What is advocacy

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

  • Have their voice heard on issues that are important to them.
  • Defend their rights
  • Have their views and wishes genuinely considered when decisions are being made 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 difficult to make your views known.

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

sarahjwalsh Well deserved indeed! What amazing progress! We're with you all the way Sarah! Total still rising!… https://t.co/rXBFkByyPs
4 hours ago
RT sarahjwalsh: pumpinghearts #L2BChallenge. Made it to the 40km mark. Sitting having a well deserved rest! Then next stop...56km!
4 hours ago
We hope you had a truly marvellous 102nd birthday Mr Radford! itsmrsvickyc https://t.co/J5d096S6dS
6 hours ago
RT bmj_latest: Additional clinical variables in QRISK3 helps doctors identify those at most risk of heart disease&stroke JuliaHCox https:…
7 hours ago

Political

Political advocacy is about influencing policy at the political level eg 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.

Political

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 certain therapy what would the economic effect? would it reduce the burden of cost to the NHS over a period of time over and above an existing therapy? 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 easier access to their community team therefore reducing hospital admissions? A specialist subject and usually involves a health economist.

Institutional

When we talk about institutional advocacy we relate this to being the patient voice when working with government run bodies eg 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 very effective persuasive tool not only at a regional level but also at a local like with CCG’s, GP surgeries or acute trusts.

Fancy helping us or becoming a patient educator?

Sounds a bit underhand using the phrase “unofficial” but we would like everybody to be an advocate for their rights and needs. We are more than happy to push our name out there and to raise the awareness of heart failure and it’s challenges.

So to be an official advocator for the Pumping Marvellous Foundation you need to enroll to be a patient educator. To find out how to become a patient educator and the benefits follow this link.