We invited Maureen Muteesa to share her story and why she is asking people to sign her open letter to the Chancellor asking for more support for disabled children and their families.
By Maureen Muteesa
"I have two children, Belinda, 22, and Calvin, 15. Calvin was born with complex medical needs relating to vacterl syndrome. He has a repaired heart which has been operated on at least three times, he’s had a full bowel reconstruction, he has serious renal problems, and he feeds through a tube – just to name a few of the issues he faces.
Disabled children, young people, and their families have been left in lockdown during the pandemic. Not only during the pandemic but also for so many years, families like mine have been forgotten. Now, as society has focused on pubs reopening and holidays abroad, they’ve ignored the cuts to vital services that families like mine rely on to manage conditions and maintain some sort of quality of life. They’ve ignored our pain. They’ve ignored our lives.
As the pandemic raged around us, we saw our support – which was already so stretched – cut. Although the government says that schools were open for children with disabilities, this simply wasn’t true for all families. Calvin relies on regular physiotherapy from school to manage his condition. Unable to access it, his muscles have weakened, he can no longer stand for long and has had to be taken to A&E when he’s fallen. Those precious moments of him walking in our home meant so much to me, but now they’ve been taken away. He is now going to undergo an operation to try to help save his muscles, which is scary given his history of risk from general anaesthetic.
This is just one example. The Disabled Children’s Partnership (DCP) – a coalition of over 90 charities that campaigns with families like mine – has been regularly surveying and interviewing hundreds of parents throughout the pandemic as part of its #LeftInLockdown campaign.
The results are shocking. Their latest survey revealed that over 70% of disabled children are still unable to access pre-pandemic levels of therapies and health services. With this vital support vanishing, nearly three quarters of disabled children have seen progress managing their conditions – and their overall development – regress due to the pandemic.
And that’s just the physical health impacts. The isolation and mental health crisis affecting parent carers and disabled children is a scandal. I’ve felt tortured. Isolated. Depressed. Forgotten. With access to barely any respite care, I’ve had to struggle through providing 24-hour care to Calvin without help. Caring for Calvin is constant, hard work. He requires constant 24-hour care throughout the day, including respiratory physio, catheterisation, emptying the Mitrofanoff every 2 hours, administering various medications regularly. While the rest of the country squabbled over an hour of outdoor exercise, I struggled just to breathe.
Families up and down the country are feeling the stinging bite of this isolation. Research from the DCP shows that – despite lockdown easing and society returning partially ‘to normal’ – 9 in 10 disabled children and 6 in 10 parent carers are socially isolated. The connection between isolation and long-term mental health problems is well-known, and can lead to the development of conditions like Post-Traumatic Stress Disorder (PTSD).
But the worst thing is that these problems aren’t anything new. I’ve had to fight for over 10 years to get Calvin and I the support we need, but it’s never been enough. Seven nights of respite a month – quite often reduced to three nights depending on what is happening at the hospice – is painful. With such few breaks, I can’t have a relationship and therefore have remained single. This has impacted on my adult needs. I am more of a carer than a mother to my children, as all I do is work to keep my son alive.
I’m not alone. Surveys from the DCP before the pandemic showed that only 4% of parents said that they had enough support to care for their child safely. This isn’t right. Families like mine deserve a better quality of life. Our children are entitled to the same opportunities as any other child regardless of their disability.
This is why I’ve launched a public open letter demanding that Rishi Sunak – the Chancellor of the Exchequer - funds dedicated recovery for families like mine – investing in missed therapies, respite, health services and mental wellbeing support. At the same time he should turn the page, and finally start properly funding disabled children’s health and care.
To make those in power listen, we need as many signatures as possible – so please sign the letter and spread it as far and wide as you can.
Disabled children, young people and families deserve a future free from pain, exhaustion and constant battles. As we recover from the pandemic, now is our chance to make it happen."
Maureen and/or the Disabled Children's Partnership will be coming back onto the thread next week to answer your questions, so get posting below.