'Anger' as service for SEND children cut

Parents have said the axing of a dedicated team which helps their children with learning disabilities is like losing a "ray of light" in a system that "doesn't work".

The Bassetlaw Children's Learning Disability Service, in north Nottinghamshire, offered support in areas such as sleep, diet and behaviour for children and young people with moderate to severe learning disabilities.

Nottingham and Nottinghamshire Integrated Care Board (ICB) which will end the service at the end of March, said it could not justify the cost, it duplicated other help and it was not available in the rest of the county.

Lee, one of the parents who uses the service, told the BBC it had been a "massive" help in a system he felt he had to constantly fight.

Lee said his five-year-old son Max, who has a severe developmental delay, among other health conditions, had been using the service for more than a year.

The 36-year-old said: "Where Max might have struggled with something or needed that extra bit of support and we could essentially run to our learning disability nurse (and say) we need this help, what do you suggest for this?

"And she's got an answer for virtually everything and if she didn't, she would find that answer every single time."

Lee said Max's nurse visits at home and in school to check on him, as a familiar face he can trust, and has helped with his poor sleep, diet and with his school, including his education, health and care plan (EHCP).

For example he said, with his nurse's help, Max has begun to use words, when they had thought he might stay non-verbal.

He said: "Having the community learning disability nurses felt - even though it was probably so small to other people - so big for our battlefield.

"This one little ray of light that we had... that little light at the end of the tunnel thinking, these guys have got our backs, these guys are there to help us.

"Then all of a sudden it's just snatched away from you and you're like, now where do we turn?

"Investing in children like Max earlier... could prove useful going forward.

"I think [cutting it] is very, very short-sighted."

He said when he asked what would be replacing it, he was sent a link to a page listing about 15 different services, which he would have to navigate.

"Now that pressure's on us," he added.

Carla's son Samuel, 21, who has ADHD, Tourette syndrome, autism and a learning disability, has used the team since he was seven.

If it had not been cut, it would have been available to him until he was 25.

Carla, 52, believes he would not have made it through school to his current place at a specialist college without the team, as his nurse helped choose the right placement and helped with his ECHP.

"It's made our lives so much easier, so much better and full of things that I didn't actually think that we'd be able to do and that he would achieve," she said.

"She's another limb for a parent with a child that has an intellectual disability.

"Many times I've sat and cried and said to our learning disability nurse, I don't know what to do, but she's been there.

"That's not going to happen now."

Carla believes, instead of being cut, the service, which is made up of two learning disability nurses and a support worker, should be rolled out across the county to help other families.

The ICB, which made the decision to cut it, said 49 children and young people accepted referrals between April 2023 and December 2024.

They described this as a "very small" number, and said the move would save £107,000 a year.

Maria Principe, executive director of commissioning at the ICB, said: "We are sorry that Bassetlaw families will be disappointed with the closure of this service but we must ensure that we spend public money fairly and reduce duplication of services.

"Bassetlaw is the only area with this service, so the changes will make the offer more consistent across Nottingham and Nottinghamshire.

"Alternative services are available to support families with behavioural, sleep, continence and social support and families will be helped to transition to these."

A spokesman for the Department for Health and Social Care said decisions about local services were made by local teams.

It also said it was working to "transform" outcomes for children and young people with its SEND reforms, published last month.

He added: "The government is backing the NHS with record funding, including for children's and community services, and we expect that investment to be used to deliver safe, joined‑up care locally.

"Everyone with a learning disability deserves the right support to lead a fulfilling life and we will improve care by strengthening community support, enhancing annual health checks, and rolling out training for NHS staff."

But Lee said he was worried about the impact the end of this service will have on his son.

"In this short amount of time that we've had the team, the improvements we've seen are phenomenal and we know a lot of that is down to their support.

"So to put him back in a situation where he may regress, his speech may disappear, his behaviour may become more challenging... that's the biggest fear for us," he said.

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