The real reason why the NHS is failing those with learning disabilities

As a mental health nurse by background, I can categorically state that reviews of the deaths of patients with learning difficulties will continue to be side-lined if inadvertently left by clinical commissioning groups to my former peers and colleagues at mental health trusts (Exclusive: Death review backlog still growing despite NHSE commitment, 8 January 2020).

Increasing backlog of cases

The “national learning disabilities mortality review” programme – known as LeDeR – was launched in 2016. The system, coordinated by the University of Bristol, is meant to ensure reviews are carried out within six months of a relevant death being flagged to the local CCG.

However, as the HSJ revealed last month, the backlog of cases not reviewed is growing. This is despite an extra £5m improvement fund pledged by the government more than six months ago, after its annual report first revealed the backlog problem. It has been obvious for some time that there was a backlog of LeDeR reviews building up. The HSJ data illustrated the true scale of the gridlock.

In many cases, mental health trusts have been commissioned by CCGs to undertake learning difficulty patient death reviews, with learning difficulty nurses carrying them out on the ground (a responsibility that sits on top of their remarkably pressurised day job).

The problem is that learning difficulty nurses often don’t receive the necessary on-site clinical and managerial supervision in order to translate the virtual learning provided by Bristol University into the practical, analytical skillset needed to undertake the bulk of the review.

Make no mistake: learning difficulty nurses’ specialist clinical and professional skills are second to none. But they should not be expected to take on full responsibility for these reviews that require a range of medico-legal skills, experience and understanding of formally assessing the circumstances around a patient’s[ death in addition to their existing commitments.

The CCGs delegation of this responsibility to mental health trusts that don’t have the necessary governance resource and retrospective review experience is the real area for concern behind this mounting backlog of unreviewed deaths

This mirrors a scenario we have seen before. One only has to look at the national backlog of Best Interests Assessments that has arisen on the back of the Deprivation of Liberty Protections Safeguards and resulting in Ombudsman involvement (Staffordshire) and court proceedings (Esegbona v Kings College Trust).

The CCGs delegation of this responsibility to mental health trusts that don’t have the necessary governance resource and retrospective review experience is the real area for concern behind this mounting backlog of unreviewed deaths.

Unless this is addressed, no amount of new money thrown at this is going to solve the problem. Let’s not forget the fundamentals here – our primary obligation to give grieving families context, understanding and a sense of closure.

 A progressive project

While the LeDeR programme is a vital project allowing the NHS to listen and learn from events, to revisit such memories years post the event isn’t in anyone’s best interests. Early intervention is critical in such cases, and actually the clinician can also make a truly positive difference to the feelings and emotions running raw at such times. Families need to know that we care, that we listen, and that we act.

Ironically, the LeDeR review project is at risk of demonstrating the same system breaches that it was commissioned to investigate. Indeed, it is being hamstrung by the most common problems highlighted by local reviewers, such as significant delays in delivering the reviews, staff training, care coordination and poor communication.

The Third Annual LeDeR Report from Bristol University (2018/19) lists 12 very specific competency-based recommendations that have resource and practice implications for NHS commissioners. It would be interesting to understand how CCGs have responded to the explicit recommendations.

Ironically, the LeDeR review project is at risk of demonstrating the same system breaches that it was commissioned to investigate

There is no local incentive to ensure managers on the front line comply with the requirement. Bristol University has been commissioned to lead the programme and report progress, but they have no statutory authority or mandate to compel NHS organisations to act.

What we need, in my view, is a joined-up approach across LeDeR and continuing healthcare teams. CHC teams regularly carry out retrospective reviews and understand the framework – although not yet directed to carry out LeDeR reviews. As it stands, there are similar systems run in parallel by two separate commissioning divisions, each contributing a partial skill set.

The joint approach across such services is actually a simple solution, as long as we can overcome the bureaucracy and siloed working. Our defined roles as commissioners of healthcare should be viewed as guidelines and not tramlines.

We remain public servants. Essentially, we already have a skilled, untapped workforce sitting within a parallel service that could support the LeDeR framework nationally (including those who have access to vital clinical histories).

I have seen these issues stymie the best intentions of policy and public resources time and again as part of my work with CHS Healthcare teams helping to deliver NHS Continuing Healthcare nationally and LeDeR in a small number of CCGs.

We can do a lot better than this. These reviews were created to understand how care could be improved for people with learning difficulties. We must do better for these people and their families as well as those who are currently receiving care.