A Swindon mum, with a vulnerable young son spoke about the pressures on families caring for children with a life-threatening condition during the pandemic.

Mehwish Shoaib looked after her nine-year-old Hassan, who has severe epilepsy, as well as her 13-year-old and three-year-old daughters.

Hassan cannot be left alone at any point as his seizures could be fatal, but caring for him became more difficult when coronavirus hit the UK.

His NHS-funded weekend carers could not visit and the family relied on support from the Rainbow Trust charity as well as occasional phone calls from Hassan's school, medical team and social worker.

The pandemic caused a five-month delay to the first appointment for much-needed treatment that would help Hassan bear his own weight.

Mehwish said, “Hassan can crawl and he can pull himself up but it could be life-changing for him to stand up and put weight on his feet.”

The family's Rainbow Trust support worker Sarah Armstrong provided emotional and practical support by having video calls, collecting medicines, and delivering parcels full of activities, puzzles and toys for Mehwish’s youngest child Zainab.

Mehwish says the deliveries have been the highlight of Zainab’s day.

She added: “I really value Sarah’s help. It is so helpful to have someone who can listen to me, give me a break and support the whole family. I don’t know what I would have done without her.

“When you have a child with special needs, or a seriously ill child, it changes the whole perception of your life. It affects the whole family, siblings as well.

“I feel really anxious about going out. I feel very cautious as I know the significant risk to Hassan if he catches the virus as he is clinically vulnerable.

"And if either my husband or I were to catch it I would be worried about who would look after Hassan and his sisters.”

When the first lockdown lifted, Sarah gave the worried mum a break by spending time with Zainab, taking her out on trips, playing with her at home and picking her up from nursery. When Hassan is off school after his foot operation, Sarah is planning to take Zainab out for walks and nature scavenger hunts while wearing her PPE.

Mehwish is a case study in a new report from the Rainbow Trust Children's Charity called Pandemic Pressures which focuses on the stress and anxiety parents faced this year as they worried about their child's health while a deadly infection spread.

At the start of the first lockdown, Rainbow Trust conducted a survey of families it was supporting.

Just under 80 per cent of respondents said that their family situation was worse or much worse than before.

Nearly 60 per cent 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 have been particularly difficult for families where a baby or child has an acutely life-threatening condition. It highlights how parents and siblings bereaved during the pandemic have not been able to grieve as they would have wanted.

Parents of seriously ill children are having to rely on charities to provide urgent practical and emotional support during the pandemic.

The Rainbow Trust’s report is calling on health secretary Matt Hancock to urgently address a gap in funding for this support to benefit families at a time of great anxiety when they need it more than ever.

Chief executive Zillah Bingley said: “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