Exclusive - NHS Digital: ‘Monitoring rising shock therapy is no longer a priority’

Monitoring the use of shock therapy, neurosurgery and access to advocacy in hospital mental health wards is “not a priority” for NHS England due to current constraints on resources. This is the stance of data collectors NHS Digital, expressed in writing in the last 24 hours, as an investigation involving Mental Health Today and the Information Commission enters its eight month.

In 2013, shock therapy – also known as electroconvulsive therapy or ECT – was carried out 14,496 times on 1,447 members of the public, typically distressed and detained against their will in hospital under the Mental Health Act.

A year later it was carried out 25,107 times on 1,904 patients.

This represented a rise of over 30 percent on the previous year.

NHS Digital then stopped formally capturing or publishing the data. In January, Mental Health Today were quoted £21,000 to see the stats.

The Information Commission are supporting Mental Health Today in its pursuit of the data, which we argue should be freely available in the public interest, particularly at a time when the Mental Health Act is under review.

Seizure-based treatment

If use of ECT, an extreme and intolerant treatment which can cause memory loss and agoraphobia beyond the seizure, has continued increasing by almost a third year-on-year over the last five years, then as many as 5,000 individuals may have been subjected to it in 2017.

Coercive treatment rather than psychological support, which involves more time, empathy and money, remains a dirty secret in the hospitals that aren’t therapeutic – many are therapeutic – that doesn't sit comfortably in mainstream narratives of recovery.

5,000 is a high number. It represents about one in twelve of those detained in hospital. There aren’t enough psychiatrists to go around for the profession to always offer steady and sustained support in England and Wales.

Latest correspondence

"ECT is within [our] scope," NHS Digital conceded to Mental Health Today and the Information Commission in correspondence yesterday. "However, we do not have statistics available for use of ECT and this is not currently a priority agreed with NHS England and the Department of Health and Social Care for development,” the letter continued.

"In theory, if ECT is used by providers it should be being submitted to [NHS Digital] by providers. However we cannot confirm the quality of any data held without first undertaking a large piece of work."

"The work involved would lead to the cost of [Freedom of Information] compliance exceeding the appropriate limit." NHS Digital claim that under the Freedom of Information Act they do not legally have to track or disclose the use of ECT as they estimate it would cost more than an FOI "limit" of £450 to collate.

The author of the letter, an anonymous information assurance specialist, insists that MHT’s request for information has been taken seriously. But they add that to provide the requested data would be burdensome due to it requiring "extensive discussions with the clinical classification team," along with other obstacles including "discussions with providers to understand their processes and add context to the results."

"In terms of [publication of data showing frequency of] medical treatment, neuro-surgical treatment and advocacy, the same applies," concludes the letter, which we received by email attachment.

Interpreting 'appropriate'

The clinical guidelines for when and where to use ECT date back to 2003, when they were published by the National Institute for Clinical Excellence (NICE) authority. The guidelines say that ECT may be used in cases of prolonged or severe manic episodes or schizophrenia in adults, as well as cases of catatonia.

The Mental Health Act is currently under independent review. The review team’s chair, Sir Simon Wessely, told MHT earlier this year that he was keen to "conclude the review as soon as possible, so we can get on to the really important work of reforming the guidelines and how the Act is interpreted." 

While the guidelines undoubtedly need reform, the opportunity to make the Act itself robust to interpretation risks being missed at a time when a) the NHS is underfunded and b) NHS Digital is not collecting data on coercive treatment of individuals who are presenting with trauma.

Mania may sound like something that happens to others. However it is characterised by distress and racing thoughts, something the majority of us will experience at some point during a severe life challenge. Schizophrenia retains a stigma. However hearing voices, a common trait in the condition, is now widely understood - far more sympathetically than it once was - as relating to a profound experience, of one form or another.

Advance notices currently mean little

To many, the Mental Health Act remains woolly at best and arbitrary at worst. That is why it is under review.

The Mental Health Act says: "Surgery shall not be carried out unless… it is appropriate for the treatment to be given… to prevent the patient from behaving violently [not defined]" at Section 57.

It also says: "A person shall not be given electroconvulsive therapy unless… it is appropriate [not defined]… and there has not been an advance notice given."

Advance Decisions can actually be overridden too, even for ECT, in discretional “emergency situations”. Writing in Mental Health Today last month, Danielle Hamm, Rethink Mental Illness’s Policy Director, said: "This presents a worrying legal loophole where someone can be given a treatment against their wishes even though they specifically asked not to have it, and have a legal right to refuse it."

Sir Wessely’s team say giving "greater autonomy for people subject to mental health legislation" is one of their seven goals ahead of preparing their recommendations to government in the autumn. However, Dr Clementine Maddock, an influential psychiatrist and lawyer on the working group, was enthusiastic in discussions at Mental Health Today Wales about retaining use of the dangerously subjective word “appropriate” in the reformed Mental Health Act.

It aches back to the days when psychiatrists could justify a course of action simply by saying “I’m the psychiatrist”. Those days have passed. Understanding of mania and hearing voices have moved on, across mental health professions and not least in patients.

The continued overriding of advance notices is "emblematic of a wider system under the Mental Health Act that doesn’t always listen to people and doesn’t put value in their opinions about their own care," Danielle Hamm added in last month’s blog. "This is counter-intuitive for a system that is supposed to support recovery."

'ECT is not that bad'

ECT is "not like it used to be", one psychiatrist told MHT recently - and it has its backers elsewhere too. Currently, there is no robust right to choice. Will the Mental Health Act review address this?

Mental Health Today and the Information Commission will continue to pursue our case to NHS Digital. MHT will continue, also, its In Our Right Mind campaign with readers for a Mental Health Act that tallies with current understanding of mental health needs. This is equally about supporting NHS workers who want to operate in less pragmatic conditions than those being endured on its 70^th anniversary.