‘Hidden waits’ protect Government’s mental health targets – with 675,000 not receiving full course of treatment Patients told i they were advised to cancel their referrals and pushed regularly to re-confirm at risk of dropping off list

The Government’s mental health treatment targets in England do not include 675,000 patients whose referrals ended without receiving a course of treatment.

Protecting the headline numbers has led to a perverse incentive for NHS staff, with patients telling i that they are being advised to cancel their referrals by staff and have sometimes had to repeatedly confirm their spot on waiting lists after waiting well beyond target wait times.

Referrals to the Improving Access to Psychological Therapies (IAPT) scheme are primarily for adults with common mental health issues like anxiety and depression. IAPT covers most adult mental health referrals, with 1.1 million referrals from January to August 2019.

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The government set a target of 95% of referrals receiving treatment within 18 weeks. Across NHS England as a whole and most CCGs, this target is met.

Around 60 per cent of the total – 675,000 – had their referrals ended without receiving a course of treatment, defined as ending without completing at least two treatment sessions.

Of these, 330,000 were never seen and 320,000 only had one session of treatment. Some of the referrals did not proceed for clinical reasons, while some 240,000 referrals were marked as dropped out and 44,000 were marked as declined treatment.

Government targets only count referrals who receive a course of treatment. Headline government figures show that 99% of people who receive this do so within 18 weeks.

An NHS England guide says “people who are referred but never seen will be excluded from waiting time calculations.

This gives CCGs and service providers an incentive to de-prioritise or end referrals for those who “breach” 18 weeks. If treated, targets will be negatively impacted

An NHS spokesperson said: “The fact is more than one million people were referred to IAPT services over the last year, helping hundreds of thousands overcome their depression and anxiety and the widely agreed waiting time targets have not just been consistently met but exceeded.

“Nine out of ten patients get help quickly and more than half of those go on to recover, while the NHS Long Term Plan will go even further – seeing 1.9 million people by 2023/24.”

‘I felt like I was a burden’

In Lancashire, Sophie Goodman was referred for mental health treatment for severe anxiety and depression and was experiencing suicidal thoughts. She and a clinician decided high intensity counselling was the best option.

After waiting around five months for treatment, she called the service and was told she would have to wait three more months.

“I felt like I was a burden,” she said.

“They suggested that if I transferred to some sort of CBT, group or other therapy with a shorter waiting list I might get help quicker. However, I could not access these services without leaving the counselling waiting list.”

She added: “I also went back to my GP… and I could see he was visibly upset as I’d deteriorated massively.”

When asked if this was appropriate, Lancashire & South Cumbria NHS Foundation Trust said: “We would want to ensure that people access the service most appropriate for their needs… Therapy is matched to the person’s presenting mental health condition, not waiting times.”

Later, she received a letter which read: “If we do not hear from you in [around a week] we will assume you no longer require our service at this time and we will discharge you back into the care of your GP”. i has seen similar letters from other services.

“They never called me and put direct pressure on me – I just felt the pressure was on me to chase and reconfirm and… in the state I was in that was incredibly difficult,” Ms Goodman said.

“I was so so angry at the time… about the sheer length of time I had been waiting and then I had to call within a week – and specifically call. I had extreme anxiety and found it hard enough to discuss mental health in person let alone on the phone.”

Lancashire & South Cumbria NHS Foundation Trust said: “The service has been validating its waiting lists… to review people’s mental health, ensure that the therapy initially agreed at assessment is still appropriate…

“We would never intend to cause undue anxiety and the service is reviewing how it communicates in these circumstances.”

‘Wait or cancel’

In Hertfordshire, Emily Riley had been waiting for over a year for treatment before she had to re-refer herself to IAPT, as it seemed her referral may had ended without her knowledge.

Shelley, also in Hertfordshire, who had also been waiting over a year for treatment, was once told by NHS staff that she had two options: “Wait [several months] and see if they can see me again or cancel my referral and be referred again.”

Lucy, a patient who has been waiting around six months for treatment receives monthly calls.

“They call, ask how I am feeling and then if I still want help.”

She also described feeling like “a burden”.

Hertfordshire Partnership Foundation Trust, who run IAPT services in Hertfordshire said: “Increases in demand for IAPT services, as with other parts of the NHS, can have an impact on the speed with which patients can be seen and waiting times. This can affect both the time to initial appointment and the time to individual treatment…

“Our experience is that many people with anxiety and depression are able to engage effectively with staff over the telephone… it is often quicker to interact over the telephone rather than wait for a face to face appointment.”

Analysis from i has also show a discrepancy in the figures with East and North Hertfordshire CCG.

This graph (above) shows that in April 2016, when nearly 500 people allegedly dropped out of treatment, the number of people waiting over 18 weeks dropped from 510 to 5.

Hidden waits in numbers

According to NHS Digital data, as of July 2019, there are 90,000 people waiting for mental health treatment and only around 7,000 waiting over 18 weeks.

Analysis has revealed what sources have referred to as ‘hidden waits’, where people get an initial appointment – but have to wait a long time for a second appointment. This situation has the effect of reducing the size of the waiting lists on paper.

Patients are sometimes initially brought in for an “assess and treat” appointment, where they have their mental health assessed and apparently begin treatment in the same session.

However, many patients wait for months for a second session or do not get one at all.

If a patient receives a first session of treatment, there is a one in four chance they will have a second within a month, and 45 per cent chance within three months.

As of August 2019, 236,000 patients had to wait over a month for a second session, and 80,000 had to wait over three months.

‘Shameful record’

The NHS England guide itself says it tries to guard against “artificial treatment starts where patients have an early appointment but are then put on an ‘internal’ waiting list before a full course of treatment starts”.

Barbara Keeley, shadow mental health secretary for Labour, said the statistics were “shocking”:

“The Conservatives have a shameful record on mental health. They’ve… left too many people without vital support and failed to put forward any plans to improve services.

“Labour will invest an extra £1.6bn a year in mental health to transform services and prioritise early intervention to ensure more people get the mental health support they need.”

A Conservative spokesman said: “We are transforming mental health services with a record spend of £12.5bn last year and announced a further expansion of mental health services in our Long Term Plan for the NHS, with an additional £2.3bn in real terms by 2023/24.”