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Wil's Blog

Wil's Blog

World Heart Month

Wednesday 19th February 2020

February is World Heart Month, an opportunity for various forms of heart disease to take centre stage and a time to bring attention to the importance of cardiovascular health.

For Heart Valve Voice, World Heart Month has been an opportunity to look inwards and strengthen ourselves as a patient focused charity on the cutting edge of cardiovascular care, as well as look outwards and continue our campaigns to improve detection, diagnosis and treatment of valve disease.

At the beginning of the month Heart Valve Voice hosted, and I chaired, a roundtable with Health Innovation Manchester, where we discussed innovations in the treatment of valve disease and patient pathways. Innovation will, of course, play a central role in improved detection, diagnosis and treatment of valve disease, and at the roundtable we discussed how app technology could be used to diversify points of detection and improve detection rates. I was particularly interested in our discussion on how app technology could be used to empower patients with clinical histories to ensure continuity of care - stay tuned to hear more about this one.

It is important to note, that a product of improved detection will be an increase in patients presenting in primary care, resulting in increased strain on the the health service. Here, rethinking patient pathways is vital, and innovation will play a central role in improved primary care networks and models of care, ensuring there is a structure in place that can take that increase in patients. Innovation is more than just devices, it’s about new ways of thinking and new structures of care.

You can read more about what we discussed here.

Earlier in the month I was thrilled with Elske's report on a Westminster Forum on the implementation of the NHS Long Term Plan, where assembly members, NHS bodies, patients, local government and industry came together to hear recommendations on delivery of the Long Term Plan.

The need to improve data sharing processes was central to discussions. Whether it is the integration of care between social and health care, sharing data between sectors, or effective data management, using data driven evidence to improve care and harness information will be a key component in delivering on the Long Term Plan.

For Heart Valve Voice it is absolutely essential that we capitalise on valve disease being included in the Long Term Plan. Forums like this, and the Health Innovation Roundtable, help us understand, and learn from, the strategic direction of the plans and allow us to align our strategy to push an agenda driven by patients and guided by our Gold Standard of Care.

These opportunities to develop our policy agenda are important, but they are given life by days like our Patient Engagement Day, where we can build from the ideas and support of our patient advocates and utilise that energy to drive a policy agenda.

Patient Engagement Day brought together committed members of our Patient Action Group to discuss our ever growing community of volunteers and how best we can utilise their skills to drive the conversation on valve disease. This Patient Advocate Group is something I am incredibly proud of. In five short years we’ve built a charity that listens to our patients and have developed a structure where we can get balanced, informed and insightful advice and guidance from those with lived experience.

We also had the opportunity to hear from Patient Advisor Consultant, Neil Betteridge. Neil commended us on the culture of patient involvement at Heart Valve Voice, and gave us a series of ways we can continue to improve that culture and strengthen a shared sense of what we’re here to do, and what is expected of us.

From our Patient Engagement Day we have put together a plan on how to continue to harness the power of our patient advocates and their experiences. We will help with skills and media training, as well as providing training through webinars, videos, leaflets and marketing materials. We will also ensure that we diversify recruitment of advocates, so that all parts of the patient pathway are represented in our Patient Advocate Group. Many of our patients are active and busy so events like webinars allow us to offer training, development and support remotely - allowing patients to continue to enjoy their lives post-treatment.

Our relationship with our patient advocates is central to our ability to affect change. Developing that relationship and ensuring that there is clear communication on all sides will strengthen outcomes and improve our power to raise awareness of valve disease.

Days like our Patient Engagement Day enable us to develop strategies for improving the inequalities in access to treatment and increase early intervention. By understanding the lived experience of our advocates we can identify exactly where these problems lie and what needs to be done. Our power to change policy and guidelines begins in the stories of our patients.