposting instead Referral to Habilitation service Yes Referral for joint functional vision assessment
Yes
Section 7: Habilitation Services
There is provision to some level of Habilitation service which is by the North East Sensory
A qualified habilitation specialist is required to meet the Mobility21 standards for work with children (see VINCYP standards).
• A Habilitation service is provided. In addition to habilitation assessment the service provides a holistic assessment that informs the links to be made with other colleagues
Links are made by Habilitation service to the following:
Paediatrician Yes Orthoptist Yes Optometrist Yes Ophthalmologist No VI Teacher Yes Physiotherapist Yes – if already known to physio Occupational Therapist Yes Speech and Language Therapist Yes – if already known to SLT Other Yes: Voluntary Organisations & Social Work
VI Teams
Each local authority has a service for children with VI though which all children have an assessment of need by a Habilitation specialist, qualified to work with children, within 4 weeks of referral.
14
A: Qualifications • Mobility and orientation skills are provided by workers who are qualified to work
with both adults and children.
• Independent living skills training is provided by workers who are qualified to work with both adults and children.
B: Equipment The following equipment is made available for children with VI:
Canes Yes Perkins Braillers No - Education Play equipment Yes –through
supported charitable application
Enlarged games Yes –through supported charitable application
Independent living aids Yes Technology (hardware/software) Yes –through
supported charitable application
Other Yes –task lighting
Section 8: Emotional and Family Support, and Activities The following services are provided:
Yes/No Provided by
Groups for children and young people with a VI Yes Visibility/RNIB
Groups for parents of children with a VI Yes Visibility/RNIB
Groups for children and young people with a VI, and their families
Yes Visibility/RNIB
Early intervention service (max 5 working days response rate)
Yes RNIB – IRISS project
Social and emotional support Yes All colleagues can contribute to this.
15
Visibility/RNIB
Benefits advice Yes Habilitation
Transition advice Yes All colleagues can contribute to this.
Technology training Yes Habilitation
Education
Third Sector:
-Visibility
-RNIB
-Call Scotland
Support to identify and access sport and leisure activities Yes Rehabilitation Officers
Third Sector
Section 9: Early Intervention
• Early support for children and families is not available from an early intervention service (max 5 working days response rate regardless of school holidays) but post diagnostic support is provided by QTVIs/Habilitation.
• There is no rapid access to community paediatric services for newly diagnosed children with a VI but there is a pathway for QTVI and Habilitation Officers to discuss any children under their care with the Paediatrician with a remit for VI.
Section 10: Joint Working and Integrated Services Integrated working is central to improving services and outcomes for children with VI. This is fundamental to the work of VINCYP as demonstrated by the VINCYP pathway.
There is a local interagency VI team Yes
There is a service within each Health Board which provides early intervention and family support on identification of VI.
16
There are regular meetings of VI interagency team Yes
There are leaflets / a website showing local VI services Yes
There is a joint functional vision assessment clinic Yes
Professionals within joint assessment clinic Community Paediatrician – Yes
Orthoptist – Yes
Occupational Therapist – On occasion
Habilitation Officer - Yes
Education QTVI – Yes
The diagnosis of cerebral visual impairment out with the eye clinic is made by:
Community Paediatrician (Generic) No
Community Paediatrician (VI Specialist) No
Ophthalmologist No
Combination of VI paediatrician and opthalmologist
Yes
Conclusions and Actions Many services which children and families receive are of a high standard, but there remain gaps in services and difficulties. In order that these can be addressed in the most efficient way and that learning occurs across services the first step is to identify these gaps by identifying what services are available. This report is the first step in the process.
• Please feedback any corrections to the information by 29/03/2019 in order that the report is as accurate as possible.
• We will then reissue the information to you every 2 years to check that the information we have is still accurate.
• Please contact us at other times with updates.
• This information is publically available through our website www.vincyp.scot.nhs.uk
Thank you for your help in providing this information.
17
Reply Slip
Amendments completed by (name) Carole Kerr
Job Title Principle Teacher
Service East Ayrshire Support Team
Date 27.6.18
Amendments completed by (name) Nuno Cordeiro
Job Title Consultant Paediatrician
Service Paediatrics
Date 24/10/18
18
Appendix A Baseline VINCYP Pathway
19
Appendix B VINCYP Standards Definitions/Clarification Derivation/linked documents
1. In each eye dept there is an ophthalmologist with an identified role for children/YP with VI.
RCOphth quality standards for children and young people.
2. In each HB there is a paediatrician with an identified role for children/YP with VI.
VIP Scotland Group
3. Children are seen in a dedicated children’s/YP eye clinic.
Applies to all children 0-16yrs and those up to 18 and still at school should also be seen in these clinics.
RCOphth quality standards for children and young people.
4. Children have a dedicated children’s/YP eye clinic waiting area.
Applies to all children 0-16yrs and those up to 18 and still at school.
RCOphth quality standards for children and young people.
5. Letters should be copied to parents/young people.
Exceptions are where it is felt this could be harmful. Includes all specialities.
RCOphth quality standards for children and young people. RCPCH.
6. There is a process in place to measure patient satisfaction.
Any level, type, or form of feedback at present.
RCOphth quality standards for children and young people.
7. Each local authority has a service for children with VI through which all children have an assessment of need by a QTVI within at most 4 weeks from the date of referral / request for assistance was sent out (if the period of referral spans the school summer holidays, this extends to 8 weeks).
A QTVI is defined as a qualified teacher holding either a post graduate degree or diploma in teaching children with visual impairment(this may be MEd/ BPhil/Postgraduate diploma from any recognised university)or has gained an award through completion, via a recognised route, of all competencies deemed suitable by the Scottish Sensory Centre.
Review of community eye care service. Vision 2020.
8. Each local authority has a service for children with VI through which all children have an assessment of need by a habilitation specialist, qualified to work with children, within 4 weeks of referral.
A qualified habilitation specialist is defined as one who meets the agreed Mobility21 Quality Standards for Provision of Habilitation Training (this may be a habilitation specialist, rehabilitation worker with additional training or significant experience with children, or mobility specialist with additional training). In very young children the assessment may be direct (face to face) or indirect in consultation with other
Review of community eye care service. Vision 2020.
20
professionals. 9. There is a clear
pathway to access specialist assessments, investigations and support (MRI, OCT, VEP/ERG, retinal photography, fluoroscein angiography, formal visual field, genetic counselling, LVA, functional vision assessment and community services).
RCOphth quality standards for children and young people.
10. Written information is given to parents/young people at the time of identification of VI.
Any form of written information is acceptable formal information sheets, web address etc.
RCOphth quality standards for children and young people.
11. There is a service within each HB which provides early intervention and family support on identification of VI.
This is defined as a service providing contact by a professional with experience in visual impairment and counselling for families within at most 5 working days of referral and should be available both in the community and in the hospital.
Review of Community Eye care Services, RCOphth quality standards for children and young people.
21
Appendix C VINCYP Quality Indicators Definition/Clarification Measurement
1. % of children seen in a dedicated children’s clinic
Child = 0-16yrs. It is not possible to reliably record if 16-18yrs olds are at school.
CAS
2. % of children, with VI who have had as assessment of need by a QTVI within 4 weeks of the referral/request for assistance being sent out (if the period of referral spans the school summer holiday, the % of children who have had an assessment of need within 8 weeks).
A QTVI is defined as a qualified teacher holding either a post graduate degree or diploma in teaching children with a visual impairment/this may be Med/BPhil/Postgraduate Diploma from any recognised university) or who has gained an award through completion, via a recognised route, of all competencies deemed suitable by the Scottish Sensory Centre. The interventions required should be identified and form part of the Child’s Plan (Children and Young Peoples Act Scotland 2014). Time of referral is from date of referral letter being sent out.
CAS Education services are required to notify referrer when this is complete.
3. % children with VI who have had an assessment of need by a qualified habilitation specialist within 4 weeks of the referral/request for assistance being sent out.
A qualified habilitation specialist is defined as one who meets the agreed Mobility21 Quality Standards for Provision of Habilitation Training (this may be a habilitation specialist, rehabilitation worker with additional training or significant experience with children, or mobility specialist). The interventions required should be identified and form part of the Child’s Plan (Children and Young Peoples Act Scotland 2014). Time referral is from date of
CAS Habilitation services are required to notify referrer when this is complete.
22
referral letter being sent out. 4. % of children less
than 2 years with VI and of those of any age with acute visual loss, referred to a multi-agency referral system/early intervention service within at most 2 working days of identification of visual loss.
Time referral is from clinic date. Children with acute visual loss require early intervention to provide practical strategies and emotional support. Early support is particularly important to the development of young children.
CAS
5. % of children with VI referred to a paediatric neurodisability team/community child health team within 3 weeks of identification.
Time of referral is clinic date. CAS
6. % of children having a VI interagency advisory report within 8 months of identification.
This should follow a similar model to CVISTA as recommended in the Community eye care review and recommendations should be incorporated into the Child’s Plan.
CAS Paediatricians who co-ordinate these groups should be responsible for notifying date if discussion.