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The BBC News website reported recently on the Learning Disability Early Death Review (LeDeR) saying that people with learning disabilities are still dying from avoidable causes.

I remember discussing, with NHS colleagues, health inequalities for people with learning disabilities in the 1990s. That’s 30 years ago and we still haven’t solved the problem.

The report says that a quarter of deaths among people with learning disabilities resulted from Covid 19 compared to 13% for the general population.

While life expectancy for people with learning disabilities has improved by 1 year, continuing inequalities remain to be addressed.

The NHS, local authorities, the private sector and voluntary organisations all provide services for people with learning disabilities and it is vital that they work together to ensure that this group of people have access to the health services that they need if the inequalities are to be reduced.

The value of data

One of the ways in which access to services might be improved is the sharing of data between the services that support people with learning disabilities.

GPs are responsible for carrying out annual reviews of their patients with learning disabilities. As well as ensuring that primary care providers are aware of all those who require an annual review, increased data sharing by providers of social care services could increase the quality of such reviews. With GPs having access to more information about any changes during the previous year they may be able to spot issues more quickly and take action to prevent further health deterioration.

Use of data to target those most in need of health services through risk stratification can ensure that resources are targeted at those most in need and allow GPs to spend more time with those who will benefit most.

Local authorities and CCGs are responsible for commissioning health and social care services for people with learning disabilities and need to shift towards outcomes-based commissioning. Meaningful monitoring of contracts cannot take place in the absence of good data.

For providers of social care there are benefits to be realised through use of data to plan services more effectively.

And for people with learning disabilities the advantage of improved health and life expectancy provides the opportunity for greater equality with their non-disabled peers.

So why aren’t we already sharing data?

There are a number of barriers to effective data sharing which need to be overcome.

  • Many providers still rely on paper-based systems for care planning and recording. This makes it more difficult to extract and share data.
  • The NHS has a coding system for data recording known as SNOMED. This is used across the NHS for clinical recording. No such coding has been agreed for social care recording and the lack of this makes it more difficult to analyse data because of the variety of ways in which the same information may be recorded.
  • Although initiatives such as Local Health and Care Records Exemplars (LHCREs) have sought to encourage the development of data sharing between health and social care commissioners and providers, they have largely excluded the private and voluntary sector who provide most of the social care services for people with a learning disabilities
  • Health and social care services have suffered from years of underfunding which has been compounded by government austerity measures and the impact of Covid 19. Social care providers operate on relatively small margins and finding the funds necessary for investment in technology is challenging for many providers.
  • The recent decision to postpone the sharing of GP data resulted from concerns about the lack of information for the public about the purpose of this and consequent difficulties for individuals in making informed decisions about exercising their right to opt out of such sharing of their data. There will be a need for easy read versions of literature which explains the initiative and support for people with learning disabilities and their representatives to understand what data sharing means for them.

But none of these barriers are insurmountable.


The CQC are encouraging providers to adopt technology for care planning and recording and have gathered data throughout the pandemic from providers. Such data collection has helped to inform authorities about the support required to weather the pandemic and going forward, affords the opportunity for better planning of services.

The recent Health and Care White Paper is relatively short on detail about plans for social care but does suggest that legislation will create an expectation of closer working between the NHS and local authorities with responsibility for social care. Such collaboration will not be effective without data sharing between those organisations and the need for such data to be reported in a common format may drive codification of social care recording.

While we have yet to see the government’s proposals for social care reform, there is no doubt that pressure for this from the sector, the media and the wider public is growing. Self-advocacy and campaign groups for people with learning disabilities need to take the opportunities they are given to influence the agenda. With the social care market severely stretched it is vital that an improved funding settlement enables recovery from the pandemic and underpins advances in the health care provided for people with learning disabilities.

The postponement of GP data sharing provides more time to engage with people with learning disability and their representatives to explain the implications of this initiative and enable them to make informed decisions about whether they are content for their data to be used for research or service planning and if not, to exercise their right to opt out.

Good quality data will provide the opportunity to better understand the reasons for poor health outcomes for people with learning disabilities and plan services to improve health for this group.


For too long people with learning disability have suffered from inequality of health care provision and the consequent impacts on their physical and mental health.

Data provides an opportunity for the better planning of services and the DHSC’s Data Saves Lives report makes the case for this. As the report says

“Good and timely data is needed about the care being provided. This includes information on quality, costs and workforce requirements which can then be used to plan people’s care services, provide information to help people and their carers access information, and for planning and commissioning services. This is essential to make sure that the social care system is working for the people that use it, helping them lead more fulfilling lives with better outcomes.”

It is, however, vital that data sharing happens in the context of genuine and informed consent and the opportunity must not be missed to engage with people with learning disabilities and all those who support them to hear their experiences and learn from them to improve health outcomes for this group of people. Without such consent it is likely that confidence in those using data will decline and more people will opt out of allowing their data to be shared.

The pandemic has shown the value that technology and the data collected using it, can add in planning better services but much of this value will be lost if the opportunity to engage with the public, including people with learning disabilities, is not seized and as consequence, large numbers opt out of data-sharing.

If you need advice and support on technology, data management or data protection Empiric Partners have the experience needed. Take a look at our website www.empiricpartners.com