November 2014 – Participation in Medical Technology Week
In November 2014, ACSMA exhibited at the Medical Technology Group’s Parliamentary reception, which highlighted issues surrounding medical technologies and how to overcome the current barriers to uptake. The reception brought together a large number of Parliamentarians, patient users, patient groups, industry members, healthcare professionals, commissioners and representatives from the NHS and other Government departments. The Parliamentary reception was the focal point of Medical Technology Week (3rd – 7th November). The aim of the week was to get people talking about medical technology’s great potential to improve patient outcomes and generate efficiency savings in the NHS as well as the societal benefits of getting people back to work earlier or caring for their loved ones. ACSMA is keen to support and be involved in other events like this that can raise the profile and importance of self-monitoring technology.
July 2014 – Freedom of Information Act survey of all Clinical Commissioning Groups in England
In the new NHS, Clinical Commissioning Groups (CCGs) are the key decision-makers when it comes to issues like patient choice, access to self-monitoring and anticoagulation service redesign. The feedback we’ve had from NHS England and responses to our questions in Parliament has confirmed this. We know, however, that there is a lot of variation in practices across the country: some CCGs support self-monitoring, but many do not, and there is a real need to understand local CCG policies and practices better. In February this year, we sent a Freedom of Information Act request to each of the 211 CCGs in England to find out more. We received a fantastic 178 responses and this has given us the data we are currently missing about local policies and implementation. The main findings are:
- One-third of CCGs (34%) allow people to test their own internationalised normal ratio (INR), or how long the blood takes to clot, using a fingerprick device.
- A smaller proportion, less than 30%, of CCGs allow the patient to adjust the warfarin dose themselves.
- Only 7% of CCGs publish guidance or guidelines on INR self-monitoring for patients
- One-third of CCGs provide INR test strips on prescription
We are not particularly surprised by these findings, based upon anecdotal evidence of the experiences of people on long-term warfarin. However, the CCGs’ responses were still disappointing as there is a lot of goodwill and support for self-monitoring at a national level. Our campaign has received support from Senior Government Ministers, including Jeremy Hunt, Secretary of State for Health, and senior representatives at NHS England.
June 2014 – Patient Choice Awards and Parliamentary Event
On Wednesday 25th June 2014, we held our first Patient Choice Awards in the Westminster Parliament. The awards celebrated the work of dedicated health professionals in the NHS and campaigners who have helped people on long-term warfarin treatment to monitor their own blood clotting levels. Approximately 60 people attended the parliamentary reception, including MPs, health professionals, patients and carers. The guests heard from two excellent speakers, Andrew Gwynne MP, and Glyn Davies MP, who spoke about their experiences and views about self-monitoring. More than 25 nominations were received from patients and carers across the UK. After much deliberation, our selection committee decided upon a short-list, with the following winners announced on the night:
- Individual Health Professional of the year award – Dr Rhona Maclean, consultant haematologist at the Royal Hallamshire Hospital in Sheffield.
- Health professional team of the year award – The cardiac nurse practitioner team from Great Ormond Street Hospital, London.
- The winners of an outstanding achievement award were Peter Birtles, campaigner for people on long-term warfarin, and Eve Knight, founder and Chief Executive of AntiCoagulation Europe.
Virendra Sharma, Labour MP for Ealing Southall, who hosted the event, said: “I am delighted to have hosted the Patient Choice Awards for all the hard work people have done for patients to promote and support self-monitoring. Self- monitoring devices are a win-win situation; a win for the NHS as it will help them to reduce potentially life threatening numbers of stroke and save money, and a win for the patient as it increases their independence and encourages empowerment to control their long-term health condition.”
March 2014 – Regional meeting in Manchester
We hosted our first regional meeting in Manchester on 24th March 2014 to explore how anticoagulation services can be developed as a model for self-care: improving health outcomes, saving the NHS money, and enhancing patient choice and experience. . The meeting provided a forum for those with an interest in anticoagulation service provision and practice in Greater Manchester, Lancashire and the northwest and included healthcare professionals working in the NHS and local government, patients and other decision-makers. Some 35 guests participated in the event. Dr Matt Fay, a GP at Westcliffe Medical Practice in Shipley who chaired the meeting, said: “The event was an excellent opportunity for patients, clinicians and carers to meet, discuss and share examples of best practice of self-monitoring across the north-west. Many interesting topics were discussed including patient choice, innovation, technology and person centred care. All of these align with the NHS’s agenda. However, people on long-term warfarin need to have greater access to self-monitoring technology on prescription in order to make self-monitoring more widely available.” Following the discussion, the attendees put forward a number of recommendations:
- That there be greater publicity around self-monitoring and the benefits, making better use of the substantial evidence base pointing to a better patient experience, prevention of cardiovascular events and improved health outcomes.
- The NHS should consider how it can collect and utilise primary care data, particularly on outcomes. This will show how good different localities are at providing opportunities for a patient to self-monitor and will help address the gap in service provision.
- Within local commissioning agreements and protocols, all providers and GP practices should allow long-term warfarin patients the opportunity to self-monitor.
- As healthcare in the UK is changing rapidly, clinicians need to work closely with patients so that they can make informed and joint decisions about a patient’s care.
- A standard, unified contract should be developed between GPs and patients. This will outline the individual responsibilities of each party regarding warfarin prescribing and self-monitoring, as well as clarify the governance arrangements.
June 2013 – Health Select Committee Inquiry into the Management of long-term conditions
In June 2013, the House of Commons Health Select Committee undertook an inquiry into the management of long-term medical conditions. ACSMA submitted written evidence for the Committee’s consideration. The Health Select Committee decided to examine the way in which the NHS and social care system in England supports people with long-term conditions and we submitted a paper on needs of people on long-term anticoagulation treatment and the challenges they face. You can read our submission on our website http://www.acsma.org.uk/news/news-articles The first oral evidence session took place on the 18th June 2013, and focused on the desire for care to be moved into a more integrated and community based setting, which would in turn allow patients to be in control of their long- term conditions. It was made clear by the clinicians called as witnesses that primary care should be the default setting for long-term conditions and this in its self would advocate better services for patients. Witnesses to the Inquiry noted that some 60% of GPs do not support people to be independent decision-makers currently. This is an issue that ACSMA is currently extremely concerned about.
Parliamentary reception to be held Wednesday 6th February 2013
The next stage of our campaign involves a reception, which will be held in the Houses of Parliament on Wednesday 6th February 2013. The reception will be for approximately 100 people including politicians, healthcare professionals and people taking long term warfarin. At this reception we will demonstrate how self-monitoring can make a real positive difference to people’s lives and to their health.
Parliamentary drop in session 24th October 2012
On the 24th October 2012 ACSMA attended a parliamentary drop-in session and asked those attending to pledge their support for the ACSMA campaign. In total 15 parliamentarians pledged their support, including:
- Andrew Gwynne MP (Shadow Health Minister)
- Lord Hunt (Opposition Spokesperson for Health in the House of Lords)
- Virendra Sharma MP (member of the Health Select Committee)
- Anne Milton MP (former Minister for Public Health)
Three MPs including Mark Durkan MP (SDP,) Andrew Gwynne MP (Labour) Stephen Mosley MP (Conservative) pledged their support through articles and press releases after the event. Ian Liddell Grainger MP (Chair of the All Party Parliamentary Group on Improving Patient Access to Medical Technology) wrote a blog for the British Medical Journal about increasing patient access to self-monitoring devices. (link to this included in this paragraph)