1. Mothers' Instinct
"Parents are the expert of their own child."
In a healthcare setting (indeed any setting!) we believe they should be listened to, communicated with, and consulted with, with this in mind. Experience tells us that 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.
By building an information library of patient stories and learning outcomes, we 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. The learning outcomes will share ideas for best practice to facilitate this.
2. Working with the NHS
We will share patient stories and the learning and changes that were borne from them, to be accessed by NHS professionals, and used as another resource for learning and informing best practice. Our aim is for national, rather than just 'in house' learning from events.
We will work together to further develop awareness and training in core areas of paediatric care, including the vital requirement to listen to parental gut instincts and act upon them, fundamental skills of communication, and getting the basics right.
We are a source of parents who can be interviewed as part of qualitative data collection, to inform projects designed to improve health outcomes for children, systems for investigating avoidable deaths, or bereavement packages for families.
3. Bereaved Parents support
We offer a support network for parents who have lost children and medical error is involved. Parents who are not only trying to cope with the overwhelming grief, but are having to cope with the knowledge that had their medical management been different, their child may still be here. Families can contact us through our website, and we will phone them back asap. We offer opportunities to get together and meet other familes to share experiences, share support, and make new friendships with people who 'just know'
We campaign for a better care package for the avoidably bereaved, and use our experiences to educate the NHS on what families need in terms of emotional, psychological, and practical support when tragedy strikes.
4. Continually push for a truly open and honest NHS
We will share our experiences to 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 death of their child, and patient safety be truly improved through learning.