Research request – looking for participants

Natasha Marsland is a University of Bristol MSc student and is looking for people with mild and moderate learning disabilities who have diabetes and have had a hospital admission since the beginning of the pandemic to participate in her research study

The study aims to find out the difference reasonable adjustments made to their diabetes care and experience in hospital. More details can be found in the accessible information sheet below.

UoB Diabetes C19 and hospital admissions

Reasons for undertaking the study

Diabetes is more prevalent in people with learning disabilities than the general population (MacRae et al.2015) and people with diabetes are more likely to be admitted to hospital compared to the general population, with at least one in six beds occupied by a person with diabetes (Diabetes UK,2019) Insight work conducted in 2018 by the diabetes charity, Diabetes UK highlighted many people with diabetes receive poor diabetes inpatient care, with many gaps in the service (DiabetesUK, 2018). For many people with diabetes being an inpatient is a distressing experience (Read et al., 2018).

People with learning disabilities experience significant health inequalities compared to people without disabilities (NHS Digital, 2020). The pandemic has exacerbated the health inequalities experienced by people with learning disabilities (UN,2020) and people with learning disabilities are still dying prematurely and from avoidable deaths (LeDer,2021), with many of these deaths preventable if people with learning diabetes received appropriate health and social care (Glover 2013; Glover et al. 2017; Heslop et al. 2013; Mencap. 2007; Mencap.2012; Michael 2008; Hoskins et al.2016; Troller et al.2017). Mencap has exposed the barriers to appropriate health care experienced by people with learning disabilities during the pandemic (Mencap 2021). People with learning disabilities who were admitted to hospital during the pandemic were less likely to be admitted to intensive care, be intubated, and receive non- invasive respiratory support (Baaksh, R.A. et al.2021). Adults with learning disabilities were more likely to be infected with COVID-19 compared to the non-disabled population (Henderson et al. 2021; Williamson, EJ et al. 2021) and a lack of appropriate government guidance for people with learning disabilities has meant people have been unable to access appropriate health and social care (Flynn, S.et al.2021; Kavanagh, A. et al. 2022) which has contributed to poorer health, premature death, and excess mortality (LeDeR 2020). 

Mencap (2020) and Diabetes UK’s recent insight work (unpublished) explored the hospital experience of people with learning disabilities during the pandemic. Diabetes UK conducted research in the first wave to inform their work streams (Burr et al., 2021), however in both studies adults with learning disabilities were not identified. There is a gap in the academic literature from adults living with diabetes and learning disabilities perspective which has been confirmed by Diabetes UK’s inpatient leads and a recent literature review.

The insight I gather will be used to inform Diabetes UK inpatient leads, as improving inpatient care is a key area of work. As well as working as a registered dietitian at Diabetes UK I also work one day a week on the co-production arm of the Learning from Lives and Deaths programme, as a research assistant, at Kingston University.

This project has received university ethical approval and to find out more people can contact me at ef18878@bristol.ac.uk or via my research mobile 07787492287. 

References

Burr, O., Berry, A., Joule, N. and Rayman, G. (2021) 'Inpatient diabetes care during the COVID-19 pandemic: A Diabetes UK rapid review of healthcare professionals' experiences using semi-structured interviews', Diabetic medicine, 38(1),pp.1-5
Read, S., Heslop, P., Turner, S., Mason-Angelow, V., Tilbury, N., Miles, C. and Hatton, C. (2018) 'Disabled people's experiences of accessing reasonable adjustments in hospitals: a qualitative study', BMC health services research, 18(1), pp. 931.
Diabetes UK, (2018). Making hospitals safe for people with diabetes https://www.diabetes.org.uk/professionals/resources/improving-inpatient-care-programme/report-hospitals-safe
Diabetes UK, (2019) https://www.diabetes.org.uk/professionals/position-statements-reports/statistics
Diabetes: GIRFT Programme National Specialty Report November 2020
Professor Gerry Rayman and Professor Paths Kar. Available at: https://www.gettingitrightfirsttime.co.uk/wp-content/uploads/2020/11/GIRFT-diabetes-report.pdf(accessed 23rd April 2022). 
Disparities in the risk and outcomes of COVID-19 Public Health England (2020) https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/908434/Disparities_in_the_risk_and_outcomes_of_COVID_August_2020_update.pdf (accessed 5th May 2022).
Getting it right first time. Diabetes. (2020). https://gettingitrightfirsttime.co.uk/.../11/GIRFT-diabetes-report.pdf ·
Heslop P, Blair P, Fleming P, Hoghton M, Marriott A, Russ L. The confidential inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study. Lancet 2014; 383: 889–95.
Holman N, Knighton P, Kar P, O'Keefe J, Curley M, Weaver A, Barron E, Bakhai C, Khunti K, Wareham NJ, Sattar N. Risk factors for COVID-19-related mortality in people with type 1 and type 2 diabetes in England: a population-based cohort study. The lancet Diabetes & endocrinology. 2020 Oct 1;8(10):823- 33. Retrieved from: https://doi.org/10.1016/S2213-8587(20)30271-0
Glover, G. and Emerson, E. (2013) Estimating how many deaths of people with learning disabilities in England could be prevented by better medical care, Tizard Learning Disability Review, Vol. 18 No. 3, pp. 146-149.
Glover, G., Emerson, E. and Evison, F. (2013) The uptake of health checks for adults with learning disabilities in England: 2008/9-2011/12. Tizard Learning Disability Review, 18 (1). pp. 45-49. ISSN 1359-5474
Heslop, P., Blair, P. and Fleming, P. (2013) The Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD). Available at: https://www.bristol.ac.uk/media-library/sites/cipold/migra ted/documents/fullfinalreport.pdf (accessed 01 May 2022).
Heslop P., Blair, P. Fleming, P. et al. (2013) The Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD). Available at: https://www.bristol.ac.uk/media-library/sites/cipold/migra ted/documents/fullfinalreport.pdf 
Kavanagh, A. et al. (2022) “Health and Healthcare for People with Disabilities in the UK during the Covid-19 Pandemic,” Disability and Health Journal, 15(1). doi: 10.1016/j.dhjo.2021.101171.
Learning Disability Mortality Review (LeDeR) Annual Report (2021) https://www.kcl.ac.uk/research/leder
Learning disability mortality review (LeDeR) programme action from learning: Deaths of people with a learning disability from COVID-19. NHS England. https://www.england.nhs.uk/wp-content/uploads/2020/11/C0843-Covid-LeDeR-report-131120.pdf
MacRae, S. et al. (2015) “Diabetes in People with Intellectual Disabilities: A Systematic Review of the Literature,” Research in Developmental Disabilities, 47, pp. 352–374. 
Mencap (2007) Death by indifference. Available at: https://www.mencap.org.uk/sites/default/files/2016-06/ DBIreport.pdf 2019). 
Mencap (2012) Death by indifference: 74 deaths and counting. A progress report 5 years on. Available at: https://www.mencap.org.uk/sites/default/files/2016-08/Death%20by%20Indifference%20-%2074 %20deaths%20and%20counting.pdf 
Mencap Report (2020) My Health, My Life. Barriers to healthcare for people with a learning disability during the Pandemic. https://www.mencap.org.uk/sites/default/files/2020-12/ MyHealthMyLife_COVID%20report.pdf. Accessed
Mencap. (2021). How common is learning disability? Available at: https://www.mencap.org.uk/learning disability-explained/research-and-statistics/how-common-learning-disability.
NHS Right Care Pathway: Diabetes Reasonable adjustments for people with a learning disability who have diabetes. Available at: https://www.england.nhs.uk/rightcare/wp-content/uploads/sites/40/2017/11/rightcare-pathway-diabetes-reasonable-adjustments-learning-disability-2.pdf
Read, S., Heslop, P., Turner, S., Mason-Angelow, V., Tilbury, N., Miles, C. and Hatton, C. (2018) 'Disabled people's experiences of accessing reasonable adjustments in hospitals: a qualitative study', BMC health services research, 18(1), pp. 931.
UN Policy Brief. (2020). Policy brief: Education during COVID-19 and beyond. https://www.un.org/development/desa/dspd/wpcontent/uploads/sites/22/2020/08/sg_policy_brief_covid-19_ and_education_august_2020.pdf
Williamson, E. J. et al. (2021) “Risks of Covid-19 Hospital Admission and Death for People with Learning Disability: Population Based Cohort Study Using the Open safely Platform,” BMJ, N1592, p. 1592. doi: 10.1136/bmj.n1592.

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