A flawed reporting system has made it possible for care providers to record ECT use internally, but not disclose it to NHS Digital, the national body responsible for health and social care data has told Mental Health Today. NHS Digital say they will continue withholding the data they do hold on ECT and advocacy unless and until a five figure 'request fee' is paid.
NHS Digital says it has lost control of the recording of non-consensual ECT, sometimes known as shock therapy, delivered in mental health hospitals in the three years since 2015.
The body responsible for efficiently gathering and sharing national health and social care data has pointed the finger at mental health care providers, who it says lobbied for the relatively efficient reporting system previously in place to be disbanded.
A new system was introduced in January 2016, 'SnoMed', that NHS Digital has told Mental Health Today enables providers to record "anything they want" about ECT use, including non-consensual ECT rates.
NHS Digital claim it has left them with "meaningless" data and unable to readily interrogate provider preferences for the controversial treatment.
Practice guidelines acknowledge that ECT, an electronically induced seizure, causes cognitive impairments and that its efficacy as a long-term treatment either for depression or mania has not been demonstrated.
Rates of ECT use had been rising 30 percent year-on-year prior to the change to reporting processes. Mental Health Today (MHT) estimates that as many as one in twelve patients hospitalised for their mental health may now be getting the treatment.
Our website has heard from readers who have self-reported improved mental health in order to escape it being imposed upon them.
Previous data has indicated that around 40 percent of ECT is non-consensual, performed on individuals detained against their will under the Mental Health Act.
What has NHS Digital said?
"We had a [system] before the current one which had a different way for providers to record the things they did," Tom Poupart, Principal Information Analyst for NHS Digital's Community and Mental Health Team, told MHT.
"Previously we could have looked at [all the mental health treatments] in our dataset and selected all those with ECT. Now we have to get information from clinical experts about which [of the codes they've used] relate to ECT and what that means."
"The idea of moving to SnoMed was something based on the providers' [requests]. The people doing the mental health care and providing these treatments, it benefited them."
"Although data has been captured, because no guidance has been issued to providers about how things should be recorded under SnoMed, there is no guarantee that any is recorded correctly."
NHS Digital acknowledged that it should have "driven guidance" on how providers should report ECT.
Under the current system, it's possible for providers to record ECT internally, but not disclose it to NHS Digital.
"When we see ECT [numbers] in SnoMed, we don’t know if that’s ECT in relation to one unique patient or more than one," Neil McCrirrick, NHS Digital's Head of Information Assurance told MHT.
"It’s like, 'how do you work your count out'? You could think there’s been 55 incidences of ECT treatment in one area and that might not be true. They might have recorded it on their own internal system but not on our system. Or they might have used an alternate code and not recognised it as ECT."
Some providers have not been reporting any data on ECT use at all over the last three years.
MHT has spent 12 months pursuing data on ECT and advocacy use through Freedom of Information (FOI) requests, to inform the independent review of the Mental Health Act.
The review panel have so far only said that strengthening the right to refuse treatments including non-consensual ECT 'might' be recommended when their report is shared with the government and wider public on December 12.
In September, FOI regulators the ICO upheld a complaint from MHT that NHS Digital was withholding data in breach of the law.
NHS Digital yesterday courted legal action from the regulator by refusing to disclose the data it holds without MHT paying a five-figure fee.
In its latest written defence against the charge, it states that the data is 'readily available' elsewhere, then provides a broken link to an archived web page for a subdivision of NHS Digital, the Data Access Request Service (DARS). This entity indicates it will charge £13,800 to 'meet' MHT's outstanding data requests.
The ICO are considering what follow up action may now be taken against NHS Digital.
Crisis care faces a crisis of its own today, a crisis of trust and credibility, after the extraordinary new claims from NHS Digital that it has lost both count and control of non-consensual shock therapy delivered in mental health hospitals since 2015.
The NHS Confederation Mental Health Network, the 'voice of mental health and learning disability service providers for the NHS in England', has not yet responded to requests from MHT to comment.
Elsewhere, the Centre for Mental Health today joined Mind, Rethink Mental Illness and the National Survivor User Network in expressing its concern.
"There are a number of areas around the Mental Health Act where there are gaps in our knowledge and data which make it difficult to make sensible judgments about what's actually happening," Andy Bell, Deputy Chief Executive, told MHT.
"This is not the only invasive treatment where there are issues. It would be surprising if we didn't see recommendations around advance decisions and people having a greater ability to say how they want to be treated."
- See also: ICO rule NHS’s Mental Health Act whitewash breaches Freedom of Information law
- See also: NHS Digital: ‘Monitoring rising shock therapy is no longer a priority’
- See also: Simon Wessely: ‘ECT is in my own advance directive’