Eileen Nixon. Brighton and Sussex University Hospitals NHS Trust. 15 th Annual Conference of the National HIV Nurses Association (NHIVNA)



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15 th Annual Conference of the National HIV Nurses Association (NHIVNA) Eileen Nixon Brighton and Sussex University Hospitals NHS Trust 27-28 June 2013- The International Convention Centre, Birmingham

Serving two masters: any willing provider Eileen Nixon Nurse Consultant Brighton and Sussex University Hospitals

BHIVA Standard 3 Provision of outpatient treatment and care for HIV, and access to care for complex morbidity

Standard 3 Summary People with HIV attending an outpatient HIV service should have their HIV infection monitored and treated safely in accordance with national guidance, and be able to access a comprehensive range of specialist comorbidity services as required British HIV Association Standards of Care for People with HIV 2013 (2012, 19)

Aim of Lecture To explore how people with HIV perceive their routine outpatient healthcare needs To identify how this relates to the changing healthcare environment To consider the implications for any willing provider in delivering HIV care

Title of lecture delivered by Sir Robert Ormrod in Faculty of Law, University of Birmingham, 1973

Gospel preached at Papal visit in Copton Park, Birmingham, 2010

No one can serve two masters. Either you will hate the one and love the other, or you will be devoted to the one and despise the other. You cannot serve both God and money Matthew 6:24 Sermon on the Mount

Any willing provider (AWP) AWP has been defined nationally in its application to routine elective care, but can be adapted locally to facilitate patient choice in other services The Any Willing Provider (AWP) model is designed to facilitate patient choice and offers rewards to providers that attract patients by demonstrating high levels of quality, responsiveness and user satisfaction Procurement Guide for Commissioners of NHS-Funded Services, Department of Health (2010, 7)

Change to any qualified provider

Serving two masters in HIV healthcare? BHIVA Standards of Care O Do they protect the interests of the specialists at the expense of HIV patients and the health economy? Any Willing (Qualified) Provider O Is the new healthcare market ready to meet the needs of HIV patients?

Routine outpatient care

Keypad Question Q1: What percentage of your caseload would you estimate have routine outpatient care needs? 20% 2. 40% 3. 60% 4. 80% 1.

HIV Outpatients Clinical Care Pathway Categories Category 1 New Patients Newly diagnosed within one year or new to antiretroviral therapy within one year Category 2 Stable Patients Stable* on or off antiretroviral therapy for > 1year *Defined by CD4 count >350 cells/mm and no active AIDS diagnoses Category 3 Complex patients Current active AIDS diagnosis, co-morbidity such as TB, Hepatitis C, end organ disease, HIV related malignancy, persistent viraemia on treatment, pregnancy, active mental illness 10% 80% 10% Department of Health. (2012). HIV Adult Care Pathway

Patient perception of stability O I went from being up in the 20,000s sort of viral load figure which I was told wasn t high but to me 20,000 is a high sum of money so it seems like a high figure so within two months to go non-detectable and stay nondetectable for four years to me that s important Sebastian, Age 38 Extract from patient interviews HIV Models of Care PhD Study

Anticipation O I think when you've got this you re always conscious that something at some point is going to go wrong I come in anticipation that the results will be good but always with a very slight heavy head maybe if that's the word there's always a chance that this might be the one where the results aren't quite what I want them to be Simon, Age 56 Extract from patient interviews HIV Models of Care PhD Study

Symptoms in HIV O High profile of physical and psychological symptoms in people with HIV found in a number of studies O Spirig, Moody and Battegay et al 2005 O Harding and Molloy 2006 O Harding and Molloy 2008 O Mosack, Weinhardt and Kelly et al 2008 O Vincenzi, Moody and Spirig 2009 O Harding, Lampe and Norwood et al 2009 O Fierz, Nicca and Spirig 2012 O Sigma 2013

Perceived Social Consequences of HIV Positive social identity HIV more integrated into life More social isolation factors Negative social identity HIV Models of Care PhD Study

Less attachment to HIV services HIV Models of Care PhD Study Factors in patient perceptions of HIV Preferences in HIV Service Utilisation Minimal Symptoms Minimal anxiety about future health Minimal impact on social integration Patients who advocate less face-to-face contact with HIV services Current/previous health issues Anxiety about future health Some impact on social integration Patients who view HIV services as to maintaining health Current/previous health issues Anxiety about future health Socially isolated Patients who view current HIV service model as essential support structure More attachment to HIV services

Modelled data of stable HIV patients in face to face and in virtual clinics 1000 900 800 700 600 500 400 300 200 100 0 Fictional Caseload of 1000 patients Estimated number of stable patients (80% caseload) = 800 Patients opting for virtual follow-up clinics (25% of caseload) = 250 Source: Merged data from two HIV services from HIV Models of Care PhD Study

Patient Experience

Keypad Question O Q2: What do you think is the most important aspect of care for people with HIV? 1. Access to treatment? 2. Relationships with staff? 3. Quality of care? 4. Travelling distance to clinic? 5. All of the above?

Important factors in HIV healthcare O 47% had used the same clinic since diagnosis or for a minimum of 11 years O Staff excellence and reputation, comfort and ease of access O Delivering a range of services O Atmosphere and continuity of main healthcare provider Sigma Research 2013

HIV Models of Care PhD Study Values in HIV healthcare Therapeutic Relationships Feeling Accepted Working Together Potential links with engagement in HIV care

What does this mean for other potential providers of HIV care? O There are high levels of satisfaction with current HIV model of care O There is considerable evidence of patient concern for GP involvement in care O How do the values and perceived needs of people with HIV translate across new providers?

Sustainability of HIV care O More diversification menu of services O Supported integration with other services O Meaningful patient empowerment O Adapting other chronic disease models O Stigma reduction

One size does not fit all

Conclusion O The main master we serve is the patient O As the healthcare climate changes, further evidence is required to link care provision to outcomes O Our primary goal should be to respond to the diversity of patient need whoever is providing care and wherever care is delivered