At Royal Brompton & Harefield NHS Foundation Trust, we use the term transition to describe the process of planning and preparing for a patient's move from child services (paediatrics) to adult services.
If you are under our care in children's services, your parent(s) or carer(s) may have made most of the decisions about your health and wellbeing for you. As you become a teenager, you'll become more independent and get the chance to make your own health and wellbeing decisions.
This also means your body and your body's needs will start to change, and you will need different care too. Our doctors and nurses are experts in caring for adults with heart and lung conditions, which means they will provide all the care you need as you get older.
The transition clinic
If you've been with us in children's services for a long time, the thought of moving to an adult environment may be worrying and confusing. Our transition clinic is designed to make your gradual move into adult services less scary, and to help you get all the support and information you need before and after the move.
How it works
We will invite you to our transition clinic when you turn 12 or 13 years old. You will have a number of appointments with us so we can tailor our support to suit your needs.
Your transition nurse
At our clinic, you'll meet a transition nurse (a clinical specialist) who is trained to help young people with a heart and/or lung condition. They will support you as you move to adult services. Your transition nurse will:
- explain all about your transition to adult services
- discuss the details of your medical condition with you, including the procedures, care and medication you have had
- help you learn more about your condition and how to become more independent in your decision making.
Your transition nurse will also be happy to talk to you and provide information about other elements that may be affected by your condition. This can include:
- healthy lifestyles and good dental hygiene
- feelings and emotions
- exercise and symptoms to look out for
- school or college or university
- career choices
- sexual health
- travel advice and holiday insurance.
You can also ask your transition nurse any questions you may have, or talk about things that may be bothering you. Support groups for young people are also available, and your transition nurse will be glad to talk to you or assist you with any further information you may need.
We also form a transition plan with you, so you will know exactly what happens next and when it will happen. For the transition plan appointment, you may visit us at the clinic on your own or with your parent(s) or carer(s).
We have regular check-ups with you because it is an important way of looking after your health and wellbeing. If you move or go away to university, please let us know your address details.
As you get older you will become responsible for making and attending your outpatient appointments. It is very important to let us know if you are unable to attend an appointment with us.
For young people with CF, transition is the process of changing from the paediatric clinic to the adult clinic.
Many professionals working in CF teams around the world have been trying to work out the best age for transition and it appears that the ideal time is somewhere between the ages of 14 years and 17 years. Changing to adult care is nothing to worry about. The adult CF team simply offer you a more appropriate service now that you are no longer a child.
Things you have learned so far:
- What it means to have CF
- How and why chest physiotherapy is needed
- The importance of eating a good diet
- Remembering to take enzymes
- Learning the names of all other medication and the reasons for taking them
Things you will learn as a teenager:
- Why you need to have lung function tests, chest X-rays and blood tests
- Why you need to have an annual review
- Why it is good to start talking to the CF team by yourself and to take responsibility for your physio/nebulisers/medicines
Now that you are a teenager and becoming more independent, you have extra things to take responsibility for in relation to your CF. Starting to do these things by yourself now will help you feel more confident and able to deal with everything in the future.
Here are some things for you to think about:
- Keep a list of your medicines and what they are for. Make a note of when you start to run out so that a new prescription can be arranged in time.
- Do your physio without being reminded.
- Make up your nebulisers and remember to do them all the time
- Start seeing the physio, dietitian, clinic nurse and doctor by yourself, and let your parents join you later.
- Call the CF nurse by yourself if you have a question.
- If you have IV antibiotics, start trying to have your IV line put in without sedation - this is not used in the adult clinic, but Emla or cold spray are available.
We know transition can be quite scary to think about. You and your parents have been used to the children’s CF clinic and all the staff that work there. But it's not as scary as you might think.
CF patient, Leah, transitioned from paediatric to adult care when she was 16. In this short film, she introduces two Royal Brompton patients who are going through the same process and hears from specialist nurses about what patients, and their families, can expect when they make the move to adult services.
Leah said: “Although I’ve learnt to deal with my illness well, I found my transition really difficult. I wanted to make this film to help other young people during their transition. Although it was a difficult phase, it had a really positive effect on both mine and my mum’s lives.”
To try and make this move easier for you, we hold four or five pre-transition and transition clinics each year. These are special clinics held just for teenagers.
At each clinic your paediatric CF team members are joined by the adult CF team so that you can get to know them and they can get to know you. You can attend one or two of these clinics before you make the final move over to the adult CF clinic.
These are some of the common questions we are asked about our transition clinics:
- Do the transition and adult CF clinics provide the same sort of CF care that I am used to?
Yes. In fact, all CF clinics in the country provide similar care; there are national guidelines for the management of CF that all centres use.
Our transition and adult CF teams carry out clinic visits similar to the way you are used to and the annual reviews will be similar to the ones you have had before.
- Will they know me at the new clinic?
Our children's and adults' teams work very closely together. But, you will be given a transition form to fill out and the adult team will read it before they meet you. It will help them to get to know you, and we hope you will have met them in a pre-transition clinic. When they see you in the transition clinic they will be able to talk to you about your CF, your plans for the future, your hobbies, and your family.
- Will the clinic have the same staff as I’m used to?
The adult clinic has the same sort of CF team you are used to – doctors, CF nurse specialists, dietitians, physiotherapists, and psychologists.
- Are my mum and dad allowed to come to clinic with me?
Anyone is allowed to come to clinic with you if that is what you and they want. No one will be asked to leave, but you – as an adult – will be asked what you prefer. However, you will be responsible for contacting the adult CF team if you have questions or need advice. The team can only give information about your care to you.
- Will my treatments change?
The doctors will try not to change your treatment until they get to know you and find out what your needs are. However, as you get older you may need some medicines or treatment changed, some medicines or treatment stopped and some medicines or treatment added – all this will be in discussion with you.
- What happens if I leave home?
If you are moving away from home into another area, the CF nurse at the adult clinic will help you find another adult CF centre and will contact them to refer your care.
If you are going to university, the CF nurse will discuss the best options for care with you.
- Is there a cross-infection policy?
Yes. The adult CF centre has a cross-infection policy, which is similar to the paediatric CF clinic where you are given a room for the duration of the visit and the team comes to see you there. In addition the adult CF clinic also divides each clinic by sputum microbiology.
- ‘A’ clinic – for everyone who grows pseudomonas and achromobacter in their sputum
- ‘B’ clinic – for people who do not grow pseudomonas in their sputum
- ‘C’ clinic – for people who grow burkholderia cepacia complex in their sputum
The adult clinic at Royal Brompton is held in the same building as the children’s clinic. Clinics are held on Monday (outpatients east), Tuesday and Friday (outpatients west) afternoons.
- Can I go to clinic somewhere else?
Of course, the choice is yours. You may wish to visit clinics at other hospitals before making your decision. Read more about CF clinics elsewhere.
Paediatric and adult CF services are different. As an adult you are in charge of your care – all decisions about your treatment will be made with you (with help from your parents if that is what you want).
From CF Trust:
From CF Trust:
- Financial help for people living with CF
- Support from the CF Trust
- Higher education
- Travel and melioidosis
From the government:
From CF Trust:
Personal relationships and adult issues
From CF Trust:
From Talk to Frank:
From Drink Aware:
Going to hospital during transition
Up to the age of 15, when you need treatment and tests, you go to Rose Ward (the children’s ward at Royal Brompton Hospital).
When you are about 16 years old, you will go to Paul Wood Ward for treatment and tests. The timing of your move to adult services depends on your needs.
When you go to adult services (Paul Wood ward), you won’t need to explain everything about your condition. The doctors in adult services work closely with the doctors in children’s services, and have expert knowledge of congenital heart disease.
Paul Wood ward is for patients aged over 16. Beds are located in bays and you only share your bay with people who are the same sex as you. There are bathrooms, and toilets for men and women, located near your bay.
You’ll have access to wifi, a computer room, and a room where you can watch TV and eat your meals.
Are you still at school?
We have teachers and a school here at the hospital to help you with your education. If you'd like more information, ask your transition nurse about our hospital school.
Visiting Paul Wood ward
If you would like to visit Paul Wood ward, ask your transition nurse. You can also meet other young people who have moved to adult services during your visit.
Regular check-ups and university
Some patients go away to university. Their congenital heart problems may be simple enough for us to discharge them from regular care, but for others, the main thing is to keep having regular check-ups.
Regular check-ups are the most important way of looking after your health, so we need to know if you change your address or go away to university.
As you get older you will become responsible for making and attending your outpatient appointments. Remember that it is very important to let us know if you are unable to attend an appointment you have booked.
Find out more about congenital heart disease in children.
Transition days (held in London), are a great way of getting more information and meeting other young people with congenital heart disease.
Your care, your future
In June, 2018 the Your care, Your Future event invited young heart patients with a learning disability to Royal Brompton. The event aimed to bring teenagers with CHD together at an adult congenital heart disease service event. It encouraged younger patients to make new friends and hear from inspirational speakers with learning disabilities.
Transitioning from paediatric to adult services can be upsetting for patients, but it is made even harder to understand with the added difficulty of a learning disability. We wanted to try and stop that potential upset by introducing this event, and help them ease into adult services in a way that is more appropriate for them.' (Loredana Haidu, clinical nurse specialist)
The event includes a range of activities supported by a multidisciplinary team of play, and clinical, nurse specialists, consultants and practice educators who are all involved in helping young people prepare for their move to adult services.
The Rhythmic Beats event in 2015 included expert advice about diet, exercise, smoking drugs, alcohol and sexual health from nurses, doctors and other experts. Speak to your transition nurse if you're interested in going to either of these events.
You can get more information about congenital heart disease or lifestyle issues such as contraception, insurance, finance, employment and health (physical and mental) from:
- The Somerville foundation help and advice/ 16-21
- British Heart foundation: heart conditions in young people/ BHF lifestyle information
- Endocarditis/ warning card 19-21
- Congential heart disease transition clinic: helping you move from children's services to adult services (PDF, 490KB)
Congenital heart disease transition team:
- Virginia Castro Meira - lead nurse
- Loredana Haidu - clinical nurse specialist
- Cristiana Silva - clinical nurse specialist
- Ann Marie Johnson - medical secretary.
To find out more about who will look after you, the clinic itself, or if you need to change your appointment, either you or a parent/carer can call the clinic on 0330 128 8772, from Monday to Friday, 9am-5pm. You can also email: firstname.lastname@example.org