Formation 1979 Location United Kingdom | Headquarters London | |
Legal status Registered charity no. 1002973 Purpose Bliss exists to ensure that every baby born premature or sick in the UK has the best chance of survival and quality of life. Region served England, Scotland, Wales, Northern Ireland, Channel Islands | ||
Bliss exists to ensure that every baby born premature or sick in the UK has the best chance of survival and quality of life. Bliss supports families, work with health professionals, and campaign for improved hospital resources across England, Scotland, Wales and Northern Ireland.
Its Chief Executive is Caroline Davey.
Contents
History
Bliss was started in 1979 when a letter was sent to the Daily Telegraph in response to a story on neonatal intensive care units. Allan Chilvers suggested setting up a society to raise funds for life-saving equipment like incubators for premature babies and BLISS (Baby Life Support Systems) was born. In five years £750,000 was raised and equipment had been given to 82 hospitals.
The 1990s saw the introduction of artificial pulmonary surfactants and antenatal steroids which reduced infant mortality and meant more premature babies began to survive. During this decade, Bliss was chosen as the charity for the Blue Peter appeal twice, raising £2.7million and helping to raise awareness about underfunding in neonatal intensive care units
In 2000 Bliss ran a campaign to show that neonatal intensive care units in the UK were relying on the charity for equipment, rather than the NHS. The story made the front page of the Daily Express and £6.5million was then announced for neonatal intensive care. From then, Bliss decided to spend less money on equipment and started funding medical training and research.
Bliss today
Bliss’ work today helps special care babies through campaigning, research and family support services. They provide support for families through their helpline, parent forum, and support groups and volunteers. They also provide publications to parents and neonatal intensive care units on subjects like understanding equipment in neonatal units, kangaroo care, and weaning.
They are working with the NHS to introduce dedicated Bliss Nurses across the UK, to provide direct support to families with babies in special care. They are also working in partnership with the True Colours Trust on a grants programme, called the Bliss Baby Charter Grant Fund, to support the development of family-friendly facilities on neonatal units throughout the UK.
Bliss raises awareness of the issues affecting special care babies by campaigning for change within government and the NHS. In February 2014 Bliss launched a campaign for more financial help for families with babies in hospital, with a campaign called 'It's not a game: the very real costs of having a premature or sick baby'. Bliss is also currently campaigning for flexibility in the school starting age.
Bliss works in partnership to promote and support best practice in neonatal care, and is currently involved in £7.5 million of research such as:
The Epicure Study
Since 1995 Bliss has supported the EPICure study, which tracks the chances of survival and later health status of babies born at less than 26 weeks gestational age. This study is helping to inform healthcare and education services to ensure the right support is provided at all times for premature and sick babies as they grow towards adulthood.
Guidelines for the screening and treatment of Retinopathy of Prematurity
Retinopathy of Prematurity is damage to the retina area of the eye that is sensitive to light and is common amongst premature babies. This disease can, however, be treated if diagnosed early. Bliss produced guidelines for the screening and treatment of this disease. A direct result has been an increase in the screening and treatment of this disease, improving babies’ long-term vision and quality of life.
SCAMP Study
The heads of babies that are born extremely premature (less than 29 weeks) do not grow very well, which affects how their brains develop later. Many of these babies are fed intravenously, directly into a vein, in the first month of life as their gut is too immature to digest milk in high enough quantities for their nutritional needs. This study, known as the SCAMP study (Standardised Concentrate with Added Macronutrients Parenteral), wanted to investigate whether improving the nutritional content of the babies’ intravenous feeds improves early head growth, which could affect brain development and ultimately the future quality of life for very premature babies.
Results: This study shows that head growth in the first 28 days of life can be improved by increasing the protein and energy content of the intravenous feed in babies less than 29 weeks, which continues until 36 weeks. Early protein intake is particularly important for head growth and brain development. Other studies have shown there is a relationship between head circumference and IQ, improved brain development and cognitive function, (the ability to process thoughts), at 2 years of age. The overall conclusion of this study is that by optimizing the nutritional content of the feed given intravenously to very premature babies their heads will grow more which can reduce the chance of defects to the baby’s brain and nervous system.
World Prematurity Day
17 November is World Prematurity Day. Bliss marks this international awareness day with other organisations from around the world. The group of organisations is known as the World Prematurity Network, and is made up of consumer and parent groups that are leaders in addressing preterm birth in their countries. Members of the World Prematurity Network call for actions to prevent preterm birth, and to improve care for babies born premature.
As well as Bliss, the World Prematurity Network includes: