We would like to get some feedback from you today and ask what information/topic were you seeking today? amongst other questions, this will help us with how we progess in the future and how to relate additional information that might be sought and which may not be covered. If you could complete the short 10 question online survey, we would be very grateful.
It doesn't ask for any identiyfying information and we would apprecate it if you would only complete it once, Thank you.
We are also running a quick 5 question/answer survey asking: Would you prefer a Pan London approach to HIV social care?, we are only seeking responses by those affected or living with HIV/AIDS http://www.surveymonkey.com/s/C2BHZGB and hope you will take part in. Thank you
PDF version
In response to the question raised “Information about the political support gained since the inception of this site” We have no informative way to confirm this other than the numbers accessing the website of 5,000 people per month and by the various email notifications we have sent to raise awareness of the site and information collected and presented.
The analysis and information upon TCell has been provided to various people and organisations, a request was received from Mr Tom Brake MP, London spokesmen for the Liberal Democrats to meet, also a few responses were received by Liberal Democrat London Assembly members about the issues we raised. Responses have also been received by the Dept. of Health both under freedom of information request and information submitted.
I shall ask John to comment additionally as he attends various other meeting and Parliament APPG both on HIV/AIDS and disability. I will ask John to give his perspective on the question you raised. John also submits responses to Parliament when consultations are brought the attention of the public.
Grant funding has been sought both from within the HIV sector and outside and we have not been successful or were declined. It would have been nice to have had the change to tender for the grant awarded to Shoutload, some £430,000 we are advised. As non statutory or no statutory is received we are limited and are excluded to further develop the organisation of TCell.
I shall under a separate cover try to response to the question “In-depth coverage of long terms claimants with data from the DWP.
Thank you for completing the survey.
Kevin
We regularly engage across the political spectrum, unfortunately as far as HIV is concerned there is more interest in what is happening abroad and trying to tackle the lack of Anti-retroviral drugs in developing countries. I was once told by a politician that civil servants believe that HIV has largely been dealt with in the UK as the medications are freely available. This does make campaigning much more difficult.
Since the site began we have raised 10 Downing Street petitions, Early Day Motions, attended relevant parliamentary meetings, written to members in both houses across the political spectrum etc.
We recognise that we are part of the wider disabled community and share many issues so we also broaden our approach accordingly.
I always tend to write up what has happened when I have been at a meeting or corresponded/spoken to someone. After all it is to everyone's benefit to know so check back into the history of the site.
We are a very small, independant and unfunded organisation and cannot afford to employ a political lobbyist such as NAT & THT.
That said politically we face the same dilema that many organisation face when engaging with the political classes. We can deal with key members of government/shadow cabiinet, members of Select Committees. submit responses to consultations and calls for evidence as well as the House of Lords. Outside this many MP's will ONLY deal with constituents and that is why it is VERY IMPORTANT that those who use this site or have a problem should raised it locally with their MP. It is rare, though we try, to find a MP that will lend support.
There are many difficulties but the best we can all do is engage where we can and push our issues forward.
It need more than one person, one organisation including one the size of THT, it takes a community to make the case and subsequently make a difference.
I re-looked for the information obtained from the DOH about the level of funding and the correct information shows a grant received by the Shoutload project to be £211,00 and not £430,00, please accept my apoligies for this mistake, further details and information can be found at http://benefits.tcell.org.uk/forums/shout-loud-campaigning-safeguard-hiv...
Kevin
I will speak to John about this coverage, I have attached a quick analysis from the DWP website http://research.dwp.gov.uk/asd/index.php?page=tabtool which provided such information of everyone within the DWP benefit system.
I have also submitted a FOI request to the DWP asking them why they have removed the analysis for DLA by its Main Disabling Condition, I shall let people know it response when received.
For now I hope the information will somewhat answer the question you raise and more details can be provided upon the DWP website.
Once again thank you for your comments and submission to our survey.
Kevin
ps - addition.
We know that of the 92,000 people living with HIV/AIDS, 8,500 are recorded under HIV/AIDS for DLA, about 500 receive Attendance Allowance and 86 ILF (Independant Living Fund), also the true numbers accessing personnel budgets/direct payments is low. The analysis available upon the front page shows the analysis of those accessing PB/DP in London.
- In February 2009, 3 million working-age people had been receiving a key out-of-work benefit for two years or more.
- This number is similar to a decade ago. This lack of change contrasts with the trends in the total number of recipients of key out-of-work benefits, which had been declining steadily for many years but then rose sharply in the year to February 2009 (see the indicator on all recipients of out-of-work benefits).
- Sickness or disability is overwhelmingly the single most important reason why working-age people claim out-of-work benefits over a long period. Three-quarters of working-age people – 2.1 million people – receiving an out-of-work benefit for two years or more are classified as sick or disabled. This number is slightly higher than a decade ago.
- By contrast, the number of long-term recipients of out-of-work benefits who are not sick or disabled has fallen over the last decade. In particular, the number who are long-term unemployed has fallen dramatically, from 200,000 in February 1999 to 40,000 in February 2009. It remains to be seen whether the recent sharp rise in all unemployed claimants (see the indicator on all recipients of out-of-work benefits) will have an impact on the number of long-term claimants.
- Two-fifths of all long-term claimants of out-of-work disability benefits have mental or behaviour disorders. This is more than twice the size of the next largest group, namely those with musculo-skeletal disorders.
- Long-term sickness or disability, as measured by people claiming out-of-work disability benefits for two years or more, is by no means mainly confined to people coming up to retirement. Just a third of those claiming these benefits for two years or more are aged over 55. A further third are aged between 45 and 54 and the remaining third are aged under 45.
View Graph as PDF (resizeable) Right click to save large version of Graph as PNG
View Graph as PDF (resizeable) Right click to save large version of Graph as PNG
View Graph as PDF (resizeable) Right click to save large version of Graph as PNG
The duration of time spent on a very low income can have a considerable effect on the deprivation of a person or family. The majority of individuals who experience persistent very low income are claiming either Income Support (IS) or Jobseeker's Allowance (JSA). The chosen indicator is the 'number of recipients claiming JSA or IS for two years or more'.
In 2002, the IS/JSA allowance for a single person of working age was £53.05. A person spending two years or more on a weekly income on that scale suffers considerable deprivation. Furthermore, the weekly payment does not rise with time so that as households' goods and clothing wear out, money to pay for replacements must be found within the same, limited weekly budget which has to cover all the essential costs of food, heat, power and travel.
When using benefit data, it is important to remember that a considerable number of people who have incomes low enough to make them eligible to claim do not do so. Take-up varies across the population. It is thought that in 1999-2000, between 87 and 95% (by caseload) of eligible parents claim income support. The equivalent rate for pensioners is considerably lower at 63-82%.1
Another important factor is deductions from benefit. In 1996, a third of all Income Support claimants were having some money directly deducted from their benefit income. Money was deducted to pay for electricity, gas and water, for housing costs, including mortgage arrears, for Council Tax, and for recovery of fines, Social Fund payments and Child Support Maintenance.
For all the graphs, the data is for the month of February of each year.
The first graph shows all those of working age who were in receipt of a 'key out-of-work benefit' for two years or more.
'Key out-of-work benefits' is a DWP term which covers the following benefits: Jobseeker's Allowance, Income Support, Employment and Support Allowance, Incapacity Benefit, Severe Disablement Allowance and Carer's Allowance. Note that this list is slightly different from 'key benefits', which also include Disability Living Allowance.
For each year, the total is broken down by type of claimant, namely: unemployed, sick or disabled, lone parents and carers. Note that a small number of 'others' have been omitted from the graph.
As can be seen from the first graph, the majority of long-term claimants of key out-of-work benefits are sick or disabled. In this context, the second graph shows, for the latest year, a breakdown by reason for those who have either been in receipt of Incapacity Benefit for two years or more or are in receipt of Severe Disablement Allowance.
The third graph shows, for the latest year, an age breakdown for those who have either been in receipt of Incapacity Benefit for two years or more or are in receipt of Severe Disablement Allowance.
The data source for all the graphs is the DWP Work and Pensions Longitudinal Study and is for Great Britain. The data has been analysed to avoid double-counting of those receiving multiple benefits by matching data from individual samples.
Overall adequacy of the indicator: high. The data is thought to be very reliable and is based on information collected by the DWP for the administration of benefits.
Overall aim: Maximise employment opportunity for all.
Lead department
Department for Work and Pensions.
Official national targets
None.
Other indicators of progress
Overall employment rate taking account of the economic cycle.
Narrow the gap between the employment rates of the following disadvantaged groups and the overall rate: disabled people; lone parents; ethnic minorities; people aged 50 and over; those with no qualifications; and those living in the most deprived Local Authority wards.
Number of people on working age out-of-work benefits.
Amount of time people spend on out-of-work benefits.
Previous 2004 targets
As part of the wider objective of full employment in every region, over the three years to Spring 2008, and taking account of the economic cycle, demonstrate progress on increasing the employment rate.
As part of the wider objective of full employment in every region, over the three years to Spring 2008, and taking account of the economic cycle:
- increase the employment rates of disadvantaged groups (lone parents, ethnic minorities, people aged 50 and over, those with the lowest qualifications, and those living in local authority wards with the poorest initial labour market position); and
- significantly reduce the difference between the employment rates of the disadvantaged groups and the overall rate.
- National minimum wage
- Tax credits and their predecessors
- Increases in child benefit
- Pension credit and its predecessors
- Second state pension
- See the 2007 IFS report entitled A survey of the UK benefit system.
- See the DWP site on benefit statistics.
Graph 1
| Thousands | |||||
|---|---|---|---|---|---|
| Year | All cases | Sick or disabled | Lone parents | Unemployed | Carers |
| 1997 | 3,130K | 1,920K | 660K | 360K | 190K |
| 1998 | 3,000K | 1,930K | 620K | 240K | 200K |
| 1999 | 2,940K | 1,940K | 580K | 200K | 210K |
| 2000 | 2,950K | 2,010K | 570K | 140K | 210K |
| 2001 | 2,980K | 2,070K | 570K | 110K | 220K |
| 2002 | 3,000K | 2,120K | 560K | 80K | 230K |
| 2003 | 3,050K | 2,190K | 560K | 60K | 240K |
| 2004 | 3,050K | 2,200K | 540K | 50K | 250K |
| 2005 | 3,040K | 2,210K | 520K | 50K | 250K |
| 2006 | 3,020K | 2,200K | 510K | 50K | 260K |
| 2007 | 2,980K | 2,180K | 500K | 50K | 260K |
| 2008 | 2,920K | 2,130K | 480K | 40K | 270K |
| 2009 | 2,870K | 2,110K | 450K | 40K | 280K |
Graph 2
| Reason | Number of claimants (thousands) | Share |
|---|---|---|
| Mental and behaviour disorders | 840K | 42% |
| Musculoskeletal | 350K | 18% |
| Circulatory or respiratory | 140K | 7% |
| Nervous system | 140K | 7% |
| Injury and poisoning | 90K | 4% |
| Other classified | 200K | 10% |
| Other not classified | 220K | 11% |
Graph 3
| Age group | Number of claimants | Share |
|---|---|---|
| Up to 24 | 70K | 4% |
| 25-34 | 220K | 11% |
| 35-44 | 420K | 21% |
| 45-54 | 590K | 30% |
| 55-64 | 660K | 34% |
I have today received the DWP response to the numbers by main disabling condition, file attached and response.
Thank you for your Freedom of Information request received on 29 September 2010. You asked for the following information:
1. The number of people accessing DLA by main disabling condition?
2. Why this analysis was removed from the DWP website?
In response to question 1, the attached Excel spreadsheet shows Disability Living Allowance cases in payment at November 2009 by Main Disabling Condition.
A diagnosed medical condition does not mean that someone is automatically entitled to DLA. Entitlement is dependent on an assessment of how much help someone needs with personal care and/or mobility because of their disability. These statistics are only collected for administrative purposes.
The way disabling condition is recorded on the live system was changed in October 2008. Previously the condition considered to be the main driver of the claim was recorded for Care (where a care component was awarded) and Mobility (where a mobility component was awarded) and a main disabling condition was derived from these. Since October 2008 a Primary disabling condition is recorded and the main disabling condition usually equates to this. A secondary condition is also recorded. Under some circumstances the secondary condition may be used as the main disabling condition - for example when a claimant with a terminal illness is awarded DLA under Special Rules provisions. In these circumstances the Primary condition is recorded as "Terminally ill" but the secondary condition would generally record the nature of the illness. In these cases the actually illness is used to derive the main disabling condition.
In response to question 2, the main disabling condition has been removed from the 5% sample DLA Tabulation Tool due to an error in the codes from May 2006 to August 2007. This error will be corrected as part of the statistical release on 17th November 2010. The previously published numbers from other quarters were unaffected by this issue and will be unchanged when the breakdown is reinstated. For information the DWP Statistical Summary First Release, which is published alongside the quarterly release, details all known issues, changes and revisions to the statistical summary. You can access the August First Release on the DWP website at: http://statistics.dwp.gov.uk/asd/asd1/stats_summary/stats_summary_aug2010.pdf .
An additional response can be found at http://benefits.tcell.org.uk/forums/dwp-quarterly-statistics-dla#comment...
In response to your question "The website would benefit from improvement to the layout. There's masses of good info but it's not always easy to find." we have a few answers to this.
1. TCell is limited within it means to access additional software and support which would allow us to upgrade and access external support and sites which require funding.
2. TCell is looking at an alternative approach and presentation, this is to be advised.
3. How to use TCell and it forums are listed at http://benefits.tcell.org.uk/forums-keywords/how-use-forums
4. Upon HIV Benefits webpage we have included internal links to make it easier to access, users also have the option to search by key words, located upon the right top hand side.
5. We use our Forums (click here) to disseminate information and facilitate your comments and queries. The volume of information can vary from day to day and the menus to the right detail the last 10 New Forum Topics and Recent Comments. To keep up to date always check the forum relevant to your area of interest for the latest postings or use the search box in the top right hand corner of the page.
6. Technical and orther information can be found at http://benefits.tcell.org.uk/forums-keywords/website-technical-information
Unless funding or external support is received, we contuniue within the given realms, any offer of help or support would enable us to expand and present the information in a different format and presentation, this be most welcomed https://www.paypal.com/uk/cgi-bin/webscr?cmd=_flow&SESSION=gWKvIg_px3F5S...
Thank you for your comments and taking part within the survey, the survey is still open for comments and views.
Thank you.
Thank you for completing our survey and in response to your additional comment "benefits information for over 60s and implications of change to pension age" this is partially covered under the various sections http://benefits.tcell.org.uk/forums-keywords/benefits . I shall speak to John in more detail to see how we can further present this information.
A list of entitlements can be found at.
http://www.adviceguide.org.uk/index/life/benefits/benefits_for_people_ov...
http://www.direct.gov.uk/en/Pensionsandretirementplanning/index.htm
http://benefits.tcell.org.uk/forums-keywords/benefits/state-pensions
Kevin
Thank you for raising this. We have always had an interest in Ageing with HIV. This is a relatively new area in so far as many with HIV were, when diagnosised not expected to live into retirement age.
I have, though no longer, have been involved in Ageing projects including studies we ACRIA in the United States.
We do cover certain benefits for those 60 years and over.
However the more important ages to be concerned with are those "Ageing with HIV" medically over 50 years old and in terms of benefits the key age to be concerned with is the State Retirement Age (which will be increasing by 2020). http://tcell.org.uk/forums/ageing-hiv
For those under State Reirement Age if you claim Disability Living Allowance you continue to recieve this past that age. Unless you have residential care provided by a Public Body and as the Spending Review indicated the mobility component is also to be removed from those recieving residential care from a Public Body.
For those over State Retirement Age, the equivilent DLA benefit is Attendance Allowance. This excludes the Mobility Component of DLA.
I take the point that more should be done with Pensions.
In response to the question left "Implication of the CSR" more information can be found under http://benefits.tcell.org.uk/forums-keywords/benefits/benefits-archive/c... . Thank you for completing the survey.
Hi all,
great site I use it quite often as a HIV benefits specialist, although the site is Predominantly towards guys with HIV, other people use it as well like carers of guys with HIV and benefit specialists like me. I would like to see more use of the site from the DWP though.
Chris
Chris, thank you for your encouraging words.
The site is for anyone who suffers with HIV/AIDS. Though I freely admit that we lack the experience of women and families personally, we try to ensure we cover these issues and would certainly more than welcome input here. I guess I would be considered a white gay "middle class" man and my personal experience is limited accordingly. Therefore we welcome and encourage others from different backgrounds, cultures, creeds, religions etc ... to engage and build the experience and knoweldge of us all. Collectively as the HIV community we have "strength in numbers".
I am extremely pleased that we also get involvement from the wider disabled community. I, certainly in my efforts, engage more broadly. This is important as, medical condition aside, there are so many general issues that affect us all. Again, we all benefit from the wider experience.
Having said that we DO need to continue to make the case and raise the specific issues concerning HIV/AIDs.
Not least the "stigma" faced by people with this illness. I welcome the broader contributions from the wider disabled community as it encourages me that we are, as a positive by-product, fighting this stigma.
You should note that National AIDs Trust (NAT) are part of the Disability Consortium and Terrence Higgins Trust (THT) are on the DWP Pension, Disability and Carers Service Advisory Forum. THT has been helpful in raising broad issues from us on the PDCS forum.
Thank you again, your post helps keep us motivated.
John.
Chris hi,
TCell was never conceived primilary towards guys with HIV/AIDS. What we have been able to do is something which I have not found from within the HIV/AIDS sector and that is to further inform people of their rights, responsabilities, entitlements and options online through the information and detail that we list and collate for people to use.
We know from the comments posted that the site is not just used from within the HIV/AIDS community but a wider disabled community.
GIven that no funding is received and this has been requested within the HIV sector it has been felt that our cause didn't meet criteria or more I suggest would impose on the limelight of others for which funding is received. I should also add given the numbers who access the site daily of between 400-800 people and given the reasoning for why this site first started by John and others, has seen this resource used for many reasons.
Thank you for taking the time to comment and take note of your further comment on the DWP!
Kevin
The website has been a real help to me but I do find it difficult to navigate to get information.
Thanks for posting this comment from the survey Kevin. Moreover thank you to the originator for completing the survey. We like to be transparent where we can and this is exactly the type of feedback we need.
There has been a conversation on this today. We hope that in 2011 we will be able to find the necessary solution to make this easier as part of the review of the website "penned in".
Part of the solution may be a technical one, part may well be how we organise the information.
More detailed feedback and ideas here would be welcome. Please email them to me, john@tcell.org.uk .
When we come to the website review we will then look through them all to feed into how we proceed.
On a more general point. This goes for any web search be it a website or a web searching engine like "Google". The more words you can use to specify the information you need the more accurate the results returned. On our site, however, I fully accept we should look at improving this.
Also refer question #8 for additional information on how to use the website, directly linking to http://benefits.tcell.org.uk/forum lists the topic's covered.
With regards to the TCell survey seeking the views and comments to the question: Would people living within London like a Pan London approach and administration with the AIDS support grant, the results so far shows:
A positive 82.4% are in favour and would support a Pan London approach, like that of the London Specialist Commission Group collecting together the AIDS Support Grant and additional funding from each London authority to manage as one collective fund to provide HIV social care and support, over 60% are in favour of either the London Specialist Commissioning Group or an Independant company to administer the grants.
The survey shall continue to remain open until the 14th February 2011 so that the collected information can be used. To be more inclusive and to make others aware of this survey, UKCab has published our request, I have further emailed various HIV/AIDS organisations within London, I have also brought this to the attention of London Councils, the Mayor, Health and Public Service Committee and others known, thus reaching as many people as possible within the limitations that we have available to us.
Thank you.
We are also running a quick 5 question/answer survey asking: Would you prefer a Pan London approach to HIV social care?, we are only seeking responses by those affected or living with HIV/AIDS http://www.surveymonkey.com/s/C2BHZGB and hope you will take part in.
We would like to thank everyone who has responded and left comments to the survey "Would you support a Pan London approach, like that of the London Specialist Commission Group collecting together the AIDS Support Grant and additional funding from each London authority to manage as one collective fund to provide HIV social care and support?" which ran from the 18th December 2010 to 14th February 2011 (8 weeks).
A list of the questions, results and comments left under the survey are published, click here (this file is in a pdf format)
The main question asked was:
Would you support a Pan London approach, like that of the London Specialist Commission Group collecting together the AIDS Support Grant and additional funding from each London authority to manage as one collective fund to provide HIV social care and support?
Results of 74 respondents’
76.4% Yes (55)
22.2% No (16)
1.4% (1) Don't Know and 2 didn't respond
For what ever reasons submitted, our survey now suggets 85% of the respondants are in favour of a Pan London approach using the ASG grant and collective local authrotities grants/monies directed to people living with HIV/AIDS be provided by one resource.
Collectivelty, responsabilty and answerable to both the tax payer and people in need of support will this happen.
I will at the end of the survey publish the comments, total results for all to see. Of course a panel of equility/diverity/partnership/involvement with those living with or affected by HIV/AIDS will be sought. Less duplication/administration will be a powerful point to raise when bringing this issue to London Councils in which 32 LA are involved. Both state and independance chcoice is required to be met and funded, this I don't detract from but impowerment from those who have no sought the needs and requirements of living with a disbaility is who I hold accountable!
Given that only 3% of the ASG is awarded to direct payments, who is in control? When I try to access services on a state basic income of £5,530pa and am informed I don't meet crieria, no pension rights, holiday entitlements, si6ck and redundancy pay options/respite and I live with HIV, what would you say?
The LSG underspent £9m of the PCT budget (and this is to increase) £256m when to PCT to support Carers, £1Bn Social Care Budget and more, £42m London personilisation with no scurnity to the tax payer or you. In a news articule Gordon Brown committed this country to a £52bn debt to be repaid 5x fold, on what planet/income or soverigntry does he work for? I have raise this question with Ed Milliband MP.
Given that we now have the resources to communitate further, express views, be informed, will those in power or seek address the many than the few "Trek quote"
Will London now relequince it choice, power, options and control to those through the Localism Bill and now allow an independant, self serving, commissioning, responding poeple take over and provide as that which consultation and discussion provides.
I have noticed on the remarks left under the TCell survey about the resources of the ASG and were it is spent, more information on our analysis of a FOI request to the 32 London Councils and asked how it spent its ASG (2009/2010), http://benefits.tcell.org.uk/forums-keywords/benefits/social-care-rights...
Also the NAT report suggested that 49% of LA didn't consult with it services users in which LA do have a duty and responsability under UK Legalistation. http://benefits.tcell.org.uk/forums/projected-asg-spend-and-budget-20102... provides an example of how services would be for 2010/2011 now that we know the 2011/12 level of funding, which will see an increase of about 16% in real terms cash from the communities grants, it will depend on how LA decide to proceed.
Yesterday I published the findings of London Councils decision to it grants http://benefits.tcell.org.uk/forums/consulting-future-role-and-scope-gra...
Looking out the grant of the ASG the UK Government provided additional resources to meet other needs.
Thank you for those that have given us feedback via the survey thus far. It will continue to run. We monitor the responses and the survey is anonymous.
We ask what else you would like to be covered? We have had a suggestion that we should cover medication.
This is a good point as many I meet often ask us why we don't deal with HIV medication and HIV health in more detail.
There are many websites both in the United Kingdom and abroad that deal with HIV health and medication in much better detail but more importantly with much more specialist knowledge than we could ever do. Yes we all take the medication and know how it affects us in our daily lives. The medical side of HIV is very well financed and resourced.
To cover medication would take the website in a slightly different direction and subsequently dilute the time and resource we have to deal with our primary goals. Top of the list is to give a place and a voice for the other issues, not covered widely, for HIV+ people in maintaining there life where they rely on the Social and Welfare Support.
We started this project because there was no information on DLA available on the internet from any HIV organisation on what was happening here. We continue to believe that living with HIV requires two approaches. The Health approach and the Support approach.
If we grow and are able to provide more resource (which is of course all down to money - lets be honest!) than we will look again at providing more information. Of course if you are telling us you want a forum to discuss medical & health issues than I am happy to create that for you.
We do, as you would expect, take an active interest in HIV health. We engage with various organisations both state and voluntary to keep abreast of the broader issues relating to the health care we all need.
We rely on our fellows in the HIV community.
You may be interested in this forum "Introduction to HIV treatment and care".
You can find links on health / meds / Support below -
HIV Medical Information
Patient Forums
Support Agencies & Groups