13 January 2022
2022 is upon us, and I wanted to take the opportunity to reflect on Heart Valve Voice’s achievements in 2021 and look forward to 2022. 2022 presents valve disease patients and the nation with a complex challenge, but we at Heart Valve Voice have put together an ambitious strategy to ensure we continue to support patients and improve the detection and diagnosis of the condition.
05 August 2021
Since the inception of Heart Valve Voice, it has always been our intention to be a charity that promotes awareness of the condition, give a voice to those who have experienced it and improve the structures that determine the quality of care that patients in the UK receive. We have worked with policymakers throughout the past six years. Still, forming an All-Party Parliamentary Group for Heart Valve Disease was a watershed moment for heart valve disease patients in the UK. The report they have now published is a platform for policy change.
04 August 2021
Earlier this year, a group of heart valve disease patients were asked by the All-Party Parliamentary Group for Heart Valve Disease to share their experiences of valve disease treatment with the group. During the evidence session, the patients were asked about detection and diagnosis of the condition, as well as access to treatment and the information they were provided with. Angie Martin was invited to share her experince, after being diagnosed with heart valve disease as a child and treated during the Covid outbreak
24 June 2021
I decided to contact my MP after seeing Heart Valve Voice's #JustTreatUs campaign and thought it important to share my story and the stories of other valve disease patients. So that evening, I reached out to my local MP, Tim Loughton. I was really surprised to receive a reply in just a few hours, as I’m very aware of how busy MPs are. I was thrilled that he got back to me and wanted to help support the #JustTreatUs campaign.
03 June 2021
The first week of June is Volunteers' Week across the country, an annual celebration of the contribution millions of people make across the UK through volunteering. The past 18 months have placed an extraordinary strain on the sector, but I have been overwhelmed to see how the country has come together to support charities that have struggled financially while the demand for their services has increased significantly.
20 May 2021
The journey of our submission to NICE for the draft guidelines started in 2016 in the Churchill Rooms in Westminster. We were there to launch our Heart Healthy Future report. The then National Clinical Director for Heart Disease, Professor Huon Gray, attended the event. We had been lobbying for increased awareness of heart valve disease. That day, Professor Gray told me that he had instructed NICE to look at the guidelines for heart valve disease. For a charity that was only a couple of years old, it was an extraordinary moment and let off the starting pistol that led to the work we have done over the past four months.
13 May 2021
As part of Mental Health Awareness Week 2021, we invited Mindfulness teacher, Katie Sheen to write about her experiences of good mental health when undergoing treatment, and she how teaches Mindfulness now to support people going through challenging treatments.
12 May 2021
To celebrate International Nurses Day 2021, we asked Structural Heart Specialist Nurse at James Cook Hospital, Gemma McCalmont, to write a blog about why she decided to become a nurse, how she became a specialist TAVI nurse, and what advice she would give to anyone thinking of becoming a nurse.
11 March 2021
Last week I read with intrigue the Heart editorial about Professional Societies' role in developing guidelines and the importance of NICE being an independent, evidence-based organisation providing recommendations.