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Factsheets and information packs

Browse the Cystic Fibrosis Trust's information resources to help you understand some of the issues related to cystic fibrosis (CF) more clearly.

 

We have a huge range of information packs and factsheets on a number of topics, ranging from issues surrounding diagnosis and screening to support with housing and prescription charges. Our information packs offer an in-depth look at several topics like education, family planning and bereavement, while our factsheets present a clear overview of important topics covering diagnosis, related complications, treatments, nutrition, physiotherapy, transition and living with cystic fibrosis.

For more information, or to order any of our information packs, please contact our helpline.

Explore our Information packs, or our factsheets on diagnosis, related complications, treatments, nutrition, physiotherapy, life with CF and transition to adult care.

Information packs

New diagnosis information pack
A series of resources to help families who have just found out that their child has cystic fibrosis. You can order our new diagnosis pack by filling in the order form on the new diagnosis page.

Pre-school and primary school pack
This pack provides information about all aspects of attending pre or primary school with cystic fibrosis, with information for both teachers who have a pupil with cystic fibrosis, and for parents whose children with CF are just starting school, changing schools or have a new teacher.

Secondary school pack
Find out more about the transition from primary to secondary school if you have cystic fibrosis and how you can develop an individual health care plan. You can use our helpful checklist and 'Ask the psychologist' section to help plan for your child's move to secondary school, and we've also created a secondary school magazine for young people with cystic fibrosis. You can order our secondary school pack by filling in the order form on the secondary school page.

Leaving school
Read our leaving school booklets for young people with CF and their friends and families, and download our booklet for training providers, colleges and universities. We've also created an animation all about how to choose your options after leaving school.

Family planning pack
Find out more about the considerations involved when deciding whether or not you'd like to start a family if you or your partner have cystic fibrosis.

Transplant booklets
We worked with people with CF, their families and clinicians to create three booklets on transplant. One booklet is for people with CF going through the transplant process, one is for partners and families of people with CF, and the other is for families and carers of children with the condition.

Bereavement resources
We have three resources for supporting you if you have lost someone to cystic fibrosis, including information for children and support for parents who have lost a child of any age to cystic fibrosis.

End of life planning
We have created a guide for end of life planning for people with cystic fibrosis, with practical information to help anyone who wants to ensure their wishes at the end of their life and following their death are noted.

Festival planning information
Attending a festival can be an exciting time for people of any age. We've put together some useful advice on staying safe and healthy at a festival if you have cystic fibrosis.

Factsheets 

Diagnosis 

Diagnosis in adulthood
This factsheet contains information about cystic fibrosis aimed at people who have been diagnosed with the condition in adulthood.

Family genetic testing - 'cascade screening'
A guide to the family cascade screening programme for cystic fibrosis.

The sweat test for cystic fibrosis
Sweat tests can be used to help rule out or diagnose cystic fibrosis. This factsheet provides information on the sweat test, how it works, and why it is used.

Related complications 

Bone health
In people with cystic fibrosis, thinning of the bones can occur at an earlier age than in the general population. This factsheet describes how bone health can be affected in cystic fibrosis and the implications of this, how bone strength is measured, and options for prevention and treatment of thinning bones.

Cystic fibrosis-related diabetes
Cystic fibrosis-related diabetes (CFRD) is common in adults and adolescents with cystic fibrosis. This factsheet explains what diabetes is and why it can be associated with cystic fibrosis, and the care and treatment someone with CFRD should expect.

Liver disease
Liver disease in people with cystic fibrosis can be related to problems with the drainage of bile out of the liver via the bile ducts and gallbladder or also to scarring in the liver known as fibrosis and cirrhosis.

Hand drawn image of a syringeMelioidosis and tropical travel
Melioidoisis is a rare but potentially life-threatening infection that can be contracted in some tropical countries. This factsheet contains advice on how to reduce your risk of contracting the infection if travelling to a country where meliodosis is present.

Urinary incontinence
Urinary incontinence may be experienced by women and, to a lesser degree, men with cystic fibrosis. This factsheet explains why urinary incontinence may occur in people with cystic fibrosis, and what help is available.

Pelvic floor exercises (female)
Read our guide for strengthening the pelvic floor, which was developed with the help of the Association of Chartered Physiotherapists in Cystic Fibrosis (ACPCF).

How to improve your posture
This guide explains the common postural problems that people with cystic fibrosis can have and shows you how you can improve your posture through simple, effective exercises. 

Treatments

Home intravenous therapy
This factsheets addresses some questions you may have about home intravenous antibiotic treatment for treating cystic fibrosis and compares the advantages and disadvantages of home IVs compared to those given in hospital.

Inhaled therapy
Inhaled antibiotics are a common part of the cystic fibrosis treatment regime. This factsheet provides information on the different types of nebulisers available, how to look after your nebuliser and the types of medications that can be nebulised.

Lung transplantation
This factsheet has been written to help people with cystic fibrosis who are considering lung transplantation. It contains information about the assessment procedure, waiting time, the operation and follow-up, and answers some frequently-asked questions.

Portacaths
A portacath (port) is a totally implantable venous access device (sometimes called a TIVAD for short), which is placed under the skin and is a means of delivering medication to the body easily and effectively. This factsheet provides answers to some common questions people have about portacaths and cystic fibrosis.

Steroid treatment
This factsheet contains information on steroid treatment in cystic fibrosis, including the different types of steroids, what they are used for, how they are given and their possible side effects.

Nutrition

We have worked with dietitians from the Cystic Fibrosis Dietitian Group UK (CFDGUK) to create these leaflets, which are part of a series of 20 leaflets and contain information about different aspects of nutrition for people with cystic fibrosis. More will be added to this page throughout the year when they have been published. Please check back from time to time to see what has been added.

Hand drawn image of a piece of pizza, a milkshake and a tin of tuna

Exercise nutrition
This leaflet aims to provide information about exercise nutrition if you have cystic fibrosis. It includes information about: nutrient intake, hydration, special products and diabetes, as well as a timeline for food and fluid intake.

Leaving home and eating well
This leaflet aims to provide information about eating well if you have left home and have cystic fibrosis. It includes information about: boosting your calories, breakfasts, staying charged up throughout the day, stocking up, budgeting and enzyme storage.

Nutrition and pregnancy
This leaflet aims to provide information about nutrition if you are pregnant and have cystic fibrosis. It includes information about: what to eat, healthy weight gain, vitamin and mineral supplements, foods to avoid, caffeine, peanuts, alcohol, pregnancy symptoms, adding nourishment to your diet, the Oral Glucose Tolerance Test and CF-related diabetes.

Drinking alcohol
This leaflet aims to help you drink sensibly if you choose to drink, and includes information about: the adverse effects of drinking alcohol, sensible alcohol limits, units, binge drinking, pregnancy, alcohol and liver disease, alcohol and CF-related diabetes, what to do if you think you have a drinking problem and ways to limit your alcohol intake.

Nutrition: a guide for adults
This factsheet provides information for adults with cystic fibrosis on how to maintain good nutritional health.

Nutrition: a guide for children and parents 
This factsheet provides information for parents and carers on how to maintain good nutritional health in children with cystic fibrosis.

Nutrition: a guide for feeding infants
This factsheet provides information for parents and carers on how to ensure good nutritional health in infants with cystic fibrosis.

Physiotherapy 

Physiotherapy leaflets
We have worked with the Association of Chartered Physiotherapists in Cystic Fibrosis (ACPCF) to produce a series of leaflets to complement the advice and teaching physiotherapists give people with cystic fibrosis. Head over to our physiotherapy leaflets page to download the leaflets.

Physiotherapy for adults
Looking after the chest and keeping the lungs clear is extremely important in cystic fibrosis. This factsheet explains why it is important to keep the lungs clear and the various airway clearance techniques available for people with cystic fibrosis.

Physiotherapy for babies and toddlers
Looking after the chest and keeping the lungs clear is extremely important in cystic fibrosis. This factsheet is an introduction to chest physiotherapy and its use in babies and toddlers with cystic fibrosis.

Living with cystic fibrosis

Disability Living Allowance (DLA)
Find out more about applying for DLA if you have cystic fibrosis or if you have a child with cystic fibrosis (if they are under 16). This factsheet focuses on completing the claims form in relation to care needs.

Employment
This factsheet covers various aspects of employment and cystic fibrosis, including finding the right job, legal issues and information about the condition for employers.

Financial help
This factsheet provides information about the financial support that may be available for people with cystic fibrosis and their families from the Cystic Fibrosis Trust and other organisations.

Individual healthcare plan for schools
Download a template Individual Healthcare Plan to help plan your child's care with their school.

Prescription charges
In England many people with cystic fibrosis still have to pay for their medical prescriptions. This factsheet provides information about prescription charges in England, including the current costs, how charging works, who is exempt, and the CF Trust’s stance.

The Cystic Fibrosis Trust Support Service 
This factsheet provides information about the information and support available from the Cystic Fibrosis Trust Support Service, including our helpline, welfare grants and publications.

Advance care planning form
We have created an advance care plan form for people with CF to fill in, which can help you to plan what your wishes would be in the event of a significant decline in your health.

Transition

Transition from paediatric to adult care: guide for young people
This factsheet provides information for young people with cystic fibrosis about what to expect when moving from paediatric to adult care, and explains the differences between the two.

Transition from paediatric to adult care: guide for parents
This factsheet provides information for parents about what to expect when their child with cystic fibrosis moves from paediatric to adult care, and explains the difference between the two.

Transition from paediatric to adult care: guide for commissioners and hospital / clinical teams  
The transition from paediatric to adult cystic fibrosis care should be a planned, collaborative process involving professional caregivers, the young person and family. This factsheet outlines how to ensure the transition process runs smoothly for your patients.



Reading material

We have plenty of publications about living with cystic fibrosis, from factsheets by clinicians to our bi-annual 'is' magazine, featuring real-life stories.

Read on

Find support

There's loads of support available for people with cystic fibrosis and their families, from grants to help with benefits.

Discover more

Research areas

Researchers are investigating a range of issues related to cystic fibrosis, from transplants to bacterial infections and gene therapy.

Find out more