Supporting young patients with sickle cell disease
Support for young patients with sickle cell by helping to make their hospital stays more comfortable and helping them to stay on top of school work.
Kent, England
Valley Hospital Charity used funding from NHS Charities Together to buy equipment such as treatment chairs, spirometers, and Chromebooks.
Sickle cell disease affects around 17,500 people across the UK. It is a painful lifelong condition that can result in long periods of time spent in hospital.
Alero works at Dartford and Gravesham NHS Trust looking after young patients with the condition.
Funding from Valley Hospital Charity has enabled Alero and her team to enhance the care and support they provide.
Alero told us about the difference this has made, and why it's so important. She said:
"Sickle Cell is very rare, and we are seeing growing numbers. When I started this role there were about 20 patients and now, we have over 100. The need for the service is growing.
"We used the funding to buy equipment for a new day-care unit. Initially, these children would come to the blood transfusion unit and would be on the ward taking up bed spaces.
"The funding enabled us to purchase comfortable treatment chairs of different sizes for younger and older children. The benefit of this meant we were able to do more than one blood transfusion a day, which has made a huge difference.
"We also used the funding to purchase Chromebooks. During lockdown, a lot of these children struggled as they were isolated due to their illness, and they couldn’t go to school. When speaking with them in the clinic I realised just how much they were struggling and once again our hospital charity backed us.
"The Chromebooks have been gratefully received and we’ve had amazing feedback from the children and their families.
"We also have an incredible parent lead who is amazing at breaking down the stigma associated with a child having sickle cell disease. Some families don’t register their children as disabled due to a range of cultural reasons, which means they miss out on receiving disability benefits. Our parent lead is great at breaking down these barriers and educating families on what they are entitled to and how to fill out the forms.
"I also go into schools to raise awareness of how this disease impacts a child and their family. Sickle cell is classed as hidden disability. It’s a disease that can’t be cured without complications but for me, as a nurse, if I can make you smile when you’re in pain then half of my job is done."
Watch the video below to learn more.
