Transition to adult services

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

Extra responsibilities

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.

Transition clinics

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.

Remember:
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). 

Web resources

Transition information

From CF Trust:

• Transition for young people
• Transition for parents

Building independence

From CF Trust:

• Financial help for people living with CF
• Support from the CF Trust
• Higher education
• Travel and melioidosis
• Housing
• School

From the government:

• Student finance

CF Care

From CF Trust:

• Nutrition 
• Physiotherapy - airway clearance
• Prescription charges
• Home IVs
• Urinary incontinence 

Personal relationships and adult issues

From CF Trust:

• CF and body image
• CF and relationships
• Sexual health and fertility 

From Talk to Frank:

• Drugs 

From Drink Aware:

• Alcohol 

Careers advice

• Prince’s Trust
• Connexions
• Chelsea Community Hospital School

Admission to hospital

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. 

Adult services

When you go to 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. Appropriate facilities are nearby to your bay. 

There is WiFi available on the ward and a room where you can watch TV and eat your meals.

Are you still at school?

If you are still in education the hospital school can support you throughout your admission.

Visiting Paul Wood ward

If you would like to visit Paul Wood ward, ask your transition nurse who will be able to facilitate this for you. 

Regular check-ups and university

Regular check-ups are the most important way of looking after your heart condition, so we need to know if you change your address or go away to university. This will allow us to arrange your follow up appointments appropriately.

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.

After your 16th birthday, all correspondence about your hospital appointments will be addressed to you. A parent/carer will only be able to make, cancel or change appointments on your behalf if you give them permission to do so.

Transition days

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

The Your care, Your Future event invites young heart patients with a learning disability to Royal Brompton Hospital. The event aims to bring teenagers with CHD together. It encourages 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. 

You can read more about the event here.

Rhythmic Beats

Rhythmic Beats is an annual patient information event. It includes 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. 

Educational information and additional support

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
• BHF transition information video
• Congential heart disease transition clinic: helping you move from children's services to adult services (PDF, 374KB)
• Little Hearts Matters 
• The Max Appeal
• The Downs Syndrome Association 
• Certitude learning disability and mental health support 
• Young Minds
• Mencap 
• Changing Faces

Contact us

Congenital heart disease transition team:

• Alice Ciovina - lead nurse
• Loredana Haidu - clinical nurse specialist
• Danielle Poole- clinical nurse specialist
• Michelle Lambell - clinical nurse specialist
• Elena Karagodova - clinical nurse specialist

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: transitionchd@rbht.nhs.uk