With effective treatments available for HIV, the majority of people diagnosed with HIV in the UK now have a very good prognosis and long life expectancy. However people living with HIV still need to be able to access comprehensive health and social care to enable them to live well with HIV.
Many people will experience side effects from HIV medication and may also have conditions relating to their HIV status. People also need support and information to help them come to terms with an HIV diagnosis and manage their condition effectively.
Greater investment in health and social care is urgently needed as some people living with HIV are unable to access the services and support they need. We are campaigning for better treatment, care, support and information for people living with HIV and for people living with HIV to have more involvement in planning their own health and social care. We are also working to tackle the stigma and discrimination that people living with HIV can face in healthcare settings.
Priorities for wider care
People living with HIV are at higher risk of mental health problems but there are few mental health services with expertise in HIV-related issues. All HIV clinics should be providing comprehensive psychological care for service-users to support management of HIV and wider sexual health, adherence to medication and the broader well-being of people with HIV. NAT will be holding an expert seminar examining what psychological support services people living with HIV should receive. This will be held in February 2010 and a report of this seminar, with recommendations for action, will be published here later this year.
NAT welcomes the publication of the Government’s Green Paper, Shaping the future of care together, on the future of social care. This looks at how as a society we can both pay for increasing social care costs and improve the way services are delivered. In the next 20 years the number of people aged 85 and over will double. In addition, disabled people and those with long-term conditions are living longer and healthier lives. People living with HIV are part of this success with many people living into old age; the number of people over 50 accessing HIV care has grown from 1,679 in 1997 to 8,722 in 2007. The consequences of these successes are an additional 1.7 million people requiring social care, leaving a funding gap of £6billion. The Green Paper looks at how this funding gap can be met, as well as a setting out proposals for improving the current care model with a fairer, simpler system.
NAT congratulates the Government on looking at this important issue. However, it is disappointing that the Green Paper's emphasis is on older people rather than those with disabilities. The proposals as they stand lack detail making it difficult to comment; NAT hopes that before the Government takes forward any proposals around changes to disability benefits and social care they will publish more detailed plans for consultation. In response to the current Green Paper, NAT worked with George House Trust to ensure the views of people living with HIV are included in the debate on the future of social care. Focus groups were held in London and Manchester and the findings fed into our response. NAT will now continue to monitor the Government's plans for social care as they take this forward.
There has been some concern that the proposals within the Green Paper include the phasing out of Disability Living Allowance (DLA). NAT supports the DLA and Attendance Allowance (AA) as national, non-means tested benefits paid to disabled people, including people living with HIV, to meet their living costs. It is important to note that in the Green Paper, the Government has not proposed ending DLA, although it is asking people for their views on whether they should pool AA with social care money. This Green Paper represents an early stage in Government thinking and it is extremely unlikely that any proposals will be taken forward before the next election when a new Government may adopt a different policy. If people should wish to show their support for the continuation of AA and DLA there is currently a petition on this topic you can sign on the number 10 Downing Street website. Click here to see the petition
NAT's review of the AIDS Support Grant
NAT has recently carried out a review of how local authorities are using the AIDS Support Grant. The Grant, worth £21.8million in 2009/10, is a ring-fenced fund distributed by the Department of Health to local authorities to spend specifically on the social care needs of people living with HIV. NAT's independent review, the first ever of the Grant, identifies examples of good practice and makes recommendations for local authorities about how use of the Grant can be improved in the future.
In 2008/09 the size of the Grant given to local authorities ranged from £2,000 to £860,000. 106 (out of a possible 150) local authorities responded accounting for 81% of the Grant. In addition, 30 voluntary sector organisations contributed to the review.
The review found that the AIDS Support Grant remains an important source of social care funding for HIV. The findings showed that local authorities felt that services, including counseling, peer support, staff training, support for carers and respite care, may not continue if the Grant was no longer ring-fenced.
The review also identified a number of areas for improvement. Half of the local authorities had not carried out any form of needs assessment before deciding how to use their grant. In addition, the need for improved transparency of how the Grant is used was also identified. The report ends with a series of recommendations for local authorities, the Department of Health and people living with HIV and the organisations that support them, to esnure the Grant is used to make the biggest difference to the lives of people living with HIV. Read our report The AIDS Support Grant: Making a difference?
NHS
NAT works closely with the NHS in all four nations of the UK, which is responsible for providing treatment, care, support and information to people living with HIV. We are working to improve the commissioning and delivery of healthcare for people living with HIV and ensure that their needs and rights are considered at all levels.
NAT has done a review of confidentiality in healthcare for people living with HIV in the UK. Confidentiality in healthcare for people living with HIV focuses on why medical confidentiality matters for people living with HIV, what people should expect from the NHS, and what changes to NHS information sharing will mean for people living with HIV. The report has sections on contact tracing, criminalisation, testing in different settings, and new NHS IT systems.
The report recommends that the NHS could do more to reassure patients about their confidentiality, including displaying more prominent information about NHS confidentiality policies. It also asks that NHS staff, particularly in settings which have not traditionally provided HIV testing or care, receive early and specific training in HIV and confidentiality. NAT recommends that the organisations which oversee NHS IT programmes consistently monitor these programmes and seek feedback from service users who are living with HIV.
NAT is committed to campaigning for the NHS to provide the best possible treatment and care for people living with HIV, as well as prevention services to stop new infections. We keep abreast of new developments in the NHS and Department of Health to ensure that HIV is properly addressed at all times. Recently we have responded to the Health and Wellbeing consultation highlighting the need to include sexual health and HIV in its remit. You can read our response here.
We are calling for everyone living with HIV in the UK, irrespective of residency status, to be accessing HIV treatment - as clinically recommended - Accessing HIV treatment from the NHS.
As a priority we want Government to exempt HIV from any NHS charges.
In January 2008 Gordon Brown announced his intention to publish an NHS constitution to safeguard the core principles and values of the NHS. In June that year the government consulted on the draft constitution, and the final document was published in January 2009. You can read the constitution here. NAT welcomes the constitution as a statement of patient and staff rights, but we were disappointed by the lack of focus on public health. You can read our consultation response here.
English HIV and Sexual Health Commissioners Group
Our leadership and administrative support of the English HIV and Sexual Health Commissioners Group has seen improved attendance at meetings and an increase in engagement on HIV issues. The Department of Health's sexual health team is engaging actively with the group to identify commissioning best practice. This Group is a professional forum for those engaged in undertaking Sexual Health & HIV Commissioning activities in England. The group works together, and with the Department of Health, to ensure they deliver consistent and high quality services (prevention, treatment, care and support) across the country.
Stigma and discrimination in healthcare
A third of people living with HIV have experienced HIV-related discrimination and half of those experiences involved healthcare workers. Discrimination by healthcare professionals is most often reported in dental surgeries and GP practices. People living with HIV have been removed from GPs' lists and refused dental treatment after disclosing their status.
We are pushing for HIV training to be provided to all staff in the NHS.
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With effective treatments available for HIV, the majority of people diagnosed with HIV in the UK now have a very good prognosis and long life expectancy. However people living with HIV still need to be able to access comprehensive health and social care to enable them to live well with HIV.
Many people will experience side effects from HIV medication and may also have conditions relating to their HIV status. People also need support and information to help them come to terms with an HIV diagnosis and manage their condition effectively.
Greater investment in health and social care is urgently needed as some people living with HIV are unable to access the services and support they need. We are campaigning for better treatment, care, support and information for people living with HIV and for people living with HIV to have more involvement in planning their own health and social care. We are also working to tackle the stigma and discrimination that people living with HIV can face in healthcare settings.
Priorities for wider care
People living with HIV are at higher risk of mental health problems but there are few mental health services with expertise in HIV-related issues. All HIV clinics should be providing comprehensive psychological care for service-users to support management of HIV and wider sexual health, adherence to medication and the broader well-being of people with HIV. NAT will be holding an expert seminar examining what psychological support services people living with HIV should receive. This will be held in February 2010 and a report of this seminar, with recommendations for action, will be published here later this year.
NAT welcomes the publication of the Government’s Green Paper, Shaping the future of care together, on the future of social care. This looks at how as a society we can both pay for increasing social care costs and improve the way services are delivered. In the next 20 years the number of people aged 85 and over will double. In addition, disabled people and those with long-term conditions are living longer and healthier lives. People living with HIV are part of this success with many people living into old age; the number of people over 50 accessing HIV care has grown from 1,679 in 1997 to 8,722 in 2007. The consequences of these successes are an additional 1.7 million people requiring social care, leaving a funding gap of £6billion. The Green Paper looks at how this funding gap can be met, as well as a setting out proposals for improving the current care model with a fairer, simpler system.
NAT congratulates the Government on looking at this important issue. However, it is disappointing that the Green Paper's emphasis is on older people rather than those with disabilities. The proposals as they stand lack detail making it difficult to comment; NAT hopes that before the Government takes forward any proposals around changes to disability benefits and social care they will publish more detailed plans for consultation. In response to the current Green Paper, NAT worked with George House Trust to ensure the views of people living with HIV are included in the debate on the future of social care. Focus groups were held in London and Manchester and the findings fed into our response. NAT will now continue to monitor the Government's plans for social care as they take this forward.
There has been some concern that the proposals within the Green Paper include the phasing out of Disability Living Allowance (DLA). NAT supports the DLA and Attendance Allowance (AA) as national, non-means tested benefits paid to disabled people, including people living with HIV, to meet their living costs. It is important to note that in the Green Paper, the Government has not proposed ending DLA, although it is asking people for their views on whether they should pool AA with social care money. This Green Paper represents an early stage in Government thinking and it is extremely unlikely that any proposals will be taken forward before the next election when a new Government may adopt a different policy. If people should wish to show their support for the continuation of AA and DLA there is currently a petition on this topic you can sign on the number 10 Downing Street website. Click here to see the petition
NAT's review of the AIDS Support Grant
NAT has recently carried out a review of how local authorities are using the AIDS Support Grant. The Grant, worth £21.8million in 2009/10, is a ring-fenced fund distributed by the Department of Health to local authorities to spend specifically on the social care needs of people living with HIV. NAT's independent review, the first ever of the Grant, identifies examples of good practice and makes recommendations for local authorities about how use of the Grant can be improved in the future.
In 2008/09 the size of the Grant given to local authorities ranged from £2,000 to £860,000. 106 (out of a possible 150) local authorities responded accounting for 81% of the Grant. In addition, 30 voluntary sector organisations contributed to the review.
The review found that the AIDS Support Grant remains an important source of social care funding for HIV. The findings showed that local authorities felt that services, including counseling, peer support, staff training, support for carers and respite care, may not continue if the Grant was no longer ring-fenced.
The review also identified a number of areas for improvement. Half of the local authorities had not carried out any form of needs assessment before deciding how to use their grant. In addition, the need for improved transparency of how the Grant is used was also identified. The report ends with a series of recommendations for local authorities, the Department of Health and people living with HIV and the organisations that support them, to esnure the Grant is used to make the biggest difference to the lives of people living with HIV. Read our report The AIDS Support Grant: Making a difference?
NHS
NAT works closely with the NHS in all four nations of the UK, which is responsible for providing treatment, care, support and information to people living with HIV. We are working to improve the commissioning and delivery of healthcare for people living with HIV and ensure that their needs and rights are considered at all levels.
NAT has done a review of confidentiality in healthcare for people living with HIV in the UK. Confidentiality in healthcare for people living with HIV focuses on why medical confidentiality matters for people living with HIV, what people should expect from the NHS, and what changes to NHS information sharing will mean for people living with HIV. The report has sections on contact tracing, criminalisation, testing in different settings, and new NHS IT systems.
The report recommends that the NHS could do more to reassure patients about their confidentiality, including displaying more prominent information about NHS confidentiality policies. It also asks that NHS staff, particularly in settings which have not traditionally provided HIV testing or care, receive early and specific training in HIV and confidentiality. NAT recommends that the organisations which oversee NHS IT programmes consistently monitor these programmes and seek feedback from service users who are living with HIV.
Read our response to the Department of Health consultation on the confidentiality and disclosure of patient information.
NAT is committed to campaigning for the NHS to provide the best possible treatment and care for people living with HIV, as well as prevention services to stop new infections. We keep abreast of new developments in the NHS and Department of Health to ensure that HIV is properly addressed at all times. Recently we have responded to the Health and Wellbeing consultation highlighting the need to include sexual health and HIV in its remit. You can read our response here.
We are calling for everyone living with HIV in the UK, irrespective of residency status, to be accessing HIV treatment - as clinically recommended - Accessing HIV treatment from the NHS.
As a priority we want Government to exempt HIV from any NHS charges.
In January 2008 Gordon Brown announced his intention to publish an NHS constitution to safeguard the core principles and values of the NHS. In June that year the government consulted on the draft constitution, and the final document was published in January 2009. You can read the constitution here. NAT welcomes the constitution as a statement of patient and staff rights, but we were disappointed by the lack of focus on public health. You can read our consultation response here.
English HIV and Sexual Health Commissioners Group
Our leadership and administrative support of the English HIV and Sexual Health Commissioners Group has seen improved attendance at meetings and an increase in engagement on HIV issues. The Department of Health's sexual health team is engaging actively with the group to identify commissioning best practice. This Group is a professional forum for those engaged in undertaking Sexual Health & HIV Commissioning activities in England. The group works together, and with the Department of Health, to ensure they deliver consistent and high quality services (prevention, treatment, care and support) across the country.
Stigma and discrimination in healthcare
A third of people living with HIV have experienced HIV-related discrimination and half of those experiences involved healthcare workers. Discrimination by healthcare professionals is most often reported in dental surgeries and GP practices. People living with HIV have been removed from GPs' lists and refused dental treatment after disclosing their status.
We are pushing for HIV training to be provided to all staff in the NHS.
We work to bring an end to stigma and discrimination among healthcare workers and have produced information and advice for healthcare professionals on how to tackle stigma and discrimination. To find out what we are saying to healthcare professionals please visit this part of our site.
http://www.nat.org.uk/Our-thinking/Every-day-issues/Treatment-care-and-s...