Paediatric haematology

If your child is unwell, bring them to your nearest emergency department for assessment and treatment. 

If an admission is required, they will be admitted to one of the paediatric wards.  

Sleeping accommodation is provided for one parent/carer at your child’s bedside. We also have kitchen and dining facilities for resident parents in all the ward areas. More information can be found on our preparing for your visit page.

We have play specialists and teachers assigned to each ward. A play specialist will help support your child before and after treatment and will also provide games and other activities during their stay. 

The hospital teachers will ensure that your child doesn’t fall behind in their schoolwork if they are in hospital for a long time. It may be necessary to contact your child’s school for information. 

Living with a long-term haematological condition, like sickle cell or thalassemia, can be challenging. At times, you may feel overwhelmed and need a little extra help to cope with your emotions. If this is the case, it might be helpful to think with the medical team about options for psychological support. 

In the paediatric haematology service, we have a small psychology provision which children and young people under our team can access. Common reasons for being referred for this specialist support include: 

• If someone is struggling with difficult thoughts or feelings related to their health (e.g. worry, sadness or anger). 
• If difficult thoughts/feelings are making it hard for someone to follow their treatment plan.  
• If someone is finding it difficult to cope with the impact of their health condition on their life (e.g. at home, at school or in their relationships). 

We can also support by helping the people around you to better understand your physical and mental health, such as teachers at your school, social workers, mentors etc.  

If you are experiencing some of these challenges, please discuss these concerns with your clinical nurse specialist (CNS) or doctor if you would like to access psychological support. They can then make a referral for you. In some cases, the challenges you are having may be best supported by a different service. If this is the case, the team will think with you about how to access the right help. 

Transition is the journey of getting ready to move from children’s services to adult services. It starts around age 12-13 and gives you time to prepare. 

Transfer of care means the exact moment when you move from one service to another, such as from a children’s hospital to an adult clinic. 

Think of transition as the road and transfer of care as the crossing point. 

Why It happens 

When you turn 16, you are no longer seen as a child in hospital. Adult services are better for your needs as you grow older. Most hospitals transfer care after age 16 or after GCSE exams. Before you move, you may visit the new hospital or department to get used to it. 

Transition questionnaires 

During transition you may be asked to fill in a questionnaire. This is not a test. It helps your team understand what you know and what you can do. You can expect questions about your condition, your medicines, and how confident you feel. The answers show where you may need more support. This helps make your move to adult services safe and smooth. 

Workshops and support 

You can join workshops to learn more about your condition, healthy living, resilience, money, and mental health.

You can also join the sickle cell society peer mentoring programme for 1 to 1 support from peer mentors who have sickle cell themselves. 

You can listen to Agnes experience of moving to adult care.  

If you have any questions regarding your transition to adult services, you can speak with your community or acute nurse directly. 

General resources:  

• Renaissance Foundation
• Over the wall camp 

Haemoglobinopathy resources:  

• Haemoglobinopathy Co-ordinating Centre for more information about Haemoglobinopathies, events and patient services.  
• Join the sickle cell society peer mentoring programme for 1 to 1 support from peer mentors who have sickle cell themselves. 
• UK thalassaemia society
• Cianna's smile
• Sickle cell society

Idiopathic Thrombocytopenic Purpura (ITP) resources: 

• ITP Support Association

Others resources:

• Aplastic Anaemia Trust
• Congenital Anaemia Network