Hiv charities UK.What good are they?

[Danny12345]

I have been diagnosed for 5 years and through the first 4 years I worked and supported myself.
 
         I have now become too ill to work and my financial situation is dire,my house will be shortly getting repossessed and I will become homeless.

          I have contacted all the Hiv charities in the UK for help(need about £4500 to get out of the smelly stuff) and got the same story from all of them,oh that's not what we do but why not try..... I won't mention any names as I am unsure of the legal position if I name them,  round and round I go in a vicious circle.

          Even though I am barely able to feed myself I did get offered a free head and foot massage.

       So my question is what is the point of all of these charities that raise million of pounds every year,that I myself have donated to in the past if they can't help the people who need it???    

[alberche]

Dear Danny,

Charities usually do not help people with money, but with services and support. Maybe in the UK there are public social security funding help for people in your situation. Maybe what a charity could and should do for people in your circumstances is helping you to ask for those kind of public help, or showing you what resources in your local area are available and suitable for helping you. Or, at least, to give you some advice on how to better manage your situation and organize your priorities.

Unfortunately, most of charities, specially big ones, have become in very big bureaucratic systems lobbying for their own interests. Here in Spain happens just the same, and, as far as I know, also in France and other european countries. Now, there's less and less poz people in steering committees, and more and more technicians and "professionals", most of them not living personally or even nearly with HIV, and for whom being in a charity is just a job or simply a more step in their carreers...

Lots of thecnicians, observatories, reports, programmes and projects litterally "eat" the most of the money they raise, spent in wages, salaries, per diems, travels and so on... They thing they are very important and what they are doing is very important... but, the question is, for who is it important?

When you, or me, or anyother with HIV, has a real, concrete problem, and knock their door, they simply give you good words and come along with you back to the exit door with a hand on your shoulder...

I honestly think this model of charity is not useful anymore -if it was at any time in the past- and is not doing nothing for us but using us in their name to raise money and have public influence to use public relationships to pull up careers, or personal or gremial (psychologists, sociologists, and other "ists" and "ians"...) interests, not people with HIV interests.

And, the worst of all, they are talking on behalf of us, doing lots of noise, and getting the attention of public and politicians, but keeping our real voice apart.

An example: here in Spain, in Madrid, regional right-wing government, is trying to privatize step by step many of the public healthcare system services. Public services for people with HIV, such as free and anonimous testing centers, day-hospitals, and training of medical care personnel are being reduced or keeped just the same year after year, while needs of people with HIV have been increased. Charities had never said a word, never took a real commitment apart of some empty messages.

But now, this right-wing government is planning to dismantle and disseminate in other services the Central Public Health administration of Madrid region and, now, of course, charities came together to protest... Why? because this administration is on charge of a part of public funding assigned to charities to manage some of their projects...

hugs :-)

[david3012]

Hi Danny

I live in the UK and have worked in the chairty sector for many year. The HIV charities will be of very little help to you. My personal opinion is that the large, well known ones are now in existance purely for their own benefit and offer little in the way of help to people living in the UK with HIV/AIDS.

Pulling together £4.5K is not impossible though. Visit you local CAB and ask for their help making application to charitable trusts. Not all CAB's will do this as it can be time consuming but even if they are unable to help, they shoudl be able to get you a list of trusts and foundations you can apply too. I know others who have been helped in this way.

The DWP 'might' be able to offer limited help though the social fund but I dont think its really a goer. Again though, the CAB could help you with this.

If you dotn have a CAB in your area then look for independant advice centres - Their help will be free. If you get stuck try asking your local council if they can point you in the right direction.

Best of luck.

David

[Veritee]

Hi I also live in the UK - Cornwall - and do a bit of voluntary support work for our only HIV charity in our area Kernow Positive Support KPS: http://www.kernowps.co.uk/

I feel for your situation, I feel very lucky that despite our HIV - and my husband has been very low with AIDs and PCP although now much better he will never be fit enough to work again and nor will I probably - we are privileged to live in a lovely home in the countryside and I know and appreciate how lucky we are ( although we have worked to pay for it for over 25 years so it did not come easy)

But I was by profession a youth and community worker and I have worked professionally for other charities and still run another charity for a different issue that I founded and now volunteer for KPS - but do not know exactly how KPS works or other HIV charities as I am a volunteer and not now a paid worker or trustee for any HIV charity.

However what I do know is that KPS, and also probably other UK HIV charities, are not in a position to offer help in the form of large monitory grants to individuals at the level you require - some small grants are given out even by our small charity KPS to individuals but these are at most in the low £100s or below and not thousands of £s.

That their (KPSs) funds are raised/obtained and given by its funders on the basis that charities like this provide services that can benefit all who are living with HIV in a given geographical area rather than give money as grants to individuals living with the issue they work with, in this case HIV .

For instance in terms of housing the charity I volunteer for, KPS, provides a relatively effective housing advice service which now employs a really good housing officer employed to help people living with HIV with their housing needs including getting the funds to provide their housing needs. http://kernowps.co.uk/housing.htm

But theses funds are usually from benefits or public funds that you may qualify for, not pay-outs to you from the charity as an individual living with HIV.

So if you were to want to re-locate to Cornwall for instance  - as people with HIV have as it is a lovely area and can be a more stress free place to live if you need the benefit of living in a less stressful environment - you could contact our housing support officer and he will do his up most to help you find accommodation within your means and to help you get finances to pay for it. And this could also include advice and help in applying to other charities who do give grants to individuals experiencing hardship for housing needs. A few larger Charities like this do exist and grants are given on an individual needs basis to those with many different reasons and circumstances.

However charities like KPS - and to my knowledge other UK HIV charities, are unfortunately just not rich enough to give out grants to individuals for this themselves so the funds they do have are better spent on employment of experts like our housing officer to help people find their own funds or for other support services for those with HIV in our area of the UK.

I guess in an ideal world HIV/AIDs charities in the UK would have enough funds to give grants to individuals living with HIV and based on circumstances and need to help with things like accommodation, but in practice I guess no HIV charity has the considerable amounts of income, investments or large amounts from benefactors to allow them to do so, as this would require a huge amount of residue and unused income if you consider the amount of people that may want to apply for such a grant? and I do not think from what I have seen that HIV charities in the UK have this to offer.
It may seem from the outside that HIV charities get a lot of money but what they get in the UK at least is just a drop in the ocean when it comes to the amounts charities that give out individual large grants would need to be able to offer this provision.

However if Cornwall is one of the rural areas you are considering to get out of living in town you could contact our housing officer, explain your situation and what you need and see if he can help in some way - he is very good at what he does - or contact HIV charities to see if they have a similar service in countryside areas you are considering moving to.

I will point out however that while there are benefits to living rurally in terms of environment, slower pace of life, more space, better air, if you live with HIV as you and we do there can be a big downside to living in the country in the UK in terms of isolation and often extreme ignorance and fear, much stigma and discrimination ( to the extent that many HIV Poz people in Cornwall lead double and secretive lives and do not tell anyone of their status, often not even others living with HIV in case they accidentlaly let it slip that they have it too!!) lack of support, lack or no peer support groups or any easily assessable services, distance to hospitals if and when you need them and other medical care - I travel 20 miles each way to my treatment clinic which when I feel very ill is too far and public transport if I feel too ill to drive is practically non existent for this journey -

But if rural life is for you and you can cope and are prepared for the disadvantages of living rurally in the UK with HIV, good luck with your endeavour, I am sure as someone else has said that if you are determined to move to the country it is possible. I know many who have similar reasons who have done it with little or no savings etc.

In this financial climate it is difficult but not impossible

All the best

Veritee

[Veritee]

PS. As David said the Charities in the UK that do give out such larger grants to individuals are called Charitable trusts.
I have never got such grants for myself ( I could have need to apply one day you never know ) but when I was a professional Youth and community worker was often successful in helping others in need get such grants.

You can buy a book listing the major ones or go and see the complete list at your local library.

Or get A Guide to Grants for Individuals in Need From the Directory of Social Change, 24 Stephenson Way, London NW1 2DP, tel: 08450 77 77 07.
(Lists charities that help individuals and have more than £500 to give away. There are separate sections on regional charities and those connected to specific occupations, illnesses or disabilities. Published every two years. Current edition: 10th edition 2006.

This website might also give you some information: http://www.funderfinder.org.uk/links_trusts.php
A good page for what you want is here: http://www.funderfinder.org.uk/links_resources.php#individs

It is possible to be successful in applying for yourself, otherwise seek the help from CAB or a HIV/AIDS support worker like our housing officer in the area you wish to move to

Again good luck
Veritee

[FrederickGNP+USA]

Danny man,

Your problem seems to be one that all countries are adressing with in Charities or Non Profit Charities, you must understand AIDS is big business and a lot of folks have their hands in the pie.  We are having the same problems here in the USA where 28 billion dollars of funding a year 18 billion going to USA and 10 billion or so going to Global Countries seem like a lot of money, however these funds are keeping 500,000 plus people alive in USA and hopfully 10 million more in other countries with ARV's.  The HIV Charity work force must get their money first, for their staff and their personal housing and then the left over are for the HIV people.  You must also understand that many folks are losing their homes that are not HIV positive, just not enough resouces for all people, when many are horeing a lot.. it is the sur plus labor of the rich and then the poor and I don' t think it is a HIV thing.  I am greatful for all the medicine and chance to start over in my life to be healthie and it is ok now with me that some folks are getting rich off HIV and some get to stay alive for it is a old economic scheme and is the same with Cancer and other illiness for some get to live with the meds, while other get a new boat or big house.  The problem in the USA is that so much paper work and layers and layers of combine systems with layers and layers of confidenality to protect from law suits that one wonders how anything can get done for the case worker say is not my job or they don't answer the telephone and have a recording will repond in 24 hours, hoping to not get the person and start the 24 hour policy over and over again until maybe if your lucky 30 days the person will connect or  communitcated with the client and this scheme to save money or they say  go  read this book or this grant. With  more and more people getting HIV and the pie gets smaller and smaller and for some they work to get a  bigger and biger piece of the pie to increase their personal assets   and it has nothing to do with charitiy or non-profits charity for most of them have no idea what LOVE is pretaining to the true meaning of Charity.  I would put my Faith in something else, for these groups are very sick in their thinking, actions and scheme in my opion.  I would prayer for roomates, action and wisdom  and other sources to help with your home or maybe it is time to find a new home.  I will pray for your secuity in your journey and peace and JOY.  For the old school thinking about getting angrey is not healthie for anyone and will not work anymore for again AIDS is big Business and the money is the God for most of them.   Be thankful that your heart is pure in your walk, not to be a part of such a schemes.

Peace  man,

Frederick

[REDBRIDGE]

Hi ,
I have in the past worked as a volunteer for two major HIV charities in the UK [one of them dosn't exist any more]. It was heartbreaking to see them change from campaigning organizations which fought for
people living with HIV .Now, in my opinion, they seem to specialize in schmoozing with celebrities and advancing their own careers .The service users are not high on the list of priorities ,I presume most of the money raised goes on staff salaries. The services they do provide such as councilling are mostly people who are doing a training coarse in councilling, and so provide their services free .It's very sad , but that's the way things have gone I'm afraid .

[newt]

I do have to ask, why did you become too ill to work? Isn't preserving health and therefore economic activity the point of combo, or was this a bad trip for you, the antiretroviral thing?

- matt

[mecch]

Unfortunately, most of charities, specially big ones, have become in very big bureaucratic systems lobbying for their own interests. Here in Spain happens just the same, and, as far as I know, also in France and other european countries. Now, there's less and less poz people in steering committees, and more and more technicians and "professionals", most of them not living personally or even nearly with HIV, and for whom being in a charity is just a job or simply a more step in their carreers...

In the USA, charities have to publish what they do with their funds, including the amount spent on administration. This is public information and any foundation with a decent reputation does its best to keep overhead within reason.

I am terribly sorry to hear about the frustration people feel when "charities" can not give money individually.

I don't know the solution for you, in England. 

It is a bit of a tangent, but before anyone donates to "charity", if you want to get a bang for your buck, just ask for the information about what they do with the money!

http://www.charitablechoices.org/cfc_stand.asp

There are regretably a lot of charity whores out there, people making a career out of NGO work.  Also, I have a few friends in UN agencies and its the same problem, internationally, a few total "global fight against aids" divas who suck up money with their VIP expenses and narcissism. 

But don't thow the baby out with the bathwater. 

So many people and so many organisations do good work, too.

[alberche]

The problem with Charities is not their lack of transparency with the use of fundings. All countries have more or less accurate systems to survey and follow up, and this information is public and accessible to anyone. And most of charities seem to be doing a transparent and correct managing of the money they receive... but... the problem, in UK, Spain, France and other European countries (I guess maybe also in the USA) is that Charities have changed politics, activism, and proximity to people with HIV in our daily and specific problems, for public relations and a "high degree of interlocution with governments and funding entities" (such as Pharmaceutical Industry Companies, Banks, Public Agencies, Public Administrations, Sponsors, etc, etc.)

The result is that they have become big bureaucratic structures, ruled by technicians (most of them not living with HIV, neither with someone who lives with HIV) for whom this is a mere professional issue, not a personal or a political one.

These organizations are now trapped in their own politically correct language and in a sort of cinic "goodism" that has taken away the voice of people living with HIV.

There's no more room for us in the media, or in political debates... the only voice heard is that of NGO's and charities, and it is mostly a technical and finantial voice, rather than a political and rights related one. If the true is too rude and may rise polemics and debates, then they simply do not put it in their figures, in their depiction of the situation. They simply limit themselves to talk of their problems, and to achieve their aims as institutions.

In Europe most of these big structures are just simply in an idle point. Most of them are about to close or just living of selling their services or gaining some contracts for public services with local or regional administrations. Most of them are finantially monodependant (from public funds, from lab funds...). None of them is able to rise money from their members, neither from PWA in their communities nor from people in general, just like other NGO's have suceeded to do (environmental, human rights, etc).

Maybe we should think of getting back to the starting point again, just people working with and for people, doing politics...


 

[actupts]

The problem with Charities is not their lack of transparency with the use of fundings. All countries have more or less accurate systems to survey and follow up, and this information is public and accessible to anyone. And most of charities seem to be doing a transparent and correct managing of the money they receive... but... the problem, in UK, Spain, France and other European countries (I guess maybe also in the USA) is that Charities have changed politics, activism, and proximity to people with HIV in our daily and specific problems, for public relations and a "high degree of interlocution with governments and funding entities" (such as Pharmaceutical Industry Companies, Banks, Public Agencies, Public Administrations, Sponsors, etc, etc.)

The result is that they have become big bureaucratic structures, ruled by technicians (most of them not living with HIV, neither with someone who lives with HIV) for whom this is a mere professional issue, not a personal or a political one.

These organizations are now trapped in their own politically correct language and in a sort of cinic "goodism" that has taken away the voice of people living with HIV.

There's no more room for us in the media, or in political debates... the only voice heard is that of NGO's and charities, and it is mostly a technical and finantial voice, rather than a political and rights related one. If the true is too rude and may rise polemics and debates, then they simply do not put it in their figures, in their depiction of the situation. They simply limit themselves to talk of their problems, and to achieve their aims as institutions.

In Europe most of these big structures are just simply in an idle point. Most of them are about to close or just living of selling their services or gaining some contracts for public services with local or regional administrations. Most of them are finantially monodependant (from public funds, from lab funds...). None of them is able to rise money from their members, neither from PWA in their communities nor from people in general, just like other NGO's have suceeded to do (environmental, human rights, etc).

Maybe we should think of getting back to the starting point again, just people working with and for people, doing politics...


 

I almost think it would be for the best if AIDS organizations were to, once again, be dependent on community support for funding.

Until the early 1990s, most ASOs were true community based organizations, with their staff, funding, and management all coming from people with AIDS and high-incidence communities (e.g., GBLTs).   Many ASO employees took part in AIDS activism after work and genuinely cared about People with AIDS.    PWAs and ASO employees has similar life experiences.  Simply put, ASO employees worked with PWAs because they wanted to work with PWAs.  Many "professional" social services types avoided ASOs due to low pay, dislike of affected groups and/or fear of being around PWAs.

After the passage of federal funding for AIDS and the beginning of effective treatments for AIDS, this changed.  ASOs, became, instead, monolithic entities staffed by well-credentialed "professionalized" staff who view AIDS as a paycheck, nothing more.  Paperwork requirements ballooned to satisfy government requirements and the social services mentality of many of the new employees.  Staff multiplied and often unionized, resulting in a "not my job" mentality.  Over time, the original founders and PWA employees and board members were pushed out, resulting in an organization staffed and led by mostly HIV-negative employees and board members with few ties to AIDS-infected or affected communities.  

Ironically, many of the sickest PWAs now have a hard time accessing AIDS services because their physical problems make it difficult for them to travel to the myriad balkanized agencies providing services, let alone comply with each agency's repetitive document demands.  AIDS organizations have no real incentive to streamline their bureaucracy or paperwork requirements because they are insulated by government funding from meaningful community pressure.  

Perhaps AIDS organizations would be more responsive if they needed to once again rely on community fundraising and donations.  Agencies that provided excellent services with reasonable salaries would survive, agencies that with endless paperwork mazes and pay their executive directors over $200,000 per year would not.

[buffaloboy]

Hmmm...there is a lot of doom and gloom about chariities and I have no doubt that much of it is justified. But I would just like to put a good word in for Positive East. They are helping me with two complicated benefit applications as well as one for public housing. The people I have dealt with quite clearly know their stuff, and they really make an effort to put you at ease. If any of these applications are successful then I will owe Positive East a huge debt of gratitude. And even if they are not, I feel that with their help, I have given them a much better shot than I would've done had I been left to my own devices.

So there is still some good work being done by UK HIV charities, although it seems that it depends on what exactly you need out of them.

[Theyer]

hello
With out knowing where you live in the UK its hard to advise, I have received invaluable help in the past but never direct monies.MOST councils fund CAB.s to work on dept problems