Email experience .....

As always edited to protect he author.

1st email.

"I know we are worried about that is happening to our human rights
with the changes in benefits.

Just a thought or it may be a coincidence, but are you aware of
people being told by the clinics they are having to change combo? My
reasons for thinking about this, is that I am being asked to changed
and friends of mine have also been told by the consultants they
should change. Is it that the consultants are being put under
pressure to get people on to more stable combos so they can not use
the excuse of side effects are stopping me from working and it is
less tablets to take and you can take then at home at night away from
prying eyes?

Questions, questions, questions!!!"

My reply:

"This is probably more due to cost than anything else. Putting people on more stable combo's reduces the overall cost load to the NHS because there is less need to provide ongoing support services. Usually accessed by patients who have combo side effect issues.

The cost of drugs to treat side effects, cost of a bed should someone need to be hospitalised because of side effects are what the NHS is trying to reduce.

The current benefit reviews have no impact on this from what medics have told me. Quite the opposite they are worried about their patients.

I would be worried about resistance and the longer term options for medication if I was being asked to change my medication. If my current combo is working I wouldn't want to change. Keeping all the drugs, resistance allowing, in reserve should I need them.

However, if you are taking AZT they tend to want you off this if you have been on it for 5 years or more.

Hope this helps & thanks for your email."

2nd Email:

"Well in Eastbourne and Hastings clinics, they did
a massive swap of people on to Kivexa me included
and I had no reason to change off of
combivir. The clinics here in East Sussex are
more like a sponsorship deal with Kivexa. All the
pens, pads dairies have all the Kivexa logos on
them. I understand that Brighton is now starting to take the same route.

My friends that are under Brighton have just been
told that they should change off the current
combo and have not been given any reasons why.

I was forced back to work by the clinic in
Eastbourne and I have to say I am dead on my
feet. My health is worse now and a CD4 of less
that 325 and dropping. They have stated clearly
that it is not in the remit of the clinic to sign
people off and that all HIV patients should be
working. I am sure and I know the Community
Support Coordinator at THT in Eastboure will
agree, that we were guinea pigs 18 months ago on
how things were going to change and she was told
to shut up by management over this matter. As
people were being visited at home by the DWP and
interviewed and benefits taken away and told they are fit for work.

I wish everyone luck, but I do feel it will end
up in costing the country more in the long run
and the NHS if they try and get people back to work."

My reply:

"Can I post this to the blog?

I will edit it to protect your confidentiality."

3rd Email:

"

Since THT has become this great Corporate body, we have no one fighting our corner anymore. I am sure that as part of the governments drive to get people back to work and paying voluntary bodies to get people back to work by results, THT will be offering employment services very soon and like they have sneaked the "sexual Health" into the name and how opening Sexual health clinics.

From another website :

"February 19, 2008

Terrence Higgins Trust opens new HIV and sexual health centre in the Wirral



On 22nd February at 12.30pm HIV & sexual health charity Terrence Higgins Trust (THT), will be officially opening its new centre in Birkenhead which will serve the whole of the Wirral.

The opening will be attended by celebrity supporter Claire Sweeney, the Mayor of Wirral, Councillor Phil Gilchrist and the Chairman of Wirral Primary Care Trust, Frances Street. It will be an opportunity for clients, partner agencies and other interested parties to meet THT staff and members of the Executive Team to discuss plans for services in the area.

The new office, funded by Wirral Primary Care Trust will provide a range of services:

• Health promotion outreach work focused on preventing HIV from being passed on
• Support groups and health advice for people affected by HIV and sexual ill health
• One to one support
• General information on sexually transmitted infections
• Condoms and safer sex information
• Counselling
• Raising sexual health awareness through training and education

Representatives from the NHS and social services, other voluntary organisations, THT volunteers and staff will all be attending the open day.

Ewan Jenkins, Manager of the new office said “We’re delighted to be opening an office here in the Wirral. We’re looking forward to working with other organisations in the region to increase awareness of sexual health and support people who are living with HIV in the area.”"



Ends


So what next, the NHS will out source the clinics to THT.......God help us all!"