Health and care services must better support people ageing with HIV
By Cheryl Gowar
In the UK, we are fast approaching the time when over half the population living with HIV will be over 50. The provision of care that responds to the needs of older people living with HIV will become an increasingly pressing issue for healthcare providers and commissioners.
With the help of Blue Sky Trust and George House Trust, National AIDS Trust conducted pilot studies in Newcastle and Greater Manchester to identify health and wider care needs and concerns among people living with HIV as they age, and the appropriate responses to these needs. This week we published two briefings about what we found out.
The people ageing with HIV we interviewed told us about problems with the integration of their care. Many felt their clinicians didn’t communicate effectively and that healthcare providers outside their HIV clinic didn’t understand HIV well enough. There was little sense their wider needs, such as those related to social care, were well integrated with their healthcare. Some expressed concerns about receiving conflicting medical advice or lack of attention to contraindications from prescribers.
People living with HIV in both places also told us information sharing systems aren’t adequate. Many were concerned some of their healthcare providers didn’t have access to their information, and they had to carry health-related information between providers themselves. Some also wanted better access to their own healthcare information and clarity on who can see their healthcare data.
The availability of good quality social care, mental health support, and specialist HIV support services was another key concern raised in our pilot sites.
These findings may seem familiar for all people living with HIV – not just for people who are ageing. And we would expect this to be the case, although as people develop more needs as they age the issues raised are likely to be more urgent and felt more intensely.
But there were additional concerns for people relating to getting older. Many people were concerned about their existing or expected reduced capacity to manage their own care. Whether not being able to remember all the drugs they take resulting in potential contraindication or increased dependency on a social care system that is neither sufficient nor HIV-aware, time and time again we heard concerns the system wasn’t in place to support people as they aged. Who will catch them if they fall?
Our briefings provide specific recommendations for how these concerns can be responded to in Greater Manchester and Newcastle. They also discuss the value of care coordinators; someone to oversee the multiple, intersecting, and specific needs of each person ageing with HIV. While consultants, clinical nurse specialists, HIV support services and GPs are already providing the best coordination support they can, it’s not a care need that’s recognised adequately.
Let’s be clear: getting older with HIV isn’t just about comorbidities and health care. But if people living with HIV are going to be able to live the long, happy and productive lives they should be able to expect, providers and commissioners need to be thinking about how to deliver healthcare that suits their needs.
To respond to the broad range of requirements an older person living with HIV may have, we need a health and care system that allows for effective integration and coordination of various aspects of care and is flexible enough to meet individual needs.
Unsurprisingly, our pilots showed people ageing with HIV in Greater Manchester had similar concerns to those living with HIV in Newcastle. But their context differs, in terms of HIV prevalence and other demographics and the way healthcare systems are provided. And this context will be different in Brighton, Leeds, Bristol, Birmingham, or wherever people are ageing with HIV.
As NHS services move towards being determined more locally, so the variations in context will continue. But people ageing with HIV in England should expect the same standard of care wherever they are (of course, much of this applies to other UK nations working within different healthcare systems). The onus is on local providers and commissioners to come together and consider how to respond to this growing need. We will be working to make sure the needs of people living and ageing with HIV is firmly on their agenda.
Cheryl Gowar is Policy & Campaigns Manager at National AIDS Trust. Follow her on Twitter at @cherylgowar