Monday, September 7, 2009

PCT apologises for delays over autism diagnosis

THE dad of an autistic boy has criticised Swindon Primary Care Trust for the time it took to diagnose his three-year-old son.

Iain Counsel was finally told his son was autistic in June – almost two years after he first appealed to Swindon PCT to assess three-year-old Scott for signs of the condition.

Caroline Fowles, chief executive of Swindon PCT, has apologised to the family.

Responding to a letter Mr Counsel sent in January this year, chief executive of Swindon PCT Caroline Fowles apologised for a catalogue of delays between appointments.

In her letter, Ms Fowles said: “I would like to apologise that your experience of the service, both in terms of time delay and then engagement, was not satisfactory and that this added to your anxieties in wanting to achieve the best for Scott.”

Mr Counsel, 37, of Langford Grove, Old Walcot, claimed that delays over the diagnosis has robbed him of two years of vital developmental treatment. He said: “As far as I’m concerned they have robbed my son of his first words.

“With a diagnosis and subsequent treatment I have no doubt we would have seen even small signs in communication from Scott by now. Instead he’s a four-year-old who talks in grunts and screams.”

Mr Counsel started to suspect something was not right with Scott when, at 20 months, he still had not taken his first steps or formed his first word.

“I just noticed he wasn’t developing half as quickly as his peers,” he said. “While other children were saying ‘mamma’ and ‘dadda’, Scott was communicating through noises.”

Mr Counsel waited five months for an appointment with Scott’s paediatrician. The doctor revealed suspicions in her notes that Scott had autism at her first meeting with the family on December 18, 2007, but had not shared them with his concerned parents.

Mr Counsel said: “It is disgusting. As a parent you would sooner have bad news than no news at all and as far as I am concerned it was the doctor’s duty to keep us informed.”

Mr Counsel said he is also furious that Scott’s doctor had discussed his condition with a receptionist, inviting her to make her own comments.

In a paragraph written by Scott’s doctor, she said: “The receptionist reported that Scott was on the go the whole time, with his parent running round after him to try and keep tabs on him.

“He was into everything and explored the room. He came round behind the receptionist’s desk and sat on the floor next to her and as she was talking to him, looked up at her.”

Mr Counsel said he was incensed by the inclusion of the observations in his son’s medical notes. He said: “Is she a doctor? Is she a autism specialist or a child psychologist? No.

“So why the hell are her observations included in my son’s medical history.

In March this year, Scott was given a Sadler Assessment, a process designed to monitor a child for signs of autism. His anxious parents had their suspicions confirmed on June 26 – almost two years after they first flagged up their worries.

Mr Counsel now hopes to meet Ms Fowles to raise wider concerns. He claims that since Scott was diagnosed with autism, the PCT has offered no support or advice regarding potential treatment.

Mr Counsel is now awaiting confirmation for a date to meet Ms Fowles.

Caroline Fowles, chief executive of Swindon Primary Care Trust, said: “The health and well being of our patients is our key focus, and we take all concerns from service users very seriously and conduct thorough investigations.

“In this instance, however, we have apologised to the family that the appropriate care and support for their son and the delay it took to receive an appointment was unacceptable.

“We also recognise there is learning for a number of our professionals involved. We have built this into a forward programme and we are committed to an improvement plan to ensure we learn from this experience.

“We have met with the family on a number of occasions to explore their concerns about their son’s care and the PCT needs to examine these further.

“PCT staff continue to work alongside their other professionals to ensure the right level of support for Scott and this will main our prime focus.”

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