Mother paid for private autistic spectrum disorder diagnosis to avoid long wait

What happened

Ms T's daughter was referred to child and adolescent mental health services at the Trust in early summer 2013. An initial assessment identified that she needed a full autistic spectrum disorder diagnostic assessment.

Ms T understood the assessment would take place in autumn 2013 but, when autumn came, she found that the wait was about a year. Ms T was concerned that, without a diagnosis, her daughter and the rest of the family could not get the support they needed. She complained and asked the Trust to sort out the situation.

Ms T paid over £2,000 for a private assessment. Her daughter received an autistic spectrum disorder diagnosis in spring 2014. Ms T did not tell the Trust.

In early 2014 the Trust upheld Ms T's complaint and apologised for the length of the waiting time. It told her what it intended to do to address the problem.

The Trust recruited an additional member of staff to reduce the waiting time, but it did not tell Ms T about this. The Trust offered Ms T an initial assessment appointment earlier than she had been led to expect, but she turned it down because the private assessment was nearly complete by this stage.

Ms T complained to us. She wanted the Trust to pay the cost of the private assessment and to reduce the wait for other children.

What we found

Mrs T chose to pay for an assessment. The Trust was under no obligation to reimburse the cost of private treatment which it did not know about and did not agree to fund.

The waiting time was far longer than the three‑month wait specified in relevant guidelines from the National Institute for Health and Care Excellence.

The Trust should have been clearer in its communications. It should have told Ms T what the situation was from the start. It should have told her what it was doing internally and externally to reduce the wait. This would have enabled her to make a fully informed choice.

If both parties had communicated better, an alternative way forward might have been found which did not involve Ms T paying over £2,000.

Putting it right

At the time she chose to pay for private treatment, Ms T was not aware that there was any prospect of the wait being reduced. She was in a very difficult and distressing position. She was worried that the ongoing delay in getting help would have long‑term consequences for her daughter.

The Trust took reasonable steps internally to address the waiting time. It is also taking reasonable remedial action with partners and commissioners to address capacity issues in the system.

The Trust paid £500 to Ms T in recognition of the impact of its poor communication.