Inflammatory Bowel Disease

Consultants

Professor David Wilson Dr Paul Henderson Professor Richard Russell Dr Peter Gillett

Nurse Specialists

Kat Armstrong Rhona Shepherd

Dieticians

Gillian Bremner Heather Grant

Department Co-ordinator

Lee Duff

Secretary

Monday-Friday, 9am-4pm: 0131 312 0431. For general enquiries and questions before appointments. Our team works together to give support and treatment to patients and their families.

Helpline 0131 312 0470 - This is an answerphone-only service. We offer a helpline service for families already in our care. If you have any questions or are worried about your child’s condition, please get in touch. Leave a clear message with a contact phone number and short summary of what is worrying you. We will listen to these messages and aim to return all calls within 48-72 hours (or sooner for priority cases). If we need to see a child at short notice, we will call back to arrange this.

What to tell us

If you are calling to tell us about a change in symptoms, we will ask some questions so it is good to have this information ready before you call the helpline:

• We always ask about you or your child’s stooling habit (how they go to the toilet for a poo)
• How many times a day are they pooing
• Do they wake up in the night to poo?
• What does it look like? E.g. is it solid or runny? What colour?
• Is there any blood in the poo?
• Are they experiencing any pain?
• How long have these symptoms been going on?
• Has anyone been unwell in the family?
• What medication are you or your child taking?

The answers to these questions guide our advice so it is very important that you know what’s happening and give us much accurate detail as you can.

We like to see our patients in clinic regularly, usually at the RHCYP in Edinburgh. Coming to an Outpatient clinic means that you won’t be staying overnight – you are given an appointment time and date, with instructions about where to come. If a child or young person becomes unwell in between clinic appointments, arrangements can made to review them or we may suggest that they attend A&E (if they are very unwell). Families should call the helpline number on 0131 312 0470 and will be called back with information about what to do next.

Being asked to bring a sample

If the team asks you to bring a stool sample with you, or to submit samples for testing, here are the steps to follow:

• Obtain 3 stool (poo) sample pots (blue lidded sample pots) either from your GP or the hospital. We can advise you on where to come in the hospital to collect some if you need them.
• We need 3 separate samples to test but they can be from the same stool. Why do we need three? One to test for bacterial infection. One to test for viruses. One to test for signs of inflammation.

If you have been asked to return your samples to your family doctor (also called a GP), the nurse specialist team will e-mail them to let them know.

Taking medicine

It is likely that children and young people with IBD will need to take medicine regularly. The team will discuss these with you. If you are given a prescription for these medications from the RHCYP, the pharmacy department will only give you a short supply. The pharmacy dispensary is in the main building of the Royal Infirmary of Edinburgh (RIE). There are signs to help you find it. Make sure that you take a copy of the prescription to your GP to get the medicine on a repeat prescription.

Sometimes we need to ask you to take regular blood tests. These can either be done at the RHCYP or (if possible) arranged through your GP. Sometimes GP practices are not set up to take blood samples from younger people so we ask you to check with them first before your appointment. If you are going to your GP for a blood test, the nurse specialist team will let them know which tests are needed. We also ask you to call the IBD helpline once the blood test has taken place, so that we can review the results. If you are coming for a blood test appointment at the RHCYP, please call the IBD helpline on 0131 312 0470 and let us know when you are attending. This means that we can speed up your time in hospital by getting ready for you in advance and adding to your patient record on the computer. The person taking your blood to get is tested is called a ‘Phlebotomist’. Watch a video about what happens when you come for a blood test.

Dirleton Ward (also known as the Planned Investigations Unit, or Medical Daycare) is where many children and families might come for appointments, tests or reviews. Dirleton Ward is a day ward, meaning that children and young people visit for a few hours and then return home again on the same day.

Coming to the ward might feel a bit scary, especially for the first time. Everyone is very friendly and will be happy to help you settle in. You can bring things from home, such as a special toy, tablet or phone, or some drinks and snacks (so long as you haven’t been asked to ‘fast’ before you come).

You might have a general review, which is a check-up to see how you are and discuss any changes in your health. This usually includes having your height and weight measured, and sometimes a test like a blood test.

• Infusions – IV medicine over a few hours (infliximab)
• Education – coping with IBD, managing symptoms
• Medicines – e.g. learning to give regular injections
• Sometimes need to be admitted for a longer stay

Kat Armstrong - IBD Nurse Specialist

Our IBD Nurse Specialists are based at the RHCYP. Their role is to provide ongoing support, information and advice to children and young people with IBD, as well as to their families. The Nurse Specialists provide expert clinical management to inpatients and outpatients. They will meet patients when they have a hospital admission, or at a visit to clinic. Nurse Specialists also run the non-urgent telephone helpline service. Helpline 0131 312 0470 - This is an answerphone-only service.

 What can they help with?

• Information and support for children and their families at the time of diagnosis.
• Education about IBD treatment and interventions.
• Advice and information for nursery or school and the development of a care plan (if needed).
• Liaising with educational services.
• Being at outpatient clinics to support families during or after consultations.
• Support and education during hospital admissions.
• Helping young people during the transition to adult services.
• Liaising with other health or social care providers, e.g. Community Children’s Nurses, Health Visitors, Social Work, Dieticians, Physiotherapists, Occupational Therapists, Family Support, Money Advice Services, Clinical Psychology.
• Nurse Specialist-led outpatient clinics.
• Family support meetings.

Psychological support: PPALS

The Paediatric Psychology and Liaison Service (PPALS) is a specialist team that includes clinical psychologists, psychological practitioners, neuropsychologists, psychiatrists, creative arts therapists and a nurse therapist, all of whom are specially-trained to work with children and young people. We use psychological approaches to promote health, wellbeing and development.

Help & support

• SMS Connect
• Crohns & Colitis UK
• Cicra
• Catherine McEwan Foundation
• Just Can’t Wait toilet scheme

Support for parents

A parent-led support group can be found on Facebook, for parents & carers to find help and support from each other.

Transition means handing your care over to doctors and nurses in adult services. This is a really important step in your journey that is important to get right for you. This transition process should be a smooth informative process that involves you and your family. Talking about transition to adult services starts around the time of your 16th Birthday. Transition is a planned, step-by-step process which can vary slightly depending on where you live:

Edinburgh

Your care will move to the Western General Hospital (WGH). Your first transition clinic will be at the RHCYP in early spring of the year you turn 16. The second is held at the WGH in autumn and this is where your care is handed over to the adult team.

Wider Lothian area, Borders & Fife

There will be a single transition clinic at your local hospital. We have transition clinics at Borders General Hospital, St. John’s Hospital, and Victoria Hospital, Kirkcaldy in August each year. On occasion, patients who don’t live in Edinburgh are transitioned to Edinburgh adult services at WGH. At a transition clinic, both the paediatric and adult IBD teams will meet with you at the same time. This will give you an opportunity to meet the adult team who will be looking after you, and to ensure that all information about your care is handed over in a structured, patient-focussed way. Moving your care to adult services can feel different for many young people and their families – you can always ask your nurses any questions along the way.