06:15 | 23rd June 2018

Columns: Caroline Guinness-McGann

Tue 29 May, 2012.
by Caroline Guinness-McGann


Click here for Archive

What about the dismantling of the welfare state and the law on the reconstruction of the NHS being passed in parliament

April showers and the big society.

As I write this April showers continue to teem down outside and the headlines pronounce the usual hose pipe ban due to the drought in the UK. I celebrate the lovely long evenings, the Bluebells in the woods and the trees coming into gentle leaf but the heating is back on after a mini heatwave last month - this country truly does have four seasons in one day.

Since I last wrote this column the news around the world moves on, From the continuing massacres in Syria or the start of the trial of Anders Behring Breivik in Norway, to Jack Straw facing a 'rendition' legal bid. The CONDEMS no longer have any support from any of our daily newspapers, even the right wing rags. A couple of weeks ago their reputation was shredded by of all things, a tax on warm pasties, a 5% cut in the tax rate for the wealthy, a 'Granny tax' and a non-existent petrol strike just before the Easter break which resulted in cars queuing for hours, petrol pumps running dry and Frances Maude advising people to store petrol in their homes which resulted in a woman accidentally setting herself alight! But the news which really got me riled was the reaction of large charities to the news that wealthy donors would have their donations capped at £50,000.

No, I am not upset at the thought of these charities losing some of their private funding but at the fact that this seems to have upset them all far more than the appalling treatment of the vulnerable, sick and disable.

What about the dismantling of the welfare state and the law on the reconstruction of the NHS being passed in parliament. Where were these large charities when they were needed, where were they when they should have been campaigning for those which really need them? Some of the most vociferous reactions have been from institutions which, in my opinion, should not have charitable status at all. Public schools, churches and the National Theatre to name but a few. In my experience the really large charities seem to pay themselves huge salaries, house themselves in luxury buildings, have 'celebrity' fund raisers and give very little of the money they have donated to them to the sick and vulnerable in our struggling society. 'Big Society'? 'We are all in this together'? who are they kidding? When I think of all the small charities that were run on a shoe string being forced to close, being swallowed up by charities which are more like large corporations it makes me want to weep. The HIV self help charities that were run by people ‘with HIV for people with HIV’ are no longer in existence and which did more to practically help those struggling with all the myriad complications of HIV than anything the only large HIV charity left seems capable of doing at all. Where was this large charity when the French company, ATOS, was given millions of pounds to 'Assess the sick and disabled' causing untold misery and stress to those trying hard just to survive on a daily basis? It is not just people with HIV who are going through these assessments but those with other disabling conditions. Where were those charities which purport to support those with life threatening and debilitating conditions when needed? But a threat to them having large financial donations capped has made headlines. They have protested to such an extent that the CONDEMS are now looking for a way to do a 'U turn'. What a self serving, selfish culture we find ourselves having to endure at the moment ... as you can tell, I am angry!

On a brighter note though, in my personal life things could not be better. A couple of weeks ago my daughter and granddaughter moved into our street and this has given me a new lease of life. I have never been a possessive mother as I was diagnosed in 1986 when my daughter was only 3 years old. I was told that I had a maximum of 5 years left to live and that those 5 years would be filled with terrible pain and a slow painful death. I had to believe this as people were already beginning to die around me and seeing them was like looking in a mirror. I was a single mother and had to make arrangements for her care once I was gone. I encouraged her to be sociable and to spend time with my close friends who had agreed to look after her once I had gone. This was a hard time to be diagnosed with HIV! It took me some time to find other women in the same situation but between us we formed 'Positively Women' and put into place structures and practical help for other mothers in the same situation. As more and more women died these services we set up became invaluable. Some of the children of these women (those children who survived or were lucky enough to be born HIV-) have now grown up and have children of their own, a few of them are still in contact with me and it fills me with great joy to be a part of their lives and to be able to tell them how wonderful their mothers were and how proud of them they would be had they survived. My own 'grown up' daughter is also in contact with her original peers. So, for me, to have survived to see my daughter grow up and now watch my granddaughter as she shoots up at an alarming rate is a dream come true, to have them both only a few seconds walk away is something I would never have believed in those dark days of no medication and thousands of deaths. I am just so grateful!

Having said all that though I am discovering muscles that have been dormant for years and I have become very aware of how HIV and years of toxic medication has aged my body, after a few hours spent playing and caring for my granddaughter I am left exhausted and aching all over, but the happiness it gives me makes it all worthwhile and even more determined to remain alive for as long as possible.

The next time I sit down to write this column we should be enjoying middle to late summer, I am sure there will have been many more twists and turns in current affairs and politics and, hopefully, more breakthroughs in HIV research. I read an article yesterday which announced great results in stem cell research on HIV infected cells. My next dream goal is to remain alive long enough to see a complete, painless cure for HIV infection and a generation to grow up without any fear of becoming infected themselves.

Until next time I wish you a great Spring ...


(c) Caroline Guinness-McGann April 2012


Back to previous page