There is a high risk that the service NAM has offered your clinics – providing information resources free of charge for well over a decade – will have to be withdrawn at the end of June.
Pledge your support
NAM lost its NHS funding to provide free information resources at the end of March. Currently, none of the commissioning structures within the new NHS has a remit to commission patient information. Being a relatively small charity, we are not in a financial position to continue supplying these resources unfunded, indefinitely. We are left with no alternative but to wind down our resource distribution service unless new funding is forthcoming.
We feel strongly that high-quality information is a critical component of the HIV treatment and care pathway.
- So does BHIVA (ref. BHIVA’s adult treatment guidelines and the BHIVA Standards of care for people living with HIV).
- So does NHS England’s HIV Clinical Reference Group (CRG). Indeed two of the key performance indicators it is proposed that your HIV service will be measured by (according to the CRG’s draft ‘Quality Dashboard’) are  the ‘proportion of patients confirming that they have been given access to information on their condition’ and  the ‘proportion of patients confirming that they have been supported to self manage’ (and there is a clear link between information and someone’s ability to self manage).
- So does the Government. The NHS White Paper cites evidence showing that patients who are involved in their care and treatment will increase their adherence, improve their health outcomes, enhance their satisfaction with services and cost the NHS less. Our view is that patients cannot be meaningfully involved without good-quality information.
- As a clinic that uses our resources I am writing to ask you to support our Campaign to keep HIV treatment information in our clinics. We are urging the new NHS structures to take responsibility and commission treatment information for people with HIV. People with HIV need good-quality information to make the most of their treatment, adhere to their regimen and maintain good health. This campaign aims to ensure this information support is accessible to all HIV patients across the country.
You can pledge your support at www.aidsmap.com/support-nam (it takes less than a minute). At this stage all you need do is sign up and, if you are able, give us a brief comment about why HIV information resources are valuable to your clinic.
We will keep pressing the new NHS structures to commission patient information and being able to show support from you and your clinic will be hugely helpful. I wish I could ask you to do more, for example write to someone on our behalf, but it’s not even clear at this stage who you should write to. We understand that, presently, no one has responsibility for patient information!
If you could forward this email to your colleagues and networks, that would be wonderful.
Thank you. Your help is enormously appreciated.
Caspar Thomson, Executive Director, NAM