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Missingness in Healthcare: the Patients Association
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This month, we attended the Patient Association’s webinar on ‘Missingness in Healthcare’
“The current one-size-fits-all approach to appointments is failing people who use services, clinicians and the healthcare system itself” according to Sarah Tilsed, Head of Partnerships and Involvement at the Patients Association.
At a recent webinar, she highlighted that missed appointments often intersect with health inequalities, with people from marginalised groups being more at-risk of missing appointments.
What is missingness?
Missingness is the repeated tendency not to take up health and care appointments- and where this has a negative impact on a person and their life circumstances.
Research by the University of Glasgow has found that, contrary to the widely-held assumption that people miss appointments because they no longer need them, people at-risk of missing appointments are actually those suffering poor health.
They are also more likely to be experiencing mental ill-health, have longer-term medical conditions, often face complex social circumstances and higher premature mortality than those who regularly attend appointments.
Poor past experiences of attending appointments can lead people to believe that the NHS is not for them. They may seek to avoid repetition of negative experiences, such as attending appointments that felt unnecessary, inappropriate, stigmatising or unsafe.
Historically, people who use health and care services have been blamed for not attending appointments. The reality is that people often have lots of competing demands and limited financial, familial and relationship resources. What’s driving missingness is that people may be struggling to survive at the time of their appointment.
People generally value the NHS and their own health. They are not wanting to miss appointments, but there are barriers to them being able to attend.
The research found that people who miss primary care appointments are also more likely to miss out on secondary care as well, often due to conflicting responsibilities in their personal lives. These patients are then more likely to reach a crisis point and attend A&E.
Communication from services to reach out to those missing their appointments is good practice, as long as this is not conducted in a punitive way and is done to increase understanding and to find out “what can we do to help you?” If the patient feels understood, valued and cared about, they are more likely to attend appointments in future. There may be a psychological barrier where some people do not prioritise themselves and their own care.
Missingness and asylum seekers
Caroline Norman, HARP (health access for refugees) Project Manager at Refugee Council identified the main barriers for asylum seekers in accessing appointments as:
- Not understanding what the appointment is for. The first appointment most asylum seekers are offered is a health screening at a GP practice. They receive a printed-out schedule with no explanation of what the appointment is for. This is generally sent 4 to 6 weeks in advance of the appointment when they have recently arrived to the hotel and at a time where they are inundated with other documents.
- Asylum seekers often arrive to the UK with no UK phone number. They may be reliant on a WhatsApp number they use to contact their loved ones at home, which means there are contact barriers in communication with UK health services. This also means they may not have data on their phones, making it difficult to find their way to a health service since they cannot rely on GPS systems.
- Language barriers – people whose first language is not England may struggle to find their way around big hospitals and may not be able to ask for directions.
- People have no structure to their week or day, particularly when they first arrive. One day merges into the next, making it difficult to know when their appointment is. This may be exacerbated by poor sleep, which is a common problem for asylum seekers sharing rooms and especially where there is poor mental health and trauma.
- There is a lack of general support services to enable asylum seekers to navigate health services.
- Where they are unable to attend, asylum seekers often don’t know how to let the service know so that the appointment can be rearranged.
Recommendations
Reception staff are critical to tackling missingness. There needs to be a lack of blame, including where people don’t understand what an appointment is for. Where people using services don’t know what an appointment is for, they are unlikely to prioritize attending the appointment. They need to be given the information about what the purpose of the appointment is and what to expect. Staff need to feel empowered to feel that they can make a difference.
Welfare managers for asylum seekers have, in the past, delivered appointments by hand and explained to each individual what the appointment is for. Interpreters could be used where needed, or residents with lived experience could be utilised to aid communication. The welfare manager could then keep track of appointment times and sends reminders. They can meet communication needs, letting asylum seekers know which voluntary vaccines are available and communicating how medical records are set up with the NHS.
GPs could set up relationships with the accommodation providers and link with charities and local groups – instead of asylum seekers going out to services, we could help bring the services to them.
