Cystic fibrosis info booklet

Welcome to

BEAUMONT

Information for

PEOPLE WITH CYSTIC FIBROSIS

CYSTIC FIBROSIS UNIT Beaumont Hospital, Beaumont Road, Dublin 9.

Tel: 01-7974851. Fax: 01-7974868.

CHANGES AHEAD

Mission Statement We aim to provide the highest standard of medical care to our patients in accordance with international guidelines.

We continue to pursue the development of both inpatient and outpatient facilities that are comparable to the facilities provided by the leading centres in the world.

The aim of the above is both to increase survival and improve the quality of life of our patients.

INFORMATION FOR PEOPLE WITH CYSTIC FIBR OSIS

C

contents SECTION 1

4

Transition to Adult Care SECTION 2

8

The CF Team SECTION 3

12

The CF Unit and Clinics SECTION 4

14

Information for Parents SECTION 5

15

Contact Details and Directions

INFORMATION FOR PEOPLE WITH CYSTIC FIBR OSIS

Transition to Adult Care What is transition? ◆

Transition is a gradual process of moving from a children’s hospital or CF centre to adult CF care.

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Transition to adult care means that you will have more control over your own CF care.

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The aim is that you, the person with CF, will eventually be a partner in your care, and work with your CF team to achieve the best possible outcome in relation to your health.

“For me, everything changed when going from paediatrics to an adult ward. I was started on a lot of new medication, completely new staff, and the other type of patients around me, everything even sounded and smelt different. I didn’t like it to be honest.

My first clinic was fine bar the fact I got completely lost and spent ages wandering around Dublin trying to find my way out to Beaumont and then wandering around the hospital trying to find the clinic.

The main improvement had to be the way the staff treated me, not like a kid back in paediatrics, but as an adult. I felt much more involved and more informed. After my second admission for IVs, I felt much more comfortable and felt I’d adjusted to an adult service”.

A patient with cystic fibrosis perspective INFORMATION FOR PEOPLE WITH CYSTIC FIBR OSIS

Why is the process of transition important in CF? ◆

Transition can be a strange (and even scary) time for a lot of young people; there are quite a few changes to manage in moving to an adult hospital.

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A good experience of transition can help you develop confidence and help you to communicate more easily about your CF.

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Managing well through the transition also has very real benefits; the research shows that people with CF who manage well through transition can have better health later on.

INFORMATION FOR PEOPLE WITH CYSTIC FIBR OSIS

How does the Transition occur? ◆

The CF team at your children’s hospital will discuss the transition process with you. They will also talk with you about the possible centres to which you can transfer for adult care.

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When you are ready to transfer, a referral letter will be sent to the adult hospital.

Referral Letter

The adult hospital will then send you an outpatient appointment.

How do I make the move to Beaumont?

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If you are thinking about moving to Beaumont, your CF team can contact us to arrange a tour of the CF centre in Beaumont.

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Where possible, we recommend that you meet us at a transition clinic, as it can help to make your move to Beaumont easier.

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Transition clinic is a chance for you and your family to meet with us and ask any questions you have. It is also a chance for us to get to know you.

INFORMATION FOR PEOPLE WITH CYSTIC FIBR OSIS

What are the differences between children's and adult services? â—†

When you attend an adult centre one of the biggest changes is that you are the person with direct responsibility for your care.

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This means that the team discuss things directly with you. It does not mean that we exclude your family or loved ones, just that the focus is more directly on you in discussions about your CF care.

INFORMATION FOR PEOPLE WITH CYSTIC FIBR OSIS

The CF Team

Your Team at Beaumont The CF team consists of consultant and non-consultant respiratory doctors, CF nurse specialists, a physiotherapist, a dietitian, a clinical psychologist, and a social worker.

We are also supported by a variety of other specialist services that you can access if, or when, you need such services.

INFORMATION FOR PEOPLE WITH CYSTIC FIBR OSIS

The CF Doctor The CF Doctors are in charge of your overall medical care and will meet with you during both inpatient and outpatient visits where they: ◆ Review medications and arrange tests in order to assess your health status. ◆

Provide time to discuss and offer advice regarding CF issues.

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Teach and educate about CF care, ensuring that CF team members are kept updated with any new treatment practices.

The CF Nurse Specialist The CF Nurse Specialist has a key role in co-ordinating your care and communicating information between the different staff on the team. ◆ The CF nurse is the first point of contact for you and will give you vital support in a variety of areas. ◆

Provide care and support to you and your caregivers.

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Provide education on topics such as fertility, organ transplantation or planning holidays.

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Arrange appointments, hospital admissions and referrals as appropriate.

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Faciliate home IV antibiotic treatments.

INFORMATION FOR PEOPLE WITH CYSTIC FIBR OSIS

The Physiotherapist The physiotherapist assesses and works with you in many different areas, such as airway clearance, inhalation therapy, exercise capacity, postural and musculoskeletal problems and incontinence.

The physiotherapy service is available to review inpatients, outpatients, clinics and any appointments in the CF unit.

Dietitian Having a healthy weight for your height is important for your immune function.

Getting chest infections can reduce your appetite and cause you to lose weight.

The dietitian will work with you to help tackle some of the problems with nutrition that occur as a result of CF, for example, pancreatic enzymes, bowel problems, vitamin supplements.

The dietitian will review you at your regular clinic appointments and when you are an inpatient in hospital. If you find there are nutrition problems for which you need more support, the dietitian will arrange follow-up appointments between your clinic slots.

INFORMATION FOR PEOPLE WITH CYSTIC FIBR OSIS

Patient Support: Psychology & Social Work People with a diagnosis of CF manage well most of the time, but there are times when coping with CF can be difficult.

Difficult times may include periods of change (e.g. transition to an adult centre, coping with new treatments) or loss (e.g. missing out on something because of your CF).

There are also times when other life events, on top of dealing with CF can cause stress (e.g. relationship issues).

The CF Psychologist and Social Worker offer both emotional and practical support services to patients and their families. â—†

The CF Psychologist is there to offer support, including talk therapy (e.g. cognitive behavioural therapy for depression) at difficult times.

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The Social Worker in the CF team has an important role to play in helping patients and their families cope more effectively with the inevitable stress of having a chronic illness, by offering emotional support, counselling, practical help and advice.

The Social Worker also provides a psychosocial assessment, advocates for patients when required and liaises with other agencies.

INFORMATION FOR PEOPLE WITH CYSTIC FIBR OSIS

The CF Unit and Clinics CF Unit The CF Unit is situated on the lower ground floor of the hospital. You can contact the CF Nurse Specialist to arrange an appointment.

The services provided include: ◆ multi-disciplinary review of newly diagnosed CF patients; ◆

review of acute illness, investigations and medical procedures;

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treatment review;

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arrangement of clinic appointments or hospital admissions.

Inpatient Admissions Admissions are usually arranged in the CF Unit by the CF Nurse Specialist after medical assessment.

There are currently four en suite rooms for people with CF on St. Paul’s Ward on the second floor. The hospital management is currently in negotiation with the HSE with regards to the development of a dedicated CF Ward.

Due to cross-infection, contact between people with CF is not permitted in the hospital.

INFORMATION FOR PEOPLE WITH CYSTIC FIBR OSIS

Outpatient clinic The Outpatient clinics are held every week on Wednesday from 1.00 pm-3.00 pm.

Clinics are attended by all members of the multidisciplinary team (MDT).

You will be followed up in the outpatient clinics every 3 months or more frequently if required.

At each visit, routine tests will be performed including:

◆ ◆ ◆

sputum test; lung function tests height and weight measurements.

Other investigations are arranged as required either in Beaumont Hospital or at your referring hospital.

INFORMATION FOR PEOPLE WITH CYSTIC FIBR OSIS

Information for Parents Preventing Cross Infection There is strong scientific evidence that contact between people with CF in enclosed environments, such as CF clinics, can cause cross-infection.

Cross-infection basically means that one CF patient can pass on potentially harmful infections and bacteria to another CF patient.

In order to prevent cross-infection, contact between people with CF is minimised at clinic. This also means that you meet each team member individually at clinic.

You are also asked to use the alcohol rub or wash your hands on entering the clinic room. The microbiological status of each patient’s sputum is checked at each clinic visit.

INFORMATION FOR PEOPLE WITH CYSTIC FIBR OSIS

Contact details

CF UNIT RECEPTION Jean Kirwan – Tel: 797 4851 / Fax: 01-797 4868

CF NURSE SPECIALIST Helen McCarthy Annemarie Lyons Claire Bolton – Tel: 01-852 8404

PHYSIOTHERAPIST Eleanor Styles – Tel: 01-797 4866 - bleep 040

DIETITIAN Ruth Hannon – Tel: 01-809 2357 - bleep 763

CLINICAL PSYCHOLOGIST Ailín O’Dea – Tel: 01-809 2223 - bleep 044

SOCIAL WORKER Fiona McInerney – Tel: 01-809 3290 - bleep 037

INFORMATION FOR PEOPLE WITH CYSTIC FIBR OSIS

Directions How to get to Beaumont Hospital BUS The following buses serve the Beaumont Hospital area: 27B: From Connolly (Train) Station. The 27B bus will take you to Beaumont Hospital. The bus stop is located directly opposite Connolly Train Station.

14: From Dundrum to Eden Quay, Connolly Station and then to the gates of Beaumont Hospital (10 minute walk to our front entrance).

16: From Ballinteer to Rathfarnham Road, Drumcondra Rail Station and then to Beaumont Road (20 minute walk to our front entrance).

17A: From Howth Junction Dart Station, stopping at hospital, James Connolly hospital, and at Blanchardstown Shopping Centre.

77: Tallaght, Crumlin, and Walkinstown, Connolly Rail Station and then on to Shopping Centre (10 minute walk).

79: From Ballyfermot, servicing Heuston Rail Station and Connolly Rail Station, then on to hospital.

104: Clontarf Conquer Hill to Vernon Avenue, Harmstown, Edenmore, Donaghmede Shopping Centre, Clarehall SC and Northside SC, then Beaumont hospital. www.dublinbus.ie for more information.

INFORMATION FOR PEOPLE WITH CYSTIC FIBR OSIS

Directions How to get to Beaumont Hospital FROM DUBLIN AIRPORT BY BUS The 16A bus stops on Beaumont Road, near the Beaumont House Lounge. From there, it is a five minute walk to the hospital’s main entrance gate.

FROM DUBLIN AIRPORT BY CAR Take the M1 South. At the Coolock exit, turn left onto Coolock Lane.

Then turn right onto Kilmore Road (opposite the Northside Shopping Centre) and right again on to Kilbarron Road. Make a left onto Trim Road, which takes you to the hospital’s main entrance.

Public car park spaces are available in the multi-storey car park at the front of the hospital. There is a charge for the use of these facilities.

TAXI A taxi rank is at the front entrance of Beaumont Hospital.

INFORMATION FOR PEOPLE WITH CYSTIC FIBR OSIS

NOTES

INFORMATION FOR PEOPLE WITH CYSTIC FIBR OSIS

DIRECTIONS TO THE CF UNIT GROUND FLOOR

Lift

PFTs

Shops

Restaurant

Lift

Reception

Take Stairs/Lifts to Lower Ground Floor

LOWER GROUND FLOOR

START HERE

Lift

Lift

Ground Floor Entrance

CF UNIT

The design and printing of this booklet was made possible by a grant kindly funded by Beaumont Hospital Foundation.