Reasons for transferring HIV care in London

Introduction

People living with HIV (PLWH) in England can access care at any centre, regardless of geographical location. Non-UK born and individuals without residency are entitled to free HIV care at any service. There are no data currently available on reasons why patients transfer their HIV management and care from one service to another. We aimed to investigate reasons for transfer amongst PLWH transferring their care to one of three HIV units in London, UK.

Methods

Patients transferring their HIV care to one of three London clinics between December 2015 and June 2016 were asked to complete a questionnaire. The clinics involved were Bloomsbury clinic at Mortimer Market Centre, Graham Hayton Unit at Barts Health NHS Trust and 56 Dean Street of Chelsea and Westminster Hospitals. The questionnaire explored reasons for leaving their previous centre and reasons for choosing the new service. It was given to all patients who transferred to the service, who consented to complete it and was available in written English only. Patients were also asked whether they were aware if a medical summary had been received.

Results

A total of 111 patients completed the questionnaire. All questionnaires were fully completed; 47% (n = 52) transferred from services abroad, 37% (n = 41) within London and 16% (n = 18) transferred from outside of London. Of those who transferred from abroad, 33/52 came from European countries, 8/52 from Asia, 4/52 from Australia, 4/52 from North America and 3/52 from South America. Reasons for leaving the previous HIV clinic are shown in Table 1. Problems at the clinic included long waits for an appointment and when calling the clinic, not being able to see the same doctor, taking a long time to diagnose problems, problems with ordering in pharmacy, losing results and no walk-in service. General comments without elaborating further were also made about feeling patronised and uncomfortable, feeling like a number, and losing trust in staff. Four patients left their clinic due to the absence of specific services such as hepatitis C, cardiovascular, neurology and oncology. Financial reasons included private insurance cover ending and cost of medication being too expensive.

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Table 1.

Reasons patients gave for leaving their previous HIV clinic.

Reasons for leaving previous HIV clinic	Number of patients (n (%))
Location	83 (75)
Problems at the clinic	12 (11)
Confidentiality	5 (5)
Absence of specific services offered	4 (4)
Financial reasons	2 (2)
Employment	2 (2)
Lost to follow-up	2 (2)
Other (not specified)	1 (1)

The main reasons for choosing the service patients transferred to are shown in Figure 1. Other reasons included recommendation by a third party including previous clinic, doctor, charity (n = 6); service specific to the clinic including specialist clinic, particular doctor, patient representative support, weekend care (n = 6); previously attending that clinic (n = 5); via the internet (n = 1). OPEN IN VIEWER

Current BHIVA guidelines ¹ recommend a medical summary should be received within two weeks of transferring to a new a service. ¹ Twenty-seven per cent (26/95) of patients were aware of the summary being received at the time of their first appointment. 38% (16/42) who had transferred from abroad had received their summary, often bringing it with them. Of those who had transferred their care within the UK, 24% (4/17) of those transferring from outside London and 17% (6/36) of those transferring within London were aware of their summary being received. Thirty-five of 95 stated that it had not been received and 53/95 did not know.

Discussion

Most patients transferred their care to another HIV service for geographical reasons. Most were international transfers, the majority of whom were from Europe. These data have many implications on developing local services for the needs of patients, for example, ensuring translation services are available, and forming links with support groups for different cultural groups. Reasons for choosing their new clinic included a combination of location, reputation or a friend/family already attending the service. It is well observed that patients facing problems at their previous clinic may not have completed the questionnaire and therefore, 11% citing problems at their old clinic as a reason to transfer, may be an underestimate for the number transferring their care for this reason. Obtaining and reviewing regular patient feedback (both anonymous and healthcare professional linked), as well as regular patient focus groups to discuss the service with staff and involving patients in service changes and design, would enable problems to be addressed and avoided.

In the age of digital media, it is also interesting that only one patient mentioned finding their chosen clinic via the internet. However, patients were asked the reason for choosing their new clinic, and not how they found their clinic. Some of the options would indicate digital media was not necessarily used, for example friend/family recommendation. Patients seem to base their choice on recommendation. Clinics should consider broader promotion of their services and particularly the specialist services they offer, such as hepatitis treatment, contraception, co-morbidity clinics. This would enable patients to choose care tailored specifically to their healthcare needs. Organisations such as the Terrence Higgins Trust and Aidsmap can assist patients with finding information about other services, which healthcare professionals should promote to patients. Of those transferring within the UK, only 19% of patients were aware of their summary being received, half of those transferring from abroad. Clinicians should ensure the summaries are received within two weeks as per the BHIVA guidelines, to allow a smoother, appropriate and safe transition for patients to their new service. Furthermore, with the changes we are seeing within sexual health services, and the impact it is having on HIV care, the information from this report can be used to improve all services by improving and eliminating any of the concerns raised. This audit only included transfers to three large North London HIV clinics and may not be extrapolated to any patients transferring care in general.