Children’s Intensive Care Unit

COSMIC help fund a Family Support Service for families who have children on the Paediatric Intensive Care Unit. Having a child on the unit is one of the most stressful and traumatic times for a parent and our Family Liaison Nurses are on hand to provide practical and emotional support.

Our Family Liaison service supports our parents and families. Family Liaison nurses Helen Avila and Joanne Williams have been Sisters on the PICU unit for over 20 years and support parents and families helping them deal with their child’s illness, the discharge process and to access social care if their child has been left requiring specialist support. They also deal with any bereavement and generally ensure our families understand what is happening and feel supported every step of the way. Their roles are critical in making sure we provide the very best care to the family unit.

We also raise money for our Family Support Fund. This enables to us to provide ongoing specialised support to families and patients who may have additional needs. This could include financial assistance with travel to and from the hospital, specialised equipment to support the child when discharged and hardship awards or vouchers.

Below are just a few examples of some of the things we have funded:

  • Clothes for families with children on our intensive care unit following the Grenfell Tower disaster
  • A specialised wheelchair for a long-term patient
  • Tablets so that families could communicate with loved ones using secure means during the covid pandemic
  • Toiletries and wellbeing items

Having a child admitted to intensive care after they have become so ill that they need to be on a ventilator, is one of the most traumatic moments a parent can experience. Many families arrive on our unit in a state of shock, surrounded by equipment and wires that are now supporting their child to live.

Sadly studies have shown that over 50% of parents that have a child admitted to a PICU suffer from post traumatic stress disorder and struggle to process what has happened. To help support families who have a child on our unit, COSMIC provides counselling for parents to help them recover and process the experience. For bereaved families we provide counselling for as long as the parents need it.

We are lucky enough to work with some amazing counsellors to provide this service including – Caroline Weiland (link to team) and Petals a charity that provides specialist counselling after baby loss.

Having a baby admitted to a neonatal unit is naturally worrying for parents. They may feel frightened or anxious about visiting their baby. Our hospital staff are there to help parents get to know their baby and become involved in their care.

We provide parents with a COSMIC funded admission pack containing leaflets and information to help guide parents through their baby’s stay.

Neonatal Intensive Care Units

Having a baby admitted to a neonatal unit is naturally worrying for parents. They may feel frightened or anxious about visiting their baby. Our hospital staff are there to help parents get to know their baby and become involved in their care.

We provide parents with a COSMIC funded admission pack containing leaflets and information to help guide parents through their baby’s stay.

When a baby is on a neonatal unit it can be both physically and emotionally demanding. Every week our team offer a parents’ Group in the parents’ sitting room. This is an opportunity to meet other parents and discuss their concerns and anxieties with one of the clinical psychologists or nurses.

The parents’ group topics covered include:

  • Getting to know your baby
  • Day to day stresses while your baby is in hospital
  • Introducing siblings to their new brother or sister
  • Hopes and fears for the future

Our NICU team support all mothers to breastfeed as breast milk is the best food for babies. Some babies might not be able to feed from the breast, but they can still give them your milk. The team provides families with a pack which contains an expressing kit, a COSMIC funded ‘Miniboo’ cloth and a leaflet with more information about breastfeeding and expressing.

There is an expressing room on the neonatal unit.

Family-centred care involves families in the care of their own children, it has been identified as key to future neonatal service delivery by NHS England (in 2013) and the British Association of Perinatal Medicine (in 2014). The Integrated Family Delivered Neonatal Care (IFDC) team aim is to work in partnership with parents to create a consistent, nurturing environment where they feel engaged, enabled, educated and empowered as the primary caregivers to their baby.

Our neonatal service at St Mary’s and Queen Charlotte’s Hospitals, support the principles of family-integrated care. Parents are encouraged to attend ward rounds, present their babies and participate in the decision making process, and have skin-to-skin cuddles. Our units offer a donor milk bank and our breastfeeding rates at discharge are above the national average.

The IFDC project aims to support parents to become equal members of the neonatal team and participate in providing active care for their infant with the help of a comprehensive educational programme and competency based training.

Studies have shown that incorporating family-integrated care on a neonatal unit, showed decreased parental anxiety and depression, increased bonding, improved infant health, a reduction in infection rates and a decreased length of stay. As well as medical benefits, babies receiving more care from their parents gained weight better. Encouraging parents to spend as much time as possible in giving skin-to-skin/kangaroo care led to better bonding and increased rates of breastfeeding. Preventing the separation of mothers and their babies, and keeping them in skin-to-skin contact to provide comfort, soothing and interaction with their babies, appears to safeguard the potentially toxic effects of stress. Overall this improves outcomes and helps the development of coping strategies, reducing depression, anxiety and post-traumatic stress.

COSMIC is proud to support this work and helps fund items and projects for these teams.

The IFDC app helps parents of premature babies take an active role in their new-born’s treatment in an intensive care unit. The App is free to download and includes a diary to record skin-to-skin contact, expressing, feeding, growth and memories. This can be helpful to see a baby’s ups and downs and progress and can be a keepsake of a baby’s journey. Memories or news can be shared by parents by email which helps parents to update family and friends. A timeline maps development from 23 weeks gestation to term and provides parents with information about what they can do at each stage of their baby’s care. A glossary of medical terms helps navigate neonatal vocabulary.

Parent Accommodation

Having a child who is critically ill, is a terrifying moment, but having the extra of worry of finding and funding accommodation so you can be near to your critically ill child can have a devastating effect on a family. That’s why in 2018 COSMIC raised £1.5 million to create onsite accommodation a ‘ Home away from Home’ to support families with children receiving life-saving treatment on our children’s intensive care unit.

COSMIC House opened at the end of 2019 and has 12 bedrooms, a kitchen/dining area, lounges, play area and laundry facilities. The accommodation allows families to stay onsite and be within close proximity to their critically ill child at all times, and provides a safe and supportive environment for families to get a little bit of respite from the terrible situation that they find themselves in.

  • Supports over 400 families with critically ill children every year
  • Provides a ‘Home from Home’ environment and some resemblance of normal family life for families
  • Keeps families together at a time of crisis
  • Provides a place of respite for parents whilst they support their seriously ill child

We have proudly funded the creation, maintenance and refurbishment of 15 parent bedrooms and one bereavement room across the two hospitals. St Mary’s Hospital is home to six parent bedrooms and Queen Charlotte’s & Chelsea Hospital has nine parent bedrooms and a dedicated bereavement room. By providing on-site accommodation, our parents are able to stay with their babies whilst they are being cared for on the neonatal unit, rather than travelling back and forth to the hospital. For parents whose babies spend months on the unit, this can become a temporary home for them.

These parent rooms not only greatly benefit the parents by reducing the stress of being separated from their babies, but it has also been highly beneficial for the babies.

Every parent ‘rooms in’ with their baby for a night or two before they go home, allowing them to get used to caring for their baby on their own. Taking a premature baby home for the first time after a stay in the neonatal unit can be quite stressful for parents, but allowing them to make this transition by solely caring for their babies initially with a team of nurses and doctors just down the corridor greatly reduces this stress and anxiety.