NHS Digital claimed to 'meet' Freedom of Information Law in sharing the archived webpage pictured above this week. It's the latest setback for patient trust in crisis care. A revised Mental Health Act might restore faith.
Mental Health Today (MHT) has now spent a year pursuing data evidencing the extent to which contested treatments are being used on people against their will in our mental health hospitals, and the extent to which individuals are accessing advocates.
The black cat image doubles as a bleak metaphor for the uncertainty some feel about reaching out for support.
We have argued the data must be shared to inform a reformed Mental Health Act, one that can put trust back in our hospitals, supporting individuals and their loved ones to feel confident in calling 999 or visiting A+E in crisis.
Under the existing Mental Health Act, patient wishes can be overruled once they have been diagnosed with a mental health condition if it is deemed that they should be detained against their will to protect them from themselves or others.
We've been working with the Information Commissioner's Office (ICO), the UK’s independent authority set up to uphold information rights in the public interest.
The regulator is there to "promote openness by public bodies".
The ICO has upheld our complaints but yet NHS Digital, the body which holds the data, has stalled and looks poised to continue stalling beyond the release of the Mental Health Act review team's recommendations to government on December 12.
NHS Digital first told us it was not a priority for them, then they said it would be too expensive and time-consuming for them to clean and share the data.
This week, in an extraordinary conference call with MHT, senior officials blamed mental health providers for lobbying for the creation of a new reporting system called SnoMed in 2016. The system allows providers to document use of ECT, a controversial treatment that causes cognitive impairments and which has undemonstrated therapeutic value, internally - but record it as something else externally.
Prior to the establishment of this system, ECT use had been rising 30 percent year-on-year. It is not the occasional fall-back it is sometimes presented to be. 40 percent of the controversial treatments are thought to be performed without consent.
In its latest legal defence, a Section 21 argument, NHS Digital's Head of Information Assurance Neil McCrirrick has said that the information is 'readily available through other means'.
The letter, written on behalf of Tom Denwood, Executive Director of Data, Insights and Statistics, points the reader to an archived web page obscurely featuring a war poster of a lucky black cat. It carries the words 'Don't Depend On Luck'. [image above].
The metaphor for the anxiety some patients, potential patients and their families may be feeling is perhaps lost on those who curated it.
NHS Digital provides an additional service that makes data available at cost. It expects Mental Health Today to provide approximately £13,000 through this channel in application, data extract and dissemination fees.
The responses appear to show an institutional disregard for Freedom of Information law. And an ignorance of the weight of feeling that has been illustrated on this issue from Mind, the National Survivor User Network and Rethink Mental Illness. The Centre for Mental Health also made their feelings plain this week.
The ICO has within its powers the scope to take NHS Digital to our highest courts.
How might this play out?
In terms of the FOI complaint itself, the regulator is considering NHS Digital’s latest response and has made some interim requests from them. This may take a couple of weeks; it may take a month. MHT is not aware of any deadline being imposed for the latest follow-up inquiries.
• The ICO might rule to oblige NHS Digital to release the flaky data is currently holds.
• The ICO might rule to oblige NHS Digital to thoroughly validate the date it holds as best it can and then release it.
• The ICO might rule that NHS Digital’s charges of approx. £13,000 to release (or validate and release) the data for the outstanding requests are reasonable and require it to do nothing further. This seems unlikely.
• This week, for the first time, NHS Digital said they "want to work with Mental Health Today" to deliver a satisfactory outcome. Perhaps they may yet assume some responsibility and interrogate data as best they can, publishing it this month, in advance of the Mental Health Act recommendations being issued.
Whatever destination this FOI case arrives at, it has surely served to illustrate some of the concerns that catalysed the government's initiation of a review of mental health legislation a year ago.
As it stands, patients and their families sign up to a lottery when they take the plunge to reach out to crisis care for support. Ambitious legislation and considered reporting systems can confront this fear.