SEN0501

Written evidence submitted by Nystagmus Network

Introduction

The Nystagmus Network is a registered charity in England and Wales supporting people living with nystagmus, a complex, incurable eye condition resulting in lifelong impaired vision, which cannot be rectified by glasses or contact lenses. This report presents our findings and recommendations to the Select Committee Inquiry on Special Educational Needs and Disabilities (SEND) 2025.

Our Beneficiaries

Most of the people we support daily are parents and carers of children and young people within educational settings. They frequently seek our advice on a wide range of matters, from obtaining SEND support for their child to receiving specific guidance on Education, Health and Care Plans (EHCPs).

Challenges Faced by Parents and Carers

We have recorded a significant lack of awareness among parents regarding the support available to their children in schools. This gap in knowledge often results in children not receiving the support they need to access their learning, falling behind their expected levels of progress or, in some severe cases, becoming at risk of turning into school refusers. Regrettably, many parents reach out to us for help only after their children have already begun to struggle academically or no support has been offered at school.

Services Provided by the Nystagmus Network

Information and Support Line

We provide an information and support line and answer enquiries by email and on social media. Our Facebook page, which has nearly 15,000 followers, and our Facebook group for parents, which boasts nearly 4,000 members, serve as significant resources for disseminating vital information and providing support. In 2024 we supported 796 individuals of which the majority were parents with education-related enquiries.

Website Resources

Our website serves as the primary portal for our support and information services. In 2024 2,803 people downloaded our digital information guides. These resources include information for parents on supporting a child with nystagmus during the early years and educational phases, as well as guides for teachers and other school staff on supporting a child with nystagmus in the classroom.

Events and Workshops

We also organise regular in-person and online events, workshops and get togethers for parents and carers. Education support and EHCPs are consistently among our most frequently asked questions. Additionally, we deliver awareness-raising training sessions on the impact of nystagmus for schools, local authorities and sensory support teams. When funding permits, our 'Parent Power' workshops, conducted in collaboration with legally trained specialists from another charity, have proven to be very popular with and beneficial for our beneficiaries.

Our evidence

In January 2025 we conducted an online survey of parents and carers of children with nystagmus to obtain an up-to-date picture. There were 55 respondents. The results are summarised below.

Statistics

Of the 55 respondents, 27 (49.1%) had children in early years settings, 15 (27.3%) in secondary school, 5 (9.1%) at college, 5 (9.1%) in early years settings and 3 (5.5%) are home schooled.

Support for Children and Young People with SEND

When asked whether they agreed that the current SEND system is working well, unsurprisingly almost 25% strongly disagreed; no one strongly agreed, though just over 25% somewhat agreed. Please see results below.

0 = strongly disagree              5 = strongly agree

Support for Children and Young People with SEND - EHCPs

Asked whether their child had an EHCP in place, 28 (50.9%) said yes, 21 (38.2%) said no and 6 (10.9%) were somewhere in the application process.

When asked whether the EHCP application process was straightforward over 50% of respondents strongly disagreed.

0 = strongly disagree              5 = strongly agree

Solutions to improving the EHCP process

Based on our survey responses, the EHCP process requires significant improvements across several areas to better serve children with vision impairment. Notably, some respondents were unaware of an EHCP, highlighting a need for increased awareness.

1. Streamlining and reducing delays: respondents emphasised the need to reduce processing times to meet the statutory 20-week timeframe, simplify application forms and decrease the professionals’ evidence needed to focus on evidence from medical experts, vision impairment experts, teachers and parents.
2. Improving communication: clearer guidelines, examples of well-written EHCPs and enhanced communication between services and parents are crucial. Free information sessions and accessible resources should be provided to parents.
3. Enhancing parental involvement: parents need more support in navigating the process and their concerns and insights to be given greater consideration in decision-making.
4. Improving assessment criteria: the eligibility criteria should be reconsidered, especially for children with visual impairments. Blanket disbarring from EHCP provision for certain eye conditions seen in some local authorities should end. This would reduce appeals.
5. Enhancing accountability: local authorities should adhere to legal timeframes and representatives should be present at annual reviews. A system ensuring fairness across postcodes is needed.
6. Improving professional understanding: more training for teachers and staff on specific conditions is required. Decision-makers should have direct experience with the child.
7. Proactive support and early intervention: support should be implemented proactively, for example potentially starting the EHCP process before mainstream education entry.
8. Improving appeal and review processes: the appeal process should be simplified to provide better support for parents. A more efficient system for responding to annual review feedback is needed. 

By addressing these areas, the EHCP process could become more efficient, transparent and supportive, leading to better outcomes for children and their families. 

Support

Finally, we asked how well supported parents had felt during the crucial transition stages in their child’s education, when moving from early years to primary school or from primary to secondary school. Once again there was a wide disparity in experience.

0 = not at all              5 = highly supported

Current and Future Model of SEND Provision - QTVIs

47 (85.5%) of respondents said their child was supported by a Qualified Teacher of Visually Impaired children (QTVI). 8 (14.5%) were not.

For the Nystagmus Network connecting a family with their QTVI is our number one priority when it comes to support in the early years and at school. Early assessments, advice and signposting as well as relationship-building with the child and the family make a big difference to outcomes later on.

Published reports show a year-on-year increase in caseload for QTVIs against a backdrop of cuts in funding, vacant or deleted posts, as well as significant proportions of children with impaired vision failing to meet their expected levels of attainment. The QTVI resource is vital in assessing the learning support needs of visually impaired children and advising nursery and school staff how to ensure they can access their learning and thrive at school.

The Nystagmus Network staff team members have personal and professional experience of working with a particular Local Authority Sensory Service. For decades now this team has been exemplary in its service delivery for schools, families and their children. We understand that, because they are highly respected in the field, they are called on to provide training for other Local Authority teams and would heartily recommend that a super-league of outstanding teams be set up and deployed in training across the country.

QTVIs are an overstretched body of experts working hard and well to the best of their capacity to support visually impaired children and the teachers working with them. They make termly or more frequent school visits when they can, but are often limited by local funding and capacity pressures to less frequent reviews of the children in their care.

Current and Future Model of SEND Provision - Teachers

Our respondents reported very variable awareness of nystagmus and its impact on learning among teaching staff. Once again it is clear that standardised training in this area would make a big difference both for teachers’ confidence levels and professional skills as well as for many children, driving up standards of achievement instead of allowing them to fall below expected levels.

0 = strongly disagree              5 = strongly agree

Solutions for increasing school staff’s understanding of and support for students with vision impairment

Feedback from parents highlights several critical issues in improving the teaching staff’s understanding of nystagmus and vision impairment. It should also be mentioned that two of the respondents chose to home-school their children as they felt their needs could not be met in a mainstream educational setting:

1. Lack of consistent teacher training: mandatory training for teachers when a nystagmus diagnosis is disclosed would plug gaps in teachers’ knowledge and help them with resources to support students with nystagmus effectively.
2. Variability in QTVI support: while QTVIs are praised, their visits are often infrequent due to staffing issues and caseloads impacting consistent support for students. The solution is to ensure there are sufficient qualified staff in these roles.
3. Complex nature of nystagmus: nystagmus is a variable condition affected by factors like time of day, stress, tiredness and illness. Teacher training should include the wider impact of nystagmus on the health and wellbeing beyond vision, affecting sensory processing and causing fatigue.
4. Inconsistent implementation of accommodations: suggestions from QTVIs are often slowly implemented or inconsistently followed. Adapting print materials and using assistive technology like iPads are challenging areas. Funding needs to be in place to supply equipment and pay for additional staff time.
5. Communication challenges: improved communication between schools, teachers, parents and QTVIs is necessary for consistent support. Assessment meetings should be in everyone’s diary.
6. Awareness of associated challenges: there's limited understanding of the broader impacts of nystagmus, including sensory overwhelm and social-emotional effects. Again, this can be addressed in training.
7. Innovative training approaches: experiential approaches to teacher training, such as simulating visual impairments, can enhance understanding.
8. Inconsistent support across educational settings: consistency of support levels is needed between primary and secondary schools and different geographical areas.

In summary, recommendations for improvement include:

• Enhanced mandatory training for school staff, offering online training modules and experiential training methods so that teachers can experience how a young person with vision impairment sees the world.
• Increased QTVI involvement
• Improved communication strategies
• Consistent implementation of accommodations
• Holistic understanding of nystagmus
• Timely and consistent access to assistive technology
• Regular evaluation and feedback
• Cross-condition awareness
• Tailored support for different educational stages

Addressing these areas can significantly improve support for children with nystagmus, ensuring a more inclusive and effective learning environment.

How to ensure all schools provide good quality SEND support

Parents emphasised challenges in SEND support within schools but also offered a range of recommendations for improvement. Key issues raised include inconsistent support, lack of training, communication gaps and insufficient funding.

Recommendations:

1. Enhanced training: implement mandatory, robust training for teachers and staff, focusing on physical disabilities like visual impairments alongside neurodiversity 
2. Dedicated SEND leadership: ensure every school has a dedicated SEND lead/qualified SENDCo, separate from other roles rather than an add-on, to provide focused attention on SEND needs. 
3. Improved communication: establish regular meetings between parents, teachers, and SEND staff. Create efficient communication channels to respond in a timely way to parents' concerns.
4. Parental involvement: actively seek parental input and involve them in decision-making processes to prevent issues before they arise. 
5. Monitoring and accountability: conduct regular reviews by the SEND team and implement annual checks on school provisions to ensure effective resource utilisation. 
6. Increased funding: allocate more funds to train and hire additional support staff, addressing the growing number of children with SEND.
7. Resource enhancement: provide adequate technology and resources to support children with visual impairments and other SEND needs. 
8. Holistic support: incorporate additional services like Occupational Therapy and Speech and Language Therapy to address comprehensive needs. 
9. Cultural shift: foster an inclusive school environment that values all children, regardless of abilities and prioritises mental health and well-being 
10.                   Specialised expertise: ensure consistent access to specialists like QTVIs for tailored support.

Implementing these recommendations could create a more effective and supportive environment for children with SEND, address current system gaps and promote inclusive education. The focus on training, communication and resource allocation underscores the need for a systemic approach to improving school SEND support.

There is clearly lots of ground for improvements here and our respondents’ recommendations can be summarised as follows:

Key Issues and Recommendations

Disparity in Service Levels

From our perspective, there is a marked disparity in the levels of service, assessment criteria and outcomes for children across different local authorities. This inconsistency results in unequal opportunities for children with nystagmus and other SEND requirements.

Funding Shortfalls

There is also an evident lack of funding for SEND services, which further exacerbates the challenges faced by children with nystagmus. Adequate funding is crucial to ensure that all children, regardless of their location, receive the support they need and are legally entitled to, to achieve their academic potential.

Improving Awareness and Training

With 2.4 in 1,000 of the general population living with nystagmus and nystagmus being the most commonly seen form of visual impairment in school aged children, it is essential to implement training programmes for teachers and school staff to equip them with the knowledge and skills necessary to effectively support children with nystagmus. The charity does not have the capacity or resources to reach all schools or local authority teams.

Standardising Assessment Criteria

We propose the standardisation of assessment criteria across local authorities to ensure a uniform approach to identifying and addressing the needs of children with SEND. This measure would help mitigate the current disparities and create a more equitable support system.

Conclusion

The Nystagmus Network is unwavering in its commitment to supporting children and young people with nystagmus and their families. We believe that by addressing the key issues highlighted in this report and implementing our recommendations, significant improvements can be made in the support and outcomes for children with SEND. We appreciate the opportunity to contribute to the Select Committee Inquiry on SEND 2025 and look forward to collaborating to create a more inclusive and supportive educational environment for all children.

With thanks to the 55 parents and carers who completed our survey.

January 2025