1. Stress the importance of 'Mothers' Instinct' (not just Mothers!)
"Parents are the expert of their own child."
In a healthcare setting (indeed any setting!) they should be listened to, communicated with, and consulted with, with this in mind. Combining the expertise of the parent, who knows their child, and the Healthcare Professionals, at every stage of the childs patient journey, does reduce the potential for error or tragedy.
I will demonstrate tthat it's crucial for parents to be enabled, empowered and fully engaged with as equal partners in their child's healthcare journey, and will campaign for a shift in culture that truly allows for this to happen to improve safety.
I will push for a campaign to educate all parents about patient safety issues and what they can do to advocate for their children
2. Work with the NHS in any way that drives Patient Safety Learning
I will share Jasmine's story, my story of fighting for thruth and learning after she died, and my expertise from experience, to be used by NHS professionals as a resource for learning and informing best practice. My aim is for national, rather than just 'in house' learning.
I will work together with the NHS via any route requested of me (examples to date include; Conference Speaker, Patient Advocate, Steering Group Member, Involvement in Research, Part of Patient Safety Initiatives and Groups, Sharing my story as part of Doctor/Nurse training, involvement in projects to produce patient safety tools, ) to help drive improvements in engaging parents as equal partners in their child's healthcare, patient safety for children, and care of avoidably bereaved families.
Wherever and however possible, I will enable the voice and experience of all the families who contact me to be utilised.
3. Provide / Campaign for better Practical and Emotional Support for Avoidably Bereaved Parents
I will do my best to provide a website full of information that helps parents bereaved from medical error understand where to get the support, and information they need. I will endeavour to make sure they know what the NHS should be doing and how to ask for it. I will aim to respond to emails sent directly to me via the website promptly. I have learned the hard way, that I cannot, (much as I wish I could) provide a source of one-to-one emotional support to bereaved parents on an on-going basis. I recognise the need for a service like this though, and will raise awareness of that need.
I will campaign for a better care package for the avoidably bereaved, and use my experiences (and those of the families who contact me) to educate the NHS on what families need in terms of emotional support from peers with lived experience of the avoidable death of a child, specialist psychological support from professionals specifically trained/experienced in working with avoidably bereaved parents, and practical support when tragedy strikes.
I will provide a platform for other avoidably bereaved parents to share their child's, and their stories, to be learned from by parents and healthcare professionals nationwide.
I will (with permission) keep a database of families who contact me, and reach out to them when asked to give opinions or provide feedback to the NHS or other organisations concerned with safety of paeditric care, to ensure we have a 'louder voice' and capture a greater breadth of opinion wherever possible
4. Continually push for a truly open and honest NHS
I will raise awareness of the need for the NHS to be truly open and honest with families when things go wrong.
Families suffer greatly when they struggle to get answers to their questions, or know they are not being told the ‘full story’. This is cruel and unjustifiable, bringing more pain and suffering on people at their time of total despair.
Only with full openness and honesty can families receive the respect and kindness they deserve following the avoidable death of their child, and patient safety be truly improved through learning.