Graham Butland, EACH Chief Executive, said: “EACH proudly contributed to the All-Party Parliamentary Group (APPG) report. We welcome its publication and very much look forward to positive outcomes as a result of their recommendations.
“EACH submitted a comprehensive response to the APPG and our Consultant Nurse, Linda Maynard, gave evidence to the group. Linda highlighted the great work being done in the East of England, including planned and coordinated care as part of a unique Managed Clinical Network, and the urgent support EACH and families in East Anglia need.
“We took the opportunity to forward our submission to the Royal College of Nursing and all MPs in our area, whilst asking them to consider being part of the parliamentary panel taking evidence.
“We also encouraged families to complete the APPG’s online survey.”
Every day, EACH faces many challenges, similar to all children’s hospice services across the UK, including:
Increased demand
Continued improvements in care mean children and young people are living longer, and with more complex medical conditions. There are currently over 2,000 in East Anglia who may require an aspect of EACH’s service and that figure is growing rapidly, with public health studies reporting it could be as high as 6,000 by 2025. Awareness and understanding of what EACH does is growing, meaning a higher proportion of that increasing figure will be seeking care and support.
Care staff shortage
This is an issue that has been with EACH, children’s hospices across the UK and, indeed, the NHS for many years.
EACH has always worked hard to do all it can to recruit and maintain staff, and has plans in place for a high-profile care staff recruitment campaign in 2019.
The largest cause of nurse vacancies at EACH and across healthcare in general is the national shortage of nurses and, in particular, children’s nurses – meaning there is a lot of competition for experienced staff.
This has been compounded by the recent government announcement of the three-year NHS funding proposals increasing staff pay.
While the NHS has been given additional funding to pay for salary increases, organisations like EACH are having to fund that increase from their own income generation sources.
EACH is still able to continue providing the most urgent care for families – 24/7 specialist nursing and symptom management care at the end of a child’s life, whenever and wherever the child and family needs it. It is also very proactive with cross-site team-working and upskilling existing staff.
However, the level of resource required to deliver an increasing amount of vital end of life care, inevitably, has an impact on its wider service offer of short breaks, wellbeing activities and therapies. This means it sometimes delivers less of what it wants to for all families using its services.
Secure and stable income to enable planning for the future
EACH estimates just 16% of its income this year will come from statutory sources. It relies on donations for the majority of its income and needs to raise more than £6 million from fundraising and over £4 million from its shops.
EACH meets with and writes to MPs and Clinical Commissioning Groups about the challenges it faces, and Together for Short Lives, along with other national palliative care organisations, continue lobbying government to try and secure additional funds for children’s hospices.
“Without EACH I really don't believe we would have made it this far together as a family. They make a really hard time just that little easier to deal with.”