Helping patients with blood disorders

Did you know that Ocean Unit at Bristol Children’s Hospital cares for children who have a bleeding condition as well as children battling cancer?

In fact, Bristol Children’s Hospital cares for around 250 young patients who have a blood disorder such as Sickle Cell Disease, Haemophilia or Thalassemia. Treatments for blood disorders can vary, depending on the condition and severity, but they usually require lifelong treatment and regular trips to the hospital.

With Bristol Children’s Hospital home to the Bristol Haemophilia Centre and the Sickle Cell and Thalassemia service, children from across the South West will come to Bristol for the specialist care they need.

Having one of these conditions can be challenging. That’s where Hayley comes in. Hayley joined Bristol Children’s Hospital in November 2020 as a Benign Haematology Family Support Worker on Ocean Unit. We sat down with Hayley to hear about the difference she makes.

“As a Benign Haematology Family Support Worker, I work with families whose child has been diagnosed with a certain blood disorder. I’m here to help them overcome any challenges they may face.

“The support I offer varies from family to family. We can be talking about their child’s health one day or money matters the next.

“The pandemic has had an undeniable impact as well. Unfortunately, some families have lost their jobs. Others are unable to find employment due to their own health needs or the needs of the children. Travelling to and from Bristol for their child’s care comes at a cost too – it all mounts up. I will spend lots of time completing application forms and informing families about the financial support they can access.

“Parents or carers also need support in seeking services and activities that are suitable for their child because living with a blood condition can be difficult. Their child might not be able to take part in sport for fear of severe bleeding or pain.

“Sometimes families just need someone to offer a listening ear at the end of the phone.

“Trying to develop a new role during a pandemic has had its challenges. My aim is to organise meetings between families so they can create support networks between themselves. Obviously, with restrictions in place, this unable to happen. This hasn’t stopped us though! We’ve gone virtual and are setting up meetings via Zoom imminently.

“No one should ever feel alone. Families can lean on me whenever they need and through creating this community they’ll begin to realise there are other people out there who share similar experiences.

“Education is also key. I want families to leave feeling informed. Particularly, as one day our young patients will have to manage their condition by themselves as an adult.

“The best bit about my job is working with so many great people who all have one aim: to give our patients all the tools they need to thrive in life.”

Hayley is just one of the extraordinary staff who we are proud to work alongside at Bristol Children’s Hospital.

As the dedicated Bristol Children’s Hospital Charity, it’s our mission to make the hospital the very best it can be. Knowing what a difference it would make to the nearly 400 patients cared for by Hayley and the Ocean Unit team each year, we want to transform the unit into a comforting, modern space, decorated with eye-catching, sea-themed artwork, complete with updated facilities. Your donation could make this project a reality.