Living with HIV

Promoting the well-being and quality of life of people living with HIV is central to NAT's work. NAT campaigns for better treatment and support, an end to stigma and discrimination and more involvement of people living with HIV in their health and social care.

There are many opportunities for people living with HIV to get involved in health and social care. These range from becoming actively involved with your clinician in the decisions relating to your own treatment and care, to becoming an advocate for more effective planning and delivery of local HIV services, as part of your primary care trust patients' forum.

This effort is known as Positive People's Involvement, (PPI) or Greater Involvement of People Living with HIV and AIDS (GIPA).

PPI is not simply an optional extra but the fundamental human right of people living with HIV. This is affirmed in a number of historic declarations, such as the Paris AIDS Summit Declaration (1994), the United Nations General Assembly Special Session on AIDS (UNGASS) (2001) and the Dublin Declaration (2004).

NAT's guide to the needs of people living with HIV aims to inform those providing services of some the challenges and issues of concern.

Positive Action 2008

On 1 March 2008 nearly 100 people living with HIV gathered together for the Positive Action 2008 conference. The event provided an opportunity for people to discuss issues such as employment, education, criminal prosecution, influencing services and stigma and discrimination. As part of the day, attendees came up with an 'Agenda for Action', key steps to improve the lives of people living with HIV in the UK. This is featured in the report, alongside a summary of the day. You can read the report here.

NAT would like to hear from conference attendees who have taken forward any part of this agenda, either individually or in partnership with their local organisation. Please use the feedback form to let us know what you have been doing.
 
The topics discussed at the Positive Action 2008 conference came out of an extensive regional consultation led by UKC. NAT pulled together the outcomes of this process in a report, Key issues for people living with HIV. You can download a copy of this report here.  

Disability Living Allowance: Changes to the Special Rules

The Special Rules provision of the Disability Living Allowance (DLA) apply to individuals who have been diagnosed with a terminal illness and are reasonably expected to die within six months. Applications are fast tracked to the highest care component, rather than having to wait the usual qualifying period of three months for DLA.

The Disability and Carers Service (DCS) has decided to review all cases where an individual has been on DLA for more than three years. This comes after a change to the Special Rules provision in 2006 which set a three year limit on the payments. DCS started their review in November 2007 and over a 12 month period will look at 5,000 cases. They are first looking at people under the age of 55.

In the past people diagnosed with HIV were considered to be terminally ill and were included under the Special Rules provision. However, given the increase in successful treatment, people living with HIV can usually expect to live for many years.  Given increased life expectancy, it is expected that many HIV positive people who are on the highest rate of DLA will have their claims reviewed. The review looks at an individual’s up-to-date medical condition and information from their medical advisors.

Those who are reviewed and found not to qualify for the Special Rules provision may lose the high rate care component of their DLA.   People will still be able to get DLA as long as they can show they qualify under the normal rules. A drop in DLA may also mean changes to the amount of income support and housing/council tax benefits received, but all other benefits, such as Incapacity Benefit, should remain the same.

No one will have to pay back any money they received whilst included in the Special Rules provision.  Individuals will also be given the opportunity to appeal the decision.

For more information on what to do if you receive DLA and are included in this review visit the George House Trust website Disability Living Allowance Changes.