Mission Statement

Our mission is to provide outstanding care for children and young people with Cystic fibrosis. Achieved by highly skilled multidisciplinary professionals, working together to deliver both individualised and family centred care.

About Cystic Fibrosis

Cystic fibrosis (CF) is a life limiting inherited disease, affecting over 10,000 people in the UK.

You can't catch or develop cystic fibrosis, it's something you're born with and most cases in the UK are now diagnosed soon after birth.

If you or someone you know has been recently diagnosed with cystic fibrosis it can be overwhelming. CF is a complex disease and the types and severity of symptons can differ widely from person to person. Breakthrough treatments have added years to the lives of people with CF. There is no cure for CF however there have been tremendous advancements in research and care with many people with CF being able to realise their dreams of attending college, pursuing careers, having meaningful relationships and children of their own.

CF Condition Genetic Inheritance

Cystic fibrosis is an inherited genetic disease caused by a faulty gene. These genes control the movement of salt and water in and out of your cells, resulting in the lungs and digestive system becoming clogged with mucus, making it hard to breathe and digest food.

Each of the thousands of genes in the body has 2 copies. For CF to occur, both copies of the CF gene (CFTR) need to be faulty. Each parent of a child with CF will have one faulty copy of the gene and one normal copy; having one normal copy is enough to stay healthy. Each parent passes on one copy of each of their CF genes

This means that there is a 1 in 4 chance of both faulty genes being passed on to their children.

Symptoms of cystic fibrosis can include a troublesome cough, chest infections, prolonged diarrhoea and poor weight gain. These symptoms are not unique to cystic fibrosis. Cystic fibrosis is a complex disease that affects many different organs.

There is currently no cure for cystic fibrosis but many treatments are available to manage it, including physiotherapy, exercise, medication and nutrition.

More than half of the cystic fibrosis population in the UK will live past 41, and improved care and treatments mean that a baby born today is expected to live even longer.

 

People with CF are at greater risk of getting lung infections because of the thicker and stickier mucus which builds up in their lungs allowing germs to thrive and multiply. Chest infections and a troublesome cough, caused mostly by bacteria are a serious and chronic problem for many people living with CF.

A combination of physiotherapy and medication can help control chest infections and prevent the buildup of mucus that damages the lungs.

To stay healthier and reduce the risk of cross infection people with CF should not meet or come into close contact with one another.

It is common for people with cystic fibrosis to experience some problems with lung function, although not everyone is affected.

CF Condition - How it affects the lungs

People with CF have to pay more attention to what they eat and how they digest food. In most people with CF the digestive tract works a little differently. Cystic fibrosis affects the pancreas (see picture) because of the buildup of thick, sticky mucus that blocks the ducts, stopping digestive enzymes produced in the pancreas,  from reaching the intestines to aid digestion. This can make it difficult for people with CF to grow normally and maintain a healthy weight

Supplements can help compensate for the lack of enzyme production by the pancreas, such as digestive enzymes that most people with cystic fibrosis take with each meal to help digest food

CF Condition - How it affects the pancreas

The South and Central West Midlands Cystic Fibrosis Network provide care for around 300 patients.

The Network comprises of 7 centres:

Designated Specialist Centre

Shared Care Centre’s

Help children understand CF

Life Stages

CF affects patients and families at different life stages. We have put together information & advice to help at every stage

Latest News

  • Exciting new development for the Respiratory and Cystic Fibrosis Inpatient Environment - New Ward 15

    Exciting new development for the Respiratory and Cystic Fibrosis Inpatient Environment - New Ward 15

    We currently admit children and young people to one of two Ward areas; Ward 2 for the under 5s and Ward 7 for the over 5s. From Monday 10th June 2019, all children and young people with respiratory and CF conditions requiring admission will be admitted to the newly refurbished Ward 15 environment, located above the Emergency Department (ED). The new Ward is a much larger, brighter space than we occupied previously with more beds. In particular, we will be able to provide our patients with access to en-suite facilities which has historically proven difficult for us. The nursing staff, and indeed all other staff, will remain the same and, therefore, importantly familiar to our families. We are aiming for a seamless transition to the new building, but please bear with us if there are any teething problems. As always, our prime aim is to minimise any cross infection risks and enable your child to be seen in an efficient and comprehensive manner during an inpatient stay. We very much hope that you will view this change in environment as a hugely positive initiative, one designed to improve the patient/family experience and to enable as efficient working as possible whilst delivering an excellent standard of care. If you have any feedback once you have experienced these new facilities, please do let us know by contacting Jo Osmond, CF Service and Network Manager.READ MORE

  • Cystic Fibrosis Trust, CEO David Ramsden and Dr Keith Brownlee visit Birmingham Children's Hospital, CF Service and Waterfall House

    Cystic Fibrosis Trust, CEO David Ramsden and Dr Keith Brownlee visit Birmingham Children's Hospital, CF Service and Waterfall House

    Following the opening of the Rare Diseases Centre, Waterfall House in the summer of 2018, and the opportunity this presented for Cystic Fibrosis outpatient clinics to be held in this fabulous new purpose-built facility, we were able to host a visit from the Cystic Fibrosis Trust's CEO, David Ramsden and their Director of Policy, Programmes and Quality Improvement, Dr Keith Brownlee on Wednesday 10th April 2019.READ MORE

  • Opening of new Rare Diseases Unit at Birmingham Women's and Children's Hospital - Waterfall House

    Opening of new Rare Diseases Unit at Birmingham Women's and Children's Hospital - Waterfall House

    We're very proud to be home to the UK’s first rare diseases centre for children. The centre, located in Waterfall House - our £37.5million clinical building, is due to open in 2018. The rare disease centre has been generously funded by donations to the Birmingham Children’s Hospital Charity’s Star Appeal, which raised £3.65million for the cause. We treat approximately 9,000 children and young people with more than 500 different rare diseases from across the UK and have 11 highly-specialised services. The centre means that we will be able to offer our rare disease children and young people highly coordinated multidisciplinary and multi-specialty rare disease clinics together with peer support and consistent access to research, information and treatment. We are proud to be redefining the best care from a 'one-size-fits-all' to a patient-centred approach in which we help children and families with rare diseases lead the best quality of life possible.READ MORE

  • Website launch

    Website launch

    We are pleased to announce the launch of the new website for the network. We hope this is a valuable resource for everyone.READ MORE

Family story

Ruby's Story

One thing that is so difficult to imagine after diagnosis is exactly what life will be like for your child.

"Cystic fibrosis has never stopped ruby doing anything! Yes her days may require a little more structure and planning to enable her to do everything else her friends do but it certainly does not stop her."