PHE Conference – using primary care data to plan better services for people with learning disabilities

By Lorna Rouse

On the 15th March Public Health England held a conference on using primary care data to plan better services for people with learning disabilities. Having identified GP registers as a potential source of key information on the health of people with learning disabilities, the Learning Disability Health Observatory at Public Health England have been working with the NHS Information Centre to extract anonymised data from general practice records to explore the health profiles of people with learning disabilities in local areas. The conference introduced this data, presented some preliminary findings and considered how this new data might be used to improve experiences of health and wellbeing for people with learning disabilities. (Further details can be found at

Setting the scene

Professor Eric Emerson (University of Sydney and Centre for Disability Research, Lancaster University) put the new data in context with a brief history of some key events that have highlighted the inequalities in healthcare experienced by people with learning disabilities and some resultant initiatives aimed at improving this situation. Despite signs of progress, better understanding is needed of how and why the health and health care of people vary between different parts of England.

The new data

Gyles Glover (Co-Director of the Learning Disability Observatory, Public Health England) introduced the new data with some words of caution. In particular, that the data tells us what has been recorded in practice notes and there are likely to be inaccuracies and peculiarities in the ways that individual practices record some conditions for patients with learning disabilities. Additionally, the data do not cover all practices since some did not respond and one maker of licensed information systems asked an ‘unrealistic’ fee for their cooperation, so practices using this system (including some known to have high rates of patients with learning disabilities) could not be included.

A comparison was presented of records for people with and without learning disabilities for a range of conditions, concluding that many major health conditions are more commonly reported or reported at younger ages for people with learning disabilities.

The case of diabetes

Since my PhD project explores the experience of diabetes care appointments for people with learning disabilities, I was keen to hear about the data on diabetes. In agreement with the limited existing research (e.g. Anwar, Walker, & Frier, 1998; Shireman, Reichard, Nazir, Backes, & Greiner, 2010; Taggart, Coates, & Truesdale-Kennedy, 2012), these new data show higher frequency of reported diabetes in patients with learning disabilities (and at younger ages) than in patients without learning disabilities. Diagnosis frequency of both type 1[1] and non-type 1 diabetes[2] was almost double for people with learning disabilities. In an average 250k population there are:

  • 8.6 people with learning disabilities and type 1 diabetes
  • 81.6 people with learning disabilities and non-type 1 diabetes
  • 1.9 times the frequency of diabetes in people without learning disabilities (Glover, 2016).

Encouragingly, and in contrast to some existing literature, which suggests inequalities in diabetes care (Taggart et al., 2012), the new data indicated similar management of diabetes for people with and without learning disabilities. This is based on records of a commonly used quality indicator for diabetes management, the testing of HbA1c levels[3].

  • 87.4 people with learning disabilities and 91.3% of people without learning disabilities had a recorded up-to-date HbA1c test
  • 81.9% of people with learning disabilities and 85.7% of people without learning disabilities were recorded as having a ‘satisfactory’ HbA1c level (Glover, 2016).

I will be interested to see whether further details of quality of care indicators for diabetes become available from this data.

Improving healthcare – Looking After Me and My Diabetes

During my literature review I have been looking for examples of reasonable adjustments to diabetes care services for adults with learning disabilities, so in the workshop sessions I was especially interested to hear about a diabetes education programme designed for people with learning disabilities and their carers. Nicola Winch, Diabetes Specialist Nurse and Sophie Treagus, Diabetes Specialist Dietician from Northamptonshire Diabetes Multidisciplinary Team described the Looking After Me and My Diabetes course set up for people with learning disabilities who may be unable to access standard structured education programmes for diabetes such as DESMOND[4]. Key features include:

  • two hour sessions each week for four weeks
  • continuity of day, time and venue for each 4 week course
  • attended by 6/8 people (a minimum of 4)
  • aimed at people with learning disabilities and their carers (paid or family)
  • open to people with type 1 and type 2 diabetes, with a new or longstanding diagnosis
  • handout detailing what is expected of carers before, during and after the course
  • carer action plans (to be shared if the individual is supported by multiple carers)
  • refreshers for previous attendees (particularly useful if carers have changed)
  • topics covered include: how the body usually works and what goes wrong in diabetes, understanding fat and sugar content of foods, managing medications, annual reviews and health checks
  • games and interactive sessions adapted from standard education programmes to make them accessible to people with learning disabilities
  • accessible food and activity diaries and pictorial action plans.

People with learning disabilities and their carers have told Nicola and Sophie that they have greatly benefited from the course and they feel that the course provides a safe environment to share experiences and ask questions. (Further details are given on the IHaL Reasonable Adjustments database

What the data means for people with learning disabilities – listening to experience

The conference nicely balanced presentations on the data with reflections on personal experiences and ideas for improving healthcare presented by people with learning disabilities.

The keynote address on access to healthcare by Crispin Hebron (Access to Health Care Lead at NHS England) and members of the self-advocacy group Gloucestershire Voices, considered what difference having better data might make to the real life health and wellbeing experiences of people with learning disabilities. Gloucestershire Voices concluded that the value of information alone is limited if it is not mixed with experience. This message was reinforced by members of Oxfordshire based self-advocacy group My Life My Choice who led an interactive session which helped to keep us all awake after lunch and provided a practical demonstration of the difficulties people with learning disabilities face when communicating about their health.

Equally illuminating for me were the views from delegates who were involved in the healthcare of people with learning disabilities in such a wide range of roles. Their experiences provided insights that would not be apparent from the data. Alongside the presentations given by people with learning disabilities this highlighted that despite the potential of the new data to improve the health of people with learning disabilities, understanding of where to direct change and how to ensure that change is meaningful for people with learning disabilities and their carers may be incomplete if the experiences of all concerned and their ideas for improvements are not heard.


[1] In type 1 diabetes, the body no longer produces any insulin. This type of diabetes usually occurs before the age of 40 and often in childhood.

[2] When the body produces insufficient quantities of insulin or uses insulin inefficiently. This type of diabetes tends to occur later in life.

[3] A measurement of glycated haemoglobin which provides a picture of average blood sugars over the previous 8-12 weeks. This measurement is often used as an indicator of quality of diabetes management since it gives an idea of whether blood glucose levels are being controlled within recommended targets. Research into diabetes management for people with learning disabilities has sometimes taken absence of the recommended routine testing of HbA1c levels or results outside recommended targets as evidence that people with learning disabilities receive poor quality and unequal diabetes care.

[4] Diabetes Education and Self-Management for Ongoing & Newly Diagnosed is a structured education programme for those diagnosed with or at risk of developing type 2 diabetes.


Anwar, A. J., Walker, J. D., & Frier, B. M. (1998). Type 1 diabetes mellitus and Down’s syndrome: prevalence, management and diabetic complications. Diabetic Medicine : A Journal of the British Diabetic Association, 15(2), 160–3. doi:10.1002/(SICI)1096-9136(199802)15:2<160::AID-DIA537>3.0.CO;2-J

Glover, G. (2016). Health and Care for People with Learning Disabilities. Presentation. Retrieved March 24, 2016, from

Shireman, T. I., Reichard, A., Nazir, N., Backes, J. M., & Greiner, K. A. (2010). Quality of diabetes care for adults with developmental disabilities. Disability and Health Journal, 3(3), 179–85. doi:10.1016/j.dhjo.2009.10.004

Taggart, L., Coates, V., & Truesdale-Kennedy, M. (2012). Management and quality indicators of diabetes mellitus in people with intellectual disabilities. Journal of Intellectual Disability Research : JIDR, 1–12. doi:10.1111/j.1365-2788.2012.01633.x