Fighting for Jack: Kim Gurney’s BSL battle to support toddler son (BSL)

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Juliet England meets Kim Gurney.

Two-year-old Jack Gurney is profoundly deaf and needs to learn BSL – his mum Kim tells Limping Chicken of the ongoing struggle with her local council for funding and support. 

When Kim Gurney’s son Jack was born four weeks early at Surrey’s Frimley Park Hospital in December 2020, the run-up to the birth had hardly been stress-free. The 33-year-old from Bracknell, Berkshire, was sent home on antibiotics at 34 weeks, to try and make 36 weeks before delivery, during which time her waters were continuously breaking. When she went in to be induced having reached the 36-week point, her son was in foetal distress and delivered by emergency C-section with suspected sepsis.

So there was relief as well as, obviously, joy when Jack was finally born. And there was no concern when he failed his second newborn hearing test, having passed the first one. It’s not uncommon for premature babies to develop fluid build-up in the ear.

When Jack was two weeks old, he was seen at a different hospital, the Royal Surrey.

“It was lockdown, so we had to do the test without my husband Paul. I was alone with a male audiologist in a confined space for four hours, which made me feel uncomfortable. We were told Jack had a profound hearing loss with Auditory Neuropathy Spectrum Disorder (ANSD) and (later) with hypoplastic (thin) auditory nerves. Essentially, we were just given a leaflet from NDCS and sent on our way – on Christmas Eve.

“Because of the holiday shutdown, we ended up finding a private consultant at Great Ormond Street. He told us what we needed to do, including genetic testing to establish the cause of Jack’s deafness, and an MRI scan to look at the anatomy of his ears. I had to really fight for that.”

Jack’s care was moved from the Royal Surrey Hospital to the audiology team at the Royal Berkshire Hospital, Reading, where Jack was fitted with two hearing aids at the age of 10 months. But there was no response to sounds and, if anything his hearing worsened.

According to NDCS:

“Auditory neuropathy spectrum disorder (ANSD) is a relatively rare form of sensorineural deafness (deafness in the inner ear). It affects about one to two babies in every 10,000 born and occurs in about 1 in 10 children with sensorineural deafness. Sounds are received normally by the cochlea (inner ear) but become disrupted as they travel to the brain.”

For Jack, it means his hearing can fluctuate while the thin auditory nerves mean the signals of sound may not reach his brain.

While auditory brain stem implants are an option for the future, the current treatment is cochlear implants. Jack had two fitted in late August, and they were switched on around a month later.

“We don’t know how much help the implants will be yet, as the switch-on was so recent. Certainly, Jack needs access to speech and language – all he can say at the moment is ‘ma ma’. We firmly believe that what Jack needs help with at this stage is BSL, so that he can learn at the same rate as other children his age,” adds Gurney, who works for a local engineering firm as a company secretary. “Otherwise, when he goes to school he will just fall further behind and eventually feel excluded from society. It’s a false economy.”

Gurney currently takes Jack, who is in nursery in nearby Binfield two afternoons a week, to a private organisation called Auditory Verbal UK for speech and language therapy – roughly a two-hour round trip.

She has also started her son, now under the care of Evelina Children’s Hospital (part of St Thomas’s London) on BSL by paying for deaf tuition at home, and she tries to sign with him herself.

“Jack was not accepted for a crucial Education and Health Care Plan (ECHP) assesment. The nursery just paid for a basic online professional training and development course (costing all of £3!) for its staff. A few staff started it, but they won’t get any qualifications, or teaching from a proper tutor – it’s a basic course and simply not sufficient.

“When the council declined to assess him for eligibility for BSL help in nursery, one of the reasons given was his age. They said he was too young – but we can’t leave him with the implants and no access to language.

“He is the only deaf child in the nursery and the first deaf child there. There is a deaf teacher for him, but she sees Jack only sporadically. We believe he needs a decent number of hours with someone qualified to at least Level 3. A few basic signs won’t get him through this stage of his development. He needs constant immersion in language like all children his age.

“I am sure that a good part of the problem is because deafness is invisible. You would look at Jack and think he was fine and developing in the same way and at the same speed as a hearing child. So there needs to be far more awareness.

“Equally, there is far too much reliance on devices like implants, which may not help Jack as much as we’d like, although I hope he does recognise some sounds. And what happens if he is swimming, on the beach, having a bath or in bed, or if they’re broken? Or going through a developmental stage where he refuses to wear them? He needs to be able to communicate without them. Councils see the hearing devices as a ‘fix’ rather than a tool.

“I just want Jack and all deaf children to have equal rights.”

Gurney and her electrician husband have also written to their local MP about their son’s case.

A council representative recently agreed that Kim should give up her job and sell her home if she needed to teach him.

“I was really half-joking, saying ‘I suppose I should stop work and sell the house to help Jack’. But she agreed.

“I said that she wouldn’t feel that way if she had a deaf child herself, and she conceded that I was probably right. Like any other parent, I just want the best for my son.

“If he doesn’t have the support he needs now, his frustration levels will be extremely difficult to manage and social skills will suffer, ultimately affecting his mental health by the time he reaches school age.

“I believe the council is breaching the Equality Act and discriminating by placing it him at a significant disadvantage by not making reasonable adjustments.

“We’re having to fight every step of the way to get Jack the support he needs and it’s stressful and upsetting.”

Ian Noon, Chief Policy Advisor at the National Deaf Children’s Society, said:

“It’s unacceptable that some families face having to pay thousands of pounds to learn to communicate with their child. This is something we expect all local authorities to provide to families with deaf children.

“We know that language development is vitally important to children’s academic success, friendships, emotional wellbeing and career prospects. Whether they use spoken or sign language or both, every child has the right to communicate effectively with their family.

“We want the government to change the law so that all local authorities are required to provide support to families with deaf children to learn sign language if they would like to. We also want the government to make sure that all local authorities have the funding they need to be able to offer support to families.”

Read the NDCS position paper on support for families to learn sign language here.

Grainne Siggins, Executive Director: People, at Bracknell Forest Council, said: “We have been working with the Berkshire Sensory Consortium to support Jack in his early years setting. Jack is currently meeting all milestones for development, apart from communication, and this is being supported through weekly sessions with his teacher for the deaf at the nursery. This includes model play and signs alongside speech therapy (SALT) and support from his nursery. Jack’s teacher for the deaf reports that Jack is progressing well and some nursery staff are undertaking BSL training, which the council has offered to pay for.

“With regards to SEND input for Jack, an EHCP request has recently been declined due to Jack’s very young age and to allow time for the professionals to understand how his recently activated cochlear implants may impact his communication development and measure the level of input he may require.

“Further support and signposting has been offered to Jack’s family, such as free online courses including British Sign Language, and details of the weekly drop-in service at the child development centre. Our records show Jack’s parents have attended two sessions this year.

“A further assessment has been requested for Jack which is being progressed. We will continue to work with Jack and his parents to provide the most appropriate support.”