Photo: In the blink of an Eye from Brendan Wilkinson Flickr photo stream

Reflections on the latest draft of the NICE depression guidelines

There is an episode in The Good Fight, (an American legal drama), where in the background to several scenes, a steady flow of evidence boxes are wheeled into the offices of Reddick, Boseman and Lockhart. By the end of the episode, the boxes fill an entire room. The task, for $4 million, is to spend a month sifting through evidence. If only there were $4 million for stakeholders wanting to participate in a NICE depression guidelines consultation. A draft update to the depression guideline was first put out to consultation over August 2017, when most stakeholders were probably on holiday. Documentation included over two and a half thousand pages of text, tables and figures plus 10 multi-worksheet Excel files. Since then, a long-running stakeholder campaign forced a second and then a third consultation running over Christmas and New Year. The new draft, published last month, contains several more metaphorical evidence boxes. Even the sharpest, smartest, keenest stakeholders might reasonably feel blinded by all this light.

In Incomprehensible, drawing on examples from the US, Wagner and Walker set out the many ways that information overload such as this, is used in ways intended to limit transparency and consumer engagement across several legal sectors including financial regulation, administrative law and consumer protection.

“In fact, in some cases, extraneous information can serve as a kind of intimidation tactic: causing audiences to give up, even if they really want to understand the information in front of them.”

As a public body, NICE is subject to English administrative law and must undertake consultations in good faith, so it’s not possible NICE would be engaging in these sort of tactics. Yet stakeholders include patients, families and carers as well as many professional groups who might struggle with the detail; so the timing and re-structuring of the evidential deluge doesn’t seem quite in the spirit of transparency, let alone Christmas.

The depression guideline is not the only guideline relevant to depression causing some issues. In 2019 a review by Public Health England found worryingly high numbers of people being prescribed and remaining for long periods on drugs that cause dependence including painkillers and antidepressants. In response to this review and pressure from patient groups and campaigners, NICE established a new committee to develop a guideline on safe withdrawal and prescribing. Luke Montagu, a leading campaigner and someone with personal experience of withdrawal effects from antidepressants was invited to join the committee. He later resigned over concerns about the approach to evidence review being followed:

“[NICE] has not invited withdrawal experts to give testimony, nor reviewed submissions from patient groups and withdrawal charities…It is shocking that these guidelines and the original PHE review only happened because of the campaigning of patients — and yet now, at the critical moment, their experience is being ignored.”

In early 2021 NICE consulted on a new Shared Decision Making guideline. In a joint response by user-led organisation National Survivor User Network, we expressed concern that the guideline failed to recognise that mental health service users are often not properly enabled to share in decision making including through lack of availability of accessible, evidence-based information to inform choices. The guideline claims that shared decision making involves prioritising patient experience and patient voice at all levels of health care delivery and relies on good quality evidence-based information accessible to patients. We noted that these principles are not however reflected in most NICE guidelines which are inaccessible to most patients and exclude patient experience as a form of evidence to inform treatment recommendations.

Since 2017, the stakeholder campaign concerned with the depression guideline has been raising six key areas of concern. One of these was the need for a review of patient experience to inform treatment recommendations. In 2019 in Disability & Society, Peter Beresford and I set out the importance of why a review of patient experience of treatments was critical in addition to other forms of user voice and empowerment in the overall process. Instead of reviewing research on patient experiences of treatment, the latest draft now includes a review of ‘patient choice’. This review contains a confusing mixture of research on professional experiences of managing depression and patient experiences of depression or services. Some studies of patient experiences of antidepressants have been included but studies of patient experiences of psychological treatments are excluded. The review contains some useful work but is conceptually flawed, as stakeholders advised it would be. Derived from this review are six stand-alone recommendations referring to patient choice and the importance of shared decision making. This is laudable but moot if the range of non-pharmacological options on the table are limited by NICE’s very narrow interpretation of evidence and not informed by direct patient experiences of those treatments.

In terms of determining what constitutes an evidence-based (EB) treatment, it would seem that NICE is holding tightly to archaic hierarchies of evidence even where that EB paradigm fits least well: mental health and psychological treatments. It also seems that these anachronistic interpretations of evidence-based medicine are not coupled to other more valued elements of the old paradigm such as the eschewing of political influence. In a paper myself and Ewen Speed wrote about the role of NICE during COVID, we explored the ways in which COVID exposed a variety of soft political factors that operate at the heart of NICE procedures suggesting that NICE was not acting independently of government and hence cannot claim to be led solely by scientific principle, immune from political influence.

In the short time they have available to them, it will be important for stakeholders to assess these newly published draft Depression Guidelines in this light if they can see past the blinding lights.

There are inevitably some improvements in the latest draft – a little something for everyone perhaps in the hope of pleasing some of the people some of the time. Yet the work before stakeholders is unlikely to spread much joy this Christmas.

Its belt sparkled and glittered, now in one part and now in another, and what was light one instant, at another time was dark. (Charles Dickens’ ghost of Christmas past)