It is just over a week since we launched the Harmed Patients Alliance (HPA) website and we wanted to start this blog with a big thank you to everyone who has got involved so far. We have received lots of messages of support from harmed patients, healthcare professionals and researchers and dozens of people have signed up to the campaign already via the website. We are also hugely grateful for the support of our incredible advisory group.
Our mission is:
“To work collaboratively towards a future where harmed patients and families are respected and cared for, their needs are understood and met, their suffering is minimised and their recovery is enabled, where preventable second harm is eliminated.”
What do we mean by second harm?
The term ‘second victim’ is often used to describe the impact of patient safety events on healthcare professionals. The phrase ‘second victim’ can be controversial amongst patients and families affected by adverse patient safety events, but language aside, we understand that adverse patient safety incidents and events can have a devastating impact on healthcare professionals as well as patients and their families.
In relation to our campaign, by ‘second harm’ we specifically mean further emotional/psychological/moral harm caused to patients and families affected by a patient safety incident or event due to the way the healthcare organisation and wider system respond. Often, the current system acts in ways that not only prevent harmed patients and families healing, but which inflict significant additional harm, ‘second harm’.
Harmed Patients Alliance has been founded because we believe that whilst there has been considerable focus on improving patient safety and culture change in healthcare in recent years, there has been far too little focus on seeking to fully understand the impact of the second harm many affected patients and families have suffered and how to avoid this, and on understanding the needs of harmed patients and families that need to be met to aid their recovery. By working collaboratively with a wide range of harmed patients, healthcare professionals and academic experts, we hope to influence urgent commitment from the healthcare system to put this right, and induce transformation to a healthcare system that responds to harm in ways that promote restorative healing rather than contributing to more hurt.
So now that we have established HPA, what will we do next?
We have been busy having conversations with our advisory group members, harmed patients from the UK and abroad, healthcare professionals, patient and safety charities, and academic researchers to listen to their views and perspectives. These conversations are ongoing and are helping us to shape the initial projects we will progress over the next 6 months.
We will be working to produce a guidebook for harmed patients and families. We want this to be a single resource that harmed patients and families can use to find information, guidance, and advice from the perspective of people who have lived experience of the impact of healthcare harm on the patient and family members, and the system and processes involved after harm events. As people who have been through this experience, the starting point will be thinking about what information, knowledge and advice we wish we had had access to at the start of our journeys that would have helped us feel less isolated, understand our feelings and emotions, identify our needs, understand the system and processes we faced and engage with the healthcare system to support healing and learning.
We have been having conversations about the paucity of research that exists in relation to understanding and quantifying the impacts of healthcare harm, and second harm on patients and families. There has been little progress in developing evidence-based interventions to enable optimum recovery and avoid further preventable harm. We have started the process of identifying and collating existing literature (and sharing useful links on the resources section of the website) and will be working with our advisory group on developing proposals for research to start to fill the gaps.
We are also writing a thought paper to summarise where we are now with Harmed Patient and Family Care and support, and where we need to be, pulling together available evidence and discussing possible solutions, including describing international examples of best practice. Our paper will be a call for urgent actions to achieve the change we want to see.
We have published our values on the website and all our work will be guided by these principles. In founding HPA, we know that we don’t have all the answers ourselves. By convening experts with a wide variety of expertise, who share the same goals and values and by working collaboratively with other groups and organisations, and listening to the views of our member supporters, our aim is together to influence positive change that turns our mission into reality.
If you support our mission and want to help us bring the changes we need to see for harmed patients and families, information on how to sign up as a HPA member (so we can contact you to obtain your views) as well as how to get in touch with us is on our website.
All the costs of setting up and running the campaign so far have been self funded. We would welcome donations (however small) to help us cover the cost of our campaign work, projects and events to help us achieve our mission. If you would like to donate to support our work, you can do so here.
Once again, a huge thank you for the incredible enthusiasm and support received so far.
James Titcombe
Joanne Hughes