Forget Me Not Children’s Hospice that receives just 4% of government funding launched the Shooting Star Appeal today, a new appeal, to safeguard its perinatal support services.
Perinatal is the period from a 20 week pregnancy scan through to the first 28 days of life.
Latest figures from researchers MBRRACE-UK into perinatal deaths show West Yorkshire has significantly higher than the national average, including Bradford, Leeds and Kirklees. (View the MBRRACE perinatal surveillance stats below).
Luen Thompson, CEO of Forget Me Not Children’s Hospice, said: “The need is acute. The fact our region has such higher than average death rates, should be a national outrage.”
This year, the hospice is delivering care to 650 children and family members.
Luen said: “We need to raise £300,000 each year to support over 100 families from across West Yorkshire who need our perinatal services. We are launching our Shooting Star Appeal to ask for donations from the local community and to open the public’s eyes to a real issue affecting many families in the areas where they live.”
Forget Me Not Children’s Hospice provides a dedicated service to families whose baby has been diagnosed with a life-limiting condition after their 20-week pregnancy scan. It provides practical and emotional support for families if a baby dies before, during or shortly after birth, or continues to live with a life limiting condition.
Forget Me Not Children’s Hospice in Huddersfield was the first hospice in Europe to recruit a midwife. It pioneered its specialist services in response to West Yorkshire’s higher than average perinatal mortality rates.
The impact of perinatal deaths and stillbirth has been described by a report in The Lancet as an ‘epidemic of grief’. It has been linked with post-traumatic stress disorder and can have a long-lasting impact on bereaved families and society at large.
Luen added: “The personal, social and emotional consequences of stillbirth are profound. The average cost to the NHS of care related to a stillbirth is £4191. The cost of workplace absence as parents cope with the effects of grief was estimated at £8.1 million annually in the UK.”
“We are taking the strain off the NHS, as well as providing a lifeline to families. Beyond the physical trauma, baby loss is nothing short of an existential and sometimes spiritual crisis. We provide one point of contact and continuity of care for the whole family’s needs when and where they need it most.”
The hospice has forged a strategic partnership with the University of Huddersfield to fill the huge gap in research on the impact of perinatal care.
Vice-Chancellor, Professor Bob Cryan from the University of Huddersfield, said: “While there’s been wider research on stillbirth, more research needs to be done on the impact of perinatal deaths. Statistics show it is a bigger problem in West Yorkshire than anywhere else, and evidence of need will help Forget Me Not Children’s Hospice lobby for support.”
Services include clinical care as well bereavement support and counselling following a baby loss, not just for mums, but for the whole family too who are affected by this tragedy.
An internal review of the hospice found 100% of families said the support of Forget Me Not had been vitally important or important. 74% said that the support helped them to either stay in work or return to work, with 90% saying the services helped them to manage their emotional health and wellbeing. 94% said it helped them to feel less isolated and alone.
One mum said: “Just knowing forget me not were there anytime I needed them and being able to talk to someone helped me. They are like a safety net, you fall; they catch you.”
The Appeal is supported by the former Blue Peter presenter, author Janet Ellis, whose husband is originally from Huddersfield. Janet said: “The work of Forget Me Not children’s hospice is admirable, caring and very necessary. I’m proud to support their new Shooting Star Appeal, it’s a cause that’s close to my heart. As someone who has experienced frequent miscarriage I know how painful it can be. The support for families – medically and emotionally – facing the heartache of losing a baby is a very under-resourced area of care. Money raised by the appeal will ensure these vital, pioneering and much needed services continue.”
To donate to the Shooting Stars appeal go to https://www.forgetmenotchild.co.uk/
Suzanne and Tom’s Story
Suzanne and Tom’s baby Jacob was diagnosed with a complex heart condition in the early stages of pregnancy. Forget Me Not’s perinatal team were there to support the family from that moment on. When Jacob was born, doctors quickly realised that the operation he needed was extremely risky. Suzanne and Tom were faced with an impossible decision – to go ahead with the operation and risk losing him then and there or take him home and make the most of the time they had with him. With Forget Me Not’s support the couple chose to bring their son home. Jacob survived for 11 more days, during which time they spent precious time together as a family, took trips out and made a lifetime of memories.
Photo shows Suzanne and Tom, parents to Jacob.
*2019 MBRRACE-UK data indicates parts of West Yorkshire have higher than the national average of stillbirth and perinatal mortality rates. Bradford has a stillbirth rate of 4.82/1000 total births and a neonatal mortality rate of 2.88/1000 live births. Kirklees has a stillbirth rate of 5.38/1000 births and a neonatal mortality rate of 2.70/1000 live births. Leeds has a neonatal mortality rate of 3.30/1000 – all above the national average of 3.74/1000 and 1.67/1000 respectively (MBRRACE 2019).
View the MBRRACE perinatal surveillance report go to https://www.npeu.ox.ac.uk/mbrrace-uk/reports