Its now seven months since I lost my Mum to NASH Cirrhosis Liver Disease and this month I have done something positive in writing a document to feedback to the medical teams that looked after my mum through her illness. I have found it hard to write but also it has helped with my own grief.
I decided to write a reflection of Thanks, Mums pathway experience of it all, what worked and what was lacking. We have also applied to mums doctors twice for her records and twice denied due to patient preference's so I have also asked a few questions about the gaps and huge hole in being one of many who have been diagnosed too late to change their Livers Health.
I posted one to her GP doctors, the Hospice team, Hospitals consultant and PALS.
I really think its a valuable tool to feedback on your loved ones care, to give them a voice and to convey what patients and their families experience as how will they ever improve their services if we don't.
PALLIATIVE CARE
Volunteers required for research into prioritising what is most important in liver care.
Post Transplant care at Kings
Care After Transplant
