Chair: Colin Capner, Bristol seminar participant
Facilitator: Ruth Lowbury, Medical Foundation for AIDS and Sexual Health (MedFASH)
Rapporteurs: Sarah Lang-Jones, UKC and Justine Sswerwadda, PW
This workshop, held twice during the conference and attended by 22 people, was for anyone living with HIV seeking advocacy skills and help in managing their care, in partnership with health professionals.
Professional interest
Not working in HIV anymore so would like to update knowledge
Service users – want to know what the standards are and how these can be used when interacting with service providers
Want to influence Scottish standards
Ruth Lowbury gave a presentation about MedFASH’s recommended standards for NHS HIV services. Consultation was wide, including health professionals, voluntary sector agencies and people living with HIV. There were no national standards prior to these.
Services are coping with increasing numbers and diversity of clients, particularly outside London :
There is rising HIV incidence and prevalence
1 in 3 infections are undiagnosed
Complex treatment and monitoring is required
There are difficulties of ART and adherence
There are changing and complex user needs
People living with HIV are geographically spread
HIV is still potentially fatal
NHS modernisation
Tackling the lottery of care
The desire for innovative care pathways
Wanting a patient-centred NHS
Clinical networks across organisations
National Strategy for Sexual health and HIV
In the future:
Updated national standards for HIV treatment and care services will be developed
All HIV practitioners to work within a managed clinical network
They were developed by MedFASH
Involved a wide range of stakeholders
Published in October 2003
Endorsed by Department of Health (DH), British HIV Association (BHIVA) and Providers of AIDS Care and Treatment ( PACT )
There are 12 standards for care
There is 1 standard for managed service networks
The formalised structure copied the standard of diabetes
Achievable in all areas of England
Equity of access
Patient centred (in the document patients are referred to as ‘people living with HIV’)
Focus on outcomes
Multidisciplinary and multi-sector
Partnership in care
Delivery through managed service network
Networking works because what you can’t do alone you can do together. This has been learnt from good practice in cancer and heart disease. A network doesn’t necessarily need to be convened by health professionals. The standards have an implication across all disciplines.
Linked groups of services, professionals and organisations convened by commissioners
Span NHS primary, secondary and tertiary care, the voluntary sector, and social care
Work in a coordinated manner unconstrained by existing professional and organisational boundaries in order to ensure the equitable provision of high quality and effective services throughout the network area.
All people living with HIV should have access to services, which operate within a managed service network, in order to achieve the best possible treatment and care for individuals, as close as possible to where they live.
HIV services for adults (but not for paediatric care)
HIV specialist and non-HIV specialist
They compliment BHIVA guidelines
Prevention
Social Care
Aim
Standard
Rationale
Key interventions
Implications for service planning
Guidance on practice
Suggested audit indications
Service providers (planning, monitoring, audit, practice guidelines)
Commissioners (service specifications, resource allocation)
HIV service networks (shared protocols, referral pathways, training)
Strategic health authorities (performance management)
People with HIV (managing care in partnership, user advocacy)
Integral to the standards:
Empowerment of people to take control of their health and the management of their HIV
Involvement of people with HIV in the planning and monitoring of services
Participation in the development of local service networks
All care should take place in a partnership between people with HIV and care providers so that there is joint decision making and support to adopt and maintain a healthy lifestyle
Services should recognise the impact of HIV infection on an individual and the stigma and social exclusion unique to HIV
The NHS, local authorities and partner agencies should set up a multi-agency planning group to develop, implement and evaluate a network of HIV and social care services
This group should ensure full appropriate and adequately resourced involvement in the HIV service network of statutory and voluntary, social and healthcare providers and service users
Participants felt that it was a good idea that the development and publication of the document has been done but some were disappointed about the initial service-user consultation and participation. To many present, it was the first time they had seen and heard of the standards. It was suggested in future to run focus groups or workshops to comment on the content before publication.
Is there a body that monitors how these standards are interpreted and delivered?
Ruth explained that this is only at a local level. Healthcare commissioners will be monitoring all services but this will not be in depth. One participant said that he now felt that he could use the document to approach his local patient user group, however higher up involvement would be more difficult.
The comment was made that those Primary Care Trusts and providers who will use these standards effectively are likely to be those who are good anyway. The suggestion was made that organisations producing newsletters could include questions around the standards by including surveys in mailings.
There was a discussion around the networking between specialists and GPs and how service-users can encourage ongoing dialogue. Sometimes when people disclose their status this can highlight the need for training. New GP contracts that will include payment for enhanced services may improve routine screening.
People living with HIV still had problems getting NHS dentists
The publication could act as an important manual for HIV services for people living with HIV.
Indicators were added. These are the methods of monitoring if and to what degree the Standards have been implemented by the individual PCT’s in an area. As the indicators suggested in the report have not yet been tried in practice, there was a suggestion that other indicators might be needed or those already suggested modified in the light of experience.
Campaigning organisations who are lobbying for better standards of care should be added to the list of individuals/organisations who might find the Standards useful as a tool for advancing their aims.
MedFASH would welcome feedback about any aspect of the standards.
The standards set out a framework for what services people living with HIV should reasonably expect to be provided by their local health community
They cover standards for all services from prevention and early diagnosis of HIV, through to care post diagnosis and support for individuals (and their carers) who develop related illnesses including progression to AIDS and support towards a dignified death
There are suggestions for monitoring how effective and complete implementation of the standards have been
People living with HIV or caring for someone with HIV should read this report
People living with HIV should review the MedFASH standards against the care they are receiving
People living with HIV, carers and HIV organisations should contact MedFASH if local experiences of healthcare do not meet MedFASH standards
This workshop was evaluated by 19 people between the ages of 27 and 62 (average age 41).
Gender
8 male, 7 female, 4 not stated
Ethnicity
9 black African, 5 white, 5 not stated
Sexuality
10 heterosexual, 5 not stated, 4 gay
Usefulness
Very useful |
Useful |
Not useful |
53%(10) |
47% (9) |
0% (0) |
NOBODY said not useful
9 people set action points
Use report as campaigning tool
Use to improve services at GP & HIV clinic
Make local health providers aware of MedFASH standards
Review item for use in my healthcare
Be more involved on local level, monitor standards
Move on to Pregnancy And Childbirth