How we support you

We know this may be an extremely difficult time for you and your family and our aim is to support you as best we can. The Embrace team should talk you through the transfer process and give a clinical update on your child’s condition. There are also the following resources which may be of help.

Parent Packs

When children are ill, parents find themselves having to move hospitals and frequently have nothing for themselves. Parent packs were introduced to help parents at this extremely stressful time by providing them with some items so they can get showered and have something to eat when they first arrive at the hospital before family members can bring in an overnight bag for them. We hope these packs will alleviate some of the pressure on them in the first few hours after admission to hospital. The items in the packs have been purchased using money kindly donated to our charity by the families of babies and children that we have cared for. If you would like to donate some items to go into these bags please use this link to look at our Amazon Wish List (click link to open page). Any items purchased will be sent directly to us. Thank you for all of your donations.

Bliss

Bliss is the UKs leading charity for babies born premature or sick. They can provide information and support for parents and families throughout your baby’s journey. If your baby has been born with a problem with their heart, Leeds have a specialist support system and team. This leaflet may provide further information. 

Support on PICU

Both paediatric intensive care units (PICU) at Sheffield and Leeds have a family support nurse who can offer advice, support and guidance whilst your child is on the unit. They can also signpost you to other services and organisations who may be able to provide further support if required. Please speak to your bedside nurse or nurse in charge for more information.

PALS

Patient Advice and Liaison Service (PALS) offers confidential advice, support and information about their NHS care/service. They provide a point of contact for patients, their families and their carer’s.

PALS works independently when handling patient and family concerns. They will listen to you and liaise with staff and, where appropriate, other organisations to ensure prompt solutions. They can also refer patients and families to local or national support groups.

Contact PALS at:

• Sheffield Children’s Hospital, call 0114 271 7594 or email scn-tr.pals@nhs.net
• Leeds General Infirmary, email leedsth@nhs.net
• Other hospitals: through reception and switchboard

Death of a baby or child

The death of a child is the most difficult thing any family can go through. ‘Child death review’ is a term used to describe the formal processes that happen after a child dies. It is important that there is a review of every child’s death to learn as much as possible. This review is designed to support you and other members of your family in understanding why your child died. It will also try to prevent other children dying from the same cause.

This guide from National Child Mortality Database (NCMD) has been put together by a group of bereaved parents, support organisations and professionals; it is for parents and carers of a child to help you understand some of the things that will now happen and the support that is available.