Preparing for assessment at the Great North Children's Hospital

Ward 3 are preparing for your assessment

If you’re reading this, it means your child has been referred for an assessment in Newcastle due to a serious immune condition.

We understand this may be a challenging time, and things might feel a bit uncertain while you wait, but we’re here to support you throughout this journey—from today until you’re back home.

For families dealing with immunodeficiencies, referrals can vary; some are made urgently with blue lights, while others may take weeks. Your healthcare provider will have more specific details about your referral timeline.

Thankfully, paediatric immunology treatments have made significant progress in recent years.

If your child has an immune deficiency, they may require a transplant, which can take some time. You may need to stay with our friends on Ward 3 for a while, but don’t worry—we’re all here to help you.

We are the only charity in the UK and Ireland solely dedicated to supporting a paediatric immunology ward, we are here to guide you through this new journey and help you understand what to expect along the way.

Services now available to you

Liaison Team

tnu-tr.bmt.liaisonteam@nhs.net

0191 282 3636

Play Team

nuth.ward3playteam@nhs.net

Health Psychology

nuth.healthpsychology@nhs.net

Psychology Secretaries

0191 2824081

Citizens Advice

A weekly clinic is held in the hospital

A rough guide to assessments

Most patients will be asked to come to Newcastle for a transplant assessment. The purpose of the assessment is for you to meet the transplant team and for the team to have a chance to meet you and your child.

Assessments last 2-3 days. Keep all receipts as you may be able to get reimbursed by Healthcare Travel Costs Scheme (HTCS) or external services such as Wales Latch charity.

Wales latch is for cancer / leukaemia Welsh patients under care Paediatric Oncology and Haematology Unit at the Children’s Hospital for Wales so I’m not sure they do help I think we are a bit weak here about help, Ive been googling without much success.

On your first day you will get your appointment sheet which tells you exactly who you will see. You will usually be seen by at least three consultants, and they will ask all about your child’s medical history and family background. You will find that you will repeat this history a number of times, (this is normal and not because the consultants do not know about your child, it is to ensure that everybody fully understands you and your child!). You will also see several other members of our team,

Please remember not all children will follow the same assessment process. A child’s journey to transplant is always individual to them and their circumstances, so don’t worry if yours isn’t exact to what we’ve written here.

here’s a list of who you may see:

You are not alone. There’s a whole community!

Having a child with an immunodeficiency can feel incredibly isolating, so we have facilitated a community of families who have been through journeys like yours.

You can join the private Bubble Buddies Facebook group to see messages of support, photo updates from other families, tips about Newcastle and, if you’re ready, introduce yourself and ask any questions you may have. Please remember to agree to the rules and answer the mandatory questions so we can grant you access.

We’d love to see you there!

How to get to your assessment

Finding Accommodation

You may need to stay in Newcastle overnight for the assessment. After speaking to many of our previous families, they told us about the hotels which have been respectful of the nature of your visits. Some do reasonable rates; some offer free laundry services.

Help with your mental health & finances

Mental health

Restoring a child’s immune system can be a long journey with many ups and downs, which can take a toll on your mental health. Here, you’ll find links to the mental health support.

Financial support

It can be costly visiting Newcastle for an assessment. We have gathered details of the funders known to us so you can approach them for some financial help, remember to keep your receipts (there’s a pocket in the back of your booklet!).