Data on ECT and advocacy use is being withheld by NHS Digital as the Mental Health Act review enters its final weeks.
The rates of people being exposed to electroconvulsive therapy (ECT) while detained against their will is being withheld from the public in breach of the Freedom of Information Act.
"The Commissioner has pushed NHS Digital to provide simple coherent explanations of the difficulties it states would be encountered in complying." Regulator's decision notice, October 2018.
The Information Commissioner’s Office (ICO) has made the ruling following an eleven month investigation initiated by this website.
The regulator has upheld a complaint from Mental Health Today that various data sets of public interest has been withheld by NHS Digital since ECT use began increasing sharply following several years of decline.
Practice guidelines acknowledge that ECT causes cognitive impairments but as many as one in twelve patients in our hospitals’ stretched wards now receive it.
Mental Health Today is ‘pro-choice’ on ECT but under the current Mental Health Act, psychiatrists and social workers have discretion to use it even when individuals have recorded the fact that they would find it non-therapeutic and indeed traumatising in of itself.
Patients exposed to ECT – an electrically induced seizure – have often reported subsequent memory loss, agoraphobia and the recurrence of pre-treatment mental health symptoms.
NHS England used to record and report the data but stopped when ECT use began spiking again.
In 2013, 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.
In January of this year, Mental Health Today was signposted to the Mental Health Services Dataset website by NHS Digital and told the information was not being withheld, rather that it was ‘readily available elsewhere’.
However each piece of data we were after, all in the public interest in the year the Mental Health Act is being reviewed, was costed. We were quoted £21,000 by the health service’s data collators to see the stats for 2017.
The data being withheld in contempt of FOI law
Data we had requested included:
- “How often was electroconvulsive treatment used to treat people detained in mental health settings over the last 12 months (or the most recent 12 month period for which the information is available)?”
- “Of the patients sectioned in the last 12 months, how many made use of an independent mental health advocate?”
As mentioned, NHS Digital initially used an “information readily available elsewhere” (FOI Section 21) legal defence. This was swiftly thrown out by the ICO.
NHS Digital then changed its stance, saying it might not hold the data after all, or if it does, it’s too complex to aggregate and “not a priority”.
The health service’s lawyers then adopted a Section 12 defence, arguing that it would take in excess of 18 hours’ work to process the data, which is the threshold a public authority is obliged to undertake to comply with FOI law.
This defence has now also been rejected by the ICO, who have upheld Mental Health Today’s complaint that this data must be made available in the public interest ahead of possible changes to the Mental Health Act.
The ICO has now ordered NHS Digital to deliver a response to our request to disclose that data by November 7.
The news follows divisive comments from the Chair of the Mental Health Act’s independent review panel in a recent interview to Mental Health Today.
Simon Wessely, a psychiatrist, made a case for fellow doctors and social workers to continue being allowed to legally override patient treatment preference under a ‘reformed’ Mental Health Act.
Last week, Manchester University released figures demonstrating that recently discharged patients are 90 times more likely to die from a drugs overdose than the general population.
The study raises serious questions about the therapeutic efficacy of treatments or approaches being used in some mental health hospitals and the role of the Mental Health Act in general.
Growing pressure for modernisation
Mental Health Today’s In Our Right Mind campaign calls for new legislation to ensure patients are given legal protection to ‘tailor treatment together’.
The campaign also calls for hospitals to be required to connect patients to advocates at the earliest point of interaction.
The ICO has now ordered NHS Digital to share its data on how many patients are currently accessing advocate protection with Mental Health Today.
Should NHS Digital fail to make the November 7 deadlines to provide Mental Health Today with its respective data sets they risk contempt of court proceedings at the High Court.
Should this happen, the data would not become public until after the Government’s December window for the Mental Health Act’s review team to share its recommendations for a reformed Act.
"Being able to regularly access comprehensive, useable data is key to providing a picture of what is going on within mental health services and being able to campaign on the issues that matter most to those of us with mental health problems, as well as holding organisations to account when people are let down." - Mind's response to the FOI verdict.
Under the terms of reference laid down for the review panel to meet, the recommendations should satisfy government, public and professional "concerns that some processes relating to the act are out of step with a modern mental health system, including but not limited to the balance of safeguards available to patients, such as tribunals, second opinions, and requirements for consent."
Currently, ECT – also known as ‘shock therapy’ can legally be used as a treatment for severe symptoms of depression, mania and catatonia against an individual’s advance wishes.
The National Institute for Clinical Excellence (NICE) guidelines on ECT use concede that its efficacy for mania has never been demonstrated in randomised control trials, nor as a medium to long-term remedy for depression.
NICE add in their ECT evidence and interpretation chapter: "Raising the electrical stimulus above the individual's seizure threshold was found to increase the efficacy of unilateral ECT [for short term benefits; MHT’s brackets] at the expense of increased cognitive impairment."
"Opinion varies from those who consider that its adverse effects are tolerable to those who consider that it is associated with unacceptable side effects including brain damage, severe confusion and considerable cognitive impairment in both the short and longer terms."
"The Committee felt strongly that consent should never be obtained by coercion – either explicit or implicit – through threat of compulsory treatment under the Mental Health Act, and mechanisms to monitor and prevent this from occurring should be developed and implemented, in consultation with appropriate professional and user organisations."
"In all situations where informed discussion and consent is not possible advance directives should be taken fully into account and the individual’s advocate and/or carer should be consulted."
This is currently not required in law but there is an opportunity for it to be made statutory through reforms.
Steve Gilbert, the only service user on the independent review panel, has previously said that his priority is to ensure that legislation reform supports making crisis care "always therapeutic". When asked recently by Mental Health Today to share the therapeutic basis of ECT, he did not offer one.
In the ongoing absence of data showing how the Mental Health Act is currently being implemented, the review panel now faces increased pressure to shape recommendations that honour advance treatment preferences, while also delivering on its pledge to make advocacy provision universal.
"The Independent Review of the Mental Health Act has been speaking to and hearing from many service users and carers in the past year, and is currently finalising its recommendations for government," a panel spokesperson said when contacted by Mental Health Today yesterday.
"The review is looking at how to make the MHA far more respectful to, and empowering for, the individuals who find themselves subjected to it. This could be via strengthened rights to, for example: advance decision-making being a part of legal care planning processes; better access to Independent Mental Health Advocates; and moving from the current ‘nearest relative’ model to a more active ‘nominated person’ model. The review will publish its final report later in the year."
A spokesperson for NHS Digital said: "We have received the decision notice and will reconsider this FOI request accordingly."
A range of organisations today joined Mental Health Today in calling on NHS Digital to bring transparency to how the Mental Health Act is currently being implemented, while lobbying for transformation of the law itself.
Mind: “It’s worrying that certain data about mental health isn’t routinely and regularly made available, particularly when it comes to the use of a controversial treatment like electroconvulsive therapy (ECT) which can be administered without consent under certain sections of the Mental Health Act," said Alison Cobb, Specialist Policy Advisor at Mind.
"We’re also concerned about the lack of data on the number of people detained under the Act who are able to access advocates. Not having access to this information makes it difficult to know how the law on ECT is being applied and whether people are receiving the advocacy support they need to exercise their rights under the Mental Health Act."
"We don’t yet know what the independent review of the Mental Health Act will recommend, but we have been fighting for a number of changes. Over thirty years old, this piece of legislation is outdated and not fit for purpose. As part of our submission to the review, we’ve been calling for national oversight of advocacy services, with quality assurance and sufficient funding to ensure that services are adequately resourced."
"When people are at their most unwell, they must be treated with dignity and respect, by being offered as much choice and control as possible. Being able to regularly access comprehensive, useable data is key to providing a picture of what is going on within mental health services and being able to campaign on the issues that matter most to those of us with mental health problems, as well as holding organisations to account when people are let down."
National Survivor User Network: "It is encouraging that the Commissioner has upheld Mental Health Today's complaint. It is vitally important that statistics are available for existing practice under the MHA, given the level of concerns about this from a wide range of people with lived experience of mental health problems/mental distress."
"A still more fundamental issue is that, in equality terms, the MHA should not be in place at all. People with lived experience of mental health problems/mental distress should have the same rights as any other patients. Because of this, we are arguing for more fundamental changes than a modernised Mental Health Act, in partnership with a considerable range of other user-led groups, individuals and allies."
"NSUN would like to see legal changes which bring UK law into line with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and with the recommendations which the UNCRPD Committee made to the UK government last October. Recommendations include a human rights model of disability (Articles 1-4), the elimination of degrading, or inhuman treatment (Article 15), finding ways of putting an end to compulsory detention, substitute decision-making and enforced treatment (Articles 12, 14, 19), an emphasis on addressing issues for people who experience more than one form of discrimination (Article 12, for example) and full involvement of user-led organisations in this process (Articles 1-4, for instance)."
"The Chair and Vice Chairs of the Mental Health Act Review have ruled out full compliance with the UNCRPD. This is a major point of concern."
Rethink Mental Illness: "ECT is a treatment with a long and controversial history, but can be an effective treatment for some people," said Alex Kennedy, Head of Campaigns and Public Affairs at Rethink Mental Illness.
"Doctors can only give you ECT without your agreement under very strict conditions, and it’s important that safeguards are maintained and reviewed to ensure that they are effective."
"Rethink Mental Illness has consistently called for additional legal weight for advance decisions, which is when you state your wishes about what treatment you do or don’t want in advance. We hope that the Independent Review of the Mental Health Act will recommend that these valuable tools for involving and empowering people detained under the Act are strengthened."