Making serious system-wide attempts to address missingness in healthcare may not feel like a high priority with all the current understandable concern about high demand and resource challenges in the NHS. However, it is important as an overarching way to address Scotland’s great rhetoric, but poor record on tackling health inequalities.
We define missingness as the ‘repeated tendency not to take up offers of care such that it has a negative impact on the person and their life chances’(1).
GPs at the Deep End Scotland are a group of (mainly) GPs campaigning to improve healthcare for people living in the most socio-economically deprived communities. We realised that multiple missed appointments was a major issue- a daily concern for practitioners but an invisible issue for policy makers.
For decades there has been a focus on missed appointments more generally, however this has tended to focus on the impact of missed appointments at the service level such as cost to the NHS of missed appointments(2) rather than at the patient level, and makes no distinction between one off ‘situational’ missed appointments and more enduring patterns(3). Our large-scale, Chief Scientist Office (Scotland) award winning research investigated patterns of missed appointments at the patient level in the general population. This was in more than half a million Scottish general practice (GP) patient records, for the first time(4).
We found that a high rate of missed GP appointments (an average of more than 2 per year) predicted very high premature death rates. Patients were more likely to have multi-morbidity (2 or more co-existing long term health issues), especially mental health conditions(5), and to experience high socio-economic disadvantage and other challenging social factors(4, 6). Patients experienced high treatment burden – the work needed to manage their health – and missingness in use of acute hospital services too(7).
These graphs(5) shows the chance of dying between the different patterns of missed appointments. If this stark difference in associated outcomes were for a health condition rather than health service utilisation patterns, there would be outrage.

The existing research was sparse on why people may be missing from healthcare and what could be done to address it. It also tended to problematise the issue as being the fault of patients and an issue for services, rather than the fault of services, and an issue for patients. It was also viewed as being about single issues, hence tended to come up with ‘one size fits all’, reductive solutions(3).
Our current National Institute of Health (UK) research uses realist methods to create a theory about the causes of missingness and to determine what might work, for whom, and under what circumstances, to address these causes. This was a review of 197 published papers(3), interviews with 61people, and stakeholder workshops with 16 people to review our results, and develop our intervention. Our participants were health and care professionals and people with lived experience of missingness from a range of clinical, social and inclusion health contexts.
We found that causes of multiple missed appointments occurred across the patient journey and are driven by complex interactions between patients’ circumstances and the ways in which services are designed and delivered.
Patients may feel that the service is not for them – not needed, not able to improve their health, not appropriate, or is unsafe. This may be influenced by past experiences of mistreatment, conflicting understandings of health, poor communication, and offers of care in the NHS that do not ‘fit.’
“There’s a constant dynamic of conflict […] and this is a theme you’ll find from anybody you speak to, who has a child or an adult with complex health needs, a constant fight. And some people; they get exhausted, and they give up, and I can’t blame them.” (Jodie, Glasgow)
Some may experience issues physically getting to appointments because of travel costs and difficulties, poor health impeding mobility, and concerns about safety. NHS services have often specific, inflexible rules for how they are used, making it hard for patients to arrange the right appointment for them – at the right time, by the right method, with the right person.

‘Missing’ patients may be subject to a host of competing demands with limited resources to manage or meet them, including work, other appointments, caring responsibilities, or urgent and pressing needs or crises caused by precarious circumstances.
“It’s all very much about the now, where you’re going next. How you’re going to make a living. […] Is it ‘go to the appointment’, or ‘I’ve just been offered this job, which is going to give me a couple of hundred quid in the pocket, which is going to make a difference.” (Naomi, Brighton)
Finally, a lifetime’s worth of experiences of stigma, hostility, trauma, and difficult relationships with care may act as a deterrent against accessing care.

We are finalising our suite of interventions developed along with our professionals and experts by experience of missingness. A key aspect of this involves changing the attitudes of NHS staff and the wider public – applying a missingness lens to health care. This, along with additional resource, will create the conditions to make widespread change.
Some mainstream and Inclusion Health GP practices have already started applying a missingness lens. For example, Scottish Government have provided seed funding to Deep End GP practices to provide assertive outreach for patients they identify as at risk of missingness. The early qualitative evaluation of this shows that with some additional funding, a change in thinking and a different response from practices, then a real difference can be made for previously missing patients.
Tangible positive experiences of healthcare, able to adapt to everyone’s circumstances is required to start closing the health equity gap and realise our ambitions of a healthcare system rooted in human rights.
Professor Andrea E Williamson is Professor of General Practice and Inclusion Health at the University of Glasgow.
Illustrations by Jack Brougham.
Thanks to Dr Calum Lindsay and Dr Carey Lunan who gave useful feedback on the draft blog.
References
1.Lindsay C, Baruffati D, Mackenzie M, Ellis D, Major M, O’Donnell K, et al. A realist review of the causes of, and current interventions to address ?missingness? in health care. [version 1; peer review: awaiting peer review]. NIHR Open Research. 2023;3(33).
2.England N. Missed GP appointments costing NHS millions. UK: NHS England; 2019.
3.Lindsay C, Baruffati D, Mackenzie M, Ellis DA, Major M, O’Donnell CA, et al. Understanding the causes of missingness in primary care: a realist review. BMC Medicine. 2024;22(1):235.
4.Williamson AE, Ellis DA, Wilson P, McQueenie R, McConnachie A. Understanding repeated non-attendance in health services: a pilot analysis of administrative data and full study protocol for a national retrospective cohort. BMJ Open. 2017;7.
5.McQueenie R, Ellis DA, McConnachie A, Wilson P, Williamson AE. Morbidity, mortality and missed appointments in healthcare: a national retrospective data linkage study. BMC Medicine. 2019;17(1):2.
6.Williamson AE, McQueenie R, Ellis DA, McConnachie A, Wilson P. General practice recording of adverse childhood experiences: a retrospective cohort study of GP records. BJGP Open. 2020:bjgpopen20X101011.
7.Williamson AE, McQueenie R, Ellis DA, McConnachie A, Wilson P. ‘Missingness’ in health care: Associations between hospital utilization and missed appointments in general practice. A retrospective cohort study. PLOS ONE. 2021;16(6):e0253163.
2 comments
Catriona Milligan
This is such an interesting article. I’d be interested to know whether increased digitisation of services has increased missingness. In my experience video and phone appointments and text notifications add to the likelihood of missed attendance.
Andrea Williamson
Thank you!
The population data from practices was from before digitisation really took off and was of face to face appointments only. However the post Covid qualitative evidence is that, yes- a combination of lower access to phones, wifi and reliable phone signal drives missingness. This is in the context of multiple competing demands on peoples time and attention, as well as the additional challenges brought by having additional communication needs. Our missingnesss interventions (forthcoming) say that appointment provision needs to be flexible and this includes whether it is face to face, on the phone or by video.