Virtual children’s hospice to support self-isolating families


Children’s Hospices Across Scotland (CHAS) launched the UK’s first virtual children’s hospice to support children with life-shortening conditions and their families during the coronavirus crisis, and beyond.


The hospice charity, which supports Scotland’s most vulnerable children, set up this innovative new service to help families who are self-isolating or unable to visit a hospice.


CHAS is a charity in Scotland that provides hospice services for babies, children and young people with life-shortening conditions. The national charity offers palliative care and respite for the whole family via its two hospices, Rachel House in Kinross and Robin House in Balloch, and its CHAS at Home service supports families in their own homes and has teams working in hospitals across the whole of Scotland.


The virtual hospice will offer families nursing, medical and pharmacy advice by phone and video; bereavement support; money and benefits advice; and practical advice around coronavirus. The service will also offer a storytelling service for children at home; letter writing for children and parents; activity packs and art clubs; and virtual Clowndoctor visits, with more in the pipeline.


Alongside the launch of the virtual children’s hospice, CHAS is supporting the NHS and Scottish Government in this national effort. Our at-home staff are helping sustain packages of care for children at home, and we are working with all three children’s hospitals in Scotland. CHAS’s support in hospitals includes the first hospital-based palliative care teams in the Royal Hospital for Children in Glasgow which was launched last year, and specialist colleagues working alongside the NHS in Edinburgh, Inverness, Aberdeen and Kilmarnock.


Rami Okasha, CEO of CHAS, said:


“This is an incredibly difficult time for everyone, particularly for families caring for children who will die young. CHAS will be alongside those families in every way we can and that’s where our virtual hospice comes in.


“Many families we support are self-isolating and our two hospices have to prioritise end-of-life and crisis care right now.


“For families who can’t come to the hospice, we will take our hospice to them. Our nurses will be reaching out to families to offer advice and support. Our dedicated volunteers will make friendship calls to ensure parents never feel alone. Our specialist teams are on hand to provide clinical advice and keep children smiling with a suite of great activities. We can do all that, ensuring face-to-face care is prioritised for emergencies and crisis.


“Keeping the joy alive is at the very heart of everything we do at CHAS but it goes without saying it’s putting more strain on our resources just when fundraising is hardest. We really need your help to keep our services running and help us adapt our care to those who need it most.”




Community pharmacy palliative care network for children launched

Photo credit: Chris Watt Photography.


Children’s Hospices Across Scotland (CHAS) and NHS Forth Valley have launched the ‘CHAS Community Pharmacy Network’, the first of its kind for children in the UK.


The network aims to support babies, children and young people (aged 0 to 21 years) with life-shortening conditions, and their families by providing timely access to specialist medicines and paediatric palliative care advice in their local community.


Encompassing 14 community pharmacies in Forth Valley, all of which are part of the existing adult palliative care network, this pilot will be regularly evaluated, helping shape the further development of community pharmacy-led services responsive to the needs of children with life-shortening conditions, and their families.


Once the Community Pharmacy Network has been established within Forth Valley, CHAS aims to spread this network across Scotland and explore how community and primary care-based pharmacists can provide a direct patient-facing medicines review and symptom control service for children with life-shortening conditions.


This unique community network will be piloted from January 2020 until December 2020.


CHAS is the only charity in Scotland that provides hospice services for babies, children and young people with life-shortening conditions. The national charity offers palliative care and respite for the whole family via its two hospices, Rachel House in Kinross and Robin House in Balloch, and via its CHAS at Home service; supporting families in their own homes. CHAS also supports in clinical settings across the whole of Scotland through their Diana Children’s Nurses and in December 2019, CHAS launched a new Supportive and Palliative Care Team in the Royal Hospital for Children in Glasgow.


Kate McCusker, the Lead Pharmacist at CHAS, said:


“Working alongside colleagues at NHS Forth Valley, we identified the important role that community pharmacy can play in delivering paediatric care services, improving the safe use of medicines for those children. As a consequence, an exciting new service has been developed with community pharmacists taking a leading role.


“The service will capitalise on the clinical expertise of community pharmacists, their unique accessible position within local communities and their reach across Forth Valley to improve access to specialist medicines and palliative care advice for healthcare professionals and parents who care for children with life-shortening conditions.”


Anne Wilson, a Specialist Palliative Care Pharmacist at NHS Forth Valley, said:


“Inspiration for the CHAS Community Pharmacy Network came from two existing adult services that operate across Scotland, namely the NHS Forth Valley Palliative Care Community Pharmacy Network and the Scottish Palliative Care Pharmacists Association (SPCPA).


“Children should have timely access to palliative care medicine and the 14 community pharmacists who are participating in the network are spread geographically across Forth Valley. They will hold key medication for palliative paediatric patients and help with any questions parents might have. The impact a community pharmacist can have on these patients in Forth Valley is extremely significant.”


Rose-Marie Parr, Chief Pharmaceutical Officer at the Scottish Government, said:


“This is a great example of person-centred care which we know from evidence can have a positive impact on health outcomes. Through this pilot, pharmacists will be trained in the delivery of pharmaceutical paediatric palliative care and can pro-actively support parents to safely manage their children’s changing medication requirements. This is tailored to the individual needs of the parent and child and addresses any emerging health literacy issues head-on”.


Photo from left to right: Campbell Shimmins (Pharmacist and Chairman of Forth Valley Pharmacy Contractors Committee), Amy Forsyth (Specialist Palliative Care Pharmacist at NHS Forth Valley), Anne (Specialist Palliative Care Pharmacist at NHS Forth Valley), Caroline Johnstone and Ayla Johnstone (CHAS family – Ayla suffers from Edwards’ syndrome), Kate McCusker (Lead Pharmacist at CHAS), Pat Carragher (Medical Director at CHAS) and Amanda Dougall (Lindsay & Gilmour).