Steph Jones’ youngest son, has severe learning difficulties and has never been to his specialist Normacot school because Stoke-on-Trent Council had not laid on any transport
A cancer survivor has quit her NHS job to care for her five-year-old son after hospital and council delays.
Steph Jones has criticised marathon waiting times for an autism assessment at the Royal Stoke University Hospital.
Carter Birks, her youngest son, has severe learning difficulties and has never been to his specialist Normacot school because Stoke-on-Trent Council has not laid on any transport.
Now the authority has arranged to provide transport from and apologised for its own delays.
Steph told StokeonTrentLive : “His sleeping pattern is everywhere. He needs structure in his life and at the moment he hasn’t got that.
“His meal times have to be on time. He is hitting out and staying awake all night. He has no school structure.
“Carter gets anxious all the time regarding this. I’ve had to finish my job to care for him full-time because I’d got nobody to have him in the day which then plays a massive part in financial problems.
“I’m totally depressed. I suffer from anxiety and am on anti-depressants. I’ve got bills coming on top of me like there’s no tomorrow and I don’t know where the money is going to come from.
“It’s 12 months just to be assessed and then it could take another 12 months for the outcome.
“They sent me a letter saying ‘As you are aware Carter has been referred to our service for an autism spectrum disorder assessment.
‘The referral has been forwarded to the specialist team and you will receive an update from them once the information has been reviewed. Our present waiting times are 52 to 55 weeks but this might change if we receive a high demand in referrals’.”
Steph added: “The waiting time is disgusting. With this new variant of Covid it’s going to take even longer.
“I’m concerned because he needs to be diagnosed sooner rather than later so we can help him. He can’t talk, which is a big problem.
“He is getting worse as every day goes on and we are not getting any support. It’s just a lot of sadness, depression and anxiety right now. There are so many mixed emotions.
“You can pay for an autistic test but I think the cheapest one is £1,500 and we haven’t got that money.
“I’d like an explanation about why it’s taken that long, although I understand it’s Covid. It’s not just for me. There are people out there who are on their own with no family support and this just isn’t good enough.”
Steph has also called on the council to provide transport to get Carter to and from his school.
She added: “He was supposed to have started his special school in September. But there has been no transport so me and a number of mums can’t get our children to school.
“Unfortunately, I’ve had to finish my job. I was working for the NHS but had to leave because I’d got nobody to have him. With autistic children they are very regimental so his behaviour is getting worse.
“I’ve been to Stoke-on-Trent South MP Jack Brereton regarding this and he has contacted the transport for me.
“When children go to a special school they have transport put in place to take them to and from school. That has not happened so Carter has not been in school since September.
“It isn’t our fault that he has to go to a special school – and I don’t drive and I’m just getting over cancer. It’s impossible for me to take him out in this cold weather and walk him there because he can’t walk, he is in a pushchair.
“I feel like I’ve not been listened to at all. I hope it gets sorted because I’m at my wits’ end.”
Chief Nurse Ann-Marie Riley said: “We are very sorry to hear of Ms Jones and her son’s situation. It is always our aim to deliver the highest standards of care possible and in a timely manner.
“We would like to apologise to patients if they have experienced a delay in their treatment as a result of the significant demand Covid-19 has put on NHS services.
“We take any complaint or concerns raised by patients or their families very seriously and we would encourage Ms Jones to speak to the Patient Advice and Liaison Team who can provide support.”
A council spokesman said: “We have been working closely with Ms Jones over a number of weeks to look into the situation with Carter, who has recently turned five, and we are pleased to confirm that transport has been arranged to take Carter to school from Monday 6 December.
“As a council, like many others up and down the country, we are faced with a nationwide shortage of transport provision for council services, including for taking children with additional needs to school.”