Date:19 February, 2013

Alpha-1 Alliance – campaign update

The Alpha-1 Alliance is campaigning for a highly specialised service within the NHS for patients with severe Alpha-1 antitrypsin deficiency.  We’re calling on the NHS to set up three or four specialist Alpha-1 centres in hospitals across England that would allow patients prompt access to specialist clinicians and treatment.  So far this year we’ve been focussed on raising awareness in Parliament about the campaign and the unmet medical need of Alpha-1 patients.  We also recently met with NHS officials to find out more about the process for securing a specialised service.

 Parliamentary support for the campaign

In January representatives from the Alliance met with four Members of Parliament (MPs) in Westminster from across the political spectrum.  This allowed us to help improve politicians’ understanding of the condition and what needs to be done to ensure patients have better access to treatment and specialist clinicians.  Mark Pawsey MP (the Conservative MP for Rugby) has a constituent with Alpha-1 and has been championing the campaign within Parliament.

Reform of the NHS

The NHS is currently undergoing a considerable amount of structural reform which has meant there has been significant uncertainty about the process that would need to be undertaken in order to set up a new specialised service for Alphas.  Previously a body called the Advisory Group of National Specialised Services (AGNSS) would have advised the Government about whether or not to nationally commission a new highly specialised service.  However, from 1st April this responsibility shifts to the new NHS Commissioning Board who will make all future decisions on specialised services.  Potential future access to augmentation therapy for Alphas will need to be looked at separately by a NICE assessment. 

 What can you do to support the campaign?

For the campaign to be successful it’s crucial that Alphas make their voices heard and let Government know why it’s so important that patients can access a specialised service within the NHS.  We’re currently undertaking a survey of the views and experiences of Alphas and their families which we’ll use to write a report that will be presented to MPs and Peers at an event in Parliament later this year.  Please share your views with us by completing the online survey.  https://www.surveymonkey.com/s/Alpha-1

 We’ve also set up a petition on the Government’s e-petitions website calling for the establishment of a specialised service for Alpha-1.  The petition now has over 1,000 signatures, and if we can reach 5,000 signatures it will be one of the top 10 petitions to the Department of Health.  We’re calling on all Alphas to sign the petition and circulate it to everyone they know to help us demonstrate the strength of feeling behind the campaign, and the need to provide specialised treatment for Alphas within the NHS.  http://epetitions.direct.gov.uk/petitions/39732

About the Alpha-1 Alliance

The Alpha-1 Alliance includes the Alpha-1 UK Support Group, Alpha-1 Awareness UK and Alpha-1 Advocacy and Action and is chaired by Dr Ravi Mahadeva, representing the clinical community.