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Providing coordinated care for people living with HIV

Cheryl Gower

by Cheryl Gowar

“People living with HIV aren't separating things into this is the diabetic doctor, this is the cardiologist... they have a series of issues and concerns and health problems and if there was a holistic ways of addressing those in a more connected way and with less onus on multiple visits, multiple investigations, why can things not be joined up so instead of four doctors they see one or two doctors who then communicate and join things up?”  - HIV consultant.

In the UK, 72 per cent of people who have been diagnosed with HIV also have at least one other long-term health condition (referred to as ‘comorbidity’ or ‘multimorbidity’). That figure is only likely to increase as the population living with HIV starts to age. Now, more than ever, it is vital that healthcare providers and commissioners think about how comorbidity amongst their patient cohort has created new demands on the way treatment and care should be delivered. 

Today, NAT launches our policy briefing Providing coordinated care for people living with HIV. It shows how emerging models of healthcare are starting to respond to those new demands and identifies principles for delivering responsive integrated care. 

Living with multimorbidity means dealing with multiple appointments and medications and being treated by different doctors with sometimes different opinions. Poor integration of care results in logistical frustrations, inefficiency and unnecessary expense to people living with HIV and to the healthcare system. It can cause delayed or poorly informed decision-making with consequences for patient care. And when it results in inconsistent or otherwise unmanageable advice, people living with HIV lose confidence that the healthcare system is responding to their needs appropriately. In this situation some choose to step away from certain aspects of their healthcare, which is understandable but potentially catastrophic. 

Generally, the healthcare system works in silos. Bodies don’t work that way. We need to move much closer towards a holistic system of treatment, where clinical experts are working together to respond to the way co-morbidities present in any given individual. Importantly, we must also think about patient voice. The efficiencies of a holistic system won’t be realised if they’re not targeted at what the person living with HIV wants from their healthcare. 

Here’s where it gets difficult because every person living with HIV is, naturally, different. Some live with comorbidities common to HIV while others have completely unrelated health conditions; some have stable HIV and are most concerned about managing their other health conditions; some have unmet need related to benefits, housing, social care or their immigration status; some live in an area of high HIV prevalence with comparatively high service provision whereas others live far from health and social support. Given the variability of patient experience, it’s vital an integrated system designed to respond to multimorbidity and complexity is flexible enough to cater for the full range of individual experiences and institutional settings. 

As well as integrated provision, holistic healthcare also needs to include support to coordinate care provision so the person living with HIV can navigate the integrated system to suits their needs and preferences. 

Some people will require care coordination support that contains strong elements of clinical and non-clinical intervention, For them the role would be filled best by a Clinical Nurse Specialist, or by a Social Care Coordinator embedded in the clinic who can navigate social support while also feeding directly into decisions made by clinicians. For others, support from peer navigators may be sufficient. The key feature of care coordination work is that it must be flexible and meet the needs of the person living with HIV. 

So, the obvious question is how can healthcare providers and commissioners respond to the diverse needs of people living with other long-term conditions as well as HIV? Look out for our next blog on Monday which provides some of the answers. 

Read the full briefing here.

This project was supported by funding from MSD UK as part of a support agreement. 

Cheryl Gowar is Policy & Campaigns Manager at NAT (National AIDS Trust)

Jan 31, 2020 By joe.lester