Laura was a much loved and longed for daughter who completed our family, when she died a part of us died with her. Laura loved people and people loved Laura. She communicated using Makaton, actions, gestures, a few words and considered use of blowing raspberries. Laura was very able to make decisions, and ensure her views and opinions were known. Laura lived life on her terms, and we were only too happy to support her to do so. She brought so much joy to our lives.
Laura liked socialising and helping people and could light up a room with her smile. The sun went out of our lives when Laura died, she was our Little Miss Sunshine. Laura loved learning and school, and spending time with her friends, especially Lucy. Her school described her as a ‘professional at meeting and greeting… a very warm and interactive student who loved to engage the attention of others and showed immense kindness to staff and her peers’. Laura also loved going to church to see her church family and would insist everyone was included, shaking everyone’s hands at the sign of the peace. Laura was someone once met, never forgotten and she had magic powers of drawing you in and everyone loved her.
We heard evidence from doctors at Laura’s inquest about how she ‘suffered from a life limiting illness’, Partial Trisomy 13 and they seemed to suggest her death was inevitable. Even though the same doctors also said they did not expect Laura to die on her last admission. We heard lots of doctors describing how ‘complex’ Laura was and how they all wanted the best for Laura.
Laura loved life and she had much to live for. She was admitted to hospital on the 25 September 2016 for routine elective eye surgery due to take place the next day. When we arrived it became clear Laura had a low potassium level and surgery would not be safe. This was identified in her pre-operative assessment, but not acted upon. Laura had been off her food for a few days before we went into hospital, although she’d enjoyed fish and chips at Whitby the Saturday before.
We told the hospital she wasn’t eating normally and as time went on we became increasingly concerned that Laura was becoming weak. They gave her food supplements she could not take because of her lactose intolerance, which was written in her hospital passport. This resulted in vomiting and diarrhoea.
We always had concerns about Laura moving to the care of the Royal Hallamshire Hospital. She had received excellent care at Sheffield Children’s Hospital and the staff liked her and supported us. We were worried the equipment wouldn’t be the right size in the adult hospital, that staff wouldn’t know Laura, and that we wouldn’t be able to stay with her.
We were grateful we were allowed to stay with Laura but felt that meant staff didn’t bother with us, and many of our concerns proved to be right. The nutritional supplement Laura had at the Children’s Hospital wasn’t available, oxygen monitoring equipment didn’t fit, when Laura needed oxygen the mask was too big for her face, and her notes from the Children’s Hospital weren’t available to doctors.
We heard from the matron on the ward that the equipment that was gathered during Laura’s transition wasn’t available because it had been decided not to keep separate equipment that could go out of date. Instead wards now have paediatric grab bags in case a child visiting is taken ill, but she could not confirm that included the equipment that was needed for Laura.
At the inquest we heard doctors started talking about feeding Laura into her bloodstream, by total parenteral nutrition (TPN), on 29 September 2016. By the time Laura died, 24 days after being admitted to hospital on 19 October, TPN had still not been started. We feel that Laura starved to death and the staff did not listen to us. We also feel like no-one was coordinating Laura’s care or making decisions.
We heard evidence from Laura’s gastroenterologist, rheumatologist, a dietician, a nutritional pharmacist and others. They all talked about how they considered nutrition but none of them decided to go ahead with approving TPN for Laura until the day she died. The pharmacist said it had to be a medical decision to start, the doctors said that they had to defer to the nutritionists and pharmacists as they were the experts. No-one listened to Laura, or to us, as experts in Laura.
An independent expert told the Coroner his opinion was Laura should have been started on TPN earlier and that a Best Interests Meeting (under the Mental Capacity Act) should have been held. He also said if the team treating Laura were deciding not to give her TPN and permitting her to become malnourished due to risks of re-feeding that should have been made clear.
It makes no sense to us that we heard lots about the risks of re-feeding syndrome, or the danger of Laura’s electrolytes being unbalanced, but no-one seems to understand that the risks of not feeding Laura meant that she was starving, as she died in front of us. We cannot tell you how painful that is to live with.
This has to stop. It’s not right that learning disabled people die decades prematurely. It’s not right that Laura was malnourished. We also don’t think it’s right that the only reason Laura’s inquest was opened was because a journalist contacted the coroner. How many other people are dying without anyone ever finding out why?
We would like to thank our legal team David Evison of Anthony Collins and Mark Lomas of 3PB Chambers. We would also like to say a very massive thank you to each one of you for all the support given to us with the inquest, we will never be able to thank you all enough.
It was an honour and a privilege to have been Laura’s parents. We were so very proud of her, and we love and miss her so much.