HTB

Volume 9 Number 5/6 May/June 2008

i-Base funding update

First of all, thank you to everyone who wrote to the commissioners expressing your concern about our withdrawn TIPI funding.

We are concerned that the standard reply that many of you received from Hong Tan is pretty misleading.

Firstly, it implies that the total funding has been increased. This is not true. The budget for services to HIV-positive people has actually been cut from around £600,000 per year to £400,000 per year. We do not think most HIV-positive people or service providers are aware of this.

Secondly, it talks about the openess of the tender process. Ths was not our experience. The public consultation meetings, for example, were arranged at short notice and with no emphasis on the services for HIV-positive people. They focused almost exclusively on prevention programmes. We can see no transparency between our community responses and the final tender decisions.

Thirdly, the Commissioners are defending the fairness of their process, rather than look at the problems behind the original commisioning intentions. We are interested in how our readers feel about the proposal to spend half the, now reduced, budget (£200,000) on a new healthcare trainer programme that duplicates services already being provided by NHS clinics?

The remaining £200,000 was awarded to one provider to meet all the information needs of every London patient. Are readers happy with this lack of choice? Do we really need 15 treatment booklets and for one provider to be to only source of information?

Unfortunately, the tender process has:

  • Reduced patient choice (an important NHS principle);
  • Ignored expert opinion (which is why you are all writing letters);
  • Produced a service without an evidence base – in terms of how patients use healthcare information;
  • Generated a bad outcome.

We would like to continue the pressure to change this outcome.

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

Finally, Hong Tan has kindly advised us to seek national funding (as if we hadn’t thought of that). So for potential funders, the following information details the scope and cost effectness of the projects that we are now looking to fund.

None of the following modestly budgeted projects interest the Commissioners. They are confident that they are not needed or will be covered in the new tenders.

1. A short summary of information for someone to gain the maximum benefit from their treatment and their clinicians.

The i-Base Introduction to Combination Therapy is updated annualy, is widely used and includes information for pateints to record their results. It costs less than £1 per copy and £4,500 for London patients.

2. Similar costs are involved for other guides, with different unit costs relating to demand for resources (based on historical demand) and print costs relating to the size of the publication. They cost £1.20 – £2.00 depending on format and print run – for Changing Treatment, Side Effects, Pregnancy and HCV coinfection guides. Total for 4: £15,000

3. Ten basic free-standing fact sheets to cover the most important concerns, translated into appropriate languages and in web accessible PDF format (as well as printed); Total: £2,500

Translations (estimate £600 per language for set of 10 leaflets).

4. A paper and electronic newsletters or bulletins to analyse and digest scientific and medical developments in the standard of care; £5,000 for 5% expert patient readership from London of HIV Treatment Bulletin (HTB).

5. Proposed workshops to develop an African Advocates network training with partner organisations. £6,000.

ii) Community treatment workshops to work with existing support organisations, especially African organisations where the social aspect of these networks is essential, but also never address by the TIPI tender; Total project cost: £7,500

Ten meetings a year @ £750 per meeting for 40 attendees (average 30-50). £650 per meeting will meet direct costs for travel and refreshments. i-Base speaker cost £100 per workshop. Unit cost per person per workshop – £18.75

6. A website with comprehensive learning resources, directories and archives;

The i-Base website costs £24,000 to maintain and develop annually. This includes all i-Base publications, translations of different resources into 20 languages, interactive learning resources and an interactive Q&A section.

7. Support towards the i-Base treatment phoneline and information request services – approximately £30,000.

New guide to avoiding and managing side effects

Sorry to burden you but we have included one of our new unnecessary booklets with this issue of HTB.

As with all publications, the updated i-Base Guide to Avoiding and Managing Side Effects is available free, including in bulk, to individuals and clinics.

Please order directly online.

Despite the current funding issues, we will continue to provide all services and publications free.

Donations are of course welcome, but at least you will know that your taxes didn’t pay for them.

Links to other websites are current at date of posting but not maintained.