This page hopes to provide you with the necessary information before making the move from Great Ormond Street Hospital (GOSH) to the adult transplant unit at Royal Papworth Hospital.
Moving into adult care from paediatric care can also be known as a ‘transition’.
'Transition’ is a term used by the medical profession to describe the way in which your care changes in the hospital setting.
It is a time when you need to understand how your condition affects you, start to take control of the medication you take, and make decisions for yourself regarding your health.
Remember that this process is not going to be easy for your parents/carers or those who have looked after you up to now. Whilst still being supportive, your parents will need to accept less responsibility during the decision-making process.
Prior to your transition, you will be given the opportunity to be seen jointly with both the GOSH and Royal Papworth teams. Both teams will discuss the changeover with you and your parents, and answer any questions you have.
You will also have the opportunity to visit Royal Papworth and the Transplant Continuing Care Unit (TCCU) informally before you move from GOSH - you can arrange this by contacting TCCU on 01223 638007.
When you have decided that you would like to be transferred to Royal Papworth, the hospital will receive a full record of your previous operations and visits from GOSH, which will become part of your new notes.
When Royal Papworth receives a formal referral letter about you, the consultant in charge will look at all the information included within the referral documents. If any further information is needed, GOSH will be asked to send it through prior to your visit.
The TCCU team will then arrange for the Royal Papworth medical and nurses notes to be made up.
Your initial appointment will be sent out by TCCU, including details on how to find the Transplant Unit. If the appointment is unsuitable, please feel free to get in contact and we will find a more suitable date.
Your outpatient visits to Royal Papworth will not be dissimilar those at GOSH, and although though you are now attending an adult centre, your parents (if you wish) can continue to accompany you during your consultant visits.
However, many patients choose not to; as an adult, doctors are not legally allowed to discuss your care with anybody - not even your parents - without your permission.
Outpatient clinics are carried out in TCCU and are held on Monday, Tuesday, Wednesday and Thursday mornings. On the morning of your clinic visit you should arrive by 08:00. On arrival, you will be greeted by one of the outpatient administrators.
The following tests are carried out during your clinic visit:
Nursing assessment
You will have your blood pressure and weight taken by the named nurse within the clinic you are attending.
The clinic nurse will also talk through your medication with you and any other issues you may wish to discuss, such as health promotion and lifestyle.
Blood test
It is important that you do not take your Tacrolimus, Neoral or Sirolimus until after your blood test.
ECG (electrocardiogram)
An ECG is a simple test used to check your heart's rhythm and electrical activity.
Chest X-ray
An X-ray is used to produce images of the inside of the body.
Echo (echocardiogram)
An echo is a scan used to look at the heart and nearby blood vessels. These are usually carried out yearly if you have had a heart transplant.
Lung Function
(If you have had lung transplantation)
Following all of your tests, you will be seen by the consultant and the transplant nurse where you will be given the opportunity to ask questions.
The frequency of your appointments is usually every four to six months if you are well after two to three years post transplant. However, this is assessed on an individual basis and some people may need to be seen more frequently. If you do not attend your appointment, you will be contacted by one of the transplant nurses or clinic co-ordinators.
Following your clinic visits, your GP will receive a copy of your clinic letter; please ask one of the clinic co-ordinators if you would also like to receive a copy for yourself.
Blood test results
The transplant nurse will call you with any changes to your medication - this usually occurs the following day. It is important to note that we do not phone you if there are no changes to be made.
Occasionally, we may ask you to get your bloods checked inbetween clinic visits. If this is the case, we will phone you and then send out the appropriate letter and form for you to take to your GP or practice nurse.
Heart transplant recipients
Coronary angiograms on heart transplant patients are only carried out at two and five years. Thereafter, it is repeated at five yearly intervals unless you present with any symptoms. This is generally carried out as a day case admission and you will be at the hospital for about six to eight hours.
The other difference is that at the adult centre, angiograms are performed under local rather than general anaesthetic; in some patients, we perform CT scans rather than angiograms. If you require endomyocardial biopsies (which are only performed if clinically necessary due to concerns over rejection), they are again generally carried out under local anaesthetic.
Lung transplant recipients
You will be seen at regular intervals, and annual reviews do not involve a bronchoscopy or biopsy unless indicated. However, it is important that lung transplant recipients have a bone scan every two years, and CT scans may be requested as part of this review process. Bronchoscopies and transbronchial biopsies are carried out with intravenous sedation and you will be requested to stay overnight.
If you require an inpatient appointment, you will be admitted onto Floor 4 or Floor 5. During your inpatient stay you will be expected to self-medicate.
Both ward areas are mixed sex and age, but consist of single en-suite rooms.
Accommodation is not available for parents, partners or friends. However, there are a number of accomodation in Cambridge.
24-hour help line
The TCCU runs a telephone help line staffed by the transplant nurses, which is open from 08:00-17:00, Monday-Friday.
There is always a transplant doctor on-call out of hours to answer any questions or concerns you may have; the on-call transplant doctor has 24 hour access to your medical notes and also to the consultant in charge of your care.
You can contact this doctor via the main hospital switchboard on 01223 638000.
This help line is accessible to all; parents can call and speak with one of the transplant nurses or the on-call doctor (out of hours).
It should be noted that as you are now at an adult centre, no confidential information would be divulged unless you have requested us to do so. Wherever possible, we encourage you to make contact yourself, with your parents’ knowledge and support.
Moving away from home
If you are moving away from home to college or university, it is important to register with the resident GP. If you have problems getting your medication from your resident GP, you can telephone TCCU and we will send your prescription in the post. Please make sure you have two weeks’ supply of your medication at all times.
The Transplant Times
Here at Royal Papworth Hospital, we have a patient newsletter sent out twice yearly; all patients receive a copy of this and you are welcome to contribute to its content.
Please contact the database manager through the hospital switchboard on extension 638330.
The Transplant games
Would you like to join the Royal Papworth Transplant team? Y
ou really don’t have to be sporty to take part; it is good fun and helps to promote awareness of the desperate need for more donors.
If you are interested and would like more information, please contact our team manager Margaret Gambrill at royalpapworthtransplantsport@gmail.com.
Main hospital switchboard: 01223 638000.
Transplant Continuing Care Unit: 01223 638007.
TCCU email: papworth.transplant.continuingcare@nhs.net
Further information regarding the transplant unit can be found on the Royal Papworth Hospital NHS Trust web site at https://royalpapworth.nhs.uk/.
The preferred method of contact is by telephone; all calls will be returned on the same day if possible.
Author ID: Rebecca Mullen
Department: TCCU
Reprinted: October 2021
Review due: October 2023
Version: 6
Leaflet number: PI 40