Keep HIV treatment information in our clinics

Dear Colleague,

I am writing to update you about our campaign to Keep HIV treatment information in our clinics. I am also writing to seek your help to ensure people living with HIV attending your services can continue have access to high quality information about their treatment and care.

Update

At the end of March this year, amidst the overhaul of commissioning arrangements and, specifically, the separation of HIV prevention from clinical services, the NHS in London ceased to fund the provision of HIV treatment information and education materials.

As a result, NAM lost approximately £200,000 of income: our main source of funding. The loss of such a significant amount of income threatened to destabilise the charity.

The Department of Health provided some interim transition funding that has enabled us to continue to provide free resources to clinics across the capital. This funding comes to an end, however, in March 2014 (i.e. in just three months’ time).

We have made approaches to the commissioning bodies within the new NHS to seek replacement funding but, despite our campaign, it remains the case that none presently has a remit to commission HIV patient information. Phrases we hear regularly are ‘it’s not within the scope of our responsibilities’ or ‘our hands are tied’. Unfortunately we have exhausted all the avenues available to us.

In the meantime, we have slimmed back production costs to a minimum, cutting costs wherever possible and streamlining all our systems. Sadly, this has included making a number of redundancies. Next year, we intend to relocate to smaller premises, with the majority of our small team working remotely.

The importance of this service

We know, from all the wonderful support you and your colleagues have provided, that you value the booklets and leaflets NAM provides.

We also know that patient information is a vital component in the treatment and care of people with HIV. It enables people to understand their condition and treatment; it supports the doctor-patient dialogue; it empowers patients to participate in their treatment and care; it helps people adhere to their ARVs; and it enables people to self-manage.

And it is not just us who think this… NHS England’s HIV Clinical Reference Group (CRG) describes treatment support as one of the ‘service elements’ within its service specification, stating it should include patient education, delivered in partnership with community or voluntary providers. BHIVA’s guidelines and standards recommend the provision of treatment support materials. Finally, two of the key performance indicators listed within the CRG’s Quality dashboard are [1] the ‘proportion of patients confirming that they have been given access to information on their condition’ and [2] the ‘proportion of patients confirming that they have been supported to self manage’.

Next steps

From 1 April 2014 (the start of the 2014/2015 financial year), we are proposing to introduce a charging structure for our treatment information and patient education materials. We have developed a pricing model based on the size of the patient cohort within each NHS trust.

We appreciate that budget and procurement processes vary from one trust to another and that implementing a charging system will have its complications. We are currently in the process of gathering information about how best to do this and exploring all the possible options.

We also realise that if we are asking your trust to pay for patient information, we need to provide you with a breakdown and further details of exactly what your clinic would receive in a subscription.

My colleague, Zoë Smith, will be in touch with you in the New Year with further information about the pricing model, as well as with details about the subscription-only membership package for your clinic.

Please help

In the meantime, we would really appreciate your help:

• Please let me know who, at your clinic or trust, we should be talking to about the introduction of charges for patient information materials. Who, for example, is your lead clinician, your head of finance and your service manager (if it’s not you!)?
• Please indicate, in principle, if the introduction of a paid-for subscription to NAM’s patient information materials is something a) your clinic could support or if b) your trust could support
• Please let me have any other comments and ideas that you might have about this initiative or ideas about how your clinic could buy this service.
• Please circulate this information to members of your team.
• Unfortunately, the harsh reality is that if we are unable to secure enough support for this subscription-only initiative NAM will have to stop providing patient information materials (both printed and online) from the end of March 2014. We therefore very much hope you will be able to assist and support us.

Thank you

This comes with best wishes,

Caspar Thomson
Executive Director
NAM