Advocacy in
heart failure

What is advocacy

Advocacy in heart failure seeks to ensure that people, particularly those who are most vulnerable, can:

  • Has their voice heard on issues that are important to them?
  • Defend their rights.
  • Have their views and wishes genuinely considered when decisions are about them.

Advocacy is a process of supporting and enabling people to:

  • Create and express their views and concerns.
  • Access information and services that are pertinent to them
  • Be a voice around their rights.
  • Explore choices and options

The Pumping Marvellous Foundation is an advocate for heart failure sufferers and their families. We provide heart failure advocacy support for heart failure patients and their families when they need it. We might help you access information you need or in a supportive role, talk through options with you and your family. You may want us to advocate for you where we speak for you in situations where you don’t feel able to speak for yourself.

Our advocates are our patient educators; they will spend time with you to understand your needs. Advocacy can be helpful if you find it challenging to make your views known.

Other forms of advocacy we get involved in include political, economic and institutional, and these are below.

Political advocacy is about influencing policy at the political level, e.g. raising the awareness or understanding of heart failure with politicians. Helping politicians understand the challenges that arise from living with heart failure, thus enabling them to represent or lobby for better health outcomes for people with the condition. A lot of political lobbying happens at Westminster in London.
Economic advocacy is about putting together discussion topics, fact and economic assumptions around the cost or impact of heart failure and the effect of not taking the optimal route. For example, if heart failure patients weren’t treated with a particular therapy, what would the economic impact be? Would it reduce the burden of cost to the NHS over and above an existing treatment? Another example would be examining the effectiveness of heart failure nurses in the community. Do they save money by ensuring patients have a better quality of life through more open access to their community team, therefore, reducing hospital admissions? A specialist subject and usually involves a health economist.
When we talk about institutional advocacy we relate this to being the patient voice when working with government-run bodies e.g. the NHS or like NICE (National Institute for Health and Care Excellence) which is an NDPB “Non Departmental Public Body”.

Advocacy doesn’t just work at a national level and proves to be a handy persuasive tool not only at a regional level but also at a local like with CCG’s, GP surgeries or acute trusts.

If you want to help us out please follow this link and contact us