Time the NHS came clean

Tick tock: More people are waiting too long for NHS autism diagnosis. Picture: Rodolfo Barreto

The number of adults in England waiting far longer than they should for autism assessment has increased by almost 70 per cent in the past year.

The figures were released last week by NHS England, but it’s taken me until now to get my head round them.

As a former personal finance journalist, I consider myself fairly numerate. However, the NHS’s ‘interactive dashboard’ with its mix of coded categories, dropdown menus filled with acronyms, and array of graphs and timescales nearly melted by brain.

Eventually, after more than a little swearing, this is what I worked out:

On 1 June, of 50,610 over 18s waiting for NHS autism diagnosis, only 2,906 (less than 6 per cent) were given an appointment within the 13-week target and 5,835 were offered one after more than 13 weeks. The remaining 41,869 were still without appointments.

In other words, a total of 47,704 people were waiting too long to find out this vital information about themselves.

Twelve months earlier, with 35,981 adults awaiting diagnosis, 3,184 (around 9 per cent) received a first appointment within 13 weeks. A further 8,890 were eventually given a date and 23,907 still didn’t have one, meaning 32,797 missed the target.

In the Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust area, where I live, the situation is even more shocking.

On 1 June, of 4,485 adults with an open referral, just 50 were seen within the 13-week target (1 per cent), 475 were given an appointment after that and 3,960 were still waiting.

A year before, there were 2,475 adults with open referrals. A hundred were seen within target (4 per cent), 935 got a first appointment after a longer wait and 1,440 were left in limbo.

Of course, the huge jump in numbers seeking diagnosis is putting services under strain, but that doesn’t mean people should have to wait indefinitely. It’s up to the NHS to adapt.

Sadly, from the way the figures are presented, it seems as if it has opted for a (far cheaper) policy of concealment instead.

And there’s something else the NHS doesn’t want anyone to know. If you’re registered with a GP in England, it isn’t necessary to wait months – or, as in some areas, between two and four years – for assessment.

Under right-to-choose (RTC) rules – contrary to what many GPs will tell you – when an NHS diagnosis can’t be provided within 13 weeks, patients have a legal right to be referred for private assessment free of charge.

For information on how to use this pathway, see: https://theautisticwoman.co.uk/diagnosis.