The Frequent Visitor
By David Skinner – 17/07/2023
Normally when I walk students around the campus, we convene at the bus station, and they dutifully follow me as I play the tour guide. I have a fond memory of one student in 2022 who did not fall in line. Jen had mobility issues and feared she would not cope with the full walk. She drove to the campus accompanied by a friend and gained access to the car park at the Laboratory for Molecular Biology, telling security that she was “visiting from the university”. This was no small achievement given that the security at the LMB was so tight that previously that year I had been challenged for taking a photograph of the building whilst standing on the pavement outside.
LMB Building 2023
I recount this anecdote because it shows something of Jen’s relationship to the campus and to biomedicine more generally, which could be described as a weary familiarity. Jen’s experience of the campus dates from when in her words “it was just Addenbrookes”. While other students on the walk were easily impressed by their first sight of the scale and importance of the new buildings, Jen has experienced the growth of the campus as a frequent visitor over more than a quarter of a century.
Jen is in her mid-forties and lives in Cambridgeshire twenty miles from the campus. She was born at the Rosie Hospital and has had other health issues addressed at Addenbrookes. However, her primary experiences on campus relate to her daughter: Louise [not her actual name] is autistic; she has a kidney problem and other complex health needs that Jen says result from “a missing link in her DNA”. Jen remains Louise’s carer even though her daughter is now an adult. During the twenty-six years of caring for her daughter Jen has developed into a figure often discussed in the sociological literature about biomedicine, that is the ‘expert patient’ or ‘lay expert’, knowledgeable about the science and treatment of her daughter’s condition.
Because of the rarity of Louise’s condition, she has been treated since infancy at the regional specialist hospital at Addenbrookes rather than at her local hospital. Addenbrookes is specialist in terms of the expertise on offer and the available equipment such as scanners. Jen and her baby daughter had fortnightly appointments at the hospital and Jen estimates that, when she was young, Louise had on average five or six in-patient admissions a year. Jen and Louise have continued to visit the campus frequently, often accompanied by other members of their family. Jen adds: the Treatment Centre wasn’t there when my daughter was little. It was the basic Addenbrookes hospital before the extra wings were added.
Jen had been asked to participate in a research project that looked at the genetics of her daughter’s condition. She decided against participating in part because she believed that the condition was so rare that it was hard to see any immediate benefit of the project. Another important factor was the cost and inconvenience of travelling to Cambridge. This mixture of fine judgements about genetic risk and likely bus travel times encapsulates something about the campus experience for many of its users like Jen.
When her daughter was small Jen did not have a driving licence or access to a car. She was reliant on buses, taxis, or lifts from relatives to get Louise to her many hospital appointments. They frequently called ambulances or used hospital transport when Louise was unwell. The issue of access to the hospital was at one point so significant that Jen was encouraged to move to public housing in Trumpington Meadows close to the campus site to save travel time and expenses. Jen rejected this option because of the high cost of living in Cambridge.
Transport remains a challenge. Jen’s current home is not close to a bus route to the campus. She now drives a car but the route to Cambridge involves the notorious A14. Carparking on site is expensive and systems for subsidising those who must stay for long periods are increasingly bureaucratic. It can take upwards of twenty minutes to find a space in the public car parks. Movement between car parking and wards and appointments can also be a challenge. Jen told how following her son’s ankle surgery at the hospital, his plaster had become very wet in the rain during the process of returning to her parked car. Jen also talked about the difficulty of managing the main entrance to Addenbrookes by road or on foot: people arriving for appointments or in an emergency face an unsafe obstacle course lacking clear signage and crossing points and with some tricky blind corners.
Jen also discussed the inadequate facilities for visitors on campus. This is important for people who are on the site having to kill time while waiting for appointments or supporting patients. Most clinics request that patients do not attend until 15 minutes before their allotted time; timing a trip is particularly challenging for people who travel a long distance and/or use the infrequent public transport. There is shortage of seating inside and shelter outside hospital buildings. Jen said that the food options available in the Addenbrookes concourse had improved but it was “eat and get off” as seating space was at a premium. Many of the healthier eating options such as Marks and Spencer’s were too expensive while cheaper options, notably Burger King, were unhealthy and seemed incongruous in a hospital.
Jen describes the campus as “boring”. This might seem an odd concern until you grasp how much time she and her family have spent on site. Jen feels strongly about the needs of children and their parents, particularly of the siblings of children being treated on the site. There used to be inside and outside play areas. Jen contrasted the effort that had gone into landscaping the pond next to Royal Papworth Hospital with the lack of places for children to picnic and play outside. In her words the campus “needed to cater for all demographics.”
Jen told of a recent incident when her daughter was staying in hospital; Jen had left the ward briefly to vape and then been locked out for some time. Without wishing to pass judgement on people’s smoking habits or the hospital no smoking policy, the issue of where people can vape is not trivial as it raises questions about the boundaries of the hospital. Is the whole campus a hospital? Jen was advised by hospital staff to head among the new scientific building if she wanted to vape.
Jen’s story reminds us of some of the limitations of the current campus site as a material and social infrastructure. It also reveals the complex feelings about change that the expansion of the campus can evoke, even for somebody with a personal stake in the progress of cutting-edge research and medicine taking place there.
Jen witnessed the gradual expansion of the hospital but was still surprised by the extent of the new developments on its fringes when we toured them. I was keen to learn Jen’s perspective both as a long-time campus user and as a sociology graduate. Her answer broadened discussion of the spatial impact of the campus. On the one hand it was “brilliant” that so much new medical research was going on. On the other, she links the growth of the campus with negative changes to Cambridge and to the city’s relationship to the surrounding areas. Jen associates the growth of the campus with demographic change, what she calls “higher Cambridge” and with growing inequality. Lots of people “will suffer” because of the predominance of the relatively affluent people employed on the campus.
Jen connects the growth of the campus to her increasing alienation from Cambridge. She spoke nostalgically about an earlier time when Cambridge was a “special place” that she enjoyed visiting, for example on a night out with her friends. Cambridge was relatively small with a clearly defined centre and there was a clear distinction in character between that centre and the surrounding villages and rural areas. This changed as the city grew and the boundaries between city and countryside had disappeared. Cambridge had become “little London” – hectic and expensive. Cambridgeshire people like her were not welcome in Cambridge. She contrasted the affluence of Cambridge with the poverty and deprivation that could be found in other parts of the county.