“We want ICBs to treat our children as a priority, not an afterthought”

OT  asked two charities that support families using the Special Schools Eye Care Service how vital the programme is to them

A young box in a checked shirt has glasses fitted by an optometrist in front of an Amsler chart

As the end of another school year approaches, a long-term plan for the Special Schools Eye Care Service (SSECS) seems no closer to fruition.

As confirmed to OT in May, contracts for the SSECS are in the process of being handed over to local Integrated Care Boards (ICBs) – but without confirmation of fees or a long-term service specification, this news isn’t likely to offer much reassurance to optometrists facilitating the service or the charities supporting families that rely on it.

Only 9% of children in special schools currently have access to the SSECS, despite children with special needs being 28 times more likely to have a sight problem than other children.

More than half (55%) of special needs children miss hospital eye clinic appointments that they have booked.

In bringing eye examinations and dispensing into environments that are safe and familiar, the SSECS is able to successfully manage the eye health needs of this particularly vulnerable group.

Sarah Coleman, health policy specialist at Mencap, emphasised the “amazing impact” the service has had on the children and families that the learning disability charity supports.

“Sadly, for many children and young people with a learning disability, the symptoms of undiagnosed issues with vision can be easily attributed to the person’s learning disability,” Coleman said.

“The teams have picked up so many children and young people who have never accessed an eye test or eye care before, and in turn many of those [children] have been experiencing issues with their sight.”

Coleman explained that the SSECS has been able to offer tailored support to help children find the right glasses, including specialist frames where needed. Children have also been supported in learning to wear their glasses comfortably.

Access to repairs and spares for when glasses get lost or broken, which is inevitable when children are new to wearing glasses, are also part of the service, Coleman said.

“Children in special schools have waited long enough already”

In June 2023, a £10 million commitment to roll the service out to 165,000 children in special schools from 2024–2025 was made by the then primary care minister, Neil O’Brien.

A consultation was carried out in autumn 2023, before contractors were told that the service would be handed over to ICBs from April 2024.

In May, the AOP predicted that an updated SSECS would see a 30% funding reduction based on the original commitment.

A year on from O’Brien’s statement, what impact might further delays to a wider service rollout have?

Amanda Elliot, health lead for Contact, a UK disability charity that supports families who are benefiting from the SSECS, said she would be “extremely concerned” at further delays, which would “leave more than 100,000 children in special schools without access to accessible eye tests.”

“Children in special schools have waited long enough already,” Elliot said.

She explained that Contact has worked with parents, carers, and learning disability charity, SeeAbility, which holds a contract to facilitate the SSECS for 3000 children in London, to produce eye care resources for thousands of families.

“We know those families will be sorely disappointed if the scheme is delayed or rolled out with reduced funding,” Elliot said.

She added: “If there is a delay, most children won’t be able to access alternative eye testing. High Street opticians are often too busy, noisy and inaccessible for autistic and learning-disabled children and young people, especially if they have sensory or behavioural needs.”

NHS England’s proof of concept report, published in November 2022, saw 75% of schools reporting that the service had made a significant improvement to the learning and behaviour of children who received this service, Elliot noted.

She added: “Not having access to glasses or the correct lenses when they need them will damage their emotional, social and behavioural development, their mental wellbeing, and their ability to learn.”

Coleman noted that uncorrected vision issues can “seriously impact on communication, ability to form relationships and general wellbeing, which may manifest as issues with behaviour, difficulties engaging with learning, and general poor wellbeing.”

“The reason for the service is that so many children and young people would simply not be able to manage to access eye care in a mainstream setting,” Coleman said.

She added: “Without access to the service, children and young people are not only missing out on eye care but are also likely to be missing key opportunities for development and experiencing serious negative impacts on their overall wellbeing.”

The reason for the service is that so many children and young people would simply not be able to manage to access eye care in a mainstream setting

Sarah Coleman, health policy specialist at Mencap

A message for the ICBs

Coleman wants the ICBs that are now in charge of the SSECS to know that “the impact of this service cannot be underestimated.”

“It is important to look at the immediate impacts – those children and young people who have been able to access an eye test, and those who have received some kind of tangible output, ie glasses or a specialist referral,” she said.

In the short-term, “we know that being able to see as clearly as possible will bring huge benefits to these children and young people, not only with their learning, but with communication and wellbeing overall.”

She added: “However, we think that the impacts of this programme will be much further reaching and the benefits for children and young people who have used the service will be felt across a person’s whole lifetime.”

Coleman wants ICBs, when considering the value of the service, to “consider what this could mean across many years, including the difference it could make to the level of independence someone is able to achieve.”

“It is vital to recognise that the difference this service has made so far has been down to the high quality and wrap-around care that's been provided,” she said. “We are concerned that moves to a new model of working, together with some cost-saving moves, could dilute this.”

Elliot emphasised the high quality of the service in its existing specification, as well as its future impact on health equality.

“When commissioning this service, we want ICBs to treat our children as a priority, not an afterthought,” she said. “Families want them to focus on the quality of the service – not just on quantity and securing the lowest price."

The service “is key to ensuring our children’s primary health care needs can be met,” Elliot said. “It is a big step in the direction of closing the health equality gap that so many disabled children experience.”

It is a big step in the direction of closing the health equality gap that so many disabled children experience

Amanda Elliot, health lead at Contact

If commissioned carefully, Elliot believes the service “will have a huge and positive impact on disabled children with undiagnosed sight needs – on their learning, their concentration, their behaviour, and their wellbeing.”

She noted that, even when learning disabled or autistic children are able to attend health appointments, their sight needs can often be missed because health professionals are “hyper-focused” on their learning disability or autism.

“Providing the service in special schools makes perfect sense: it takes the service to where children are every day, where they feel comfortable and relaxed, rather than forcing them to attend appointments in unfamiliar settings that are often challenging for them,” Elliot said.

Coleman added: “Schools and parents are gaining a much better understanding of eye health and how issues with vision may impact children and young people, and even those children and young people who have no issues with their vision now, may well benefit in the future when they need to see an optician as an adult and be more likely to be able to engage.

“We implore both NHS England and ICBs to ensure that the quality of care continues, in order to see the best outcomes for our children and young people and their families.”