LILY ROSE
Amanda Pritchard
CEO of NHS England
PO Box 16738
Redditch
B97 9PT
Dear Amanda Pritchard,
CEO of NHS England, striving for improving health nationally and ensuring high quality care for all.
I study Anthropology at UCL with a particular interest in medical anthropology which has allowed me to explore different practices, approaches and injustices across health systems globally. Anthropology and medicine pair well together since anthropology advocates for the understanding and consideration of our differences. Anthropology also strives for diversity and can offer holistic perspectives when discussing medical dilemmas (Marshall, 1992). During my course, we tend to study marginalised groups such as ethnic minorities, gender injustices and cultural groups, even those with physical disabilities. I have noticed one group has been missing from our discussions which is people with learning disabilities. The Department of Health defines a learning disability as having a reduced ability to understand new or complex information coupled with a reduced ability to live independently in adulthood (Phillips, 2012). Therefore, it is indubitably important for this issue to be explored in medical settings so to ensure that the care and attention needed is given to those with a learning disability to make their experience of care as agreeable as possible as it may be a more challenging experience for them to navigate compared with other people. It is evident in the media and beyond that people with learning disabilities are widely underrepresented and this is a significant issue in a healthcare setting as well.
Recently my 38-year-old sister, who has Down’s Syndrome, broke her ankle. After speaking to my parents, other sisters and social workers who have accompanied her to appointments and from my own experience of going to medical appointments with her, it is evident that not all health professionals understand how to communicate clearly with people with learning disabilities and in a non-patronising manner. Additionally, some staff tend not to attempt to communicate with her at all and just address whoever is accompanying her, assuming that she would not understand what is being said or be able to offer her own responses. My sister has full comprehension and understands what is said to her, but she has communication difficulties when responding. With sufficient patience and attention her responses can be understood, yet she is not always given this patience and respect. I have spoken to a few health professionals and medical students who have informed me that they rarely learn about those with learning disabilities and how best to interact with them to ensure fair treatment. Therefore, I would propose that all medical staff undergo some form of training or workshop on how to communicate with those with learning disabilities to allow for more pleasant and less daunting medical experiences.
I have read about the ‘hospital passports’ created by MENCAP, a UK charity for people with learning disabilities, which seems like a good idea in theory. I found this information on the MENCAP website, www.mencap.org.uk and it is also linked on the NHS website underneath the heading of ‘Support if you are going into hospital’ with the subheading ‘learning disabilities’. Although, this was something my sister was only made aware of upon her visit to hospital and only by one member of staff, so she was not in possession of one when it was needed. Therefore, it would be great if these were made more accessible, or something spoken about in advance of sudden events of hospitalisation. However, I would argue that it is hard to convey how a person is and what their needs are through a stagnant piece of paper. I would suggest another alternative could be an online version that is linked to a patient’s NHS records so it can be accessed in different locations at any time with the ability to be constantly updated. This could include special arrangements needed, vital information about the person that is specific to them such as differing methods of communication and how much they are able to comprehend and what needs to be adjusted in order for them to better understand things. When we think about inclusion, it is important for us to examine how people end up ‘misfitting’, what the effects of this could be and what exactly it is we are trying to fit them into (McKearney & Zogas, 2021). This is where I think anthropology could allow for the exploration of why people with learning disabilities are considered so different from others and this could help with how we shape the healthcare system to better accommodate them in a way that is adaptable and considerate.
What seems the most important thing to me in terms of healthcare is treating people like individuals. All humans are distinct and react to things in their own way, regardless of whether they have a learning disability or not. There are many things that cause humans to react differently to events, such as cultural differences, experiences and environments. Cognitive disability can be examined as an axis of human difference that is just as fundamental since it can completely alter the way one views the world and would respond to certain situations (McKearney & Zoanni, 2018). Therefore, it is just that people with learning disabilities may differ even more from others and require more specialised attention. I feel as though comfort and confidence in medical staff is essential in a healthcare setting and medical professionals should strive to create this for everyone, especially those with learning disabilities as it may make these experiences even more daunting given they often have greater healthcare needs which are often left unmet (Phillips, 2012).
The Baked Bean Company, a charity for people with learning disabilities based in Wandsworth, work with medical students and doctors at St George’s Hospital and devise plays and workshops based on the patient’s real life experiences showing how they have been treated by medical professionals and also showing how they all have different methods of communications. I spoke to the man who first devised these workshops and he explained how they used humour to exaggerate these experiences so as to not attack people but instead highlight how ridiculous these experiences can be and inspire people to take each person and their reactions on a case-by-case basis. One of the most important qualities a doctor can possess is empathy. Through these workshops, medical professionals can be exposed to how people are made to feel by the healthcare system. Though the success of these workshops has been significant, I would suggest that they were implemented more widely in the UK and became a part of medical curriculums to increase exposure. I’m fully aware that the healthcare service cannot always cater to the individual, especially now with all of the strains on the service, but it is also more vital than ever that with a growing and ageing population, and with more people being diagnosed with neurodivergence and learning disabilities, that this is addressed.
In conclusion, I believe that with more focus on how people with learning disabilities can be given more individualised care in medical care settings, healthcare would significantly improve and make it a less daunting and isolating experience for those with cognitive differences and would in turn make for a more productive outcome all round. Each person is an individual regardless of their mental ability and should be treated as such, but especially when more care is needed. This is an area that would hugely benefit from an anthropological insight since the exploration of liminality and the analysis of human behaviour within social environments would allow us to better understand how inequality is created and perceived and how we can tackle this (Reid-Cunningham, 2009).
Kind regards,
Lily Rose
References:
Marshall, P. A. (1992). Anthropology and Bioethics. In Anthropology Quarterly (Vol. 6, Issue 1).
McKearney, P., & Zoanni, T. (2018). Introduction: For an Anthropology of Cognitive Disability. The Cambridge Journal of Anthropology, 36(1), 1–22. https://doi.org/10.3167/cja.2018.360102
McKearney, P., & Zogas, A. (2021). Mentally Fit: Negotiating the Boundaries of Cognitive Disability. In Medical Anthropology: Cross Cultural Studies in Health and Illness (Vol. 40, Issue 2, pp. 111–115). Bellwether Publishing, Ltd. https://doi.org/10.1080/01459740.2020.1858296
Phillips, L. (2012). Improving Care For People with Learning Disabilities in Hospital. NURSING STANDARD / RCN PUBLISHING Artt & Science Literature Review.
Reid-Cunningham, A. R. (2009). Anthropological theories of disability. Journal of Human Behavior in the Social Environment, 19(1), 99–111. https://doi.org/10.1080/10911350802631644
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