People with a learning disability die on average 15-20 years sooner than people without a learning disability1, and often from causes that are commonly preventable. They are three times more likely to die from a cause that could have been treated or prevented, and recent high profile inquests around the deaths of people with a learning disability such as those of Connor Sparrowhawk and Richard Handley appear to confirm this.
People dying from secondary infections following influenza who have not been offered a flu immunisation, people dying from sepsis, people dying from the complications of constipation - these are all things we can change.
The Confidential Inquiry into Premature Deaths of People with a Learning Disability (CIPOLD 2013), led NHS England to commission the Learning Disability Deaths Review (LeDeR), the world's first national process for reviewing all deaths of people with a learning disability. This was undertaken with the aim of capturing and acting on learning so that preventable mortality can be reduced.
Following the recommendations of the CQC report Learning Candour and Accountability (Dec 2016), the National Quality Board produced guidance for hospital trusts on learning from deaths and stated that all learning disability deaths should be reviewed using the LeDeR methodology and reported on quarterly.
In response to this there have been legislative amendments requiring Trusts to report on their learning from deaths as part of their annual quality accounts. In addition, the NHS Standard Contract (see Service conditions 3.4A and 3.4 B) has been altered to reflect this obligation and the CCG planning guide update 'Refreshing NHS Plans' also indicates the requirements for commissioners to deliver on the implementation of this important work to improve quality of care and reduce avoidable premature mortality (see appendix on deliverables, Section 5).
At the LeDeR team at Bristol University, we anticipate that there will be approximately 3,000 deaths of people with a learning disability each year. There are approximately 7,500 GP practices in England, so this would lead to a rough average of one learning disability death every two years per practice - obviously accepting this will differ greatly from practice to practice depending on list size, proximity to institutions caring for people with a learning disability and so on.
As well as learning from deaths we want to prevent avoidable ones
So how can GPs help?
GPs can notify the death of a person with a learning disability by calling the LeDeR team in Bristol on 0300 777 4774, or by notifying a death online through a secure web based platform. The team in Bristol will then allocate the notification to be assessed by a local reviewer.
Every reviewer is asked to make contact with the patient's GP to gather some basic information about the patient. This would include their health history, information about the frequency of their annual health checks, immunisation history or any concerns the GP may have had about the patient or the care they were receiving.
A reviewer will usually contact you by telephone to gather this information, so it's important to make time to speak to them when they get in touch. GPs will be expected to share this information; there is a legal basis for doing so [see box below] and the MDU and your local commissioner supports you to do this.
Some GPs have already trained to be LeDeR reviewers and are finding the work worthwhile. Lessons learned from reviewing a death, though emotive at times, can lead to quality improvement across sectors and organisations and this can be very rewarding.
Preventing avoidable deaths
As well as learning from deaths we want to prevent avoidable ones, and there are many initiatives already that GPs can play a pivotal role in delivering.
QOF (Quality and Outcomes Framework) register
A significant number of premature deaths are due to respiratory infection, and as part of the Enhanced Service for flu immunisation it is now recommended that people with a learning disability of all ages are seen as a high risk group and should be offered a flu immunisation. GPs are asked to proactively offer immunisation to patients they know have a learning disability.
Uptake of the three national cancer screening programmes by people with a learning disability is very low. This can be reviewed during the annual health check and people can be re-referred. Screening programmes now have easy read information leaflets and are being trained to reasonably adjust the screening processes. Local community learning disability teams will have information.
Annual health checks
GPs are incentivised to offer an annual learning disability health check (the RCGP also offers a health check toolkit for people with learning disabilities). This follows a newly developed electronic template that is available in all of the commonly used GP consulting systems.
Summary care record with additional information
Establishing and reviewing the QOF register for learning disability to make sure your practice prevalence reflects the expected population prevalence of 2.5%. It is worth noting, however, that most practices only achieve a prevalence of 0.7-1.0%, the reason being many children and young people, as well as many with milder learning disabilities, don't get coded. The original registers were populated from adult social care registers that only recorded those with more significant needs related to their learning disability.
You may need to search for people who have codes such as learning difficulties, autism, Down's syndrome, Fragile X syndrome, etc. Many of these people will have a learning disability but may not have been coded as such and will not appear on the QOF register.
As part of the annual health check GPs are encouraged to activate a summary care record with additional information for people with a learning disability. This additional information, such as carers and specific reasonable adjustments, is then available across the NHS system for any provider with access to the NHS Spine.
The MDU's Dr Udvitha Nandasoma explains more about confidentiality and the Learning Disabilities Mortality Review (LeDeR)
Patients usually have to give specific consent for identifiable information about them to be used in research. The LeDeR, however, concerns patients who have died and circumstances where there would be no-one able to give consent to their information to be used in this way after their death.
Section 251 of the NHS Act 2006 in England and Wales and the Health and Social Care (Control of Data Processing) Act (Northern Ireland) in Northern Ireland both allow for the common law duty of confidentiality to be set aside for projects specifically approved by an advisory panel called the Confidentiality Advisory Group (now part of the NHS Health Research Authority).
The LeDePR project has specific approval under Section 251, meaning doctors can share information without the concern that they are doing so inappropriately or in breach of information governance principles.
While the purpose of the LeDeR is not specifically to investigate the care offered to the patients being reviewed, it is possible that some deaths will occur in circumstance where there are further inquiries (such as a coroner's inquest) or where a complaint has been made. Any MDU members concerned about such circumstances should contact the MDU for advice at an early stage.
Further information about Section 251 can be found at:
GMC's confidentiality Guidance- Disclosures for health and social care secondary purposes
NHS Health Research Authority FAQs about Section 251
The latest LeDeR report is also available on the Bristol.ac.uk website.