Lobbying and Campaigns
AF Association is a UK registered charity which focuses on raising awareness of Atrial Fibrillation (AF) by providing information and support materials for patients and medical professionals involved in detecting, diagnosing and managing Atrial Fibrillation.
AF Association campaigns to:
1) Provide support and information on Atrial Fibrillation to those affected by the condition.
2) To advance the education of the medical profession and the general public on the subject of Atrial Fibrillation.
3) To promote research into the management of Atrial Fibrillation.
To ensure that AF is at the heart of the healthcare debate, we run a series of high profile campaigns and events to better raise awareness of the importance of effective treatment and diagnosis of AF.
EU Summit on Chronic Diseases, Brussels – April 2014
Claire was diagnosed with AF after she was told she’d suffered a stroke. Recently she was invited by AF Association to speak on their behalf at the European Union Summit on Chronic Diseases in Brussels.
Baroness Gardner of Parkes helps to raise awareness of forthcoming NICE decision on anticoagulation self-monitoring
May 2014: Under its diagnostics assessment programme, the National Institute for Health and Care Excellence (NICE) is developing guidance on two diagnostic technologies for patients on anticoagulation treatments to self-monitor their coagulation status. We understand that NICE expects to issue guidance in July 2014. NHS England advises that it will then consider what action, if any, is required, taking this guidance into account.
Baroness Gardner of Parkes asked the Government whether they would ask the NHS to support patients under anti-coagulation treatment for atrial fibrillation who would prefer to carry out their own blood tests at home.[HL6771]
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe, Con) responded: "It is for individual Clinical Commissioning Groups (CCGs) to commission treatment and services for patients on anticoagulation treatment or other medications which require monitoring, as they are best placed to identify what is needed in their local areas."
Commissioning Board reviewing guidance on AF procedure
At the AF Association All Party Parliamentary Group for AF (APGAF) in December 2012, we discussed 'access to therapy for AF'. We were joined by patients, carers, professionals from across the healthcare community, commissioners, MPs and Lords.
It transpired that there was an inequality of access to NICE recommended therapies resulting in healthcare provision across England and Wales still falling into a 'postcode lottery'.
In May 2012, the Department of Health (DoH) said:
"No decision about me without me...means giving patients and service users the opportunity to share in decisions about their care all along the pathway".
However, in December of the same year, access to therapies for atrial fibrillation came under threat from commisioning restrictions.
The AF Association believes access to therapies for AF should be appropriate to the individual's health needs and equal across all health trusts.
We asked for your support to campaign against this in February 2013. Following the high number of responses from patients, carers and healthcare professionals to their MP's and service providers, we were reassured by the Specialised National Commissioning Board (SNBC) that all responses received were included in the review of this statement.
In April 2013, NHS England published a clinical policy statement on LAAO that states the procedure will not be routinely funded, but will be assessed further through a ‘commissioning through evaluation’ process.
This will ensure further evidence is accumulated while a limited number of procedures are carried out at dedicated centres.
The AF Association is involved in helping to design this process and we are pressing to ensure not only is there equity of access, but also timely referral for consideration of the procedure.
Currently plans are only in draft, and we are awaiting a review by NHS England to confirm whether the proposals are approved. It is hoped that from October 2013, NHS England will re-instate commissioning, however both the date and the detail has yet to be confirmed.
Pulse in Parliament
As part of its activities associated with the World Heart Rhythm, AFA hosted an MP photo opportunity in to raise awareness of AF amongst policymakers and promote opportunistic pulse checks as one of the most cost-effective ways of detecting AF.
During this event, over 30 parliamentarians had a photo taken with Trudie Lobban MBE, our chief executive, checking their pulse and were encouraged to issue local press releases to raise awareness of opportunistic pulse checks.
Pulse checks in the NHS: Ideas worth spending
This report was produced by the AF Association as a result of the Healthcare Pioneers publication. It was discussed at an All-Party Pariamentary Group (APGAF) meeting to highlight the importance of pulse screening to detect AF.
ACT on AF Friday
On Friday 28th October 2011, the AFA held an event which encouraged patients, clinicians and policy-makers to spread innovative practice across the NHS, as featured in the AFA’s newly published Healthcare Pioneers: Showcasing innovative practice booklet, details of which can be found here.
Act on AF Friday encouraged parliamentarians, patients and clinicians to write to the Department of Health to showcase examples of innovative care and to ask them to introduce a early quality standard. On ACT on AF Friday the AFA launched a campaign to:
ASK if your local commissioners have a strategy on AF
CASE studies – promote the AFA’s Healthcare Pioneers booklet which highlights innovative practice on AF across the NHS
TELL the Minister that AF must be prioritised and an early Quality Standard is urgently needed (in England)
Contact your MP
We encourage AFA supporters to contact their MP to highlight the importance of treating and diagnosing AF and should you wish to do so you can contact your members here.