For parents to be fed when staying with their child
This was one of Sophie’s main things she wanted changed. She couldn’t ever understand why the parent staying with their child was never fed. She used to say ‘my mum has no choice but to be here, she is here because I am poorly yet she is not fed’. Throughout her treatment we stayed in Portsmouth, Southampton and UCLH (London) hospitals. We found the same issues in all three and I am aware it is like this across the country.
Only 15% of hospitals in the country feed the parent that stays. Sophie often didn’t want me to leave her to get something to eat – she was scared, worried about being sick or just didn’t feel safe enough to let me go. Due to covid no other person could come in to sit with Sophie so I could leave her – it would often mean I couldn’t eat. When I knew I was going to be admitted I would take snacks which wouldn’t be healthy but it meant I ate something, it resulted in me gaining over two stone in weight in a year of Sophie’s treatment.
Since Sophie died this has been one of the wishes I have been determined to change as quick as possible. To hear of stories of parents not eating for 5 days, not being able to afford to eat or not able to leave their child to eat drives me to fill these gaps. We shouldn’t be allowing parents to not eat when their child is so poorly.
Sophie’s Legacy charity have been providing snack and toiletry boxes to 17 children’s ward in Portsmouth and Southampton hospitals. We have been delivering them every single week since January 2022 to ensure parents have access to food on the ward 24 hours a day, 7 days a week. The feedback has been extremely positive often with parents saying without the food we provide they wouldn’t have eaten. We will continue to provide these until they are not needed. We also have the same boxes in hospitals in Chichester, Guildford, Basingstoke, Winchester and Salisbury. We cover the children’s wards and Neonatal Intensive Care Units (NICU).
I talked to Sophie before she died about her wish to get parents fed and to change them in our local hospitals. Sophie was insistent that the changes should be across the country, her words were ‘what about the other children and parents in the other hospitals’. Sophie showed empathy and maturity way beyond her years and made it clear that this should be changed nationally.
I have been working with Phil Shelley (NHS Food Review), Ruth May (Chief Nursing Officer) and Kate Pye (Deputy Chief Nursing Officer) along with staff in a variety of hospitals across the country. The team have visited many hospitals across the country. One of the findings is that the cost for one parent to eat in hospital is around £15 a day. Given the current financial challenges this means some parents will not be able to afford to eat.
Sophie’s story was presented to the NHS board in February 2022 and we received a letter stating their commitment to trying to achieve Sophie’s wishes. I shared Sophie’s story to Southampton hospitals trust board in September 2022 and they started providing every parent with a £4 meal voucher to redeem at the restaurant everyday during their stay. I shared Sophie’s story to the National Children’s nursing leaders meeting on 29th March 2023.
Sophie’s story has been shared with many hospitals across the country with the aim to implement her wish of parents being fed. Locally we have brough freezers for parents’ room and filled them with meals from Cook. We wanted to provide nutritious food which would make parents feel cared for. We have been so grateful for Cook for choosing us locally to provide 30 meals a week for free for a whole year. This means we can provide so many more meals to parents in hospital.
We have delivered over 40 pizzas every Saturday night since May 2022. Each week they are sponsored by a different business or individual and delivered to each parent staying in Portsmouth hospital (NICU, Starfish, Shipwreck, CAU and children’s A&E wards).
In December 2022 we started having volunteers go around to every parent on Starfish, Shipwreck and CAU wards in Portsmouth hospital. They visit each parent and offer them snacks, drinks, toiletries, or emotional support. This service is seven days a week throughout the year. It has made a significant difference especially for parents who cannot leave their children.
In March 2023 an eight week trial began of feeding the parent that stays overnight with their child at Alder Hey, Birmingham, Bristol, Great Ormond Street, Leeds, Manchester, Newcastle, Sheffield and Southampton children's hospitals. This trial was funded by the NHS but named 'Sophie's Legacy pilots'. This has been such a huge achievement so far. We hope with the findings from this trial we will be able to evidence the need. It is hoped this initiative can then be rolled out across other hospitals.
Children like Sophie would often be going home still poorly and therefore the parent becomes the full time carer. If we don’t look after the parent then this will impact on the child. The issues of parents not being fed have been the same for decades, I had a parent contact me saying when her son had a brain tumour 30 years ago, the issues I am raising were the same.
It is therefore time to change this and what a legacy Sophie could leave. She would be proud to have changed the food for parents given how much she loved eating!
In Sophie's Legacy
Sophie wanted the following things changed and this will be her legacy in memory of a remarkable young girl who touched so many lives.