A national charity supported by our Assura Community Fund has expanded the integrated help its specialist nurses provide for seriously ill children with the establishment of a family support service for financial and welfare benefits advice.
initially set up as a response to the additional pressures placed on families during the pandemic, The Roald Dahl’s Marvellous Children’s Charity's Marvellous Family Support Service helps families access financial benefits that they need to meet the costs of caring for a seriously ill child.
Often, families are daunted by paperwork and complex processes, which prevents them from accessing the benefits they are entitled to, putting additional and unnecessary pressure on the family.
Now, thanks to a significant grant from our Assura Community Fund, Roald Dahl’s Marvellous Children’s Charity has partnered with Citizens Advice Cardiff & Vale to add financial and welfare benefits advice for families.
Roald Dahl Specialist Nurses work with children, young people and their families across the health and social care system, from primary to tertiary care, bringing in social care and community support, third-party equipment providers, education, housing and mental health and wellbeing services.
There are 80 Roald Dahl Specialist Nurses in the UK, employed by the NHS and part-funded through the charity. They care for children and young people aged 0-25 who are living with life-long conditions such as epilepsy, neurodegenerative disorders, sickle cell anaemia, and rare or undiagnosed genetic conditions.
Roald Dahl Specialist Epilepsy Nurse Liz Nelson, who is based at the Queen Alexandra Hospital in Portsmouth said that the new family support service enhanced the holistic and integrated support offered to families: “Many of my families struggle with applying for Disability Living Allowance/Personal Independent Payments, accessing appropriate housing and adaptations such as showers - especially those families who are working but on low income and don't meet financial thresholds - housing arrears, assistance with travel for 16–18-year-olds, school transport, relationship breakdowns…”
Roald Dahl Specialist Epilepsy Nurse Stacey Ratcliff, who is based at Queen Elizabeth Hospital in South East London, added: “With DLA/PIP applications, parents and families have to research and work out how to apply and often get rejected without supporting letters from clinical teams. Finding out about their rights, what benefits they are entitled to, what local and national support is available to them is problematic, as is applying for Education and Health Care Plans.”
Roald Dahl Specialist Nurse Sarah Rose, who looks after Rare Disease and SWAN – Syndromes Without A Name - patients in Birmingham, explained: “A lot of our families in rare diseases struggle to condense the information; there is so much that they need to explain about their condition that it is a challenge to understand which element is relevant for the various applications.”
Jonathan Murphy, our CEO, said: “Supporting charities to try innovative new ideas to improve health and to reduce health inequalities is one of the big drivers behind the Assura Community Fund, and we really look forward to seeing the difference that this new partnership can make for the families Roald Dahl works with who are facing such challenging circumstances.”
It is open to families already under the care of a Roald Dahl Specialist Nurse – families contact a helpline run by the charity and are connected with a specialist advisor at Citizens Advice Cardiff & Vale.