Paul wrote a letter to his local MP describing his feelings
Paul wrote a letter to his local MP describing his feelings

Mother of nine-year-old boy with autism and depression describes struggle for treatment in 'broken system'

'I want to help my son but I know I can’t do it on my own,' his mother said

Lizzie Dearden
Saturday 07 May 2016 17:05
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“When I wake up there’s this horrible feeling down inside me... I could just kill myself and I wouldn’t have to face today.”

Those are the words of nine-year-old Paul, who has been “failed” by local NHS provision for children’s mental health in Norfolk.

In a letter to health services, Paul wrote: “I normally say to myself you have to keep on going, I normally also say is it worth it, I could just kill myself, I wouldn’t have to face today.”

Paul wrote a letter to his local MP describing his feelings

He uses chewing gum, ear plugs and a cushion to “keep calm” at school, and also describes suffering from sleeping problems, for which he is taking a hormone supplement.

“I feel so tired,” he wrote. “At night going to sleep is horrible. I think it’s what death must feel like.”

Paul’s parents, who did not want their surname published, say paediatricians believe their son has a condition on the autism spectrum, but while facing a two-year wait for a diagnosis, his feelings of depression and anxiety have worsened.

He did not meet the threshold for treatment by the NHS children’s mental health service, Camhs, and was referred for temporary talking therapy with a local charity, which is shortly due to end.

Claire, Paul’s mother, said the weekly sessions are making a huge difference, but she is concerned about what will happen afterwards.

“He’s not being diagnosed [with autism or depression] because the system is broken,” she told The Independent.

“Children are being failed. There is no one helping them because no one wants to talk about children’s mental health.

“If he broke his arm you wouldn’t leave him, so why do we think that mental health is going to get better on its own?”

Claire, 40, said she and her husband have resorted to organising a private autism diagnosis, which will then have to be accepted by the NHS so Paul can receive extra help at school.

“A lot of people ask, ‘What has a nine-year-old got to be depressed about?’ But it’s real,” she added.

“I don’t want him to be depressed; we are not a depressed family, we work hard.”

Claire, who works full time in her own business, said Paul’s feelings of anxiety and depression are making it difficult to persuade him to go to school, or even leave the house.

Her local MP, Liberal Democrat Norman Lamb, met with local authorities about the case and has been campaigning for reform to children’s mental health services.

Norman Lamb said mental health provision in Norfolk is 'scandalous' (Liberal Democrat MP Norman Lamb, minister for care and support, addressing the party's spring conference in Liverpool on 15 March 2015)

Mr Lamb, who was responsible for the issue in the Coalition government, said families were suffering the consequences of a “postcode lottery”.

“The situation in Norfolk is scandalous,” Mr Lamb told The Independent. “To leave children and families in the lurch like this is just awful.

“This is a real-life challenge that the whole family is trying to confront in the best way they can.”

Mr Lamb, who has previously discussed his own son’s struggle with obsessive compulsive disorder, said there was “not nearly enough awareness” about children’s mental health in the UK.

As the minister for care and support, he led a taskforce that called for reforms, including increasing awareness among teachers and other professionals, as well as access to services.

Mr Lamb said that mental health spending only accounts for 0.7 per cent of the NHS budget – a figure he called “extraordinary”.

“It’s morally wrong, but it’s also economically stupid,” he added.

“If you don’t start work on prevention at a young age, you will reap the whirlwind later on.”

Reports suggest that awareness over adult mental health is rising, but most people do not look out for the same conditions in children

Estimates suggest that Paul’s case is far from rare, with the most recent large-scale study finding that more than 8,000 children suffer from severe depression in the UK.

Professor Gillian Leng, director of health and social care at Nice, said depression in children and the young is “more common than people might think” and can be particularly distressing for families.

A spokesperson for the Norfolk and Suffolk NHS Foundation Trust, which handles children’s mental health in Norfolk, said Paul fell out of its remit because autism is his “primary issue”.

The Norfolk Community Health and Care NHS Trust, which is responsible for autism spectrum disorders, has not yet responded to The Independent’s request for a comment.

In the meantime, Paul’s family continue their wait for treatment.

“I want to help my son, but I know I can’t do it on my own,” Claire said.

“He lies awake in bed saying, ‘Why isn’t anyone helping me?’ It’s really hard.”

Here is Paul's letter in full

Hello my name is Paul and this is a day in the life of me. When I wake up there’s this horrible feeling down inside me but I don’t know what it is. I normally say to myself you have to keep on going, I normally also say is it worth it.

I could just kill myself I wouldn’t have to face today. I feel so tired because I have sleeping problems (I take melotonin). At school I use my chewy gum, ear defenders and wobble cushion to keep calm.

My friend gets bullied a lot so I have to stop them since they are my ‘friends’. At night going to sleep is horrible. I think it’s what death must feel like. I normally fall asleep, at about 10 o’clock.

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