Want to Have a Say?

posted: 11/10/2010

George House Trust wants four people to join our SMART group to have a say about our services. The deadline for applying is Monday 1 November.

We believe involving people with HIV in our services is really important. As part of our Service User Involvement Strategy, our SMART group, the Service Monitoring and Review Team, is a key way for people to have a real say in our services.

African and gay men wanted especially

SMART is a team of 16 people who use George House Trust services. SMART reports directly to the Board of George House Trust. We want 4 people to join SMART and we particularly want HIV positive African and gay men to apply, as both of these are under-represented on SMART.

SMART group meets every 2 - 3 months. You will be sent copies of papers to read and think about before the meeting. SMART meetings discuss all aspects of our services. SMART agrees a work plan for what we will discuss each year.

What does SMART do?
SMART involves people with HIV who use services to examine how we deliver services and suggests ways to develop and improve services.

Why get involved?
SMART is one way to be more involved in George House Trust and put something back. Involvement informs you about service delivery and developments as well as how we monitor and evaluate services. Becoming involved in SMART builds your skills and experiences.

What skills and experience do I need to join SMART?

Here are the things we expect of people in the SMART:

• Ability to maintain confidentiality and keep our ground rules at all times
• Being committed to service user involvement and providing feedback
• Making the time to read all the papers before the meetings
• Interested in all services George House Trust provides
• Being committed to working together as part of the SMART team
• To broadly support the work of George House Trust

Deadline: applications must be returned to Lynda by Monday 1st November .

SMART application pack

1. Information and what we are looking for
2. SMART Terms of Reference
3. Application form

Information from and applications to Lynda Shentall, Director of Services by email or phone 0161 274 4499 

Self-Monitoring HIV

posted: 06/05/2009

People living with HIV could soon monitor their health at home using a hand-held device, similar to those used by diabetics. People would only need to go to the HIV clinic when there are problems.
 

Scientists at three of London's largest research centres won a £2m grant to develop a hi-tech, finger prick blood-testing gadget. The device's tiny mechanical sensors - microcantilever arrays - measure HIV levels to warn of flare-ups – such as when the viral load becomes detectable. The display will alert the user they need to visit a doctor.

Investigator Dr Anna-Maria Geretti, an NHS consultant and co-investigator based at the Royal Free Hospital, said: "If patients neglect to take their treatments or need prompting to see their GP, the device will provide a simple way of letting them know. It will really empower HIV patients to keep a close eye on their health and their treatments."
 

Instead of going to the HIV clinic every three or so months "just in case", people who self-monitor would only need to see their doctor when things were going wrong.
 

As well as reducing HIV clinic visits, it could make most difference in developing countries where rapid and affordable ways to monitor HIV patients are urgently needed, say the researchers. 
The microcantilever arrays are coated so that HIV and other proteins which mark HIV disease progression, stick to them.
 

These cause the highly-sensitive sensors to bend and how far it bends shows the level in the body, explained lead investigator Dr Rachel McKendry, of University College London and the London Centre for Nanotechnology.
 

"We have used microcantilever arrays to investigate drug resistance in superbugs such as MRSA, and are excited by the opportunity to extend this approach to detecting HIV markers," she said. Dr McKendry is working with Imperial College London, Cambridge Medical Innovations, Sphere Medical Ltd and BionanoConsulting on the three-year project to develop the prototype hand-held device for clinical trials.
 

Lisa Power of the Terrence Higgins Trust said: "This is certainly a very good idea. If you have diabetes you can check your blood sugar levels. Similarly, it would be very useful if HIV patients could check their own viral measures, say, once a month. It would not replace specialist advice, but it would be a way to reduce a patient's dependence on doctors."
 

Personal electronic devices for people with long-term conditions to check their health are becoming much more common. They are a way for people to take more control of their own health. It will help demedicalise HIV, and will allow clinics to spend more time with people needing more care and support. The downside can be the cost, because often these are not paid by the NHS but needs a committed patient with money.
 

Source

 

Web HIV Health Tracker

posted: 07/04/2009

My Health Tracker can help you organize your HIV treatment information privately and securely in one place. This way, you can take better charge over your health, and you and your doctor can have even more productive conversations about your treatment.

It's a tool anyone can use that is provided by the USA website TheBody.com. This website is like the UK's main treatment and prevention HIV website NAM / aidsmap.com.

It has 4 sections

1. Labs is a place to keep your laboratory results such as CD4 counts and viral loads to cholesterol levels and liver enzymes.
2. Meds is for you to note what treatments you are taking, doses, times, etc
3. Journal is for anything of note in your life from random thoughts, questions to ask the doctor at the next visit, anything that affects your overall quality of life
4. Reports is where you can easily create dozens of different graphs and other reports. Print them. Download them. E-mail them to yourself or your doctor.

You can just try it as a guest without giving them an email address. All the details will be deleted automatically.

If you find it useful you can then simply sign up by giving a user name and password.

You can choose whether to give an email address. We suggest you do in case you lose or forget your username and password.

There's an agreement you have to accept by tickbox if you sign up.

HeathTracker is here

i-Base in the UK produce free printed "passports" for you to use in a similar way.