Family told two-year wait for speech therapy

1 day ago

Leanne RinneSouth East, Sevenoaks

News image — Florence was first assessed for speech and language difficulties at the age of 3 but her family were told it was a two-year wait for diagnosis and therapy.

BBC, Leanne Rinne A young girl smiling in a striped purple jumper wearing glasses and holding to soft toys in her hands. She is sat in a kitchen. — Florence was first assessed for speech and language difficulties at the age of 3 but her family were told it was a two-year wait for diagnosis and therapy.

A mother whose daughter was born with a rare speech disorder says she had "no choice" but to quit her job to focus on getting her daughter the support she needed to learn how to talk.

Elizabeth, from Sevenoaks, first noticed Florence was struggling to move her lips and tongue when she was a baby and, by the age of two, she was still not making any sounds.

Elizabeth said: "For years I was telling professionals something was wrong. Finally Florence was assessed at the age of three but we were then told there would be a two-year wait for a diagnosis to begin therapy."

The Department of Heath and Social Care said they were investing £1.8 billion to put speech and language therapists into schools.

BBC, Leanne Rinne A mother and daughter sat smiling on a sofa. The mother has blonde hair and has her arm cuddled around her daughter who is wearing glasses and holding soft toys in her hands. — Florence's mother Elizabeth gave up her job to focus on getting her daughter the support she needed to learn how to talk

At the age of two Florence was referred to NHS Speech and Language Therapy services by her preschool, but she was not diagnosed with a speech disorder, Childhood Apraxia of Speech (CAS), until she was four.

CAS is a motor planning speech disorder that happens when the brain does not communicate properly with the muscles used for speech.

Elizabeth said her concerns were dismissed by professionals "again and again".

"I spoke to the health visitor and GPs multiple times but we were told she was a 'Covid baby' so that was why she wasn't talking.

"I was even told 'Einstein was a late talker and look how he turned out', but I knew it was more than a typical delay," she said.

Elizabeth said it was "stressful and frustrating" to be told by professionals that nothing was wrong and, at times, it made her question her own judgement.

"When we were told it was going to be a two-year wait for Florence to get a formal diagnosis to start the speech therapy she needed I knew we couldn't wait that long.

"I started writing emails, phoning people again and again asking why she couldn't be seen sooner when all the evidence suggested the sooner she was seen the better," she said.

Elizabeth Bull A small baby lying on a person's knees. The baby is in a white baby grow with one hand clenched and the baby's lips are tightly closed. — Florence showed signs as a baby that she had difficulty moving and opening her mouth

Elizabeth said she gave up her job so she could focus on being a "nuisance" to get Florence the diagnosis and therapy she needed.

She said: "I feel like a lot of my time with Florence, as a little one, was robbed because I was so concerned with getting her the help she needed.

"I was awake all night worrying what the future was going to hold, was she ever going talk, was she ever going to call me 'mummy'?"

Florence, now aged six, attends NHS speech therapy sessions twice a week, but Elizabeth said she worries that other families may not be able to "fight" like she did.

Elizabeth Bull A mother carrying a young child on her back. They are at the zoo and are both smiling. — Florence, now aged six, is able to talk and read after her mother fought to get her the speech therapy she needed

Statistics show there are more than two million children in the UK who experience speech and language challenges, the highest number recorded to date.

Elizabeth is now running the London Marathon to raise money and awareness of the charity Speech and Language UK that supports children with speech difficulties and their families.

Jane Harris, chief executive of Speech and Language UK, said: "Government has just announced a really big reform to the Special Educational Needs system and we want to make sure children with speech and language difficulties are at the forefront of that change.

"We think schools should have a tool that allows them to easily spot which children are struggling to talk and understand words before they start to teach them how to read, write and do maths."

She said there are ways to help "every single child to learn how to communicate".

"It may mean using visual language or using some form of technology, they just need the right tools that work for them," she said.

Elizabeth A young girl with a lilac unicorn dress looks at a camera smiling with her hands outstretched. She is in a field. It is a sunny day — Florence is learning to read and write at school and would like to be a teacher when she grows up.

A Department of Health and Social Care spokesperson said: "No family should be left watching their child struggle while waiting for the help they need."

It is investing £1.8 billion to put speech and language therapists and other specialists into schools to "catch problems earlier and give children the support they need".

"For the first time, we are also setting a national target to cut the longest waits for community health support," a spokesperson said.

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