- Meeting on Monday NAM/THT see main website.
- No reply yet from Government Ministers for the letters written last weekend.
- Updates to blog & website
Saturday 23 February 2008
Update.
Friday 22 February 2008
Saw my medic today
My medic has received my initial medical report requested. We talked about it, though I pointed out it seemed to matter very little about what was written in any detail as I still expected to receive a DL556 application form as was the process of present.
We agreed what would be written about existing medical conditions.
If you have received the initial form (DBD551) it is well worth getting in touch with your medic to discuss the medical report they will be asked for.
The problem medics face is that they have a legal obligation to tell the truth (as do you). However what they might write maybe interpreted in a way that leads to a loss or reduction on benefit. They are caught. They fully understand the implications of any loss of income in terms of overall health to there patients.
The State almost relies on people giving up at the "first hurdle" with any benefit process. That is why I always advocate you APPEAL any decision where you feel your loss or reduction of benefit is unfair.
We agreed what would be written about existing medical conditions.
If you have received the initial form (DBD551) it is well worth getting in touch with your medic to discuss the medical report they will be asked for.
The problem medics face is that they have a legal obligation to tell the truth (as do you). However what they might write maybe interpreted in a way that leads to a loss or reduction on benefit. They are caught. They fully understand the implications of any loss of income in terms of overall health to there patients.
The State almost relies on people giving up at the "first hurdle" with any benefit process. That is why I always advocate you APPEAL any decision where you feel your loss or reduction of benefit is unfair.
Wednesday 20 February 2008
Chat conversation from another website.
I have been having an online chat with someone on another website. They too are facing the same issues as we all are.
They live in Birmingham & THT are helping them with the DLA556 reapplication form.
I will feed back on their experience when I hear back.
They live in Birmingham & THT are helping them with the DLA556 reapplication form.
I will feed back on their experience when I hear back.
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:
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!"
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!"
Incapacity Benefit review. (IB50 Form).
Emailed to me from Jim. Edited as requested.
"I was talking with a Benefits Advisor this morning at my local hiv support service and mentioned to her that I had received an IB50 Incapacity for Work Questionnaire.
She queried the fact that as I was on the Highest Rate of Care Component on DLA that this was not necessary to complete. She then accessed on the web the regulations - link below
http://www.opsi.gov.uk/si/si1995/Uksi_19950311_en_1.htm
She then pointed out that under Part II Chapter III Paragraph 10 the first caluse under 2(a) states
exemption due to "that he is in receipt of the highest rate care component of disability living allowance".
Subsequently we phoned my DWP office and when I spoke with the agent he at first said that he was unaware of this exemption but on checking came back on the phone and said that this is correct and that I should ignore the form and that he would be advising Medical Records who would amend my records accordingly - and that I would be receiving a letter outlining my new next year benefit (I intend to check up again in a week's time by phone just to be sure that it has been amended as stated).
So it may be that you were/are aware of this, but thought that it may be wise to put it out there for anyone else in the same situation."
Thanks for this.
"I was talking with a Benefits Advisor this morning at my local hiv support service and mentioned to her that I had received an IB50 Incapacity for Work Questionnaire.
She queried the fact that as I was on the Highest Rate of Care Component on DLA that this was not necessary to complete. She then accessed on the web the regulations - link below
http://www.opsi.gov.uk/si/si1995/Uksi_19950311_en_1.htm
She then pointed out that under Part II Chapter III Paragraph 10 the first caluse under 2(a) states
exemption due to "that he is in receipt of the highest rate care component of disability living allowance".
Subsequently we phoned my DWP office and when I spoke with the agent he at first said that he was unaware of this exemption but on checking came back on the phone and said that this is correct and that I should ignore the form and that he would be advising Medical Records who would amend my records accordingly - and that I would be receiving a letter outlining my new next year benefit (I intend to check up again in a week's time by phone just to be sure that it has been amended as stated).
So it may be that you were/are aware of this, but thought that it may be wise to put it out there for anyone else in the same situation."
Thanks for this.
New forum started ...
I have started a forum on the Benefits & Work website. Please feel free to read & contribute.
Click here for this forum.
Click here for this forum.
Posting elsewhere...
The BBC have held some online debates in Benefit Changes on their "Have Your Say" section of the BBC News Website.
I post as "hivbenefits" to contribute to these issues.
I have posted to the
"Does system of incapacity benefits need reform?" debate.
"What should be done about sick note Britian?" at time of posting waiting for my comment to be moderated
I post as "hivbenefits" to contribute to these issues.
I have posted to the
"Does system of incapacity benefits need reform?" debate.
"What should be done about sick note Britian?" at time of posting waiting for my comment to be moderated
Sick notes ...
A story from the BBC. Alan Johnson the current Health Secretary is proposing changes.
Click here to read the story.
Click here to read the story.
Tuesday 19 February 2008
Hammersmith & Fulham PCT
Just spoken to Hammersmith & Fulham PCT. They fund THT for counselling not Welfare Services. The council fund the Hammersmith CAB. This in turn has a service that runs every Wednesday at the River House Trust on an appointment basis.
Therefore I can only conclude that unless your local PCT or Council is providing funding to THT for Welfare Support provision. You are unlikely to get little help from them
Though they should be able to tell you who can help in your area. Worth a call to THT if you don't know.
Therefore I can only conclude that unless your local PCT or Council is providing funding to THT for Welfare Support provision. You are unlikely to get little help from them
Though they should be able to tell you who can help in your area. Worth a call to THT if you don't know.
Medication.
I am receiving comments, thank you all, about stopping medication.
I WOULD ADVISE YOU DO NOT STOP YOUR MEDICATION.
IT MAY CREATE LONG TERM RESISTANCE ISSUES & WILL CAUSE ILL HEALTH.
IF YOU SO STOP. DO SO UNDER ADVICE FROM YOUR CONSULTANT TO REDUCE YOUR RISK OF LONG TERM RESISTANCE.
I doubt that stopping your medication will have any impact other than to your health & long term prognosis.
HIV is seen as a chronic condition. So long as treatment options are available for you. The state may take the view that your condition is treatable. Therefore your decision. Mental issues aside. To stop or not taking your medication is purely your choice. They may take the view that the State is provinding the support, medically that you need. To manage your condition.
However, unless you have no treatment options left. That is, you are resistant to all existing therapies & they cease to control your HIV. Where your prognosis is defined medically as "Terminal" with a short term life expectancy. This is clearly a different case. Different rules apply. Notify the Department for Work & Pensions.
Special rules still exist if you are terminally ill.
It is likely few with HIV would be in the situation.
If you are reading this and your prognosis is "Terminal". Please know you are in our thoughts.
The HIV medics are worried that people may stop their medication because of this. Stopping your medication is not likely to improve your chances with respect to any review you may be undergoing. It will merely put you, your loved ones & the NHS under pressure.
If the above is unclear. Please feel free to email me.
I WOULD ADVISE YOU DO NOT STOP YOUR MEDICATION.
IT MAY CREATE LONG TERM RESISTANCE ISSUES & WILL CAUSE ILL HEALTH.
IF YOU SO STOP. DO SO UNDER ADVICE FROM YOUR CONSULTANT TO REDUCE YOUR RISK OF LONG TERM RESISTANCE.
I doubt that stopping your medication will have any impact other than to your health & long term prognosis.
HIV is seen as a chronic condition. So long as treatment options are available for you. The state may take the view that your condition is treatable. Therefore your decision. Mental issues aside. To stop or not taking your medication is purely your choice. They may take the view that the State is provinding the support, medically that you need. To manage your condition.
However, unless you have no treatment options left. That is, you are resistant to all existing therapies & they cease to control your HIV. Where your prognosis is defined medically as "Terminal" with a short term life expectancy. This is clearly a different case. Different rules apply. Notify the Department for Work & Pensions.
Special rules still exist if you are terminally ill.
It is likely few with HIV would be in the situation.
If you are reading this and your prognosis is "Terminal". Please know you are in our thoughts.
The HIV medics are worried that people may stop their medication because of this. Stopping your medication is not likely to improve your chances with respect to any review you may be undergoing. It will merely put you, your loved ones & the NHS under pressure.
If the above is unclear. Please feel free to email me.
Monday 18 February 2008
Hammersmith & Fulham PCT & THT
According to the accounts for THT 2006/7 Hammersmith & Fulham PCT are listed as contributing funding to THT. The are now re-tendering. I have added information to the links pages on the website.
Is this why THT were so unhelpful in our earlier telephone conversation asking for help?
Is this why THT were so unhelpful in our earlier telephone conversation asking for help?
Sunday 17 February 2008
Added a poll
I have added a poll to give an indication of the types of people use this blog. Please vote. You don't need to give your identity.
My Partners DLA(556) form.
We have completed this form and submitted it with additional information. Make sure if you are providing additional information, every sheet has your name and National Insurance Number on it.
I would advise.Iif you get this form. You photocopy it and use a pencil fill it in. Then leave a few days and revise it. You will be surprised at how much you remember when you go back to it. You have 4 weeks to send it back.
Remember much of the information relates to when you have a "bad day".
When you have completed the original. Photocopy it for your records.
I am also going to submit a request under the Data Protection Act to acquire our original application forms & correspondence.
We noticed the following on the form :
I would advise.Iif you get this form. You photocopy it and use a pencil fill it in. Then leave a few days and revise it. You will be surprised at how much you remember when you go back to it. You have 4 weeks to send it back.
Remember much of the information relates to when you have a "bad day".
When you have completed the original. Photocopy it for your records.
I am also going to submit a request under the Data Protection Act to acquire our original application forms & correspondence.
We noticed the following on the form :
- Part 4 : " Do you need help or have difficulties caring for yourself" if you tick Yes it refers you back to the previous page.????
- The form is split between Day and Night. When filling out the Night section. Be aware you may have already given an answer earlier in the form. You may want to refer to a previous answer and add additional information.
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