By Helen Fielding
For the past year I have worked in a care home providing food and nutrition coordination and promotion. This position started out as a 20-hours per week part time contract leading food-tech style enrichment activities for residents with learning disabilities, which turned into a full-time role developing and facilitating nutrition upskilling classes for the care home’s staff.
This experience has opened my eyes to the unmet nutritional needs of individuals with learning disabilities inside the care sector. Through this short insight into my experiences over the past year I hope to inspire a new cohort of nutritionists to consider working in Learning Disabilities and Nutrition.
Unmet Health Needs when living with Learning Disabilities
Individuals with Learning Disabilities (LD) are more likely to; have diet-related disease than the general public, have conditions which depend on diet, i.e. dysphagia, epilepsy, and allergies, or have disabilities which impact the metabolism i.e. Down Syndrome and Prader Willi syndrome. For example, in the LD community Type 2 Diabetes is prevalent in 10% of the population group compared to only 5% in the general public [1]. Statistics like these often rely on a GP’s incomplete and often outdated disability registers and does not account for individuals who are either not registered with a GP, not validated on the disability register, or have undiagnosed T2Diabetes [2]. Thus, Type 2 Diabetes is a prime example of health conditions where the burden on the LD population is regularly underestimated.
Individuals with LD take significant quantities of medication to manage their health conditions, the most common include bipolar, psychosis, and epilepsy. These conditions rely on a cocktail of mood stabilisers, anti-psychotic and anti-convulsant medications including Sodium Valporate and Clobazam. Unfortunately, these drugs come with negative side effects including weight gain and constipation [3,4], which in turn has a negative impact on mood and causes epileptic seizures to occur more often [5,6,7]. Stopping the over medication of people with a Learning Disability (STOMP) is a campaign run by the NHS, they argue that preventing over-medication is key to improving service user’s quality of life [8]. It is possible that the health conditions presented above can be managed using diet and lifestyle advice in some situations, particularly when considering constipation [9] and epilepsy [10]. [As an aside, when reducing medications always seek guidance from an accredited medical professional. This should be a gradual and controlled process to reduce the risk of potential withdrawal symptoms.]
The multiple and compounding dietary health needs of individuals with LD often go undiagnosed until these unmet needs severely impact the individual’s quality of life. This section examined only two topics of concern within an area which I know there are many. As LD specialised nutritionists and dietitians are few and far between, greater efforts need to be made to focus on the LD population group within general services.
The Increasing Cost of a Healthy Diet for Individuals with Learning Disabilities
In addition to dietary needs, most individuals with learning disability are unemployed or on very low income and rely heavily on government provisions. The Personal Independence Payment also known as a PIP is the current government provision to support individuals with increased needs. The PIP is a very small amount and hasn’t increased with inflation. Service users signed up to the PIP have an allowance between £60 to £89.60 a week for daily living [11]. This boils down to around £10-15 weekly food budget. As PIPs also must cover utilities, medical needs, paid care hours, and much more. Often PIPs are topped up by family members or advocates, but this is not always guaranteed.
Many organisations are campaigning that this PIP payment is not sufficient. From a healthy eating perspective, it is near impossible to maintain a healthy diet on £10 a week. While budgeting techniques like freezing, buying in bulk and during the ‘savings-hour’ at supermarkets are possible, this cannot distract from the cheap cost and convenience of ready meals, processed and fast foods. Research from the University of Cambridge in 2014 found that a healthy diet is three times more expensive than an unhealthy one [12]. Moreover, it is likely that the cost of healthy eating has also increased since this study. Therefore, carer understanding of budgeting and meal planning techniques to reduce the cost of healthy foods is essential knowledge when considering that the cost of living is increasing while government provisions for LD service users remain the same.
Current legislation and guidelines on the provision of food in Care Homes and Assisted Living.
Currently, there are regulations and guidance in place to safeguard the provision of food and drink in primary and secondary education environments [13], and in hospital environments [14][15]. This is as diet quality significantly effects cognitive performance in education [16] and is part of many hospitals’ enhanced recovery after surgery (ERAS) program [17]. Whereas, in LD care homes there are no regulations or legal requirements on the provision of food and drink. Nor are there any requirements for care agencies to provide mandatory nutrition training for their staff. The only clear guidance which is relevant in these situations is those which dictate food hygiene legislations if the catering teams are classed as food businesses, and even then, loopholes are still present to offer leniency.
However, there is one landmark piece of guidance available for LD nutrition. This is the Caroline Walker Trust’s “Eating Well: Children and Adults with Learning Disabilities” [18]. It presents specialised nutrition recommendations including dietary needs of individuals with learning disabilities, challenging behaviour surrounding eating, and meal planning tip and examples, to name a few. The Caroline Walker Trust has published this guidance as both a long-read style document and an educational booklet for workplaces. Despite its brilliance, we cannot ignore that this work is largely outdated as it is now nearly 15 years old.
It is my hope, that by identifying this, we as nutritionists can push for greater representation and documentation in this field. These are high risk environments where actions of staff and residents can reduce the quality of life and cause avoidable harm. I believe that up-to-date guidance and a legal requirement for nutrition training will demonstrate that health promotion leads to harm prevention.
What Now?
So, why am I advocating for the importance of nutritional professionals in the Learning Disability care sector? Firstly, the multiple unmet health needs of individuals with learning disabilities are dietary related, but nutrition professionals’ representation in this field is low. Secondly, the increasing cost of living is making it harder for care staff to justify a healthy and balanced diet for LD individuals when they are struggling to afford food. And finally, the lack of legal requirements in LD care homes is perpetuating nutritional care which doesn’t meet the needs of LD individuals. These points all indicate the sudden and obvious need for accredited nutrition professionals to deliver mandatory nutrition training for health and social care staff working in care homes and assisted living.
If you would like to learn more about my work providing this type of training in care homes, please follow me on Instagram @helenfnutrition or comment below with your questions.
Helen Fielding (ANutr)
References
[1] Diabetes UK (n/a) Why is improving care for people with a learning disability important? Fact sheet 1 [Online][Accessed 23rd March 2022] https://www.diabetes.org.uk/professionals/resources/shared-practice/for-people-with-learning-disability
[2] Heslop, P. and Glover, G., (2015) Mortality of people with intellectual disabilities in England: a comparison of data from existing sources. Journal of Applied Research in Intellectual Disabilities, 28(5), pp.414-422.
[3] Esfahani, P.N., Nasiri, J., Badihian, S. and Yaghini, O., (2019) Short-term side effects of low dose valproate monotherapy in epileptic children: a prospective study. Iranian Journal of Child Neurology, 13(2), p.37.
[4] Singh, R.K., Sinha, V.K. and Chaudhury, S., (2019) Effect size of lithium, carbamazepine, and sodium valproate in child and adolescent bipolar 1 disorder during manic phase: A prospective open-label study. Industrial Psychiatry Journal, 28(2), p.185.
[5] Ferreira, A.C.F.M., Mayer, M.P.A., Kawamoto, D. and Santos, M.T.B.R., (2019) Constipation, antiepileptic drugs, and gingivitis in children and adolescents with cerebral palsy. International Journal of Paediatric Dentistry, 29(5), pp.635-641.
[6] Lefter, R., Ciobica, A. and Balmus, I. M. (2021) “Gastrointestinal functional impairments and epilepsy: Searching the possible connection mechanisms,” European Psychiatry, Cambridge University Press, 64(S1), pp. S411–S411.
[7] Beck, V.C., Isom, L.L. and Berg, A.T., (2021) Gastrointestinal symptoms and channelopathy-associated epilepsy. The Journal of Pediatrics, 237, pp.41-49.
[8] England, N.H.S., (2016) Stopping over medication of people with a learning disability, autism or both (STOMP). NHS England.
[9] Mathew, R., Attarha, B.O., Kallumkal, G., Cribbin, M., Izzo, C., Edwards, L. and Jacob, R., (2021) A Primary Care Approach to Constipation in Adults with Intellectual and Developmental Disabilities. Advances in Medicine, 2021.
[10] Goswami, J.N. and Sharma, S., (2019) Current perspectives on the role of the ketogenic diet in epilepsy management. Neuropsychiatric Disease and Treatment, 15, p.3273.
[11] GOV.UK (n/a) Personal Independence Payments – How Much you’ll get [Online][Accessed 23rd March 2022] https://www.gov.uk/pip/how-much-youll-get
[12] Jones N., Mansivais P., (2014) Price gap between more and less healthy foods grows, Horizons Magazine: the University of Cambridge, issue 40 https://www.cam.ac.uk/research/news/price-gap-between-more-and-less-healthy-foods-grows
[13] Department for Education (2014) The requirements for School Food Regulations 2014 No. 1603
[14] International Dysphagia Diet Standardisation Initiative (2019) Complete IDDSI Framework Detail definitions 2.0 [Online][Accessed 23rd March 2022] https://iddsi.org/IDDSI/media/images/Complete_IDDSI_Framework_Final_31July2019.pdf
[15] Department of Health and Social Care (2014) Establishing food standards for NHS hopitals – Independent Report [Online][Accessed 23rd March] https://www.gov.uk/government/publications/establishing-food-standards-for-nhs-hospitals
[16] Feinstein, L., Sabates, R., Sorhaindo, A., Rogers, I., Herrick, D., Northstone, K. and Emmett, P., (2008) Dietary patterns related to attainment in school: the importance of early eating patterns. Journal of Epidemiology & Community Health, 62(8), pp.734-739.
[17] Steenhagen, E., (2016) Enhanced recovery after surgery: it’s time to change practice!. Nutrition in Clinical Practice, 31(1), pp.18-29.
[18] Caroline Walker Trust (2007) Eating Well: Children and Adults with Learning Disabilities [Online][Accessed 23rd March 2022] https://cwt.org.uk/publications/