Long Term Follow-up

When you attend clinic you will meet members of the Late Effects team. This may include doctors and nurses either from Birmingham Children’s Hospital or University Hospital Birmingham and the health and well-being coordinator.

You will be allocated a key worker who will be your point of contact if you have any queries and who will help coordinate your care.

Nurse Led Follow Up

You may attend a clinic that is run by an Advanced Nurse Practitioner who is specially trained in monitoring for the late effects of treatment.

Consultant Led Follow Up

You may attend a clinic and see a doctor or a combination of the doctor and the Advanced Nurse Practitioner or other members of the Late Effects Team.

Postal Follow Up

If your follow-up team decides that you don’t need to come to clinic for regular check-ups anymore, we would still like to keep in touch. We can, with your agreement, transfer you onto postal follow-up. Further information about postal follow up can be found in a separate leaflet which will be given to you if it is appropriate.

The long-term follow-up team will:

• Give you a detailed summary of your diagnosis and the treatment you received.
• Help you to understand; your treatment, the potential problems that might occur in the future and what to expect during your follow-up care.
• Encourage you to be more independent and begin to make your own decisions about your health.
• Give you advice about how to keep healthy.

Like most young people, you will probably start to think about the future and may want to ask questions such as:

• Why do I have to keep coming back?
• What are the medical tests for?
• How long will my follow-up be for?

When you attend the clinic you will be given a questionnaire to fill out in the waiting area. This is called the Holistic Needs Assessment and includes aspects of physical and psychological health. The aim is to highlight any concerns you have. We will also ask you about your lifestyle e.g. diet and exercise. We will also offer support if you would like to make any changes.

What is Transition?

We want to encourage you to become as independent with your healthcare as you can be. We think that once you have started secondary school this is a good time to start thinking about some of the skills you will need to manage your future health. 

We recognise that it is important to have time to learn and practise new skills and gradually take on more responsibility. Your key worker for Long Term Follow Up and the Macmillan Health and Well-Being coordinator is here to support you.

We will give you a questionnaire asking how you feel about transition and what help and support you need before you move to adult services.

You may notice that we will talk more directly to you. When you feel ready and confident, we will encourage you to go into your consultation on your own. This is to encourage your independence and allow you to discuss any concerns you have. You may feel nervous at first about the change, but we are here to help prepare you and make it easier with the move to adult care.

Anything you discuss is confidential. This means that what you say will only be discussed with your parents/carers if you want it to be.

We are mindful that your parents/carers have supported you for many years whilst coming back to Birmingham Children’s Hospital for check-ups, so it is important to us that they still feel involved. There will always be an opportunity for your parents/carers to discuss any issues that are important to them.

We hope that your parents/carers will be involved in the transition process.

They can help by:

Talking to you to help you understand your previous condition and the treatment you received.

Explain the reasons for you coming to the follow-up clinic.

Encouraging you to ask questions and talk directly to the follow-up team in the clinic.

Your care will be transferred to the Late Effects Clinic which is held at the Queen Elizabeth Hospital Birmingham, part of the University Hospital Birmingham NHS Foundation Trust.

The address is: Queen Elizabeth Hospital Birmingham, Mindelsohn Way, Edgbaston, Birmingham B15 2GW

Contact details for UHB Long term Follow-up team

Telephone: 0121 371 6950

Email: EndocrineNursesQEHB@uhb.nhs.uk

How to get there

Hopefully you will have met, and may even know very well, the doctors and clinical nurse specialist you will see at the University Hospital Birmingham, as many of the team members attend this clinic at both hospitals.

The main difference between your visit to the Children’s Hospital and the adult hospital is that you, rather than your parents/carers, are in charge of your health.

You will be encouraged to see the doctor on your own, without your parents, for all or at least part of the visit. Hopefully you will have been prepared for this change when you were seen in the Transition Clinic at the Children’s Hospital.

You will also have a new set of notes. Your Children’s Hospital notes are not transferred – but don’t worry, the doctors will have all the information they need about your cancer and a treatment summary.

You may find that you are able to have more virtual or telephone consultations rather than face to face consultations and you can negotiate this with the team.

We hope your first visit to the Long Term Follow-up clinic will be successful.