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| Record turnout |
46 |
at
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A stunning turnout to honour our guest, the lead commissioner from the South London HIV Partnership. She was able to hear, first, hand of the many concerns on a variety of issues. A number of children enjoyed the crèche
Every morsel of the food was consumed: 3 large trays of cottage pie (made to a traditional and secret recipe but using only the best cuts of beef), 2 large trays of vegetarian lasagne, vegetarian samosas, onion barghees, French bread, fresh salad, fruit salad and a selection of cakes.... The vegetarian meals prove as popular as the meat dishes!
A raft of issues were aired. The achievements of the last month were reported and in particular the news in the opposite columns.
We heard some appalling news of mistreatment of four of the women present who had been placed in housing where they found themselves sharing properties with people who were delivering disgraceful exhibitions of prejudice including threats and actual violence. We are setting up further meetings with those concerned.
A large number of complaints about conditions at one of the major clinics and considerable dissatisfaction on a raft of issues there. We agreed to invite the lead clinician to attend to face questions. Some of the issues had been raised but the response from the liaison officer at the clinic was regarded as unsatisfactory.
The chairman announced he was now appointed a trustee at the Positive Place and would over time wish to hand over chairmanship to someone else. He also made it clear he would not step down until someone else was able to fill the role. He would then act as facilitator to the group filling the role of administrative support the Positive Place is contracted to occupy.
The commissioner expressed support for what we do and the role of the service user in the decision making process. She reported the new board of the South London HIV Partnership will meet on the coming Monday and a raft of issues (too numerous to mention here) should be raised there. Service Users are represented at that meeting by our Chairman, Secretary and Women's Lead.
Unfortunately our Women's Lead is at present unwell and she may not be able to be there this time. |
The things we do.... a note from our Chairman ... 7th July 2008
Representing service user views is not just a matter of showing our faces at a variety of forums, which we do, or holding meetings of groups of services users, which we do...
Beyond all that we are a group of people affected by HIV and AIDs and frequently my phone rings, or I receive an email or someone approaches me after a meeting or when I am on the premises of a service supplier and asks how to deal with a problem. Often these are major personal problems.
My approach is that if I can help I will. Sometimes the best solution is simply to introduce the person to someone who is better able to help. Sometimes it is a combination of the two.
For example: |
Local
A man facing some of the most horrendous problems in his personal life spoke to me. In the middle of dealing with all this a brown envelope had dropped through his letter box. The dreaded DLA review had arrived... even though he should not have been eligible for the review.
I was able to offer him some specific advice but better still to refer him to the excellent emotional support service at the Positive Place. The closeness of our relationship with PP proved invaluable. Within a couple of hours of his phone call to me he was seeing a qualified psychotherapist but not just any psychotherapist. He was seeing one of the most approachable people in the business.
I can say no more about his circumstances. What I can say is that while people argue about who is paid what and why and spurious statistics are banded about.... here is real evidence of very real help and support.
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At this meeting we carried out a poll and found that every South London clinic was represented. The largest group attended the Caldecott Clinic. North London clinics were also represented. There was a good mix of ages and pretty well every demographic group, etc. was represented and several religions.
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International
We have recently established strong mutual relationships with organisations overseas and this has included contact with those supplying treatment in other European countries.
Having qualified medical staff on our team has helped make these links very strong.
This month we were approached by a clinician in another European country who asked us to help arrange for some specific treatment needs for one of his patients who is over here for some months. The relationship we have with local clinics meant this could be arranged by a phone call.
Service User representation works at many levels.
Boundaries tend to hinder service delivery to people who face unusual circumstances. We are proud that Feedback South London is able to use its position OUTSIDE the system to overcome some of these difficulties. |
We do not hold a meeting in August so
our next meeting at the Positive Place
will be
HEAD TO HEAD
on Friday 12th September.
Special Guest: to be announced
See meetings page, soon, for more details . |
9th June 2008
A disturbing article in today's Telegraph points us to a report produced by the House of Commons Home Affairs Committe on the "Surveillance Society". Very relevant in view of developments at the SLHP. A link was added to our links page. This was modified to make an easier navigation on 12th June.
3rd June 2008
The Conservative Party
has published a "green paper" on the voluntary sector. We recommend everyone to read this. In the coming months we intend to discuss their approach and to make our views known to them. We hope to be able to attract speakers from them to enter into a discussion.
We have placed a link to information on this on our links page. |
Behind the scenes
Our website moved house
21st June 2008
Phew! We can all heave a sigh of relief. Over the last week our website has moved to a new "virtual server" at NetPivotal. The Netpivotal part was easy. The bit done by our previous hosts (the wonderful Blue and Miko)... was easy.
There is something called DNS servers... which take an age to update themselves and they are out of the direct control of the Internet Service Providers.... or some are and some are not.
The short story is that it took most of the week for our site to be widely available. BAH!
Feedback South London are most grateful to Blue and Miko who provided the service to now. They were suppliers to UKC and despite the collapse of UKC they continued to provide us with a service....
That could only go on for so long since they have been changing the nature of their business. We were fortunate to have their services and we were sorry to leave them. We look forward to an exciting future with Netpivotal. Look out for some new services on the site soon. |
Politics... where angels fear to tread!
The DLA campaign |
Few people would have predicted that a Labour government would target the severely disabled for a campaign of attrition.
This is exactly what has happened with the campaign to target people on Disability Living Allowance as a means of reducing numbers on Incapacity Benefit. meanwhile the bad back brigade remains untouched and the people who perpetually claim to be depressed can carry on claiming
Is this perhaps why the Gordon Brown's government is proving to be so unpopular?
You might think that. We couldn't possible comment!
Don't get us wrong. There are many people who legitimately suffer with their backs and their mental health. They deserve their benefits. So too do the severely disabled which includes people who, having been late diagnosed with AIDs, have been clutched from the very jaws of death.
who is to blame? Not only the government is to blame. You may like to consider which of the major HIV "charities" have been in bed with this government in planning this campaign.
A better way? Of course there is. Government simply needed to merge the separate DLA and Incapacity Benefits into one Severe Disability Pension for the severely disabled. Those just ill would be counted separately. A massive cut in IB receipients at a stroke! and the law? It seems to us the government are in breach of the Disability Discrimination Act, various tranches of the Human Rights Act and a whole host of other legislation. |
on Friday 13th June
Feedback South London
held another
successful
HEAD 2 HEAD
at the CREEK
At this meeting we welcomed:
- the Specialised Commissioning Manager HIV (South West London Sector)
who answered questions concerning the South London HIV Partnership and its services.
and also consultants carrying out a survey ofservice user participation in South East London.
An interesting introduction came from our group Secretary who had visited HIV organisations in Finland to see how they manage.
The main difference is that they seem to be well funded. There will be more on this soon so keep watching this website.
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| Tcell held a meeting on this issue at the Positive Place on 5th June. Check out the link to their website on our links page |
Health First
The news from Health First is not so good. Lewisham PCT has withdrawn its support for this joint enterprise and it remains unclear what remanants will remain of this very useful service.
May
The closure of Health First has now been announced |
Aches and pains?
"Not the only things that can be eased by Osteopathy" say the British School of Osteopathy
Click the ribbon for details of a FREE service to people with HIV and/or AIDs: |
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Recently released:
A survey of Primary Care Trusts
on
Patient and Public Involvement in
PCT commissioning:
All lace curtains
and no breakfast! |
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Head 2 Head |
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| May 2nd - Huge turnout at: |
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votes for monthly meetings at Positive Place |
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Around 30 very diverse people turned up for a slap-up super meal and engaged in a thoroughly enjoyable discussion on issues ranging from the effects of recent contractual changes in South London, which everyone thought had resulted in disastrous consequences, to the plight of some facing a rather unfair process threatening their income. The 3 hours was not enough. The conversation could have gone on all night.
We voted to have regular monthly meetings at Positive Place and also to look for somewhere suitable more accessible from the South West. The next Head 2 Head will be early in June. The exact date will be announced when the room can be booked. We hope to have representatives, of the lead commissioner for the South London HIV Partnership, present.
The issues were complex and some very distressing stories were relayed and yet despite this the mood of the meeting remained good humoured and enjoyable. We are pleased to be able to say that our policy of ensuring we include every group affected has shown how well people are able to work together when given the chance.
A representative of Tcell attended and gave some very good advice. A link to that organisation will be available soon on our links page. |
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Disabled?
There has been a lot of debate about this. It is worth looking at this DWP document:
Since the effects of medication are required, by the Disability Discrimination Act to be disregarded it seems, to us, absurd there should ever be any debate or doubt about this issue.
HIV is specifically named as a disabling condition in the Act and even were people, newly affected, to be disregarded the rules insist that previously having been regarded as disabled entitles you to the protection of the act.
We would direct you especially to A10, A15, B11 and B16 in the publication! |
Midweek - the independent peer support group for gay men has just announced a change in policy to reflect changed needs.
The group will now meet monthly on the third Tuesday in each month in Vauxhall and will call itself "MidMonth". This way they are able to provide a much more appetising meal and spend money on speakers and other entertainment.
MidWeek is supported financially by The Global Strong trust and the Eddie Surman Trust.
See our links page. |
We are advised to shop around for the best consultant. A recent article said "You have to kiss a few frogs before you find a prince..."
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April 2008
The South London HIV Partnership
The chairman recently met with the lead commissioners for the South London HIV Partnership (SLHP) and a selection of suppliers and prospective suppliers in South London. The SLHP came forward with some very constructive proposals for improving the way the partnership works and in particular with a significantly improved consultation process.
We have every confidence this is going to be the start of a much more effective way to deliver services to people with HIV and/or AIDs.
The Positive Place
Following on from this one of the participants (Positive Place) met with the chairman and shared with him their plans for the future enhancement of their services. (Positive Place have recently replaced UKC in the role of providing administrative support to Feedback South London).
Their plans are clearly at an early stage and for this reason they have asked us not to publish the detail. We are able to say, however, that they seem to be offering a very much improved service and they have mobilised their available resources to begin this process of improvement. Meanwhile they are taking steps to further ensure their financial stability by reorganising the way they use premises and staff. In this day and age it is encouraging to see an organisation in this sector which is able to increase its complement of full and part time staff.
News from Reuters
We are grateful to the National Aids Trust for drawing our attention to this item from Reuters:
EU follows U.S. with review of Glaxo AIDS drugs
LONDON (Reuters) - The European Medicines Agency said on Wednesday it was seeking further information about the safety of certain GlaxoSmithKline Plc AIDS drugs, after a study showed a higher heart-attack risk compared with other HIV medicines.
The move follows a similar review announced by the U.S. Food and Drug Administration last week.
see the article by clicking the ribbon:
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A few words from the chairman
Consider a meeting of 100 people. Most of those people are on salaries of around £40,000 pa. which is around £28.00 per hour. The meeting lasts half a day but they are paid to travel there and to return which means a full day. On top of the cost of their salary must be added the employer's contribution to National Insurance and the administrative cost of such things as their office and desk-space, payroll, human resources etc. This takes the real cost of the person to a figure of around £60.00 per hour (a very conservative estimate). This puts the cost of the meeting at £42,000 plus the room hire, fees for visiting speakers, catering, projectors etc.
Such meetings are everyday. |
Marcus Tullius Cicero (106 - 43 BC) wrote:
The Welfare of the people is the ultimate law.
The people's good is the highest law.
The strictest law often causes the most serious wrong.
Where is there dignity unless there is honesty?
It is a true saying that "One falsehood leads easily to another".
Advice is judged by results, not by intentions
While there's life, there's hope
Henri Frédéric Amiel 1821 – 1881 AD wrote:
Truth is not only violated by falsehood; it may be outraged by silence
Lisa Alther: 1944 – ? AD wrote: To see what is right, and not to do it, is want of courage or of principle. |
O, what a tangled web we weave,
When first we practise to deceive!
But when we've practised quite a while
How vastly we improve our style.
—J.R. Pope, A Word of Encouragement (updating Sir Walter Scott's Marmion) |
November 2007
At the South East Sector HIV Board meeting a presentation was made by the new Service Coordinator for SLHP services.
Key points are that the service is not yet up and running although it is advertised and only now is attention being paid to security issues around a proposed INTERNET accessible database system on which their function depends. This is not expected to deliver any kind of result before next year.
Feedback South London will continue to recommend that people refuse to have their personal information recorded onto this system. They are entitled to be registered anonymously and they should insist on this right.
Most alarming is the admission that clinics have not yet been approached to arrange access for clients. This seems surprising since it raises questions on how this significant component was costed when the tender was submitted.
Mention was made of the need to buy in additional services from NON partnership organisations.
Feedback South London suggested the target of recording 100% of PWHA in South London onto their database (within 3 years) is unrealistic and that the coordinator was making a rod for its own back by making such unrealistic projections. FSL suggested 5% was more realistic.
FSL then went on to ask how the target would be achieved. The Service Coordinator was unable to say and concentrated instead on the preliminary approaches that would be made to newly diagnosed people. However it became very clear in other discussions during the same meeting that identifying many eligible people is impossible due to restrictions on the way detail is recorded.
FSL also raised the question of the stigma associated with the unit contracted to provide the coordination facility. The coordinator stated that "when" they are up and running the service will be parcelled as a separate service and this should remove the stigma. It seems to us, though, that since the service has already been widely advertised as being run by the Maudsley the stimga will stick.
FSL raised issues concerning Lighthouse Kings. It has been reported to us that this installation, a key plank in the presentation of the successful tenderer, is to close at the end of this month. The service coordinator was unaware of this although this point has been raised with the commissioners who have failed to respond.
More: ...... 
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HIV Reservoir Decays Faster in Patients Treated During Primary Infection
By Scott Baltic
NEW YORK (Reuters Health) Jun 25 - The HIV reservoir in latently infected resting CD4+ T cells decays more quickly than previously thought in patients whose antiretroviral treatment (ART) was begun early in the infection, according to a new study.
This raises the possibility that if new classes of antiviral drugs can completely halt viral replication, persistent HIV infection could be eliminated in such patients.
The work, by Dr. Tae-Wook Chun at the National Institute of Allergy and Infectious Diseases (NIAID) in Bethesda, Maryland, and colleagues, is reported in the June 15 issue of the Journal of Infectious Diseases...........................
Reuters Health Information 2007. © 2007 Reuters Ltd.
Republication or redistribution of Reuters content, including by framing or similar means, is expressly prohibited without the prior written consent of Reuters. Reuters shall not be liable for any errors or delays in the content, or for any actions taken in reliance thereon. Reuters and the Reuters sphere logo are registered trademarks and trademarks of the Reuters group of companies around the world
We are grateful to Reuter's for their permission to reproduce extracts from news items. The above was published by Medscape (see our links page):
Is this better news than we have been receiving hitherto? |
| Keep an eye on this page for up to date news on HIV related issues in South London. |
A recent complaint highlighted the fact that this THT installation refuses to see service users if they are not patients at Caldecott Clinic. The commissioners have confirmed they are contracted to see any person with HIV living, working or using HIV services in the whole of South London (except Bromley). This complaint was referred to during this same meeting and was reported as having been resolved. However we still have heard no response from the unit on this critical issue.... so it is not resolved.
On 4th December there is a meeting between representative of the voluntary sector, service user reps (ourselves) and Croydon PCT. The purpose of the meeting is to improve cooperation. |
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