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 doctor, who knows medicine, at every stage of the childs patient journey, would reduce the potential for error or tragedy.
I will demonstrate the very real need for parents to feel confident and justified in raising any concerns they have about their child's management, and for medics to listen, understand and fully consider them when making their decisions.
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 communication with parents, patient safety for children, and care of avoidably bereaved families.
3. Provide a Source of 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 telephone support on a regular basis. I have a young family to look after, and, I'm also an avoidably bereaved Mum myself, still doing my best to cope emotionally with my own grief.
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, psychological, 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.
I will reach out to the avoidably bereaved families who contact me (with their permission) 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.