Comment

14.11.14

Growing older positively: The challenge of commissioning for an ageing HIV population

Source: National Health Executive Nov/Dec 2014

Matt James, research fellow at think tank 2020health, and its chief executive Julia Manning, argue that the commissioning process has been fractured by distinguishing between the treatment and prevention of HIV.

American comedian George Burns may have quipped, “You can’t help getting older but you don’t have to get old”, but the question remains: when does someone become ‘older’?

To many people, the age of 50 may not seem to be ‘old’; but increasingly 50 is being used to record and analyse statistics on ‘older’ people living with HIV. In 2012, one in four adults who were living with an HIV diagnosis in England were aged 50 years and over. Older people are the fastest-growing group in the UK who are living with HIV and it was estimated that in 2012, 24,510 people living with HIV in the UK were aged 50 or over. These numbers are set to double over the next five years.

Generally those people aged 50-plus who are living with HIV fall into two general groups:

  • Those people who acquired HIV early on in their life and who are living longer as a result of effective therapies and treatment
  • Those people who acquire HIV later on in life

More people than ever before are surviving with HIV as a result of the advances in effective treatment. Some of the latest research in this area indicates that in the UK, life expectancy for people who are HIV positive and who are on successful treatment programmes is now considered the same as someone without the condition.

Despite these advances however, older people with HIV remain at a disadvantage in comparison to their peers. From poor levels of health to access to social care and financial security, the older person living with HIV faces significant challenges. The interaction between HIV and ageing presents highly complex clinical challenges, partly because the disease and conditions associated with ageing present earlier or more severely in people who also have HIV.

Increased life expectancy, with the associated above-average risk for cardiovascular, metabolic, bone and neurological problems, are layered on top of an HIV diagnosis which is already a complex medical condition to manage and treat. This compounding challenge calls for the need to review the way HIV care and treatment are designed, managed and delivered.

One of 2020health’s recent reports, ‘Growing older positively’, undertook such a review with the aim of contributing to the ongoing conversation on this important issue. From our research we identified several key challenges, five of which are discussed below, which need to be addressed if everyone with HIV is to live a long and fulfilled life with appropriate care and support.

  1. a) Commissioning of treatment and prevention

The main strengths of the new commissioning arrangements for the treatment and prevention of HIV are perceived to be that there is now a national and robust service specification for HIV and that specialised services are now clinician-led. This allows for expert and professional input to help feed into and shape decision-making as well as, theoretically, offering standardisation of care across England.

In contrast, there is a perception that the commissioning process has been fractured by distinguishing between treatment and prevention. By dividing up the commissioning of treatment and prevention, and assigning responsibility to different bodies, there is concern that the two will not work in tandem and support one another. Prevention measures need to have a more clearly defined place in the current commissioning structure, aside from the immediate value they bring to the NHS.

Perhaps in recognition of these weaknesses, Public Health England brought out its National Framework for HIV, Sexual and Reproductive Health Commissioning, first published in November 2013 and updated in September 2014, aiming to bring together the commissioning responsibilities of local government, CCGs and NHS England.

The new arrangements need time to bed-in and an appropriate evaluation must take place before any conclusions are drawn, but consideration needs to be given to coordinating the separate services of treatment and prevention, as this is clearly an unhelpful division. There is a risk that splitting responsibilities according to treatment and prevention could create a gap in the provision of services.

In order to allay concerns, close monitoring and regular reporting on key performance indicators (KPIs) for treatment and prevention need to be developed quickly. In support of this, there need to be efforts to improve dialogue between commissioners and third sector/voluntary sector organisations.

  1. b) Primary care and other services

It is important to improve the quality of primary care for people with HIV and establish better interaction between HIV specialists and other community clinicians, in order to provide good quality patient-centred care.

The flow of communication between primary and secondary care can very often break down, leading to resources being wasted through duplication of services and a lack of understanding of the patient’s treatment programme. For instance, routine patient tests are often duplicated – GP surgeries may undertake blood tests to fulfil QOF objectives, replicating work undertaken by specialists and wasting patients’ time.

Owing to limited understanding of HIV, GPs can often refer patients with HIV back to their HIV clinic for unnecessary reasons. To try to develop greater GP involvement, various models have been piloted. Consideration needs to be given to what elements of best practice can be learnt from these models and how this might then be applied and replicated nationally. We hope in particular that patient access to their GP record and other medical records could facilitate communication and improve the quality of care.

  1. c) HIV and the ageing process

Managing care for the older person is generally complex because the ageing process presents physical, psychological and social challenges. Whereas a bone fracture in a younger person may not present too many added complications, in someone older it can lead to dehydration, bruising, pneumonia and immobility. This restriction of activity can then lead to feelings of isolation, depression and loss of confidence. An already challenging situation is made more complex in the case of an older person living with HIV.

The need for effective long-term condition management is becoming an increasingly relevant component to caring for those living with HIV. The best models and approaches to fulfil this are still a matter of debate. Research and engagement in this area will require the active sharing of information, insights and findings between different groups, supported by effective commissioning of services and appropriate service design. Multi-disciplinary team involvement is critical to this, allowing for HIV clinicians to work together with specialist clinicians and with geriatricians in helping patients manage common co-morbidities.

  1. d) Mental health

Many older people living with HIV report concerns over their mental health as a result of particularly high levels of stress and anxiety associated with living with a life-threatening condition, public stigma and frequent complex information change.

Advances in clinical practice mean that there is now high-quality care for the physical management of HIV, but it is the provision of HIV-specific mental health and social care support that requires further development.

This is about funding, but also identifying and accepting that this kind of support is required. Specific support programmes can then be developed with appropriate funding. Key elements of support programmes need to include access to mental health services and therapies and the space and opportunity to meet with others for peer support.

  1. e) Care provision

Care service providers need to be better informed and equipped to help care for those living longer with HIV. Many providers have not needed to respond to the care needs of the older person living with HIV so they currently have very limited experience. Skills and training therefore need to be improved in this area. This provides a strategic opportunity to establish what a good care provider should offer in terms of services and facilities for all those suffering with long-term conditions.

Underpinning all of this is the need for any refashioning and redesign of services to focus on empowering older patients to live a life with HIV. Rather than providing for older patients, services now need to work with the patient, balancing good HIV treatment with treatment for co-morbidities and integrating social care support. The voice of this group has effected many changes and we must harness this not only to improve the quality of later life for those with HIV, but for all older people.

References

Beer, G., James, M., 2014. ‘Growing older positively: The challenge of ageing with HIV’: 2020health in association with Gilead.

British HIV Association (BHIVA). 2012. Standards of Care for People Living with HIV 2013. London: BHIVA. 

May, M et. al. 2011. ‘Impact of late diagnosis and treatment on life expectancy in people with HIV-1: UK Collaborative HIV Cohort (UK CHIC) Study’ BMJ 343:d60616

May, M., Gompels, M. & Sabin, C. 2012. ‘Life expectancy of HIV-1-positive individuals approaches normal conditional on response to antiretroviral therapy: UK Collaborative HIV Cohort Study’.  Journal of the International AIDS Society 2012, 15 (Suppl 4):18078.

May, M.T., Gompels, M., Delpech, V., Porter, K., Orkin, C., Kegg, S., Hay, P., Johnson, M., Palfreeman, A., Gilson, R., Chadwick, D., Martin, F., Hill, T., Walsh, J., Post, F., Fisher, M., Ainsworth, J., Jose, S., Leen, C., Nelson, M., Anderson, J., Sabin, C., for the UK Collaborative HIV Cohort (UK CHIC) Study. 2014. ‘Impact on life expectancy of HIV-1 positive individuals of CD4+ cell count and viral load response to antiretroviral therapy: UK cohort study’.  Journal of the International AIDS Society 2014.  doi: 10.1097/QAD.0000000000000243

Public Health England. 2013. HIV in the United Kingdom: 2013 Report. London: Public Health England.

Power, L., Bell, M., Freemantle, I. 2010. A national study of ageing and HIV (50 Plus). York: Joseph Rowntree Foundation.

Rosenfeld, D. et al. 2012. HIV and Later Life (HALL) Study. MRC Lifelong Health and Well-being Programme and Keele University.

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