• CCGs claim a lack of reviewers causing delays to investigations
  • NHS England urged to “double or even treble” its funding for the national learning disabilities mortality review programme
  • One STP area had completed only 10 per cent of reviews at one point

NHS England has been urged to dramatically increase its funding for reviews of learning disability deaths, as clinical commissioning groups have revealed large backlogs with their investigations

Several CCGs have claimed their regions are struggling to keep up with the number of reviews they are required to complete under the learning disabilities mortality review programme, due to an “insufficient” number of available reviewers.

Under the LeDeR programme, commissioned in 2015 as part of a response following the death of teenager Connor Sparrowhawk, trusts and CCGs are required to review the death of every learning disabilities patient they are notified of. The scheme was rolled out nationally in 2017, after a series of local pilots.

Under new planning guidance, CCGs will be required to carry out reviews within six months of receiving the notification of a patient’s death in their area.

NHS England said it has invested £1.4m in the programme this year, which includes training 2,000 reviewers, to help increase the numbers of reviews being carried out.

But Ken Courtenay, chair of the intellectual disability faculty for the Royal College of Psychiatrists, told HSJ that funding and workforce resources would have to be “doubled” or even “trebled” if NHS England was committed to the reviews. He also said a performance indicator for CCGs may need to be introduced.

He added: “There [also] needs to be a will from CCGs and local authorities. They really need to be asking the providers and community teams to complete reviews [and] they need to be making the resources available for them to be done.”

According to recent board papers from the CCGs in South Lincolnshire, Dudley, Stoke-on-Trent, Halton, Surrey Downs, Berkshire West, Newark and Sherwood, and Bath and North East Somerset, their wider health systems are struggling to complete the required number of reviews.

In December, Berkshire West CCG said just 12 per cent of 883 cases in its region had been completed so far. In November, just 10 per cent of reviews had been completed across Lincolnshire, although the CCG told HSJ this has since been improved to 28 per cent.

According to Bath and North East Somerset CCG, the region’s coordinator deemed the national target to have 70 per cent of reviews completed by December 2018 to be “unrealistic” and it is currently being revised. 

Almost all of these CCGs stated their difficulties were due to an “insufficient” number of local reviewers and “a lack of reviewer capacity”.

Sarah Fletcher, chief executive officer of Healthwatch Lincolnshire, said the organisation felt there was a “significant impact” on families where reviews cannot be completed “in a timely manner”.

“What needs to be done is a national request to [the] secretary of state for health to assign relevant consultant time to complete the reviews,” Ms Fletcher said.

All CCGs were approached for a response. South Lincolnshire and Berkshire CCGs said measures were being carried out to improve backlogs and ensure learning is pursued.