I thank the convener and the committee for hearing our petition today and our request for the implementation of a national service delivery model of care for patients who self-present to self-test or self-manage their warfarin levels when it is deemed safe and effective to do so by a healthcare provider. That model should include a safe, uninterrupted, co-ordinated infrastructure for patients in paediatric care who self-test their warfarin levels when they make the transition to adult services.
I am an adult congenital heart patient and, like many of our diverse, inspiring and growing paediatric and adult population, I am on warfarin to thin my blood. I am a wife and mother, and I am employed. I lead a healthy lifestyle after the implantation of two metal heart valves, an aortic root enlargement and a pacemaker.
My biggest fear is having a stroke. After my first open-heart surgery, I was carried by my husband to attend my anticoagulation service. My family were advised that the service did not provide home visits. I requested to work with my local care providers to self-test and, if it was safe and effective to do so, self-manage my anticoagulation levels. My request was refused. The explanation was not person centred, with no one actively listening to my request. It was at the directive of Greater Glasgow and Clyde NHS Board, and the reason given was that I do not work away from home.
A few weeks later, I was also refused an urgent appointment at my anticoagulation clinic, which an out-of-hours general practitioner asked me to obtain after he prescribed me a course of antibiotics that would increase my anticoagulation levels in a way that, if not checked, could prove fatal. With our nursing staff and local clinic reduced, I found myself placed in a catch-22 situation. Had I not been fully informed and thus able to challenge the decision, the outcome could have been devastating. My concern is for those patients who would not have questioned that decision.
I went on to meet a haematologist at Gartnavel hospital, who agreed that my time in therapeutic range would improve with self-testing. I would be patient number 31 in the programme. I agreed to speak to my GP to provide my test strips on prescription. That was well supported and I was provided with my machine by our charity, as such machines are not freely available. The next day, I received a call from Gartnavel anticoagulation nurses to advise that the funding for self-testing training had been stopped.
I continued to challenge that position and wrote many letters to the then Minister for Public Health, Michael Matheson, who advised me that the decision was for individual health boards. Later, in a parliamentary motion, Mr Matheson commented that warfarin patients in Scotland were much older than the United Kingdom average of 65 years. However, I believe that the decision should not be dictated by someone’s age but should be person centred.
Finally, I met the clinical manager of anticoagulation services, who provided me with a truly person-centred approach and support, as did the nurses at my local anticoagulation clinic. Last year, I met the chief executive of Greater Glasgow and Clyde NHS Board. That was well received and led to a nurses day, at which I was supported by John Fegan, the chairman of the Scottish Association for Children with Heart Disorders, and another adult congenital heart patient, who gave an inspiring insight into her long-term condition and her quest to self-test.
Standard operating procedures were drawn up for young adults who move from the Royal hospital for sick children to adult services, whose parents and carers are taught to self-test when they are prescribed warfarin in paediatrics. I am pleased to say that that standard procedure is now being used, although it is still in its early stages. It will ensure an uninterrupted care pathway for Greater Glasgow and Clyde NHS Board patients—not only those in our congenital heart community but other young adults with other long-term conditions who also require warfarin. If that is achievable for Greater Glasgow and Clyde patients, it should be easily available and accessible across Scotland.
In September 2014, I began self-testing. My time in therapeutic range has improved and I am able to take control and gain an acceptance of my long-term condition. Self-testing proved invaluable recently when I was in hospital. As a result of multiple open-heart surgeries in a short period of time, access to my veins is now very difficult. I was able to test my own levels safely and effectively.
There are approximately 80,000 warfarin patients in Scotland in 14 regional health boards. The purpose of the petition is to request a national service delivery model of care for all warfarin patients who self-present to self-test or self-manage their warfarin levels, when it is deemed safe and effective for them to do so. We want them to be given a person-centred care approach that is in line with the local delivery plan that is set out in the Scottish Government’s 2020 vision for the NHS, which is
“that by 2020 everyone is able to live longer healthier lives at home, or in a homely setting and, that we will have a healthcare system where we have integrated health and social care”
and
“a focus on prevention, anticipation and supported self-management”.
To achieve that, we require a whole-system approach and a culture change whereby patients can work in partnership with their healthcare providers and access information, communication, education and support. It must be an active and on-going partnership. The NHS will undoubtedly see positive benefits from that, as patients’ outcomes improve and patients, parents and carers become more informed, empowered and educated about their condition or that of their child.
I refer the committee to the Scottish intercollegiate guidelines network guideline 129 and the evidence from the National Institute for Health and Care Excellence, Healthcare Improvement Scotland and the Royal College of Physicians of Edinburgh, which all support self-testing and self-management.
11:30
Patients wish to embrace the key objective in “Gaun Yersel!”, the Scottish Government’s self-management strategy, which is written by patients with long-term conditions for patients with long-term conditions. The strategy was endorsed by Nicola Sturgeon, who is now our First Minister but who was then the Cabinet Secretary for Health and Wellbeing. It says that we should learn from people’s own experience of living with a long-term condition and that we should work in partnership with the individual and provide access to timely and appropriate information and support to enable them to make well-informed decisions about their lives. It concludes that
“life is for living, and for living well, not for enduring.”
The Scottish Government writes fantastic protocol to encourage and support self-management yet, for warfarin patients, the delivery at ground level is difficult, with patients and healthcare providers facing many challenges and barriers. No one should have to fight for care, particularly at a time of ill health or uncertainty.
I wish to thank my co-petitioner, Ian Reid, and John Fegan, the chairman of the Scottish Association for Children with Heart Disorders, for supporting me today. I also thank the patient who gave an inspiring insight into her quest to self-test at a Greater Glasgow and Clyde NHS Board nurses day, and patients who have written to their health boards and who wish to be provided with the patient-centred care approach but have been refused or challenged. Finally, I thank the committee and those who have endorsed and supported our petition.