As we start the new year we would like to take this opportunity to share a summary of some of the work that ACUK has been involved in over the last twelve months and share some of our projects planned for this year
During 2019, much work was undertaken to build on our project around secondary prevention in VTE, developing optimal standards of care for the prevention of recurrent VTE. Throughout the year, we created several resources including an information leaflet, pathway document and dynamic video for the purpose of sharing with a multi- disciplined group of clinical and medical professionals to gain their support behind the message. At a meeting held in October, we were delighted to extend out to Thrombosis UK, Royal Colleges of GPs and Nursing and a representative of the Ambulatory Emergency Care Network who joined the Expert Working Group and next steps will focus on getting the pathway aligned to national guidelines to reflect best practice for those at risk of recurrence.
ACUK were invited to present at the UK Stroke Forum held in Telford in December. The forum provides a programme that covers latest stroke research, education, service development and innovations for healthcare professionals specialising in this area. Diane Eaton presented on the topic ‘Optimum Anticoagulation to prevent strokes’ highlighting the outcomes from the Out of Range Report: an audit of anticoagulation management in secondary care in England. The session was well received and gave focus to the continuing challenges of ensuring people with Atrial Fibrillation are optimally treated with appropriate anticoagulation therapy to reduce their stroke risk.
In response to patient feedback and interest noted on our HealthUnlocked forum, ACUK produced an information leaflet entitled 'Aesthetic Treatment's collaborating with two pharmacists who have expertise in this field. http://anticoagulationuk.org/admin/resources/downloads/aesthetics-treatment-facts.pdf. It particularly addresses procedures such as micro blading, tattooing and injectables. This resource has been shared with key influencers in the beauty industry and was timely in coinciding with the launch of the Department of Health and Social Care ‘Clued UP’ campaign whereby people are being urged to get "clued up" about the risks of cosmetic procedures as part of a new government campaign to help people make safer, more informed choices.
Throughout 2020, our ambassadors and contacts were very busy providing their patient expertise across a range of activities such as:
- Providing lay member patient input for the review of the NICE VTE guidelines which are due to be published in March 2020. ACUK as a registered stakeholder is kept informed around the progress of the review and responds independently as part of the consultation process.
- Providing the patient perspective around the impact of VTE and benefits of self-testing to healthcare professionals attending courses at Warwick Medical School.
- For the second year, invited by the Oxford Academic Health Science Network to join the judging panel to consider grants from NHS service providers for an atrial fibrillation quality improvement programme being led by AHSN’s and industry.
- In May, exhibited at ‘Let’s Talk Clots’ All England National Thrombosis Conference in London and hosted by Thrombosis UK. With excellence attendance on the day, we were pleased with the amount of interest from HCP specialists around our interactive toolkit, Blood Clots, Cancer and You. Due to popularity of this resource, an updated toolkit is now in production.
- Invited by Dr Andy Hughes, Consultant Community Haematologist at Basildon and Thurrock Hospital to discuss ways in which the community based specialist haematology care/anticoagulation service provision could be expanded into the surrounding population to maximise patient access to a dedicated team of ac professionals. Roy Johnson, our ambassador in this region continues to liaise with the hospital, GPs and CCG to ensure that patients who self –monitor continue to be able to access support in this area.
- In 2019, due to ACUK resources, we had to push back on the production of our insight report into the patient experience around the personal impact of blood clots. The report is near to completion and we will share with our community when available. Eve and Diane would like to extend warm thanks to all those who contributed.
- In January 2019, ACUK participated in Medical Safety Programme Priority Setting Workshop initiated to focus on key areas to reduce severe and avoidable harm caused by medicines by 50%. Key areas identified covered anticoagulation management across care home settings. Outcomes from the meeting were incorporated in a proposal for the Medicines Safety Programme Board which is interested in initiating a small number of specific Quality Improvement projects to improve key aspects of medicines safety.
- Anticoagulation patients will be familiar with the Yellow Book and information pack provided when starting anticoagulation treatment. Last year, as a member of the working group comprising of representatives of the British Society of Haematology, leading pharmacists and consultant anticoagulation nurses, ACUK made contributions to the revision of the yellow book and introduction of a new booklet for the newer anticoagulants namely DOACS. To date, we are still awaiting an update from NHS Improvements as to when the new resources will be made available.
- October saw the third highly successful Anticoagulation Achievement Awards ceremony held at the House of Commons to coincide once again with World Thrombosis Day. Despite the suspension of Parliament, the Awards ceremony was able to go ahead with the notable absence of Lyn Brown MP, Chair of the All Party Parliamentary Thrombosis Group and other MPs. Whilst unfortunate, it was another wonderful celebration of examples of outstanding good practice across this specialist area and a total of 10 awards were presented. For more information about the event and winners, visit www.anticoagulationawards.org.
- The All Party Parliamentary Thrombosis Group Conference meeting due to be held at Westminster at the end of November was postponed due to the impending general election. We are finalising the conference date for this meeting due to take place in early March. Interested in attending, please contact Diane email@example.com.
- We continue to operate our HealthUnlocked patient platform, giving people a forum to ask questions, share experiences and interact with others who are on anticoagulation treatment. ACUK monitors the site and looks for trends in questions which can highlight a ‘gap’ in patient information and advice that we can then factor into our forthcoming work streams. Take a look at https://healthunlocked.com/acuk
- Scottish Medicines Consortium(SMC) and National Institute for Health and Care Excellence (NICE) issued guidance for Rivaroxaban for preventing atherothrombotic events in people with coronary or peripheral artery disease – for more information: https://www.scottishmedicines.org.uk/ and https://www.nice.org.uk/
- NICE Guidance on Venous thromboembolic diseases: diagnosis, management and thrombophilia testing is currently in development; expected date of publication March 2020
If you are interested in the work of NICE and how the guidelines are created and updated, please visit www.nice.org.uk
In January you will receive your copy of the latest E-newsletter. The new format has been well received and our database is expanding.
We have details of all our subscribers but if you wish to update or add your email details, get in touch with us at firstname.lastname@example.org and we will update our records. Do feel free to share your newsletter with friends and colleagues, or simply get them to get in touch with us and we can add them to our database.
Behind the scenes, our committed team are constantly looking at ways in which we can maximise our presence in influencing and keeping anticoagulation management a priority within the NHS and across secondary, primary and community settings. With the new oral suite of anticoagulants now becoming first line treatments for the treatment and prevention of VTE and Atrial Fibrillation, we are acutely aware that warfarin patient numbers are decreasing but these people still need a voice when it comes to options for self- monitoring.
It is our intention to continue to support individuals who are experiencing difficulties in initiating or maintaining self – monitoring providing advocacy when necessary.
The ACUK Board of Trustees have taken the decision to discontinue the subscription membership and will now ask visitors to the website, helpline and existing supporters to consider making a donation as a one off contribution or as a regular payment. We want to get our services out to everyone seeking information, education or support and we deem this to be the best way to engage with people whilst reducing the administrative burden of managing a membership renewal system.
As another year begins, we reflect on the successes of 2019 and our plans for 2020.
- This year will see the development of a series of themed interviews which will address some of the key topics around anticoagulation management. These topics will be educational and informative and available for healthcare professionals and the public on our website and as podcasts.
- We will review all our information resources and seek to update and create new items to meet identified needs.
- We intend to expand our patient engagement activities by exhibiting at clinical conferences and will proactively seek out opportunities to collaborate with the NHS, other charities, research institutes and tech development companies to maximise our involvement in this clinical area.
- Develop fundraising opportunities to help ACUK continue its objectives in supporting the anticoagulation affected community. Following on from an excellent fundraising event held by Faversham Golf Club, we are delighted to share that ACUK will be hosting a Charity Golf Day in October to mark World Thrombosis Day 2020. For more information on this event or if would like to get involved in fundraising for ACUK, please contact Diane by email at email@example.com or call on 07958 427701
Following the passing of Michael Knight, founder of ACE in September, we will strive to ensure that the ethos and values of the organisation remain rooted in all our ongoing activities which support our community.
On behalf of the ACUK team, may we wish you a healthy, happy and positive 2020