Keep HIV treatment information in our clinics: March Update

Dear SSHA Members,

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

Unfortunately, due to a significant reduction in funding as a result of the overhaul to HIV commissioning arrangements, NAM is going to have to introduce charges for patient information materials from April 1 2014.  You may have already heard about these changes through your networks and contacts, but I am keen to ensure I communicate information about this to you in person.

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, making savings wherever possible and streamlining all our systems.  Sadly, this has included making a number of redundancies.  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 are in the process of contacting all HIV clinics across the UK to invite them to sign up for an annual subscription to NAM’s information materials. We appreciate that budget and procurement processes vary from one trust to another and that the decision to purchase materials might require input from a range of individuals in your clinic or trust.

The subscription

I have attached further information about the materials available as part of a subscription to NAM’s patient information resources.

Please help

We would really appreciate your help:

1. 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!)?
2. Please let me know how many patients your clinic or unit currently supports.
3. 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
4. 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.
5. Please circulate this information to members of your team.

Once we have received the above information, my colleague Zoe will get in touch with you with the specific cost of a subscription for your clinic.

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 very much hope you will be able to assist and support us.

Thank you

This comes with best wishes,

Caspar Thomson
Executive Director
NAM

NAM Subscription – Supporting Information