The diary of the first known multiple sclerosis patient will be displayed as part of a new exhibition at the Royal College of Physicians (RCP) museum which explores perspectives often overlooked in traditional medical histories, told through the voices of patients themselves.
Sir Augustus Frederick D'Esté (1794–1848) was an illegitimate grandson of King George III, whose parents' marriage the king declared invalid, leaving Augustus to build an identity, and a name, on his own terms.
He never married and spent much of his adult life pursuing titles he was ultimately denied. For 24 years, he also kept a diary chronicling what he called ‘my case’ - a meticulous, unflinching record of his symptoms that would not be recognised as multiple sclerosis until decades after his death.
It stands as the earliest known first-hand account of the disease, offering a rare view of what it meant to live with an undiagnosed, unexplained illness in the early 19th century, and of one man's determination to understand his own body when medicine could not yet name what was happening to him. The diary is one of the items now displayed at the Patient Voices: Power, Truth, Understanding exhibition at the RCP’s Regent’s Park home. Developed in partnership with a patient advocacy steering group, the exhibition brings together voices past and present. The group shaped the exhibition through new artwork, oral histories, and by acting as a critical sounding board throughout its development.
The exhibition aims to answer key questions: how did it feel to survive an operation without anaesthesia? What did it mean to face the fear of an epidemic, or the pain of social stigma from certain medical conditions? What was it like to live with a life-limiting condition?
Elizabeth Douglas, Senior Curator, Royal College of Physicians Museum, said:
‘For centuries, the history of medicine has been told through doctors and scientists, while patients themselves have too often been left out. Patient Voices: Power, Truth, Understanding redresses that balance. Working with our patient advocacy steering group has shaped every part of this exhibition, and each object on display carries a voice that deserves to be heard. From an 18th-century diary to newly commissioned artwork, these stories span three centuries but speak to something timeless: what it really means to live through illness. I hope visitors come away seeing the history of medicine, and their own experiences of healthcare, in a new light.’
Other exhibition highlights include:
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The personal papers of Alan Nabarro, one of the first people in the UK prescribed insulin for diabetes in 1923 at the age of nine, including a series of desperate telegrams sent by his uncle to doctors around the world urgently requesting insulin for his nephew. Alan went on to become one of the longest-living people with diabetes at the time, and the Alan Nabarro Medal is still awarded by Diabetes UK to people who have lived with diabetes for 50 years.
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New artworks and interviews by members of the patient steering group, who have designed personal artworks representing themselves and given interviews describing their experiences as patients in their own words, offering a contrast to the ‘clinical gaze’ through which patients are typically represented in materials created by physicians and medical institutions
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The story of Princess Amelia and her struggle for agency in her medical care, drawn from the correspondence of RCP physicians Henry Halford and Matthew Baillie. The display explores how her position as a royal both helped and harmed her experience as a patient. 18th century artefacts include bloodletting instruments, seton needles, and a poignant memorial inkstand, given to Dr Baillie on Amelia’s tragic death from tuberculosis.
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Objects on loan relating to the experience of HIV/AIDS in the 1980s, including the controversial antiviral drug ‘Compound Q,’ sold to desperate patients before any effective treatment was widely available, and a panel from the UK AIDS Memorial Quilt community art project
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A video featuring a recent performance of two 18th-century compositions by French composer Marin Marais: Tableau de l'opération de la taille, depicting the agony of surgical removal of a bladder stone without anaesthetic, and Allemande l'Asthmatique, a vivid depiction of the breathlessness of asthma.
While the exhibition represents only a fragment of a larger history, its purpose is to spark curiosity. Visitors are invited to reflect on what it means to be a patient today, and how healthcare should listen to, and learn from, lived experience. A series of themed Museum Lates, lectures, children’s events and creative workshops will also accompany the exhibition.
(Picture credit: RCP/Saul Perryman).