23 Oct Essex mum backs charity’s report showing families crushed under the pressure of the pandemic
A Silver End Mum, whose three-year-old son has thyroid cancer and a very rare endocrine disorder, is backing a new report launching today (Thursday 22 October) from Rainbow Trust Children’s Charity showing the immense pressures on families caring for a life-threatened or terminally ill child during the COVID-19 pandemic.
Tara Watkin is one of the case studies featuring in the report, Pandemic Pressures – The struggles and resilience of families caring for a seriously ill child, highlighting how COVID-19 has caused vast new emotional and practical pressures on families already facing a high degree of stress and anxiety over the health of their child.
At the start of lockdown Rainbow Trust conducted a survey of families it was supporting. Just under 80% of respondents said that their family situation was worse or much worse than before. Nearly 60% said that their mental health was either ‘worse’ or ‘much worse’ than before the pandemic.*
The report illustrates that restrictions on hospital visiting and loss of support has been particularly difficult for families where a baby or child has an acutely life-threatening condition. It also highlights how parents and siblings bereaved during the pandemic have not been able to grieve as they would have wanted.
The report features Tara’s experiences of protecting her seriously ill three-year-old son, Asher, during the pandemic whilst also looking after her other two daughters at home. Tara and the family have recently made the difficult decision to pull their daughter Tallulah, aged seven, out of school while the risk of contracting COVID-19 remains. As the school was unable to provide home learning for Tallulah the family felt they had no choice but to deregister her from school to avoid being charged weekly non-attendance fines from their local authority. The impact also means that their younger daughter Esme, aged four, whose school start was delayed by a year, has also lost her school place for September 2021.
“It’s been really, really tough. Our safety net has gone. Caring for Asher rests solely on our shoulders. We have to risk assess everything we do. We’ve taken the decision, looking at the facts and figures, to carry on doing what we’re doing and home schooling the children. In my mind it’s absolutely crazy that people are returning to normal. We are safe in our bubble, we feel protected where we are.”
The one support the family has had throughout is from their Rainbow Trust Family Support Worker, Carly, who’s provided video calls with Tallulah and Esme to chat to them and provide fun activities as well as visit them from a safe distance in the garden to give them something to look forward to. Carly has also driven Tara and Asher to a hospital appointment to help make the trip less stressful.
Parents of seriously ill children, like Tara, are having to rely on charities to provide urgent practical and emotional support during the pandemic. Rainbow Trust’s report is therefore calling on Matt Hancock, Secretary of State for Health and Social Care, to urgently address the long-standing gap in funding for this vital support to benefit families at a time of great anxiety when they need it more than ever.
Zillah Bingley, Rainbow Trust Chief Executive says: “The pandemic continues to be a lonely and distressing experience for many families supported by Rainbow Trust who are caring for a life-threatened child. It is vital that the experiences of these families are heard by decision-makers which our report aims to do, so that they can help shape and improve the services required during this challenging, exhausting and frightening time.”
To read the full report visit rainbowtrust.org.uk/PandemicPressures
