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.
In January 18, ACUK in partnership with The All – Party Parliamentary Thrombosis Group (APPTG) organised a roundtable meeting held in Manchester to discuss the merits of an integrated approach to venous thromboembolism (VTE) prevention and management. The meeting was chaired by APPTG Vice- Chair and MP for Denton and Reddish, Andrew Gwynne. Invitees included key decision makers across Health and Social Care, Hospital Trusts and Health Innovation Manchester. Several recommendations were forthcoming including a VTE Audit to be undertaken to inform change, establishing a VTE working group and incorporating best practice in VTE prevention and management into provider contracts.
In February, ACUK hosted an Expert Working Group meeting in London entitled Secondary prevention in VTE: Developing optimal standards of care for the prevention of recurrent VTE. Attendees included Haematologists, Vascular Physicians, Pharmacists, specialist anticoagulation nurses and patient representatives. Outcomes from the meeting are presented in a Consensus document that sets out nine specific recommendations for improvements for the care of patients at risk or recurrent VTE. Next steps include engagement with key NHS decision makers to share recommendations and influence adoption in national guidelines. The document can be accessed on the ACUK website at www.anticoagulationuk.org
May saw the launch of our Out of Range Report: an audit of anticoagulation management in secondary care in England. Anticoagulation therapy is indicated for a wide range of conditions with Atrial Fibrillation accounting for the largest and increasing cohorts of patients across most anticoagulation services. The report gathered information from Freedom of Information Requests submitted in 2017 to 149 secondary care NHS Trusts in England. The purpose of the report was to increase understanding of the policies and processes used by providers of anticoagulation services in secondary care and, to identify any gaps to ensure AF patients receive safe and effective treatment with support after diagnosis addressing suboptimal anticoagulation management to reduce stroke risk in AF patients. To read the full report – www.anticoagulationuk.org
Patient Involvement and engagement
We are pleased to report that our ambassadors and contacts have undertaken some excellent work providing their patient expertise across a range of activities such as:
- Continuing the role as a lay member of the NICE VTE Guidelines committee
- Presenting the patient perspective around the impact of VTE and self-testing to healthcare professionals attending courses at Warwick Medical School
- Production of a patient video for training purposes
- Judging panel member for two industry led grants processes around ‘Improving Patient Care in Anticoagulation’ and ‘Improving Care of Patients with Atrial Fibrillation in Order to Reduce Stroke Risk’. Applications came from UK wide surgeries, hospitals and healthcare organisations and each was asked to provide a project plan, an estimated evaluation of patient impact and an explanation of the project sustainability and scalability.
- Attending the All Party Parliamentary Conference to gain insight into 2019 VTE objectives at national levels
In the summer, we started work on our project to understand the impact on patients affected by blood clots straddling a range of conditions such as atrial fibrillation, inherited clotting disorders, antiphospholipid syndrome, hospital acquired clots, pregnancy, heart valve replacement and more. We reached out to individuals who participated in a telephone interview process and we are aiming to produce a report summarising our findings on the impact of blood clots (VTE) post diagnosis and treatment in Spring 2019.
Collaboration work within the NHS and healthcare providers
Anticoagulation patients will be familiar with the Yellow Book and information pack provided when starting anticoagulation treatment. This year, as a member of the working group comprising of representatives of the British Society of Haematology, leading pharmacists and consultant anticoagulation nurses, ACUK have made contributions to the revision of the yellow book and introduction of a new booklet for the newer anticoagulants namely DOACS. The new Yellow books will be produced by NHS Improvement along with an updated alert card and should be rolled out in 2019.
We were delighted to receive an approach from Spire Healthcare to help review their Cancer Associated Thrombosis leaflet. The leaflet is now complete and being circulated within the Spire Healthcare group across the UK with ACUK being acknowledged as a major contributor.
ACUK was consulted on the publication ‘Exploring patient and public involvement in a digital age. The role and potential of patient and public involvement in a digital age’. Written by Hildegard Dumper, PPI Manager for the West of England AHSN, the guide explores the different ways Academic Health Science Networks around the country are involving members of the public in healthcare innovation and the development of new technologies.
In the autumn, we were invited to attend an educational meeting around Optimising Anticoagulation Care that afforded us the opportunity to network with healthcare professionals and hear about the latest developments in anticoagulation management. These events help ACUK representatives access information around current trends and practices which we can disseminate via our website and magazine.
October saw the second highly successful Anticoagulation Achievement Awards ceremony held at the House of Commons to coincide with World Thrombosis Day. Hosted by Lyn Brown MP, Chair of the All Party Parliamentary Thrombosis Group, a total of fourteen awards were presented. For more information about the winners and information about the 2019 Awards process go to www.anticoagulationawards.org.
In November, we participated in a London Academic Scientific Healthcare event with over 100 healthcare professionals in attendance. ACUK facilitated sessions that focussed on AF, understanding the patient perspective and how best to support. We received excellent feedback and have been invited to further ASHN events in Worcester and Cambridge next year.
Our AF 180 public survey concluded this month and the results will be published next year. Our website and social media platforms help us to solicit patient input and participation to the surveys in a way by which we can inform on the perspective of patients who are managing their conditions in real world settings.
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 observes trends in questions which may lead to further research as in the case of some interest around invasive beauty aesthetics such as brow microblading and tattooing and the lack/ conflicting guidance for people on anticoagulants. The article should be completed and available in February.
You can visit ACUK HealthUnlocked at https://healthunlocked.com/acuk
Throughout the year we have continued working on our Blood Clots Cancer and You campaign to highlight the risk of blood clots and the importance of treatment in people diagnosed with cancer. We have developed a toolkit for nurses to help them have the all important conversations about cancer and blood clots. It also contains information for patients. The Toolkit will be ready in January 2019. If you are a nurse treating patients with cancer and would like to see the toolkit then please email your details to firstname.lastname@example.org
National Guidelines updates
- Scottish Medicines Consortium and National Institute for Health and Care Excellence (NICE) are considering Rivaroxaban for preventing atherothrombotic events in people with coronary or peripheral artery disease.
- NICE Guidance on Venous thromboembolic diseases: diagnosis, management and thrombophilia testing is currently in development with expected date in November 2019
If you are interested in the work of NICE and how the guidelines are created and updated, please visit www.nice.org.uk
HOT NEWS For 2019
In January our copy of the latest magazine was published.
This is going to be the last hard copy magazine as having considered more effective ways of reaching out to the masses in the anticoagulation world, we will be creating a newsletter which will be emailed to all our subscribers. We do have some members who are not internet users and we will make arrangements for them to receive regular copies of the newsletter when published.
We have been looking at styles of newsletters and hope that you will enjoy reading the news and articles at your leisure and convenience. We can assure you that we will aim for the best quality and make the newsletter as visually attractive as the magazine and will seek feedback when we go live.
We have details of most of our subscribers but if you wish to update or add your email details, get in touch with us at email@example.com and we will update our records.
At ACUK we strive to do our best in providing advice, support, information and updates on all aspects of anticoagulation management and service provision across the UK. We work smartly and keep our overheads and costs to the minimum in order to ensure we can continue to meet our objectives of supporting our anticoagulation related community of patients, families and healthcare professionals. Reflecting on the projects we have covered in 2018, we are proud of what we are able to achieve as a small independent charity from our engagement at national level through to providing advice and advocacy to individual patients.
We thank you, our ambassadors, contacts, sponsors, supporters and friends of ACUK for your continued help in helping us stay committed to our focus and we undertake to make 2019 another good year in ensuring we continue to make anticoagulation services a priority within the NHS, and to conintue supporting people taking anticoagulants and their health care professionals.
Please stay in touch and if you would like to talk to us about fundraising or donating for 2019, please contact Diane by email at firstname.lastname@example.org or call on 07958 427701