Holbeach charity warns families of children with ADHD and autism face 42-week for help in Lincolnshire

Families are being left to struggle without medical help as our creaking health services are unable to cope with the rising numbers of children with special educational needs, according to a concerned charity.

Little Miracles is helping a staggering 1,000 families in the South Holland area alone - with the number of children in need likely to be higher - and says it is working hard to fill the gap left by the authorities across Lincolnshire.

Children with ADHD (attention deficit hyperactivity disorder) face a 42-week wait to see a consultant for their first appointment in Lincolnshire after being referred by a GP while children with autism are discharged from the health service after being diagnosed and given little support, says South Holland charity branch lead Liz Batterham.

Liz says there are simply not enough consultants or schools to help deal with the ‘amazing’ scale of children who need additional support for conditions such as this.

Lincolnshire Integrated Care Board, which is responsible for commissioning health services, has confirmed that it has seen a rise in the number of ADHD and autism - which has ‘placed pressure’ on its services.

Liz is calling for the authorities to work with the charity, which is based in Holbeach, in order to help more families.

She said: “Everything is a long battle for families. With hidden disabilities, people don’t see the battle which is going on. We are not making excuses for bad behaviour - no-one can see the fight behind the scenes.

“I think there is a massive demand for things to be improved. We are seeing more coming forward with ADHD and autism.”

ADHD is a condition which affects behaviour with people showing an ongoing pattern of inattention along with hyperactivity. It can also interfere with people’s ability to function and develop.

A research study of 10,438 children between the ages of five and 15 found that 3.62% of boys and 0.85% of girls had the condition, according to the ADHD website.

Liz says that medical teams will not see children under the age of six - which leaves families without anywhere to turn to help with challenging behaviours in younger children.

She said: “I think it has a knock-on effect and makes things worse. More and more children are not getting the help they need while parents are struggling. We try to do our best while they are waiting to be seen.”

“A lot of the time families feel like they are on their own and no-one understands them. They don’t know what to do to deal with the behaviours.”

The Covid lockdowns along with more of a national spotlight being placed on these conditions thanks to celebrities such as Patrick McGuinness - who shared the story of his three children who have autism in a documentary - are among the reasons for the rise, feels Liz.

Liz said: “The support needs to be recognised. We need Lincolnshire County Council to work with us so we can fill in the gaps as much as we can help until people get seen. We need more funding to make families lives better and make people feel like they have support.

“We can apply for funding but it is a bidding war and you don’t always win.”

Little Miracles has been working to fill the gap by getting in contact with local schools to share the services they can offer - which ranges from counselling to online courses to help with the behaviours.

The charity can also help families to apply for an Education, Health and Care Plan (EHCP), which aims to identify what educational, health and social needs the child has and what additional support is needed. Families should be told within 16 weeks by the local authority if a plan is going to made.

Liz is eager to work with local schools to raise the profile of the charity and what support it can offer to families.

She said: “We have people that can help families fill in the forms.

“They have to know we are there to help access the support.”

Liz said it takes a long time to process the assessments before they are seen and these are made up of three forms.

“Once you get an appointment you have to wait for the next step and with an autism diagnosis, there is no ongoing support.

“If you have an autism diagnosis you are discharged. Sometimes you can get medication to help a child sleep.

“Some people think that you get a diagnosis and you will get answers but you leave with even less that before you went in.

“There should be more support.”

She’s also delivered a message to the Government: “Do more, so much more.

“There are not enough consultants and not enough schools. None of the services acknowledge that more children are coming forward. There’s no increase in funding to come with it.”

A spokesman for the ICB has recognised that there is a waiting list for families to access these services.

He said: “We have noticed an increase in referrals for assessments for both ADHD and autism in recent years and that has placed pressure on our existing services to keep pace with the increased demand.

“We do have a waiting list, we recognise the issue and we are doing our best to address this and to offer timely assessment for all children and young people with suspected neuro diverse conditions.

“In Lincolnshire we do offer a range of support to children with emotional and psychological distress, and their families, and these services can be found on our partner’s website and on the Lincolnshire County Council website. An offer of support is based on need and not diagnosis, and we would always encourage a family to discuss their concerns with the appropriate educational professional and/or their local GP practice team.”

What do you think? Let us know your views in the comments below…