We have updated the letter you can send your MP - click here. Even if you have written before please continue to raise this issue, especially relevant in the current climate.
You can find your MP by typing your post code in to this website.
Showing posts with label Misc. Show all posts
Showing posts with label Misc. Show all posts
Tuesday, 6 May 2008
Monday, 5 May 2008
"Is Labour abolishing illness"
Picked up from the Benefits & Work website forums I thought is was worth highlighting this article - "Is Labour abolishing illness"- from The New Statesman for all visitors here to read.
Written by "Alison Ravetz is a professor emeritus of Leeds Metropolitan University who writes on housing policy and welfare reform"
The article can be found at http://www.newstatesman.com/200805010024
Saturday, 3 May 2008
Events you maybe interested in
If you are a patient of the Kobler, Victoria or Nkosi Johnson Clinics. The patient forum, KVN Forum, is meeting on Tuesday 6th May 2008 from 6pm to 8pm. I understand that a person from the Terrence Higgins Trust has been invited to this meeting to give advice on the Disabiliy Living Allowance Review.
"Please note that we are hoping to have representation from Daniel Payet of THT, who will be presenting the THT approach to dealing with DLA review issues. ...... so if you know anyone who may wish to ask Daniel any questions in particular, then get them to come along, or bring those questions / issues with you - spread the word." - Chair, KVN Forum.
If you live in Dorking. James Purnell, Secretary of State, Department for Work & Pensions is on the panel of BBC's Question Time Thursday 8th May 2008. You can apply to be part of the audience by clicking here.
Tuesday, 29 April 2008
Week commencing 28th April 2008 - Quiet.
All,
We are in the middle of a nightmare that is the "Decent Homes" upgrade to our home.
Please bear with us. I will post when I can.
Thanks,
John.
We are in the middle of a nightmare that is the "Decent Homes" upgrade to our home.
Please bear with us. I will post when I can.
Thanks,
John.
Sunday, 27 April 2008
What can I do to help the cause ...
- See June's message below and sign the petition
- Write to your local MP.
- Write to James Purnell, Minister of State - Department for Work and Pensions.
- Write to Ann McGuire, Minster for the Disabled - Department for Work and Pensions.
- Write to your local newspaper & national newspaper you read.
- Write to your local HIV service provider telling them about your experience.
- Challenge any adverse decision - read back through the blogs to understand what this might mean.
- Let us know how you feel, what this means to you and your experience.
Only by building a body of evidence, your stories can we get a fuller picture of the impact.
Those of you that wrote to the editor of Positive Nation. I want you to understand, though your letter may not have been published, it has contributed to the body of evidence.
Tuesday, 22 April 2008
Useful report from the PSI (Policy Studies Insitiute)
PSI undertakes and publishes research studies relevant to social, economic, industrial and environmental policy. The Institute is a charity, run on a not-for-profit basis. In 1998 it merged to become an independent subsidiary of the University of Westminster.
PSI takes a politically neutral stance on issues of public policy and has no connections with any political party, commercial interest or pressure group.
Reported on "The take-up rate of Disability Living Allowance and Attendance Allowance: Feasibility study" in August 2007.
Some of the points covered maybe of interest to you if you want to understand more about DLA.
PSI takes a politically neutral stance on issues of public policy and has no connections with any political party, commercial interest or pressure group.
Reported on "The take-up rate of Disability Living Allowance and Attendance Allowance: Feasibility study" in August 2007.
Some of the points covered maybe of interest to you if you want to understand more about DLA.
Thursday, 17 April 2008
Body fat, Wasting & Lipodystrophy
If you suffer with facial or buttock wasting you may be interested in the website http://www.facialwasting.org
Tuesday, 15 April 2008
Quiet for a few days.
Been a little quiet over the few days for personal reasons. Have managed to write some more letters. Will post more information during the week.
Please feel free to comment and/or email me.
Thanks,
John.
Please feel free to comment and/or email me.
Thanks,
John.
Saturday, 12 April 2008
Fuel Poverty - Battling Bills - What help is there?
You may find this story from the BBC Website useful. Click here for original story. It contains many links to help.
"Battling bills - what help is there?
With average gas and electricity costs now totalling more than £1,000 a year, many families may be worried about paying their fuel bills this winter. This guide outlines what help is available.
KEY NUMBERS
Home Heat helpline
0800 33 66 99
Energywatch helpline
08459 06 07 08
Eaga benefit entitlement check
0191 247 3800
As well as the general help listed here, suppliers often offer grants, special tariffs and other measures on a case-by-case basis.
If you are having trouble paying your bill you should check with your supplier to find out what help is available from them.
GOVERNMENT PAYMENTS
WINTER FUEL PAYMENT
What is it?
A tax-free annual benefit, it is usually paid from November.
Who is eligible?
Those aged 60 or over by 24 September 2006 and who normally live in the United Kingdom.
How much?
How much you get varies according to personal circumstances. For example, a person living alone, or who is the only person in their household who qualifies, would receive £200 - or £300 if they are aged 80 and over.
How to apply?
If you have not had the payment before and are not getting a state pension or another benefit (apart from housing benefit, council tax benefit or child benefit) the payment will not be automatic, you need to apply.
You can get a claim form by calling 08459 151 515.
Or see this page on the Direct.Gov website.
COLD WEATHER PAYMENT
What is it?
The payment is made when the average temperature is recorded as, or forecast to be, 0C (32F) or below over seven consecutive days.
Who is eligible?
You are entitled if you receive the following:
pension credit
income support or income-based jobseeker's allowance and there is a child aged under five in your family
pensioner premium, higher pensioner premium or enhanced pensioner premium
a disability premium or severe disability premium
a disabled child premium or a child tax credit that includes an individual element for a child or qualifying young person who is disabled or severely disabled
How much?
A one-off payment of £8.50.
How to apply?
The payment is made automatically.
GOVERNMENT SCHEMES
WARM FRONT ENGLAND
What is it?
A grant scheme in England providing heating and insulation in privately owned or rented homes.
Depending on an applicant's needs, it will pay for things such as loft insulation, draught proofing, gas room heaters with thermostat controls gas and electric or oil central heating.
Energy advice and two low-energy light bulbs are also available.
Who is eligible?
You may get a grant if you get one or more of the following benefits:
working tax credit (with an income of less than £15,050 and which must include a disability element)
child tax credit (with an income of less than £15,050)
attendance allowance
disability living allowance
income support (must include a disability premium)
housing benefit (must include a disability premium)
council tax benefit (must include a disability premium)
war disablement pension (must include a mobility supplement or a constant attendance allowance)
industrial injuries disablement benefit (must include constant attendance allowance)
you have a child under 16, or are pregnant, and get income support or council tax benefit or housing benefit or income-based jobseeker's allowance or pension credit
you are aged 60 or over and get pension credit, or council tax benefit, or housing benefit or income-based jobseeker's allowance
How much?
Grants range up to £2,700 - or up to £4,000 if your home needs oil central heating.
How to apply?
You will need to complete an application form before an adviser visits you to assess and recommend work for your property. Call 0800 316 6011.
WARM DEAL SCOTLAND
What is it?
Offers grants for a range of energy-saving measures, including cavity wall insulation, draught proofing, four energy-saving light bulbs, plus energy efficiency advice.
Who is eligible?
You may get a grant if you get one or more of the following benefits:
attendance allowance
child tax credit (with an income of less than £15,050)
council tax benefit
disability living allowance
disabled person's tax credit
housing benefit
income-based jobseeker's allowance
income support
industrial injuries disablement benefit (must include constant attendance allowance)
pension credit
war disablement pension (must include mobility supplement or constant attendance allowance)
working tax credit (with an income of less than £15,050)
How much?
A maximum of £500.
How to apply?
Telephone 0800 316 6009
CENTRAL HEATING PROGRAMME SCOTLAND
What is it?
Funded by the Scottish Executive, it is a non means-tested scheme, providing free central heating and insulation packages for those whose system is broken and beyond repair, or who do not have one at all.
Who is eligible?
Residents in Scotland aged 60 and over who are home owners or rent in the private sector. They must have been resident at the address of application for at least a year and it must be their main home and not subject to a demolition order.
The address must be self-contained and have no central heating, or the existing central heating system must be completely broken and beyond repair.
How much?
Up to £3,500.
How to apply?
Telephone 0800 316 1653.
CENTRAL HEATING PROGRAMME SCOTLAND FOR OVER 80s
What is it?
Replaces heating systems, plus other measures such as a free smoke alarm, assistance with care and help moving and replacing furniture while heating is fitted.
Who is eligible?
Anyone over 80 who has a partial or inefficient system, generally more than 20 years old.
How much?
Up to £3,500.
How to apply?
Telephone 0800 316 1653.
HOME ENERGY EFFICIENCY SCHEME IN WALES
What is it?
Provides grants for energy efficiency measures - such as loft insulation, low energy light bulbs and gas room heaters - and energy advice.
Who is eligible?
Those in receipt of the following benefits and have a child under 16, or are pregnant:
income support
working tax credit (with an income of less than £15,050)
council tax benefit
child tax credit (with an income of less than £15,050)
housing benefit
income-based jobseeker's allowance
How much?
Up to £1,500.
How to apply?
Telephone 0800 316 2815.
HEES plus in Wales
What is it?
Aimed at owner-occupiers or private tenants in Wales, it provides grants for energy efficiency measures and gives tailored energy efficiency advice.
Who is eligible?
People aged 60 or over, or one-parent families with a child under 16, and in receipt of one or more of the following:
income support
housing benefit
council tax benefit
state pension credit
income-based job seeker's allowance
OR
Householders who are disabled or chronically sick, and in receipt of one or more of the following:
working tax credit
housing benefit
income support
council tax benefit, plus the disability element
disability living allowance
attendance allowance
industrial injuries disablement benefit, plus constant attendance allowance
war disablement pension plus constant attendance allowance
attendance allowance
mobility supplement
OR
Householders with children under 16 living in the property, who are claiming child benefit with the child receiving disability living allowance.
How much?
Up to £2,700
How to apply?
Telephone 0800 316 2815.
NORTHERN IRELAND WARM HOMES SCHEME
What is it?
Funded by the Department for Social Development, it is aimed at owner-occupiers and people who rent their homes from private landlords in Northern Ireland. It is not available for public sector properties.
The fund gives a grant for a package of energy efficiency and heating measures.
Who is eligible?
Householders of any age (the applicant or their spouse) who have a child under the age of 16 and who are in receipt of one or more of the following benefits:
housing benefit
rate rebate
income support
income-based job seeker's allowance
child tax credit
expectant mothers in receipt of a Maternity certificate (MAT B1) and one of the above benefits
OR
Householders under 60 (the applicant or their spouse) who are in receipt of one or more of the following disability-related benefits:
disability living allowance
housing benefit (with disability premium)
rate rebate (with disability premium
)
income support (with disability premium)
working tax credit (with disability premium) and NHS tax exemption certificate
war disablement pension (with mobility supplement or constant attendance allowance)
industrial injuries disablement benefit (with constant attendance allowance)
How much?
Up to £750.
How to apply?
Telephone 0800 181 667.
WARM HOMES PLUS - NORTHERN IRELAND
What is it?
In addition to the warm homes scheme, includes measures such as installing new central heating systems.
Who is eligible?
Householders who are 60 years and over and are in receipt of one or more of the following benefits:
rate rebate
housing benefit
pension credit
income-based job seeker's allowance
attendance allowance
disability living allowance
working tax credit (with disability premium) and NHS tax exemption certificate
industrial injuries disablement benefit (with constant attendance allowance)
war disablement pension (with mobility supplement or constant attendance allowance)
How much?
Up to £3,700.
How to apply?
Telephone 0800 181 667.
ENERGY SUPPLIER FUNDS
POWERGEN HARDSHIP FUND
Aims to assist Powergen customers who are low income households facing financial difficulty and who may not be eligible for financial help from government schemes.
Can offer the following assistance:
payments in full or part to cover the cost of installing cavity wall insulation and/or loft insulation
payments in full or part to cover the cost of repairing or installing heating measures which in some cases could include repair of unsafe gas heating systems
payments in full or part could be made to cover the cost of household appliances
Telephone 0800 051 1480.
EDF ENERGY TRUST FUND
A charity that gives grants to people who have electricity, gas, telephone, and in some cases, other essential household bill debts.
Funded by EDF, its gives grants, and financial and energy efficiency advice.
You must be a domestic customer of London Energy, Seeboard Energy, Sweb Energy or EDF Energy.
There are two types of grants. They are for:
individuals to cover the payment of gas and electricity debts and other essential household bills or costs
voluntary organisations working in the field of money advice, debt counselling or energy efficiency advice
Telephone 01733 421050.
BRITISH GAS ENERGY TRUST
The British Gas Energy Trust, which incorporates the Scottish Gas Energy Trust, gives grants to help individuals and families in need to meet arrears of energy charges and other household bills and costs.
You must be a domestic customer of British Gas or Scottish Gas.
Can help with:
arrears of domestic gas/electricity charges
other essential domestic bills and costs. You can apply for such help even if you do not apply for help with your gas/electricity charges
Telephone 01733 421021.
A winter fuel rebate is also available of up to £90 to British Gas's most vulnerable customers.
Telephone 0845 601 2006.
SCOTTISH POWER ENERGY PEOPLE TRUST
Organisations and groups can apply for funding to support projects or schemes covering:
crisis funding, such as women and children needing emergency accommodation and vulnerable young people setting up their first home
benefits health checks or income maximisation. For example, helping households that are not claiming all the benefits to which they are entitled
energy efficiency measures
research
If you are having trouble paying your bill you should check with your supplier to find out what help is available. Many offer grants, and/or special tariffs and other measures.
Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/uk/6043288.stm
Published: 2006/10/24 00:25:38 GMT
© BBC MMVIII"
"Battling bills - what help is there?
With average gas and electricity costs now totalling more than £1,000 a year, many families may be worried about paying their fuel bills this winter. This guide outlines what help is available.
KEY NUMBERS
Home Heat helpline
0800 33 66 99
Energywatch helpline
08459 06 07 08
Eaga benefit entitlement check
0191 247 3800
As well as the general help listed here, suppliers often offer grants, special tariffs and other measures on a case-by-case basis.
If you are having trouble paying your bill you should check with your supplier to find out what help is available from them.
GOVERNMENT PAYMENTS
WINTER FUEL PAYMENT
What is it?
A tax-free annual benefit, it is usually paid from November.
Who is eligible?
Those aged 60 or over by 24 September 2006 and who normally live in the United Kingdom.
How much?
How much you get varies according to personal circumstances. For example, a person living alone, or who is the only person in their household who qualifies, would receive £200 - or £300 if they are aged 80 and over.
How to apply?
If you have not had the payment before and are not getting a state pension or another benefit (apart from housing benefit, council tax benefit or child benefit) the payment will not be automatic, you need to apply.
You can get a claim form by calling 08459 151 515.
Or see this page on the Direct.Gov website.
COLD WEATHER PAYMENT
What is it?
The payment is made when the average temperature is recorded as, or forecast to be, 0C (32F) or below over seven consecutive days.
Who is eligible?
You are entitled if you receive the following:
pension credit
income support or income-based jobseeker's allowance and there is a child aged under five in your family
pensioner premium, higher pensioner premium or enhanced pensioner premium
a disability premium or severe disability premium
a disabled child premium or a child tax credit that includes an individual element for a child or qualifying young person who is disabled or severely disabled
How much?
A one-off payment of £8.50.
How to apply?
The payment is made automatically.
GOVERNMENT SCHEMES
WARM FRONT ENGLAND
What is it?
A grant scheme in England providing heating and insulation in privately owned or rented homes.
Depending on an applicant's needs, it will pay for things such as loft insulation, draught proofing, gas room heaters with thermostat controls gas and electric or oil central heating.
Energy advice and two low-energy light bulbs are also available.
Who is eligible?
You may get a grant if you get one or more of the following benefits:
working tax credit (with an income of less than £15,050 and which must include a disability element)
child tax credit (with an income of less than £15,050)
attendance allowance
disability living allowance
income support (must include a disability premium)
housing benefit (must include a disability premium)
council tax benefit (must include a disability premium)
war disablement pension (must include a mobility supplement or a constant attendance allowance)
industrial injuries disablement benefit (must include constant attendance allowance)
you have a child under 16, or are pregnant, and get income support or council tax benefit or housing benefit or income-based jobseeker's allowance or pension credit
you are aged 60 or over and get pension credit, or council tax benefit, or housing benefit or income-based jobseeker's allowance
How much?
Grants range up to £2,700 - or up to £4,000 if your home needs oil central heating.
How to apply?
You will need to complete an application form before an adviser visits you to assess and recommend work for your property. Call 0800 316 6011.
WARM DEAL SCOTLAND
What is it?
Offers grants for a range of energy-saving measures, including cavity wall insulation, draught proofing, four energy-saving light bulbs, plus energy efficiency advice.
Who is eligible?
You may get a grant if you get one or more of the following benefits:
attendance allowance
child tax credit (with an income of less than £15,050)
council tax benefit
disability living allowance
disabled person's tax credit
housing benefit
income-based jobseeker's allowance
income support
industrial injuries disablement benefit (must include constant attendance allowance)
pension credit
war disablement pension (must include mobility supplement or constant attendance allowance)
working tax credit (with an income of less than £15,050)
How much?
A maximum of £500.
How to apply?
Telephone 0800 316 6009
CENTRAL HEATING PROGRAMME SCOTLAND
What is it?
Funded by the Scottish Executive, it is a non means-tested scheme, providing free central heating and insulation packages for those whose system is broken and beyond repair, or who do not have one at all.
Who is eligible?
Residents in Scotland aged 60 and over who are home owners or rent in the private sector. They must have been resident at the address of application for at least a year and it must be their main home and not subject to a demolition order.
The address must be self-contained and have no central heating, or the existing central heating system must be completely broken and beyond repair.
How much?
Up to £3,500.
How to apply?
Telephone 0800 316 1653.
CENTRAL HEATING PROGRAMME SCOTLAND FOR OVER 80s
What is it?
Replaces heating systems, plus other measures such as a free smoke alarm, assistance with care and help moving and replacing furniture while heating is fitted.
Who is eligible?
Anyone over 80 who has a partial or inefficient system, generally more than 20 years old.
How much?
Up to £3,500.
How to apply?
Telephone 0800 316 1653.
HOME ENERGY EFFICIENCY SCHEME IN WALES
What is it?
Provides grants for energy efficiency measures - such as loft insulation, low energy light bulbs and gas room heaters - and energy advice.
Who is eligible?
Those in receipt of the following benefits and have a child under 16, or are pregnant:
income support
working tax credit (with an income of less than £15,050)
council tax benefit
child tax credit (with an income of less than £15,050)
housing benefit
income-based jobseeker's allowance
How much?
Up to £1,500.
How to apply?
Telephone 0800 316 2815.
HEES plus in Wales
What is it?
Aimed at owner-occupiers or private tenants in Wales, it provides grants for energy efficiency measures and gives tailored energy efficiency advice.
Who is eligible?
People aged 60 or over, or one-parent families with a child under 16, and in receipt of one or more of the following:
income support
housing benefit
council tax benefit
state pension credit
income-based job seeker's allowance
OR
Householders who are disabled or chronically sick, and in receipt of one or more of the following:
working tax credit
housing benefit
income support
council tax benefit, plus the disability element
disability living allowance
attendance allowance
industrial injuries disablement benefit, plus constant attendance allowance
war disablement pension plus constant attendance allowance
attendance allowance
mobility supplement
OR
Householders with children under 16 living in the property, who are claiming child benefit with the child receiving disability living allowance.
How much?
Up to £2,700
How to apply?
Telephone 0800 316 2815.
NORTHERN IRELAND WARM HOMES SCHEME
What is it?
Funded by the Department for Social Development, it is aimed at owner-occupiers and people who rent their homes from private landlords in Northern Ireland. It is not available for public sector properties.
The fund gives a grant for a package of energy efficiency and heating measures.
Who is eligible?
Householders of any age (the applicant or their spouse) who have a child under the age of 16 and who are in receipt of one or more of the following benefits:
housing benefit
rate rebate
income support
income-based job seeker's allowance
child tax credit
expectant mothers in receipt of a Maternity certificate (MAT B1) and one of the above benefits
OR
Householders under 60 (the applicant or their spouse) who are in receipt of one or more of the following disability-related benefits:
disability living allowance
housing benefit (with disability premium)
rate rebate (with disability premium
)
income support (with disability premium)
working tax credit (with disability premium) and NHS tax exemption certificate
war disablement pension (with mobility supplement or constant attendance allowance)
industrial injuries disablement benefit (with constant attendance allowance)
How much?
Up to £750.
How to apply?
Telephone 0800 181 667.
WARM HOMES PLUS - NORTHERN IRELAND
What is it?
In addition to the warm homes scheme, includes measures such as installing new central heating systems.
Who is eligible?
Householders who are 60 years and over and are in receipt of one or more of the following benefits:
rate rebate
housing benefit
pension credit
income-based job seeker's allowance
attendance allowance
disability living allowance
working tax credit (with disability premium) and NHS tax exemption certificate
industrial injuries disablement benefit (with constant attendance allowance)
war disablement pension (with mobility supplement or constant attendance allowance)
How much?
Up to £3,700.
How to apply?
Telephone 0800 181 667.
ENERGY SUPPLIER FUNDS
POWERGEN HARDSHIP FUND
Aims to assist Powergen customers who are low income households facing financial difficulty and who may not be eligible for financial help from government schemes.
Can offer the following assistance:
payments in full or part to cover the cost of installing cavity wall insulation and/or loft insulation
payments in full or part to cover the cost of repairing or installing heating measures which in some cases could include repair of unsafe gas heating systems
payments in full or part could be made to cover the cost of household appliances
Telephone 0800 051 1480.
EDF ENERGY TRUST FUND
A charity that gives grants to people who have electricity, gas, telephone, and in some cases, other essential household bill debts.
Funded by EDF, its gives grants, and financial and energy efficiency advice.
You must be a domestic customer of London Energy, Seeboard Energy, Sweb Energy or EDF Energy.
There are two types of grants. They are for:
individuals to cover the payment of gas and electricity debts and other essential household bills or costs
voluntary organisations working in the field of money advice, debt counselling or energy efficiency advice
Telephone 01733 421050.
BRITISH GAS ENERGY TRUST
The British Gas Energy Trust, which incorporates the Scottish Gas Energy Trust, gives grants to help individuals and families in need to meet arrears of energy charges and other household bills and costs.
You must be a domestic customer of British Gas or Scottish Gas.
Can help with:
arrears of domestic gas/electricity charges
other essential domestic bills and costs. You can apply for such help even if you do not apply for help with your gas/electricity charges
Telephone 01733 421021.
A winter fuel rebate is also available of up to £90 to British Gas's most vulnerable customers.
Telephone 0845 601 2006.
SCOTTISH POWER ENERGY PEOPLE TRUST
Organisations and groups can apply for funding to support projects or schemes covering:
crisis funding, such as women and children needing emergency accommodation and vulnerable young people setting up their first home
benefits health checks or income maximisation. For example, helping households that are not claiming all the benefits to which they are entitled
energy efficiency measures
research
If you are having trouble paying your bill you should check with your supplier to find out what help is available. Many offer grants, and/or special tariffs and other measures.
Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/uk/6043288.stm
Published: 2006/10/24 00:25:38 GMT
© BBC MMVIII"
Friday, 11 April 2008
Keeping a diary.
Been a week spent mainly researching & writing letters when possible.
Just a reminder that keeping a diary is a good tool when it comes to filling in the issues you face on a daily & nightly basis. When completing any form. It gives you something to remind you. It need not be too elaborate either.
Just a reminder that keeping a diary is a good tool when it comes to filling in the issues you face on a daily & nightly basis. When completing any form. It gives you something to remind you. It need not be too elaborate either.
Monday, 7 April 2008
Direct Payments
"Direct payments are cash payments made to individuals who have been assessed as needing services, in lieu of social service provisions."
If you want to find out more the Department of Health has information on it's website - Click here
The Penerels Trust is a charity providing services to those in receipt of "Direct Payments". This is not a recommendation. I merely include this link for information purposes.
If you want to find out more the Department of Health has information on it's website - Click here
The Penerels Trust is a charity providing services to those in receipt of "Direct Payments". This is not a recommendation. I merely include this link for information purposes.
Friday, 4 April 2008
House of Lords Debate on HIV/AIDS April, 3rd 2008
You may be interested in the content of this debate. Held in the House of Lords on 3rd April 2008. Click here for the debate.
As indicated in the debate. Lord Fowler is a trustee of the Terrence Higgins Trust & sits on the All-Party Parliamentary Group on AIDS.
I've had some correspondence with the All Party Group but await feedback on our issues.
Today, I wrote to several members of the House of Lords that took part in this debate.
As indicated in the debate. Lord Fowler is a trustee of the Terrence Higgins Trust & sits on the All-Party Parliamentary Group on AIDS.
I've had some correspondence with the All Party Group but await feedback on our issues.
Today, I wrote to several members of the House of Lords that took part in this debate.
Some events & info you may find useful
Picked up by a member of Tcell from the Tfl Disability Magazine "Getting There".
From the 29th April to 1st May 2008 - Naidex Independent Living exhibition at the NEC Birmingham.
Also there is an Advocacy group you may find useful. Called the Advocacy Resource Exchange they can be telephoned on 08451 22 86 33 between 2pm & 5pm, Monday to Friday.
From the 29th April to 1st May 2008 - Naidex Independent Living exhibition at the NEC Birmingham.
Also there is an Advocacy group you may find useful. Called the Advocacy Resource Exchange they can be telephoned on 08451 22 86 33 between 2pm & 5pm, Monday to Friday.
Wednesday, 2 April 2008
i-base funding withdrawn.
Posted FYI - http://www.i-base.org.uk
"STOP PRESS: i-Base funding withdrawn: urgent request for letters of support
As this issue of HTB went to press we learned that the London Health Commissioners have withdrawn funding for all i-Base projects.
For the last two years we have received £50k (just under 20% of our annual budget) towards the treatment phoneline and information services, adherence support publications (the BHIVA-recommended treatment passport) and treatment workshops.
Public funding stabilised the project sufficiently to continue to provide HIV Treatment Bulletin and the five i-Base treatment guides free to all individuals and clinics, and to run additional treatment workshops with community groups.
In retendering for services the London Commissioners declined to tender for any existing project and refuses to contribute towards the costs of any i-Base services...
No publications, no treatment workshops, no advocacy training, no phoneline support, no email services, no online Q&A services, no translations of treatment publications, no website.
We think this is unfair and is not reflective of the needs of London patients and clinics.
If you use or have used i-Base services as a London patient or clinic, please email letters of support to:
ray.appleby@kc-pct.nhs.uk
hong.tan@londonscg.nhs.uk
It would help us if you could copy any correspondence to:
simon.collins@i-Base.org.uk
i-Base employs three full-time and four part-time staff for all our projects. Five of the seven staff are HIV-positive. The funding decision, for which we are told there is no appeal, threatens these posts and the services we provide.
Thank you for your support..."
"STOP PRESS: i-Base funding withdrawn: urgent request for letters of support
As this issue of HTB went to press we learned that the London Health Commissioners have withdrawn funding for all i-Base projects.
For the last two years we have received £50k (just under 20% of our annual budget) towards the treatment phoneline and information services, adherence support publications (the BHIVA-recommended treatment passport) and treatment workshops.
Public funding stabilised the project sufficiently to continue to provide HIV Treatment Bulletin and the five i-Base treatment guides free to all individuals and clinics, and to run additional treatment workshops with community groups.
In retendering for services the London Commissioners declined to tender for any existing project and refuses to contribute towards the costs of any i-Base services...
No publications, no treatment workshops, no advocacy training, no phoneline support, no email services, no online Q&A services, no translations of treatment publications, no website.
- The i-Base phoneline has been provided expert peer-advocacy support for over five years, and have the cumulative experience from having spoken to thousands of individual patients.
- Over the last two years the UK-CAB has developed into a representative network of advocates and peer advocates.
- We have distributed thousands of treatment guides - ordered by request from clinics.
We think this is unfair and is not reflective of the needs of London patients and clinics.
If you use or have used i-Base services as a London patient or clinic, please email letters of support to:
ray.appleby@kc-pct.nhs.uk
hong.tan@londonscg.nhs.uk
It would help us if you could copy any correspondence to:
simon.collins@i-Base.org.uk
i-Base employs three full-time and four part-time staff for all our projects. Five of the seven staff are HIV-positive. The funding decision, for which we are told there is no appeal, threatens these posts and the services we provide.
Thank you for your support..."
Tuesday, 1 April 2008
Unhappy with your local HIV Services.
Your local Primary Care Trust (PCT) and/or local Council commission local services for HIV. For example you may have a local charity that provides counselling or welfare advice for people with HIV.
You are a service user. Your views shape how these services are delivered.
You can submit compliments or complaints to your local PCT/Council giving your views on the services available in your area.
You can find your local PCT by clicking here. Enter your post code and select NHS Trusts from the drop down menu.
Any letter should be addressed to the "Commissioner for HIV Services".
You are a service user. Your views shape how these services are delivered.
You can submit compliments or complaints to your local PCT/Council giving your views on the services available in your area.
You can find your local PCT by clicking here. Enter your post code and select NHS Trusts from the drop down menu.
Any letter should be addressed to the "Commissioner for HIV Services".
Thursday, 27 March 2008
Some reports you may find of interest.
The National AIDS Trust have produced a report titled "From a Positive Perspective: Key Issues for People Living with HIV in the UK
Also on the main page there is a section on "Public Attitudes Towards HIV 2007".
Crusaid, who provide a hardship fund. Have also produced an interesting report "Poverty & HIV 2007"
I highlight these as they maybe of interest.
Also on the main page there is a section on "Public Attitudes Towards HIV 2007".
Crusaid, who provide a hardship fund. Have also produced an interesting report "Poverty & HIV 2007"
I highlight these as they maybe of interest.
Tuesday, 25 March 2008
Right Payment Program & Special Rules.
You may be interested in the following :
DCS Advisory Newsletters. January 2008 mentions RPP & Special Rules.
Also,
The new forums on the Benefits & Work Website concerning the Right Payment Programme & leading disability groups.
DCS Advisory Newsletters. January 2008 mentions RPP & Special Rules.
Also,
The new forums on the Benefits & Work Website concerning the Right Payment Programme & leading disability groups.
Wednesday, 19 March 2008
MAC AIDS Fund & HIV Stigmatism
This morning the MAC AIDS Fund held a panel discussion & meeting in London attended by several well known "charities" and groups from the HIV sector. This was to present their survey data on, and have a discussion about, HIV & Stigmatism.
The survey data can be found by clicking here.
I am grateful to the MAC AIDS Fund for allowing me to attend as an observer, though under par at the moment. It was well worth attending.
For those of you who don't know who MAC are.
"Established in 1994 by M·A·C Cosmetics, the M·A·C AIDS Fund supports men, women and children affected by HIV/AIDS globally. Introducing its first VIVA GLAM lipstick that same year, M·A·C decided that every cent of the selling price of the VIVA GLAM lipsticks would go to the M·A·C AIDS Fund. With a total of six shades of Viva Glam lipstick and two shades of Viva Glam lipglass now sold worldwide, and through the annual Kids Helping Kids Card Program, M·A·C Cosmetics has provided over $100 million (US) to date for the M·A·C AIDS Fund. The M·A·C AIDS Fund is the heart and soul of the company – with its employees giving their time, energy and talent to help those affected by HIV/AIDS worldwide."
The discussion did touch briefly on poverty though not directly on the DLA issues. However the discussion went well. With many organisations that were in the audience. Raising some very salient points.
The meeting opened with a speech from Mr. John Demsey, Chairman - MAC AIDS Fund.
This was followed by a presentation of the survey data by Nancy Mahon, Senior Vice President - MAC Cosmetics & Executive Director - MAC AIDS Fund.
The survey data for me personally was very interesting in what it showed in terms of peoples perceptions around HIV.
The Panel was Chaired by Andrew Jack - Financial Times.
Panel members were
MAC AIDS Fund is making £250,000 availible in grants to organisations that look to tackle the issues around this in the UK.
Thank you for taking such a key role in this.
The survey data can be found by clicking here.
I am grateful to the MAC AIDS Fund for allowing me to attend as an observer, though under par at the moment. It was well worth attending.
For those of you who don't know who MAC are.
"Established in 1994 by M·A·C Cosmetics, the M·A·C AIDS Fund supports men, women and children affected by HIV/AIDS globally. Introducing its first VIVA GLAM lipstick that same year, M·A·C decided that every cent of the selling price of the VIVA GLAM lipsticks would go to the M·A·C AIDS Fund. With a total of six shades of Viva Glam lipstick and two shades of Viva Glam lipglass now sold worldwide, and through the annual Kids Helping Kids Card Program, M·A·C Cosmetics has provided over $100 million (US) to date for the M·A·C AIDS Fund. The M·A·C AIDS Fund is the heart and soul of the company – with its employees giving their time, energy and talent to help those affected by HIV/AIDS worldwide."
The discussion did touch briefly on poverty though not directly on the DLA issues. However the discussion went well. With many organisations that were in the audience. Raising some very salient points.
The meeting opened with a speech from Mr. John Demsey, Chairman - MAC AIDS Fund.
This was followed by a presentation of the survey data by Nancy Mahon, Senior Vice President - MAC Cosmetics & Executive Director - MAC AIDS Fund.
The survey data for me personally was very interesting in what it showed in terms of peoples perceptions around HIV.
The Panel was Chaired by Andrew Jack - Financial Times.
Panel members were
- Nancy Mahon.
- Elhadj Amadou SY - UNAIDS.
- Jane Anderson - Consultant & Director of the Centre for the Study of Sexual Health and HIV at Homerton University Hospital NHS Foundation Trust.
- Paul Gambaccini - BBC Radio.
- Steven Inman - Head of Grants & Projects Crusaid.
- Deborah Jack - CEO National AIDS Trust.
- Angelina Namiba - Policy & Involvement Manager Positively Women.
MAC AIDS Fund is making £250,000 availible in grants to organisations that look to tackle the issues around this in the UK.
Thank you for taking such a key role in this.
Tuesday, 11 March 2008
BBC News website "HIV 'hides from drugs for years'"
FYI : you maybe interested in this story from the BBC news website today.
" BBC NEWS
HIV 'hides from drugs for years'
HIV can survive the apparently effective onslaught of antiviral drugs for years by hiding away in the body's cells, research shows.
The US National Cancer Institute found low levels of dormant HIV in patients seven years after they started - and responded well to - standard therapy.
The finding confirms patients must take drugs indefinitely, and that any break runs the risk of rekindling infection.
The study features in Proceedings of the National Academy of Sciences.
People with HIV need to take treatment indefinitely because current drugs cannot reach this pool of dormant virus
Keith Alcorn
NAM
The researchers followed 40 patients infected with HIV for seven years.
Doctors do not usually record infection levels once the number of HIV particles falls below 50 per ml of blood.
However, the NCI team used highly sensitive equipment to measure infection levels below this threshold.
They found that the virus was still present at low levels in 77% of the patients.
The research suggests that although potent antiretroviral therapy can suppress HIV infection to almost undetectable levels, it cannot eradicate the virus.
Renewed risk
The researchers said that even though levels of the virus that remain are low, they are high enough to rekindle infection if treatment is interrupted.
The risk of infecting others is low, but cannot be ruled out.
They believe HIV may be harboured by CD4+ cells, which play a role in the immune system.
These cells are most likely infected before therapy was initiated and the amount of virus they produce is small.
Researcher Dr Sarah Palmer said: "It is extremely important that new drugs are developed to eradicate HIV infection as the side effects associated with long-term HIV treatment can be severe."
She also warned that failing to take prescribed medication raised the risk that HIV could begin to develop resistance, rendering future treatment less effective.
Keith Alcorn, of the HIV information service NAM, said scientists were looking at approaches to treatment that could flush out HIV from cells.
He said: "This research shows that, for the time being, people with HIV need to take treatment indefinitely because current drugs cannot reach this pool of dormant virus.
"If treatment stops, this pool of virus provides the basis for a rapid rebound in virus levels."
Mary Lima, a treatment advisor at the HIV charity Terrence Higgins Trust, said: "This study only highlights the complexity of HIV and why it's so difficult for us to find a cure.
"It's important we find out as much as possible about how HIV acts over long periods of time, so we can continue to develop new treatment strategies to tackle it.
In order to keep people with HIV well for longer, we need to attack the virus at all stages."
Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/health/7287792.stm
Published: 2008/03/11 08:03:14 GMT
© BBC MMVIII"
" BBC NEWS
HIV 'hides from drugs for years'
HIV can survive the apparently effective onslaught of antiviral drugs for years by hiding away in the body's cells, research shows.
The US National Cancer Institute found low levels of dormant HIV in patients seven years after they started - and responded well to - standard therapy.
The finding confirms patients must take drugs indefinitely, and that any break runs the risk of rekindling infection.
The study features in Proceedings of the National Academy of Sciences.
People with HIV need to take treatment indefinitely because current drugs cannot reach this pool of dormant virus
Keith Alcorn
NAM
The researchers followed 40 patients infected with HIV for seven years.
Doctors do not usually record infection levels once the number of HIV particles falls below 50 per ml of blood.
However, the NCI team used highly sensitive equipment to measure infection levels below this threshold.
They found that the virus was still present at low levels in 77% of the patients.
The research suggests that although potent antiretroviral therapy can suppress HIV infection to almost undetectable levels, it cannot eradicate the virus.
Renewed risk
The researchers said that even though levels of the virus that remain are low, they are high enough to rekindle infection if treatment is interrupted.
The risk of infecting others is low, but cannot be ruled out.
They believe HIV may be harboured by CD4+ cells, which play a role in the immune system.
These cells are most likely infected before therapy was initiated and the amount of virus they produce is small.
Researcher Dr Sarah Palmer said: "It is extremely important that new drugs are developed to eradicate HIV infection as the side effects associated with long-term HIV treatment can be severe."
She also warned that failing to take prescribed medication raised the risk that HIV could begin to develop resistance, rendering future treatment less effective.
Keith Alcorn, of the HIV information service NAM, said scientists were looking at approaches to treatment that could flush out HIV from cells.
He said: "This research shows that, for the time being, people with HIV need to take treatment indefinitely because current drugs cannot reach this pool of dormant virus.
"If treatment stops, this pool of virus provides the basis for a rapid rebound in virus levels."
Mary Lima, a treatment advisor at the HIV charity Terrence Higgins Trust, said: "This study only highlights the complexity of HIV and why it's so difficult for us to find a cure.
"It's important we find out as much as possible about how HIV acts over long periods of time, so we can continue to develop new treatment strategies to tackle it.
In order to keep people with HIV well for longer, we need to attack the virus at all stages."
Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/health/7287792.stm
Published: 2008/03/11 08:03:14 GMT
© BBC MMVIII"
Saturday, 8 March 2008
From BBC news website ....
Concerning blood donation. I mention it as it might be of general interest.
The original story can be found http://news.bbc.co.uk/1/hi/health/7283541.stm
The main campaigning site is Bloodban
"Call to end gay donor blood ban
Campaigners are calling for tight restrictions on sexually active gay men donating blood to be relaxed.
The National Blood Service says clear evidence shows gay men have a greater chance of passing on HIV and other infections in donated blood.
However, campaigners say there are fewer restrictions on heterosexuals who have high-risk sex.
They want gay men to be judged individually according to their lifestyle, not as a homogenous group.
I just want to be equal - everybody should be judged on their personal activities
Russell Hirst
Currently, blood donated in the UK is screened for a number of bloodborne viruses, including HIV, and hepatitis C.
However, if the donor has been newly-infected with these viruses, there is a "window" in which the tests do not work.
To reduce the risk of contamination, the National Blood Service does not allow sexually active gay men to give blood.
There are also restrictions on intravenous drug users, or heterosexuals who admit "risky" sexual practices involving prostitutes.
Russell Hirst was denied the chance to give blood when his sister was seriously ill.
He said that the ban on gay men was a lifetime ban, while bans on heterosexuals were much shorter.
He said: "I was very shocked when my sister was ill, needed a lot of blood, and I wasn't allowed to donate blood.
"I just want to be equal. Everybody should be judged on their personal activities.
"If a gay man says that he's had unprotected sex with a man, then he should not give blood for 18 months - but I don't see why it should be a lifetime ban."
He said that the reason the ban remained in its current form was to save money for the National Blood Service.
Risk present
However, a spokesman for the National Blood Service said that the ban was in place "for good reason", and denied there were financial reasons for a ban.
"We ask men who have had sex with men not to give blood because, as a group, they are known to be at an increased risk of acquiring HIV and a number of other sexually transmitted diseases, many of which are carried in the blood.
"While safer sex, through the use of condoms, can reduce the risk of transmitting infections, it cannot reduce this risk to such low levels as to make it totally risk-free."
He said that current donations were enough to meet the UK's needs.
Russell Hirst's campaign, "Bloodban", has started a petition and intends to pass this to Prime Minister Gordon Brown.
Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/health/7283541.stm
Published: 2008/03/07 13:37:29 GMT
© BBC MMVIII"
The original story can be found http://news.bbc.co.uk/1/hi/health/7283541.stm
The main campaigning site is Bloodban
"Call to end gay donor blood ban
Campaigners are calling for tight restrictions on sexually active gay men donating blood to be relaxed.
The National Blood Service says clear evidence shows gay men have a greater chance of passing on HIV and other infections in donated blood.
However, campaigners say there are fewer restrictions on heterosexuals who have high-risk sex.
They want gay men to be judged individually according to their lifestyle, not as a homogenous group.
I just want to be equal - everybody should be judged on their personal activities
Russell Hirst
Currently, blood donated in the UK is screened for a number of bloodborne viruses, including HIV, and hepatitis C.
However, if the donor has been newly-infected with these viruses, there is a "window" in which the tests do not work.
To reduce the risk of contamination, the National Blood Service does not allow sexually active gay men to give blood.
There are also restrictions on intravenous drug users, or heterosexuals who admit "risky" sexual practices involving prostitutes.
Russell Hirst was denied the chance to give blood when his sister was seriously ill.
He said that the ban on gay men was a lifetime ban, while bans on heterosexuals were much shorter.
He said: "I was very shocked when my sister was ill, needed a lot of blood, and I wasn't allowed to donate blood.
"I just want to be equal. Everybody should be judged on their personal activities.
"If a gay man says that he's had unprotected sex with a man, then he should not give blood for 18 months - but I don't see why it should be a lifetime ban."
He said that the reason the ban remained in its current form was to save money for the National Blood Service.
Risk present
However, a spokesman for the National Blood Service said that the ban was in place "for good reason", and denied there were financial reasons for a ban.
"We ask men who have had sex with men not to give blood because, as a group, they are known to be at an increased risk of acquiring HIV and a number of other sexually transmitted diseases, many of which are carried in the blood.
"While safer sex, through the use of condoms, can reduce the risk of transmitting infections, it cannot reduce this risk to such low levels as to make it totally risk-free."
He said that current donations were enough to meet the UK's needs.
Russell Hirst's campaign, "Bloodban", has started a petition and intends to pass this to Prime Minister Gordon Brown.
Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/health/7283541.stm
Published: 2008/03/07 13:37:29 GMT
© BBC MMVIII"
Subscribe to:
Posts (Atom)
