Slide 1: Ensuring support: Certification and Registration of children and young people with vision impairment

Findings from study for RNIB carried out by Dr Tammy Boyce

Sue Keil

Research Officer

RNIB

Slide 2: Overview

  • Background and research questions
  • Method
  • Key findings
  • Recommendation

Slide 3: Background and research questions

Slide 4: Introduction

  • Certification and Registration processes for children and young people

Same processes, same barriers for CYP as for adults?

  • Pathways to support for children and parents

Early specialist support essential – risk of poor developmental outcomes across a range of indicators

  • Project in England but findings have relevance to Scotland as well

Slide 5: Purpose of Certificate of Vision Impairment (CVI)

  • Reliable route for person sight impaired (SI) or severely sight impaired (SSI) to be brought to attention of social care

CVI as referral for social care assessment

Registration with local authority

  • CVIs provide epidemiological data
  • Registration figures provide local data for service planning

Slide 6: Different route for CYP?

  • A key professional in support for CYP with VI is the qualified teacher for children with vision impairment (QTVI)
  • Where does the QTVI fit into the Certification and Registration process?
  • What benefits does registration offer CYP and their parents?

Slide 7: Method

Slide 8: Method

  • Telephone interviews in March – July 2014 with:

Health professionals in hospitals in 5 areas in England

Education and social care professionals in 8 local authorities in England

Parents of CYP registered as SI/SSI from across the whole of England

Slide 9

Hospital Staff / Education / Social Services / Parents
12 Consultant Ophthalmologists (4 without paediatric specialism) / 7 QTVI / 6 Managers / -26 parents with 28 children
3 ECLOs / 1 Manager / 5 Rehabilitation Workers / -7 CYP with complex needs
1 Optometrist / 3 Administrators / -18 diagnosed under age 1, 10 certified under age 1
5 Administrators / 1 social worker / -Ethnicity: 26 white, 2 Asian
6 Orthoptists / -12 girls, 16 boys
2 Nurses
Total: 29 / Total: 8 / Total: 15 / Total 26

Slide 10: Key findings

Slide 11: Key findings

  • Not all eligible CYP are certified
  • CVI process highly inconsistent across England
  • Inconsistent practice for CYP with VI and additional complex needs
  • Different practice between paediatric and non-paediatric ophthalmologists
  • Under-use of ECLOs and other intermediary roles

Slide 12: Key findings

  • Lack of information for parents at time of diagnosis
  • Delays in referral for specialist support
  • Support often dependent on formal diagnosis and offer of CVI
  • Inconsistencies in social services support for CYP
  • Not all eligible CYP are registered

Slide 13: Key findings

  • QTVI was the non-medical professional most highly valued by parents
  • Parents who received support from social services valued this greatly
  • Registration offered financial and practical benefits

Slide 14: Barriers to certification

  • Interpretation of DoH guidelines

More flexible attitudes/functional definition of VI from ophthalmologists with experience of CYP

  • Time taken to complete CVI

Use of intermediaries reduces the burden

  • Delays in formal diagnosis of VI

Delayed maturation; complex needs

But this shouldn’t delay information provision and referral for support

Slide 15: Interpretation of DoH guidelines

‘If they don’t fit in the criteria, than I don’t offer.’ (Oph1)

‘I tend to be rather flexible with interpreting the guidelines. I don’t think visual acuity is the best way of doing it in children. For instance, children with nystagmus might have better vision than 6/18 but they obviously have visual problems in terms of tracking and visual perception. Same with some of the milder forms of cerebral VI where their visual acuity can be good but they are confronted with a real world where they are overloaded with visual information and they really struggle. I tend to adopt a more functional approach to it. Based on the fact that acuity areguidelines rather than strict legal definitions.’ (Oph7)

Slide 16: Time taken to complete CVI

‘The ophthalmologist has to do it all himself or use orthoptists. In a busy overbooked clinic - there’s a disincentive to certify and that’s maybe part of it...’ (Oph5)

Slide 17: Use of intermediaries can reduce time completing CVI

  • Seven of the 12 ophthalmologists completed the CVI themselves
  • 5 stated they had help from an intermediary role (e.g. ECLO/information and advice worker) which appeared to reduce the time to complete the CVI
  • Two areas acknowledged that doctors might overlook certification in a busy clinic so they included nurses and orthoptists into their systems to ensure all eligible patients were offered certification

Slide 18: Use of intermediaries can reduce time completing CVI

‘…Patients get a quality service because of (intermediary nurse, ECLO roles); the real key argument is they are pivotal to giving a high quality service. But they do save time... in the sense they don’t keep coming back to clinic. (Oph5)

Slide 19: Delays in formal diagnosis

‘I very rarely certify them on the first visit. Unless they are older kids and they come from other ophthalmology centres that have confirmation of poor vision and with complex general health issues…For delayed visual maturation I don’t certify on first visit. It is such a complex area.’ (Oph9)

Slide 20: Children with complex needs

  • Diagnosis more difficult and takes longer
  • Some ophthalmologists noted difficulties in getting referrals to ophthalmology for CYP with complex needs
  • Multi-disciplinary team working can improve the number of referrals to ophthalmology

Slide 21

‘For us the problem is getting them seen by somebody from the ophthalmic team: that is the only reason why they get missed… It’s difficult, we point out and say every child should be referred, every child with complex needs should have an eye assessment, that is all we can say. And we say that quite regularly.’ (Oph1)

‘Many of our children come from multi-disciplinary teams where we supply staff to check visionfor these children.’ (Oph6)

Slide 22: Delays in diagnosis: information and support is still essential

‘(Ophthalmologist) said to me he hoped (child’s vision) would be good enough not to certify but actually at that point maybe we should’ve been put in touch with somebody. Because (son) had to start all of these tactile skills very late on…Looking back I should’ve been a bit more ‘shouldn’t we not certify him anyway?’ I think at the time it was almost like we were following instructions…I think we should’ve been offered something sooner, but it’s easy to say that in retrospect but actually he was by then two and half years and we had no idea and not a clue then what to do with this child who was now blind.’ (Par17)

Slide 23: Parent information needs – before and during certification

  • An explanation about certification and registration
  • Information on parenting a child with VI
  • Sources of practical help

Slide 24: Information about Certification and Registration

They didn’t explain anything at all. We left with a piece of A4 paper which had the various signatures on it, a copy of it, yellow card came later. We didn’t know if it would or wouldn’t go to other people or whether it would or wouldn’t lead to services or anything at all. We had absolutely no idea whatsoever.’ (Par13)

‘I think when they actually do the certification (when) you get the Certificate, it would be nice to get more detail of what you’re entitled to, written down. Like a leaflet or something. A lot of the times when you’re in all these appointments, there’s a lot of talk, talk, talk. Things can go a little over your head because there’s a lot of information to take in at one time.’ (Par20)

Slide 25: Parenting information and support

‘I said can I have some help with [my] daughter, access parenting groups and they said there’s nothing we can do for you …First and foremost nobody has given me training on how to parent a VI child… I’m accessing and looking all the time but that would be my main thing. You have to find another parent that’s the only way really.’ (Par12)

Slide 26: Sources of practical help

(ECLO) would sit in on the appointments that we had…she was a really nice lady, nice bedside manner, the information they first gave us, it was really helpful and it was nice to know someone was…We would’ve felt really isolated and not had a clue basically. I don’t really know what we would’ve done.’ (Par22)

Slide 27

‘(QTVI provides) parenting skills, … working with the level of vision he had, to really work with it and enhance it as much…I think weprobably would’ve just thought he’s blind, that’s it. Whereas QTVI explained we need to work with the vision he has to make sure that his brain keeps working, thinking there’s still something there...We’ve done such a lot of work. So much of the work with him is with his vision, because he has CP as well. It’s massively affecting because one thing is impacted on the other. Any kind of vision we can enhance for him will make a massive difference for his life. We’ve had amazing support here, it’s been unbelievable.' (Par26)

Slide 28: Specialist and non-specialist centres

  • Ophthalmologists without a paediatric specialism and who see CYP rarely appear less likely to understood referral pathways for children or the importance of early referral
  • They may not understand the need to refer babies to the education VI service for support from a QTVI
  • Consultants working in Tertiary Centres stated parents often arrived at their hospitals looking for support as well as a second opinion

Slide 29

’On a personal level (paediatric ophthalmologist) had a completely different attitude and children’s needs for support and not just from an eye health point of view but just from the bigger picture as well. Making sure (son) had support in every aspect of his life and that just made such a difference…Although (son) already certified, it was his outlook and attitude that we’d never experienced before. I think on reflection it made us realise the difference that you get between a general and a paediatric consultant.’ (Par24)

Slide 30: Some further benefits of intermediary roles

  • Information, advice and support service staff, ECLOs, specialist nurses, orthoptists, family support workers could provide:

Practical and emotional support to parents

Information and guidance

Ensured referral to VI and other specialist teams

Improved patient experiences

  • However referring parents to intermediaries was not consistent but a subjective decision by clinicians

Slide 31: Variable support from social care

  • Some areas offered no support other than contact letter and registration card
  • Those parent who did receive social care support valued this greatly. Support included:

Respite care

Re-housing

Support from a social worker

Slide 32: Benefits of registration

  • Not all LAs maintained their children’s register, yet parents whose children were registered valued it highly. Benefits included:

Financial benefits such as DLA

Evidence of need, e.g. where child does not appear VI

Extra ‘points’ needed to secure a care package

Slide 33: Some examples of effective practice

  • Referral forms to directly refer from health to education
  • Recognised pathway to support for CYP not eligible for CVI
  • Joint meetings between health, education and social services

Slide 34: Recommendations

Slide 35

Diagram demonstrating the journey someone goes through from finding out they have a severe visual impairment to the support they receive from ECLOs:

  • Ophthalmologist confirms first indication of severe vision impairment

Confirmation of diagnosis by ophthalmologist

Ophthalmologist refers to ECLO or equivalent

  • ECLO refers to local authority VI team for support and social care where appropriate
  • Where eligible, ophthalmologist initiates certification and refers to ECLO
  • ECLO processes certification and refers to social services for registration and support

Slide 36: Recommendations

  • Ensure all eligible CYP are offered certification and registration
  • All babies and children referred to LA education VI services as soon as VI identified
  • Encourage joint working
  • Consistency in offering information to parents

Slide 37

Contact details: