hospital name date of birth telephone contact unit...

PERSONAL DETAILS

Hospital

Name

Date of birth

Telephone contact

Unit number:

If found please contact

On

Medical TeamProfessor Warren Lenney - Consultant PaediatricianDr Fran Gilchrist - Consultant Paediatrician Dr Ang Ho Dr Martyn Rees - Consultant Paediatrician Dr Senthil Kumar Sethuraman

Admin TeamErin Hodgetts - Co-ordinatorAngela Black - SecretaryRachel Davies - SecretaryCarol Binsley - Secretary

Specialist NursesSiobhan DaviesKelly BakewellBelinda Gower

PhysiotherapistsZoe RushtonChristine Law

DieticiansSue BellHannah Joscelyne

Clinical psychologistsDr Ruth FishwickDr Clair May

Welfare AdvisorJoanne Frain

Community nursesAngela MalkinHeather ParrRachel LuggTash Grocott

Clinical Care Advisor (CF Trust)Dominic Kavanagh

NORTH WEST MIDLANDS CYSTIC FIBROSIS CENTRE

Children’s Outpatients, Ground Floor, Royal Stoke University Hospital,

Newcastle Road, Stoke on Trent ST4 6QG

E-mail: [email protected]

THE NORTH WEST MIDLANDS CF TEAM

ADMIN TEAMErin Hodgetts Co-ordinatorAnge Black Secretary

CHILDREN’S TEAMProfessor Warren Lenney Consultant PaediatricianDr Fran Gilchrist Consultant PaediatricianDr Ang Ho Consultant PaediatricianSiobhan Davies Clinical Nurse SpecialistKelly Bakewell Support NurseSue Bell Advanced Specialist DieticianZoe Rushton Advanced Specialist PhysiotherapistDr Ruth Fishwick Psychologist 01782 408354Ward 216 01782 6(75216) 01782 6(76216)Community Team 01283 504 867 (patients in Burton area)

SUPPORT AND ADVICEJoanne Frain Welfare Advisor for Cystic FibrosisDominic Kavanagh Clinical Care Advisor (CF Trust) 02084647211

PHARMACYDispensary 01782 6(74597)Manufacturing 01782 6(74579)Lloyds 01782 6(74591)





Contact Information

ALL TEAM MEMBERS IN STOKE ON TRENT CAN BE CONTACTED ON:

01782 675105Between 8.30am – 4.30pm, Monday to Friday.

If there is no answer, leave a message on the answer machine. If it is urgent, contact switchboard (01782 715444) and ask the operator to put your number on the bleep to

save you holding on. (There may be occasions when the team member will not be able to respond immediately to your bleep, but will do so at the earliest opportunity).

Out of hours and weekends, contact children’s ward.

ADMIN TEAMRachel Davies 01952 565985Carol Binsley 01952 641222 Ext:4183

CHILDREN’S TEAMDr Martyn Rees Consultant PaediatricianDr Senthil Kumar Sethuraman Consultant PaediatricianRachel Lugg Community NurseTash Grocott Community NurseBelinda Gower Specialist NurseChristine Law PhysiotherapistHannah Joscelyne DieticianClair May Clinical Psychologist

SUPPORT AND ADVICEJoanne Frain Welfare Advisor for Cystic Fibrosis 01782 675105Dominic Kavanagh Clinical Care Advisor (CF Trust) 02084647211

PHARMACYHayley Atkin Pharmacist





Contact Information

ALL TEAM MEMBERS IN SHROPSHIRE CAN BE CONTACTED ON:

SHREWSBURY (COMMUNITY) 01743 450855 TELFORD 01952 565985

Between 8.30am – 4.30pm, Monday to Friday.If there is no answer, leave a message on the answer machine. If it is urgent, contact

switchboard (01952 641222) and ask the operator to put your number on the bleep to save you holding on. (There may be occasions when the team member will not be able to

respond immediately to your bleep, but will do so at the earliest opportunity).

Out of hours and weekends, contact children’s ward 01952 565919.

Personal Hand Held Record

This is your own personal record which contains information about you and your cystic fibrosis.

The record can be used by you, your parents, carers and members of your cystic fibrosis team.

You decide what information you want to keep in it and who you would like to read it and who you would like to write in it.

The record has been designed to hold all the information that you should hopefully need.

You may find the record useful if you are seeing your own doctor as he/she can see what treatments you are taking and the doctor can

write down any changes needed.You may wish to take this record on holiday with you. Should you

become ill, you will then have an up-to-date record of your cystic fibrosis confirming all your medications and other treatments.

You and your family are now under the care of The North West Midlands Cystic Fibrosis (CF) Centre which is a designated Centre providing a full service for patients with CF. The centre covers a wide area of Staffordshire and Shropshire. (Map over leaf). A small number of patients from Wales and Cheshire also use the centre. Services include in-patient, out-patient and support from community and hospital at home teams.

The CF team is based at the Royal Stoke University Hospital with a supporting team based in Shropshire. There are community teams in Shropshire, Stoke on Trent, Stafford and Burton who also support the teams.

We are fortunate here in Stoke on Trent that our adult CF team service is based on the same site as the Children’s and therefore young persons from the age of 11 years will be introduced to the adult team and seen regularly until they transfer to the adult team at an age of their choice between the age of 16 years and 18 years. The team will support you through this period and will provide you with the transition delivery document. For children living in Shropshire, the adult team come to Shrewsbury on the 1st Thursday of every month and so children/teenagers living in the area will meet the team there.

All patients with CF in the North West Midlands will be offered one of these records so that if any of you are attending appointments in any hospital or general practice there will be consistency of information available. Additional information will be given along the way and will include transition information for the adult service.

Map of the area the North West Midlands CF Team cover

Map of the area the North West Midlands CF Team cover

Shropshire

Cheshire

Staffordshire

Queens Hospital

Royal Shrewsbury Hospital

Royal Stoke University Hospital

Princess Royal Hospital

Contents

Acknowledgments

How to use your Personal Hand Held Record

Section One - Information SharingDay to day diary Information to and from your team Appointments

Section Two - MedicationList of medicines I am taking Drug allergy and reactionsOral antibiotics Intravenous antibioticsVaccinations

Section Three - Personal Planning Ages and StagesPersonal PlanCare Pathway Plan from 0-18 years (including plan around transition to adult care)

Section Four - Information SectionInformation about my tests and my investigations I have had.

Section Five - Growth and Nutrition Growth and Nutrition

Section Six - RespiratoryPhysiotherapy, Lung Function Results, Equipment including nebulisers Loaned equipment

Section Seven - General Information General InformationHolidays, travel insuranceSchools, UniversityHousingBenefitsOther supporting groups

Section Eight - GlossaryGlossary

Acknowledgments

Thanks to the children and parents who have provided us with a list of what they would like to see in their personal record and for using the record over a 6 month period providing us with

really helpful comments and suggestions.

Thanks also to the Cystic Fibrosis Trust for giving permission to use their material.

A big thank you to the Bloxwich Golf Club whose members have raised the money to fund the record

(The Lady Captain at the time was Alveen, grandmother of Evie Pritchard)

The North West Midlands Cystic Fibrosis (CF) Centre is a designated Centre providing a full service for patients with

CF living in and nearby North Staffordshire (including Stoke-on-Trent, Burton, Stone and Stafford) and in Shropshire. Services include in-patient, out-patient and services in the community setting.

A small number of patients from Wales and Cheshire also use the Centre’s services. All patients with CF in the North West Midlands

will be offered one of these records so that if any of you are attending appointments in any hospital or general practice there

will be consistency of information available.

How to use your personal record

These pages provide you with general information, results of investigations, charts showing your height and weight.

Information also about your CF, its management, its treatment and a list of equipment you may need.

If you don’t feel certain pages are useful, they can be easily removed. They can be re-inserted if needed at a later date.

Section One - Information Sharing

• Day to day diary

This section allows you and those people caring for you, to record about how you are feeling and how your CF is affecting you.

You are able to choose who writes in these pages and who you show them to. They are for you to keep your thoughts and feelings and will help people understand how you are between visits.

• Information to and from your team. This section is for you to list questions for members of the team and for them to record their answers.

• Appointments Here you can list your appointments with the team.

Section

On

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Diary

Date Signature

Things to ask my CF Team Answers and Plans

Clinic Appointments

Type of Clinic Dates Location Clinicians Name

Section Two - Medication

• This section includes details of your medicines and when you should take them. It will also tell you when you started each treatment and when or if changes are made. You will also be able to insert details of the medicine and devices you may have with instructions on how to use them.

• You can also keep a record of courses of intravenous antibiotics and record any problems you have.

• In this section you can keep a record of any drug allergy.

• You can keep a record of any vaccinations you receive.

Section

Two

Date Medicine Comments and side effects

I am allergic to these medications

I am allergic to these medications

Date Medicine Comments and side effects

CYSTIC FIBROSIS ORAL ANTIBIOTIC PREVENTION DOSAGES

0 6 Weeks

6 Months

24 Months

AUGMENTIN DUO Suspension: 400/57mg/5ml

0.3 ml/kg OD

AZITHROMYCIN Capsules: 250mg. Suspension: 200mg/5ml

10mg/kg Three times per week

FLUCLOXACILLIN Syrup: 125mg/5ml and 250mg/5ml

125mg BD

TRIMETHOPRIM Suspension: 50mg/5ml

2mg/kg BD

25mg BD

50mg BD

OD – once daily BD – twice daily

Intravenous (IV) antibiotics regimes

Antibiotic name DoseTimes daily

No. of days

CommentsStart date

Yearly FluPneumococcal



Vaccinations

*Infuenza(Flu) – every year

Pneumococcal (Pneumovac) every 5 -7years

Section Three - Ages and Stages

• Guide for your visits

• Ages and stages

The following pages are a guide for families how to check if they have all the help and information they need to bring up happy and healthy children with cystic fibrosis.

• Onwards and upwards

From the age of 11 years, you will be provided with a transition document very similar to your Ages and Stages sheets you have been using already. The adult team will also be introduced to you and attend some of your clinic visits.

The transition document Ready steady Go will help you prepare for the future and plan your transition into the adult service. The paediatric team will support you in this process as they have done all through your childhood.

Section

Three

Guide for your visits

General CF Guide

AGES AND STAGES:

Living and Growing up with Cystic Fibrosis

Developmental Education for use with Parents and Patients living with CF.

Adapted from Kecia Nelson - Ages and Stages University of Missouri CF centreAmended by the North West Midlands Cystic Fibrosis Centre 07/08/2012

Initial Diagnosis

Adapted from Kecia Nelson - Ages and Stages University of Missouri CF centre Amended by the North West Midlands Cystic Fibrosis Centre 07/08/2012

I n i t i a l D i a g n o s i s

Discuss Newborn screening process

Understanding the genetics of Cystic Fibrosis

Basic review of Cystic Fibrosis

Other test results (e.g.faecalelastase)

CF Clinic visits – frequency of visits and purpose

Team approach to CF

Getting information – tips for ‘safe’ websites (e.g. Cystic Fibrosis Trust)

How to contact your CF Centre

Sharing the diagnosis with family members

Comments/Questions Parents/Guardians Professionals

First follow up visit after diagnosis


F i r s t f o l l o w u p v i s i t a f t e r d i a g n o s i s

Fitting CF into everyday life

Enjoying your baby’s normal growth and development

Understanding the respiratory system - Introducing physiotherapy

Understanding the digestive system - Creon

Aims of the outpatient management

How to give your baby the best start - Good infection control - Smoking


Second follow-up visit


S e c o n d f o l l o w - u p v i s i t

Opportunity for you to ask questions

Monitor growth and development

Review physiotherapy

Creon and nutrition

Fitting CF into everyday – balancing the needs of a new baby, CF and your family

Port CF database consent and discussion

First point of call


Good infection control – hand washing,

hand gels, avoid ill people

Up to 2 years of age visits


U p t o 2 y e a r s o f a g e v i s i t s

Feeling confident - Physiotherapy - Nutrition and Creon - Medication

Balancing CF and family life

How a diagnosis of CF affects you and other family members

Annual review discussion, routine and tests. Tests to be done 2 months prior to the annual review appointment.

Positive parenting

Sharing information about treatment with family members


2 to 4 years of age


2 t o 4 y e a r s o f a g e

Discuss the importance of continuing physiotherapy - Identifying respiratory symptoms - Nutrition and Creon - Medication

Nutrition

- Mealtime routines - Creon doses - Identifying malabsorption

Involving your child in his/her CF care - Teaching your child the basics about all

treatments. - Introducing child’s participation in airway

clearance

Child care concerns

Helping to set limits and boundaries with your child

Getting prepared for school


5 to 7 years of age


5 t o 7 y e a r s o f a g e

Child’s understanding and independent use of physiotherapy treatment: - Airway clearance - Respiratory symptoms - Pulmonary function tests

Child’s understanding and independence of

nutrition: - Creon - Malabsorption

Child can talk about how he/she feels when asked and and can discuss with CF health professionals

Child to actively take part in sputum clearance and airway clearance e.g. incentive spirometer, bubble games.

Child and parents learning about CF medicines and what they do.

Setting limits and boundaries with your child. School issues

- Telling teachers and friends about CF - Taking Creon at school - Preparing for school lunch and snacks - School trips - Toilet needs - Water and salt needs at school

8 to 12 years of age - CHILD


8 t o 1 2 y e a r s o f a g e CHILD

Begin taking part more actively in clinic visits, answering independently.

Explaining CF to friends.

Continue taking Creon without help from others

Understanding why some people have CF and others do not

Basic nutrition: - Continue to help child understand nutrition and

malabsorption - Respiratory symptoms

Encourage child to talk about symptoms without being asked.

Knowing the names of the medicines and the reasons for taking them.

Discuss options for airway clearance.

Exercise and sports including salt and fluids for physical activity.

Importance of lung health.

Coping with a lifelong chronic illness – identifying anxiety and depression.

School issues: - Friends - Meals/snacks - Toilet use - Activities

CHILD AND PARENT


1 3 y e a r s o f a g e a n d u p w a r d s

From the age of 13 years, you will be provided with a transition document very similar to your Ages and Stages sheets you have been using already.

The transition document will help you prepare for the future and plan your transition into the adult service. The paediatric team will support you in this process as they have done all through your childhood.

13 years of age and upwards

The teenage years are a time to become more independent and responsible for the things you do. Looking after your health is just one of these things. To do this you will need information about your CF and the chance take over some of the care you rely on your parents or the CF team for.

Around your 11th birthday we will give you some information that will help you prepare, plan and move from the children’s services to the adult services.

Members of the adult team will also attend some of your clinic appointments which means you will get to know them which will prepare you for when you move across between your 16th and 18th birthday.

We are fortunate the adult CF service is in the same building and work very closely with the children’s team.

When you are ready to move across the children’s team will still be there to support you and your family e.g. will attend some of your clinic appointments, visit you if you were to become an inpatient and remember we are only a phone call away.

Onwards and Upwards!

Section Four - Investigations you may need

• Please do ask a member of the CF team if you need more information.

• Keep record of which investigations that you have had.

Section

Fou

r

Tests

Below is brief information about some tests/investigations which may be needed. If you would like more information please ask your CF nurse

for a handout which can be added into your record.

Newborn screening Needs a few drops of blood from baby’s heel on day 6 or7.

A number of diseases are screened for including cystic fibrosis.

Sweat TestThis measures the amount of salt (usually measured as chloride) in

baby’s sweat. A very small amount of sweat is collected from the arm. In cystic fibrosis the salt level is high.

Measuring height and weight and blood oxygen levels.

Every time you come to hospital you will have your height and weight measured and often your blood oxygen levels will be recorded.

Chest x ray

The first usually take place around 6 months of age then routinely every year as part of an annual review. If your child becomes

unwell he/she may require an extra chest x ray.

A Chest CT scan

This gives more information about the structure of the lungs than an x-ray.

Bronchoscopy

This investigation is to see deep into the airways of the lungs. A flexible tube connected to a camera is passed down into the large airways.

The investigation is done with your child fully anaesthetised. On waking he/she will remember nothing. It is painless and is undertaken as a day patient

Bone scan (dexascan)

From the age of 10 years we arrange a painless scan of your bones to make sure they remain healthy. The scan is usually repeated every 2-3 years

Every year around your birthday we will take some of you blood to check your vitamin levels, measure your liver function and look for any

signs of infection. If you are unwell we sometimes need to take some blood at other times as well.

Abdominal ultrasound

From the age of 10 and yearly afterwards we will undertake an abdominal ultra-sound to check your liver, kidneys and gall bladder

to make sure that they are working well.

Glucose Tolerance Test

Some children develop CF related diabetes. This test is also checked yearly from your 10th birthday onwards to find out whether you could

be becoming diabetic.

It is important to screen for CF related diabetes as early treatment can protect against weight loss, deterioration in lung function and

long-term complications

Date

Chest x ray

Blood tests

Blood Glucose test

Bronchoscopy

Dexa scan

Abdominal Ultrasound

Chest CT Scan

Insertion of Portacath

Investigation record

Section Five - Growth and Nutrition

In this section you will receive information about:

• Growth (growth chart enclosed)

• Pancreatic enzymes if you need them

• Advice on feeding

• Cystic fibrosis related diabetes (CFRD)

• Blood sugar monitoring

Section

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Food in Cystic Fibrosis

A high energy high protein diet is needed in cystic fibrosis.This is to : 1 Allow normal growth height and weight 2 Fight chest infections and improve lung function 3 Replace energy lost in the stools (if on enzymes ) 4 Building up a store if unwell

There are no foods that need avoiding.

Try to have foods from each of the food groups below:

If extra energy is needed the following ideas can be used: 1 Spreads e.g.: butter polyunsaturated margarine 2 Oils e.g.: olive oil, rapeseed oil 3 Use Full fat foods 4 Snacks between meals

Your dietician will help you plan your diet

Ideas for family meals with extra energyHere are a few suggestions for family meals:

Pasta for everybodyChildren who need extra calories – add 1 teaspoon of olive oil butter

Bolognaise sauceChildren who need extra energy, add a 1 teaspoon of oil,butter or margarine to mince and extra cheese!

Salad - tomato cucumber lettuce add a teaspoon dressing mayonnaise

DessertsThick and creamy full fat yogurt

Don’t forget to explain why your child needs extra energy you can say ‘to keep healthy to grow strong and play’

How many calories does your child need?This will be individual to your child below is an idea of how many calories they may need per day:

Age/yrs Energy /Calories kcal per Day Male Female 1-3 1230 -1450 1165 -1400 4-6 1715-2000 1545 -1850 7-10 1970-2350 1740- 2100 11-14 2200-2600 1845 - 2200 15-18 2755-3300 2110 -2500 19-50 2550-3000 1940 -2300

Table of Energy and Fat content of common foods

Meat and alternative Kcal Average Fat/g1 oz mince/1tbsp 70 53 chicken nuggets 150 52 fish fingers 100 51 thin sausage 60 51 boiled egg 75 55” pizza 200 54 oz/100g chicken breast 160 51 rasher bacon 120 101 fried egg 120 102oz beef burger 120 101 thick sausage 120 101 burger in bun 250 101 oz cheese 120 105 oz fried fish 250 151 sausage roll large 300 201 scotch egg 300 205 oz meat/cheese pie 400 251 large pizza 800 302 tbsp baked beans 50 0

Bread/Cereals Kcal Average Fat/g2 Weetabix and 150ml milk 220 51 slice bread and butter 130 52 slices sandwich and filling 300-400 15-202 oatcakes and cheese 400 20

Potato/rice/pasta Kcal Average Fat/g 10 chips large/1 waffle 100 52 tbsp pasta/rice/2 potatoes 100 01 packet regular fries 250 10

Puddings 1 apple/pear 50 01 bowl jelly 80 01 bowl milk pudding 150 51 full fat yoghurt 150 51 small Fromage Frais 90 51 scoop ice cream 100 51 chocolate mousse 120 51 small cake 200 5

Snacks 1 rich tea biscuit 35 11 plain digestive biscuit 70 31 packet crisps 150 1050g chocolate bar 250 1030g/1oz peanuts 170 151 doughnut 250 10Milky drinks, 200ml fortisip/ ensure plus /paediasure plus 300 101/2pt Milk full fat 200 101 scandishake/1/2pt milk 600 30Takeaway meals Indian/Chinese meals 800 >30Big Mac 500 20Macdonalds milk shake 400 10

EXTRA Calories 1 tbsp/15ml Double cream 65 71 tsp/10g margarine/butter 70 81 tbsp/15ml oil 125 141 tsp/10g peanut butter/chocolate spread 70 81 tbsp Oil Dressing oil 75-100 71 tbsp cream cheese 70 51 tsp jam/honey /sugar 20 -

ENZYMES

Pancreatic enzymes are natural chemicals that help the body to break down and digest protein, fat, and carbohydrates in food. The enzymes are contained in the digestive juices produced by the pancreas.

However in most people with CF, the pancreas is prevented from functioning normally, which is known as pancreatic insufficiency or pancreatic failure. This is seen in 85–95% of those with Cystic Fibrosis.

This can cause malnutrition, which can lead to poor growth and physical weakness.

Most babies with Cystic Fibrosis will therefore need pancreatic enzyme supplements to replace those not produced by the pancreas. The most commonly-used pancreatic enzyme supplement for children in the UK is Creon.

The enzymes are administered in small capsules or granules called microspheres. They are usually very effective at digesting food.The dose of pancreatic enzyme supplements will be prescribed at the hospital clinic, and will vary from baby to baby. (Cystic Fibrosis Trust 2010)

How many enzymes your child has will depend on the following:

• How much of your child’s natural enzyme reaches the small intestine • How much food or milk your child takes • What kind of foods especially how much fat and protein the food contains

Signs as to when the enzyme dose needs to be changed:

• Enzymes may need to be adjusted when the meal or snack contains more fat than the usual amount.

• Signs of malabsorption - (fatty stools / bloating /wind /tummy aches) when taking the usual amount of enzymes - this is when the pancreas has fewer natural enzymes to digest food.

• Major changes in your child’s diet

Adapted from the University of Cincinnati, Adult Cystic Fibrosis Center.

GI Symptom Tracker Day 1 Day 2 Day 3 Day 4 Day 5 Day 6 Day 7

Loose and/or large bowel movements

Foul smelling bowel movements

Constipation

Diarrhea

Mucus or oil in the bowel movements

Gas and/or cramping

Stomach pain

Bloating or distention

Difficulty gaining weight

Appetite: Less, More, Baseline

Other:

Total number of bowel movements/day

Comments:

Check the boxes that apply to your symptoms each day. See opposite side for symptom examples.

Home gastrointestinal symptom tracker

Use below as a guide for malabsorption

Date

TABLE FOR RECORDING NUMBER OF ENZYMES FOR MILK/MEALS AND SNACKS

Number of enzymes with Milk

Number of enzymes

with Meals

Number of enzymes

with Snacks/puddings

Max enzymes per day

Creon per g Fat

Comments

Cystic fibrosis-related diabetes (CFRD)

Cystic fibrosis-related diabetes (CFRD) is common in adults and adolescents with cystic fibrosis (CF). It occurs in approximately 20% of adolescents and 40 to 50% of adults with cystic fibrosis. It is less common in children.

What is diabetes?

Diabetes is a condition where the amount of glucose (sugar) in the blood is too high. Normally a hormone called insulin controls the amount of glucose (sugar) in our blood. Insulin is needed to move glucose from the bloodstream into the cells. In diabetes the pancreas does not produce enough insulin and sometimes the insulin produced does not work properly called insulin resistance.

Why is cystic fibrosis associated with diabetes?

In most individuals with cystic fibrosis the pancreas does not work properly. This can results in the pancreas not producing enough diges-tive enzymes, which break down foods such as carbohydrate, proteins and fats.

The pancreas also is the organ where insulin is produced. The pancreas can reduce its production of insulin and this can result in CF-related diabetes.

A fact sheet on CF related diabetes from the CF trust will be given to you at the time.

Section Six - Respiratory

This this section includes a record sheet for you to record your lung • function. You will also receive information about:Physiotherapy, (including techniques) devices,• Inhalers• Equipment including nebulisers •

Loaned equipment/service date record sheet. Some of your equipment • will need to be serviced once a year. (date is on your nebuliser and it is possible to arrange for your nebuliser to be serviced while you are in clinic).

Section

Six

Date Device Instructions Service Date

Equipment Loaned or Given

Comments

Section Seven - General Information

General Information

• Holidays This section will provide a check list that you should think of taking with you. Useful numbers for holiday insurance• Housing• Benefits• Prescription charges• Welfare grants• Other supporting agencies• Schools/university

Section

Seven

Holidays

We would recommend that you take your personnel record with you • as it contains important information about the care and management about your cystic fibrosis.

The hospital will provide you with a letter stating that you are fit to • travel and also providing a list of medications you are required to take with you and any other information which is applicable to you e.g. if you have a port a cath insitu/if you are a diabetic.

Discuss with the CF team what medications would be advisable to take • with you.

Carry any medications with your hand luggage.•

Remember to drink plenty of fluids•

Maintain good salt levels (Salt and water advice leaflet enclosed)•

Ensure you have good sun protection in terms of clothing. Hats and • most important high factor sun cream.

Remember to take out travel insurance.•

Dream holidays – contact your CF team who can refer your family for a • Dream holiday (UK only).

List of known insurance companies (If you have experience and • good deals for travel insurance let your CF team know and we can recommend to others).

Abletotravel 01892 839501

Barclays 0845 600 8090

Norwich Union Direct travel insurance 0800 559 3201

Columbus Insurance 0845 3308578

Freedom Insurance Cambridge 0870 7743760

Worldwide Insurance, com 0870 1128100

Liverpool Victoria 08000223919

Ace Travel 08000282396

Flexicover 08000939495

Direct Travel Insurance services 08456052500

Housing

If you have concerns about your home e.g. too small, damp etc., we would advise you to contact your welfare officer Jo Frain on 01782 657105 who will advise and support you through the process and involve members of the CF team as needed.

Cystic Fibrosis Trust leaflet available (ask a member of the team to provide you with one)

Benefits

The benefit system is quite complex if you require help with completing these forms or advice on what your child is entitled to contact Jo Frain on 01782 675105

Welfare grants

These grants are available through the Cystic Fibrosis trust contact a member of the Cystic Fibrosis team to see if you would be eligible and guidance will be given to complete this application.

Education

When you are planning to start your child in nursery, primary school and senior school members of the CF team will arrange a visit with yourselves and the staff who are going to be responsible for your child. This will give them an insight to Cystic Fibrosis and a care plan provided.

When you are looking at Further education as in 6th form college or University again members of the CF team are there to support you including the welfare officer who can help with grant applications, equipment etc.

Comments

Section Eight - Glossary

• Glossary This section will provide you with explanations of words/tests.

If you have any questions or tests you would like information then make a note and talk to a member of the team. Sectio

n Eig

ht

Glossary

BMMeasures the sugar level in the blood

Bronchus (Bronchi)The larger airway(s) in the lung.

DNAThe abbreviation for deoxyribonucleic acid, the principal

molecule carrying genetic information in all living organisms.

EnzymesChemical which in CF digestive enzymes which digest food so it can be

absorbed and used by the body.

FEV1The maximal amount of air you forcefully breathe out in 1 second.

FVCThe amount of air which can be forcibly breathe out, from the lungs after

Taking the deepest breath possible

Genetic TestingThe method of detecting certain genes which in CF explains

if a person is a carrier for CF or actually has the disease.

Haemophilus InfluenzaeBacteria which are a common cause of respiratory infection in Cystic Fibrosis.

HaemoptysisCoughing up blood.

IntravenousSometimes antibiotics or other medicines are given into a vein

rather than by mouth. To make it easier, a small plastic cannula (tube) can be left in the vein so that the medicine can be put through it

rather than needing an injection each time. There is a cream which numbs the skin before the cannula is inserted.

Meconium IleusAn obstruction of the small intestine at Birth

which occasionally occurs in CF

NebuliserA small machine which converts liquid medication into a fine mist

which can be breathed directly into the lungs.

PancreasAn organ which lies below the stomach andmakes digestive juices

or enzymes and insulin.

PhysiotherapyPart of the treatment for Cystic Fibrosis

PolypsA small growth of mucous membrane that can grow on the

lining of the nose.

Pseudomonas aeruginosaA bacterial infection which affects the lungs.

SatsRecording the oxygen level

SinusitisInflammation of the membrane lining the sinuses

(the air-filled cavities in the bones surrounding the nose).

SputumMaterial produced by the cells lining the respiratory tract.

Staphylococcus aureusA bacterial infection that can affect the lungs..

Sweat TestA test used to diagnose Cystic Fibrosis alongside testing for CF genes.

hospital name date of birth telephone contact unit...

Documents