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GPs asked to release case notes for learning disability deaths ‘within a week’

GPs should aim to release case notes for patients with learning disabilities who have died ‘within a week’ of a request being made, NHS England has said.

In a letter sent to all GP practices and chief executives of provider trusts (27 July), NHS England said case notes needed to be released as quickly as possible, and ‘ideally’ within a week, to the Learning Disability Mortality Review Programme (LeDeR), to ensure timely completion of reviews.

It said: ‘During the Covid-19 pandemic we have seen a very significant rise in the number of people with a learning disability who have died compared to the same period last year.

‘It is therefore particularly important now that we complete LeDeR reviews to ensure that we understand how to reduce mortality and morbidity for a future wave or similar epidemic.’

It comes after the fourth annual LeDeR report found people with a learning disability are more than four times more likely to die of a treatable medical cause than the rest of the population.

NHS England said in the letter that some professionals had expressed concerns about releasing patient records, but that guidance was provided within the General Medical Council’s Code of Confidentiality (section 137-138) that ‘supports the release of such case notes’.

It added that an alternative to uploading case notes to the LeDeR portal might be to ‘have a meaningful conversation with the reviewer’ to ensure that they have ‘as a full a picture as possible of the person’s life and circumstances leading up to their death’.

A separate letter was also sent to clinical commissioning groups (CCGs) this week (27 July) setting out their expectations in relation to the delivery of the LeDeR programme.

The letter said that LeDeR reviews cannot be completed without ‘the cooperation of primary care’ and that CCGs have a ‘crucial role’ to play in ensuring that GP practices are aware of the programme, release clinical notes to reviewers or have a conversation about their content.

It added that reviews of all eligible deaths notified to the programme before 30 June 2020 are expected to be completed by the end of December 2020, and CCGs should be ‘developing plans now to achieve the 100% completion rate’ by this date.

NHS England also said that extra funding will be made available to support CCGs to complete the increased number of reviews due to Covid-19.

Readers' comments (2)

  • Patient dies and is no longer registered thus no longer on list. This then becomes a CCG task to arrange for notes transfer or an appropriate fee for Primary Care.

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  • That's OK, I am sure we can send them back to the CCG/LHB within 4 days, so we won;t need to worry about providing copies to the review, as we will no longer be the relevant data controller!

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