Inflammatory Bowel Disease Service for Adolescents

Lisa Whitley, Heather Parker, Rebecca Morrin, Daniel Sequeira, Ana Lisboa, Rachel Wimpory and Eleanor Rebello (surgical) can offer advice in clinic (by appointment), by telephone, email or letter. They can provide you with information leaflets and further information on the inflammatory bowel diseases, drugs and other treatments you may be prescribed.

The IBD nurses have their own clinic to give certain medication and monitor patients on certain treatments.

Jenny Rogers is the IBD CNS assistant and can help with arranging some blood and stool tests.

The IBD CNS team manage the IBD advice line and can be contacted by leaving a message on the answer phone or by email. Please remember to include your full name, date of birth or hospital number and a contact telephone number with the message otherwise they may not be able to get back to you. The advice line is open Monday to Friday 9-5 and is not open at the weekend or on bank holidays. It can take two working days for a response, and this will be done on clinical priority. This is not an emergency service.

Telephone: 020 3447 5120 (voicemail)

Email: uclh.ibdadvice@nhs.net

We have a dietician, who has expertise in IBD. You can ask to see them for advice when you attend the clinic: if possible, she will see you then, otherwise you can make an appointment to come back another time.

Telephone: 020 73447 9289

Email: uclh.dietitiansdept@nhs.net

Jennie Toft is a pharmacist who specialises in IBD. She can help you with regards to any questions about medication and can help arrange and manage some of the IBD medication. She can be contacted via the IBD advice line.

The adolescent ‘IBD Clinics’ are held on Tuesdays 14.00 – 17.00 hr (Lower Ground Floor of the EGA Wing).

After you arrive in clinic and have reported to the receptionist, you will have your weight and height measured by a Health Care Assistant (HCA) and then be asked to take a seat until you are called to see one of the team.

A large number of patients attend the clinic. Usually, all or some of the consultants, one senior registrars (a doctor who will soon be a consultant), a Clinical Nurse Specialist and dietician will be present. It is likely you will have been allocated to a consultant’s list (as per your appointment letter) however we work as a team so you may be seen by any one of the team as all patients are jointly cared for. At the end of the clinic a meeting is held so that any decisions taken on patients can be discussed.

If you are a new patient, the doctor will discuss your symptoms and medical history with you in detail and they may examine you. You may be advised to have one or more of a variety of tests, but they will explain these to you in the appointment.

‘Follow-up’ patients may also require tests – either as part of a scheduled programme of monitoring of their condition – or if the condition relapses or new symptoms arise.

It is important that you are involved at all stages in decisions made about your condition. We like patients to ask questions and we welcome patients telling us if they need extra information or time to help in this process.

Previously your parents/carers may have done a lot of the talking in the clinic appointments. Now is a good time for you to start to ask questions yourself and if you wish to, have some or all the consultation on your own. This is good practice for when you move to adult services.

Blood tests can be taken straight away. Most investigations (endoscopies and scans) will need to be processed before being booked and an appointment will be sent to you. If you have your bloods done at your GP, it is useful to bring a copy of these to your appointment.

If you do have any tests booked it is worth checking that the follow-up appointment is scheduled after these and that this allows enough time for the doctor to receive the result before you see him/her again. If necessary, please contact the outpatient to rebook the appointment (see Contact details section).

Some patients need to come back to the clinic more often than others, but it is important to attend your appointments as requested by the doctors as it is necessary to keep your condition under review. This includes telephone clinics. Even if you feel perfectly well you may need to have your blood checked because of the treatment you are being given.

If you need to rearrange an appointment, please contact the PA’s (the number is available in the Contact details section).

As you get older issues surrounding confidentiality and consent change. As a patient all your care will be confidential, if however, we feel that you (or others) are at risk of harm or are unsafe, we may at times have to break this confidentiality. Once you reach 18 years, we encourage you rather than your parents/carers to liaise directly with us.

You will routinely receive a copy of any letters sent to your GP about you. If there is something in the letter you do not understand please either ask your GP or contact the clinical nurse specialists who will be happy to help. It is important that you keep up to date with any changes in address or GP details.

MyCare is an app which you can download onto your phone via the main UCLH website. This is a patient portal which gives you the ability to view information about your care including appointments, letters and some blood test results. Please do not try to contact us via this app though as we are currently unable to reply to these messages.

We hold a Multidisciplinary Team (MDT) Meeting every Friday morning. During this meeting we can discuss any patient who has had a new test or whose condition has changed with specialist surgeons, radiologists and histopathologists to help ensure the best course of action is advised. Such meetings have been shown to be of benefit to patients.

We work closely with our surgical colleagues as some patients with IBD will need an operation over time. The consultant surgeon for adolescents is Mr Christopher Wood. although you may see one of the other surgeons as well. We run a joint clinic with an IBD consultant and Mr Wood and this is also attended by our specialist surgical CNS Rebecca Morrin.

The hospital policy is for two-week supply of new medications to be given to patients. After this, except in the case of a few less common drugs, you will need to get a repeat prescription from your GP. As it is likely you will have a few prescriptions throughout the course of a year, for those of you on more than one drug who pay for your prescriptions, it is worth thinking about buying a prepayment certificate (PPC) to reduce the cost. You can discuss the PPC with any pharmacist. Once you turn 18 you will have to pay prescription charges even if you are in university.

Pharmacy (Rowlands) is located near the main entrance to UCLH

They are open:

Monday: Friday 9am – 7pm

Saturday: Sunday 9am – 1pm

Telephone number: 0203 447 3081

Relapses (worsening) of your inflammatory bowel disease can be uncomfortable and distressing. If you do become unwell, we will always try to see you quickly in the clinic to find out what is happening and start effective treatment. We suggest that in the first instance, if you think you are experiencing a relapse, you contact our Clinical Nurse Specialists either by telephone (answer phone service) or email, to discuss your condition with them.

You may wish to contact your GP, and of course if you are feeling very unwell ‘out of hours’ this is entirely appropriate, however during weekdays, and if you feel you are experiencing ‘early’ signs of relapse, it is worth contacting the IBD CNS team as they will be able to offer specific advice and arrange for you to be seen sooner in the clinic if needed. Please note that the IBD advice line is not an emergency service so if you are concerned do not hesitate to attend A+E either local to you or here at UCLH. You do not need our permission to attend A+E.

Abdominal X-ray: X-ray of the abdomen (stomach area) which can show any distension (enlargement) of the bowel, abnormal gas patterns and constipation.

Biopsy: removal of a sample of tissue for examination under a microscope. This may be done at the time of an endoscopy (colonoscopy / sigmoidoscopy / gastroscopy). The type and amount of inflammation in the cells is helpful in diagnosis and monitoring of your condition.

Blood tests: A sample of blood is taken from a vein in your arm using a fine needle. The blood is collected into different types of tubes and sent to the laboratory for analysis. It can be a little uncomfortable but is rarely painful. Your condition can cause alterations in the levels of certain cells, proteins, salts, hormones and other properties of your blood, and we use these results to help assess how ‘active’ (bad) your disease is and how well you are responding to treatment. The ‘Phlebotomy’ (blood taking) department is on the first floor of the main hospital building.

To book a blood test please use the following link: Online Appointment Healthcare Platform | Swiftqueue

If you are aged under 16 you will not be able to use this system and will need to go to children’s outpatients which is located on the lower ground floor of the EGA wing (next door to the adolescent clinic)

Please note repeat bloods are not routinely requested so please contact the IBD CNS team before you attend for bloods (unless this has been ordered for you from a clinic appointment)

Chest X-ray: X-ray of the chest to show any abnormalities in the lungs or pleural cavity (membranous covered area around the lungs).

Colonoscopy: a test using a long thin bendy camera to look inside the colon (large bowel). You will need to take some medicines to empty your bowel beforehand. The camera is inserted through the anus (back passage). You will normally be given a general anaesthetic for this and you. A full information leaflet describing the procedure is available from the Endoscopy Unit. The adolescent endoscopy list normally runs on a Tuesday. As you get older you will be switched onto sedation rather than a general anaesthetic.

CT (computed tomography) scan: A CT scanner takes lots of X-ray pictures of your body from different angles and then feeds the pictures into a computer which creates an image of what is inside for the doctors to look at. You will be given a special dye into a vein which makes the blood vessels very bright in the pictures and also adds ‘contrast’ (varying degrees of brightness) to the organs depending on the blood flow in them, which helps make interpretation of the pictures clearer. The X-rays are painless, but the injection of dye can sometimes be a little uncomfortable.

DEXA scan: DEXA stands for 'dual energy x-ray absorptiometry'. It is a test that measures the density of bones. Patients with inflammatory bowel disease can develop thinning of their bones either because of problems absorbing vitamins or as a side effect of treatment. The scan is painless and involves lying still on an X-ray table for 10-15 minutes whilst low energy X-rays are directed at the bones. The healthier (denser) the bones, the harder it is for X-rays to get through.

Endoscopy: a test using a long thin bendy camera to look inside the gut The stomach, duoden colon can be examined in this way.

Gastroscopy: a test using a long thin bendy camera to look inside the stomach. The camera is passed through your mouth and down your throat into the stomach. A local anaesthetic will be sprayed into your throat so that you are able to swallow the tube. You may also be given a general anaesthetic for this. A full information leaflet describing the procedure is available from the Endoscopy Unit.

MRI (magnetic resonance imaging) scan: This type of scan builds up a picture of the inside of the body using magnetism instead of X-rays. You may be asked to drink a liquid to act as a contrast inside your intestines. Sometimes dye is injected into a vein to help produce a different contrast (varying degrees of brightness) of the tissues. The scan is painless (but is very noisy).

SeHCAT scan: This scan looks to see if your intestine absorbs bile (a salt made by the liver) properly. It involves swallowing a capsule containing a synthetic bile salt linked to a radioactive tracer (a very small safe amount) and having an X-ray after 3 hours and again one week later.

Sigmoidoscopy: a test to look inside the left side, lower half of the colon, of which the ‘sigmoid colon’ is a part. A flexible sigmoidoscopy uses a long thin bendy camera. Like the colonoscopy, the tube or camera is inserted through the anus (back passage). For the flexible sigmoidoscopy you will be given a sedative or general anaesthetic. A full information leaflet describing the ‘flexible’ procedure is available from the Endoscopy Unit.

Stool sample: A sample of your stool (faeces) is sent to the laboratory to make sure you do not have an infection and to look for inflammation. The nurse in the clinic will give you everything you need to collect the sample. You will need to have a barcoded sticker printed for this sample to be processed, please go to the outpatients on the 1st floor of UCLH and they can help direct you for this.

Ultrasound scan: Sound waves are used to build up a picture of the inside of the body. A ‘probe’ (large microphone) is rubbed across the abdomen: sound waves are sent out and bounce back, and these are fed into a computer which creates the picture. The test is painless.

Wireless capsule endoscopy: a large capsule containing a miniature camera is swallowed and hundreds of digital pictures are taken as it passes through the stomach and small intestine. The pictures are downloaded on to a PC and these can sometimes help show inflammation present beyond the reach of a normal endoscope (the long thin bendy camera used for endoscopy or colonoscopy described above).

Up until now you may have been going to a paediatric (children’s) clinic. You may have reached an age where you have outgrown these services and need a period of time to prepare before you move to adult services. This is called transition. In most hospitals you will have to go to adult services at the age of around 16. At UCLH we run a specialist adolescent service for patients with IBD from the age of 13–23. This allows you time to develop and to start to gain some independence and responsibility for your own health. It will also give you time to understand your condition and medication and a chance for you to start making some decisions on your own. 

You may have previously found that in the clinic appointments your parents/carers did more talking that you. These clinics are a good time for you to start asking questions yourself and attend appointments on your own if you feel ready to do this. You may wish to start this by arranging your own appointments or repeat prescriptions. If you have come from another hospital, you may have already had some information and appointments with regards to transition. Our specialist IBD CNS team will see you with regards to transition into adult clinics.

At UCLH we are fortunate to have an adolescent ward (T12) should you ever need to be admitted or attend for certain investigations. This ward is for 13–19-year-olds only. There is also an adolescent day care unit (T11) if you need to attend for infusions up until the age of 20. If you wish to visit T11 or T12 please ask the CNS’s to arrange this for you.

We understand that adolescence can be a stressful time with extra pressures of school, college and exams. If you feel that you are stressed or finding it difficult to cope, please talk to either the doctor you see in clinic or the CNS team as they may be able to refer you for ongoing support from the adolescent psychology service or complimentary therapy team.

We have an active programme of research looking at lots of different aspects of IBD through the hospital. Some may be looking at blood tests and some may be looking at new medications. Most clinical trials for new medications are only for people aged over 18. If you wish to know what research studies are currently being conducted, you can contact the clinical trials nurse Roman Jastrub.

Telephone: 07946 541333

Crohn’s and Colitis UK
Information Line: 0300 222 5700
Live chat available via website

CCUK brings together people of all ages who have Ulcerative Colitis or Crohn’s Disease, their families and the health professionals involved in their care. The organisation provides:

• support through 70 groups, Contact Support Line and individual welfare grants;
• an Information Service by telephone and email and
• a range of Information Sheets on specific topics, including benefits.

For Parents:
CCUK also provide a free and confidential telephone service to parents of children with IBD up to the age of 21.
Tel: 0300 222 5700

UCLH IBD patient panel:
Email: ibdpatientpanel.uclh@gmail.com

Brook Advisory Service (Sexual Health and Wellbeing)

Crohn's in Childhood Research Association (CICRA)
Telephone: 020 8949 6209
Email: support@cicra.org

CORE (formerly known as Digestive Disorders Foundation)
E-mail: info@corecharity.org.uk
Address: 3 St Andrew’s Place, Regents Park, London, NW1 4LB

UCLH

Travel advice for patients with IBD

The new University College Hospital was opened in June 2005 and replaced the facilities previously located at the Middlesex Hospital.

Most of the work of the Department of Gastroenterology is based on the second floor of the Hospital, in the ‘Podium’ where we have a large fully equipped Endoscopy Unit. This is where tests to look inside the stomach or bowel are performed (‘endoscopies’) along with tests to measure how well the gut functions. As well as looking after patients with IBD, the department sees patients with benign and malignant disorders of the oesophagus (‘gullet’), stomach, small intestine and large intestine (colon), the liver and biliary tract, and the pancreas.

Gastroenterologist Consultant: Consultant Physician who specialises in diseases and conditions of the gastrointestinal tract (digestive system / the gut).

Senior Specialist Registrar / Research Fellow / Clinical Fellow / Senior House Officer / House officer: Qualified doctors still in training

Clinical Nurse Specialist: a qualified Nurse who has specialised in the treatment and management of a particular type or group of conditions.

Dietician: Person qualified in nutrition who can advise on healthy diets or specialised diets as necessary.

Histopathologist: Qualified doctor who specialises in the examination of tissues and cells.

Medical student: A student studying medicine (not qualified as a doctor)

Pharmacist: A person trained to prepare and give out medicines and to give information about them.

Radiologist: Qualified doctor who specialises in scanning techniques to ‘image’ (show pictures) of the body to help diagnose and monitor conditions.

Surgeon: A qualified doctor who specialises in surgery (operations) to treat conditions. Can either be in training still or have completed training (consultant surgeon).

• Hospital switchboard: 020 3456 7890
• Secretary to the IBD Service: 020 3447 9126
• IBD Administrator: 0203 447 7480 (Kellie Willmore)

• IBD CNS team
  IBD Clinical Nurse Specialists: 020 3447 5120 (voicemail)

• Outpatient Appointments: 020 3447 9393

• Endoscopy Appointments: 020 3447 3200
• Imaging Appointments: 020 3447 9010
• PALS (Patient Advice and Liaison Service): 020 3447 3002 / 3018

Address: University College Hospital 235 Euston Road NW1 2BU

Switchboard: 0845 155 5000 or 020 3456 7890

Getting to University College Hospital

By bus:

Coming from the south – Bus numbers: 10, 73, 24, 29, 134 (get off at Warren Street Station stop)

Coming from the north – Bus numbers: 10, 24, 29, 73, 134 (get off at 1st stop in Gower Street)

Coming from east or west – Bus numbers: 18, 27, 30, 88, 205 (get off in Euston Road)

By tube:

In-between Warren Street (Northern / Victoria Lines) and Euston Square (Circle / Hammersmith & City / Metropolitan Lines) Underground Stations