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SUPPORTING FAMILIES, CELEBRATING LIVES a WORD from 2 Our Chair SUMMER 2019 Soft UK SUPPORTING FAMILIES, CELEBRATING LIVES A WORD FROM 2 Our Chair Welcome to a packed newsletter, full to participate of family stories, information and in some work updates. We hope you enjoy reading being carried and finding out what is going on in out by the University of Leeds, into the world of SOFT UK! the delivery of challenging news There is so much in these pages but after ultrasound scan. They are I would just like to highlight one focusing on identifying the specific article – the blog that Alison Pearson words, phrases and behaviours that (mum to Isabel) has written, with sonographers should use to deliver another mum of a little girl with different types of unexpected or Down’s syndrome, for Public Health challenging news that they identify England on the use of language. during ultrasound. Interestingly, there is no widespread agreement on We know that the words we speak how this should be done. The result can leave a huge impact and create is that sonographers often decide a lasting memory - either good or for themselves what works best, and bad; for those who hear them. Joel their conclusions are not always in Osteen said: "Be careful what you line with parent preferences. say. You can say something hurtful One, small step, but hopefully we in ten seconds, but ten years later, can get your views and experiences the wounds are still there." We hear across and make a difference for that from many families when they families in the future. talk of how they were told of a high Enjoy the rest of the newsletter risk or diagnosis of Trisomy, or when and do keep letting us know your medical professionals talk about the feedback, contributions and ideas for future for their child with Edwards’ or future editions. Patau’s Syndrome. Hope to see you soon, However, it is encouraging that there is starting to be a real dialogue now about language, and a recognition that what a clinician says can have a powerful and long-lasting impact Jan Fowler on a family. SOFT have been invited Chair, SOFT UK 3 4 Soft News 34 Fundraising 15 Family Stories 42 Volunteering 24 Events 45 Research 31 Trisomy Blog 49 Resources Contents SOFT UK NEWS 4 SOFT UK Trustee improve the use of language and terminology in screening information Alison Pearson and publications. The national blogs for Public screening team in PHE really wants to help promote and champion Health England the appropriate use of language to Alison was one of two mums improve women’s experiences of asked by Public Health England antenatal screening. (PHE) Screening to talk about the importance of the language that They report today that this has been health professionals use when their most read blog ever, so huge communicating with parents and thanks to Alison for raising awareness parents-to-be about conditions like for Trisomy families Edwards’ syndrome. You can read the full article here. Many women can repeat word- for-word what was said to them, even many years on, when their baby was identified, before or after birth, as having a genetic condition. It is therefore important for the professionals working in screening and diagnosis to get their language right. Alison writes: “In the days and weeks to follow her condition was called ‘lethal’, we were told it was not ‘appropriate’ to resuscitate.... Others with the same diagnosis have been told their child is ‘incompatible with 3 life’”. PHE is doing a lot of work to SOFT UK NEWS 5 Brand New Service FAMILIES LINK LIST For decades families have told us that what makes all the difference to them is contact with other families. This is particularly true for families caring for a baby, child or young adult with a Trisomy. Trisomy parents are a wealth of information on all sorts of topics, from infant feeding to specialist education. They are a vital source of support, as they can often understand in a way no one else can. SOFT UK’s Support Team provides excellent support to families, but many families simply want to speak to another family who are caring. We are therefore developing a Families Link List, to enable our volunteers to link families who might like to get to know each other. If you are a SOFT UK member currently caring for a child with a Trisomy or related condition, and you’d like to offer your support to other families, please contact Demi Powell to find out more or sign up here. If you would like to make contact with another family for support, please contact our Enquiries Line. SOFT UK NEWS 6 NEW PROFESSIONAL ADVISER SOFT UK would like to welcome our of the outcome of their pregnancy. I have new Professional Adviser, Ali Brett, bridged the gap for families between Bereavement Specialist Midwife at healthcare professionals when they leave the neonatal setting. I advocate for families Ipswich Hospital. Our Professional within my clinical setting, helping families Advisers bring their wealth of clinical to be listened to. experience to the organisation, to advise on our work and share I also have links with the Treehouse, East their knowledge with us. They help Anglian Children’s Hospice and refer families us in everything from research to for extra support when a diagnosis is made. publishing information. I oversee the Ipswich Hospital Baby Bereavement Support Group and Charity. We but provide online and a monthly support group in a building within the hospital grounds. We offer an engraved brass leaf on the Tree of Remembrance in Holywells Park to families who have lost a baby. Many families who opt to end the pregnancy grieve silently. I refer all bereaved families to Petals Perinatal Counselling for which I secured hospital funding in 2017. All couples are offered six one-hour sessions. I’m currently in talks with EACH to also provide “I’ve been the Bereavement Midwife in support for the wider family, especially Ipswich Hospital for 3 years now and siblings. have supported several families receiving a Trisomy diagnosis in pregnancy. Each I am the point of contact for the National family has had very different experiences; Bereavement Care Pathway in Ipswich making different decisions and experiencing Hospital, which is the voice of the parents different outcomes. after a loss. This gave me great confidence to step up to be a true advocate for parents I support families during their pregnancies to ensure they are listened to and their and often far beyond that. Some are still choices are accepted.” in regular contact for support, regardless SOFT UK NEWS: Our Networks 7 TOGETHER FOR SHORT LIVES Together for Short Lives is calling on NHS England to keep its promise to protect the Children’s Hospice Grant and go further by increasing it to £25 million per year. Children’s hospices are receiving a lower level of funding from the state than ever before, forcing some hospices to cut back services and others to face closure. At the same time the cost of providing palliative care to children with life-limiting and life-threatening conditions in children’s hospices in England is increasing, as are the number of children needing support and care from these vital organisations. Together for short lives’ recent survey of children’s hospices found that: • Overall, the level of funding children’s hospices receive from the state has dropped to 21%, down from 27% in 2013/14. • The average amount given to each children’s hospice charity by local NHS clinical commissioning groups (CCGs) fell by 2% between 2016/17 and This combination of falling funding 2018/19. and increasing costs is hitting our most vulnerable children and their families. • 15% of children’s hospice charities Many children’s hospice charities have receive nothing at all from their CCGs. been left with no option but to cut back crucial services. In the survey, one fifth • There was a 4.5% increase in the (19%) of children’s hospice charities amount that children’s hospice charities revealed they have had to cut vital short spent each year to meet the needs of breaks for respite. seriously ill children and their families between 2016/17 and 2018/19. To find out more visit their campaign page. SOFT UK NEWS: Our Networks 8 Scottish Children and Young People’s PALLIATIVE CARE GENETIC NETWORK ALLIANCE UK Genetic Alliance UK has launched its ‘Rare Resources’ Toolkit for families in Scotland. Rare Resources: Scotland is a guide produced by Genetic Alliance UK for families in Scotland who have recently New research commissioned by CHAS received a diagnosis of a genetic or rare (Children’s Hospices Across Scotland) condition, who are on the journey to a shows up-to-date information about the diagnosis, or families who have been told numbers and characteristics of babies, their child’s condition is so rare they might children and young people aged 0-21 not get a diagnosis. years who have life-shortening conditions. Across Scotland this figure stands at The Toolkit contains a wide range of 15,949. general information on genetic, rare and undiagnosed conditions, as well as These figures confirm what CHAS already information on how to access reliable knows - there are many and an increasing information, care and support in Scotland. number of children in Scotland who are likely to die young. The Toolkit includes the following sections: • Genetic, rare and undiagnosed Of all the deaths from life-shortening conditions explained conditions each year, almost 40% died • The journey to diagnosis before reaching their first birthday.
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