Cystic Fibrosis

fibrosis team member

The specialist Manchester Adult Cystic Fibrosis Centre at UHSM is one of the largest and longest established adult Cystic Fibrosis (CF) centres in the UK, with an international reputation for excellence and innovation.

The majority of patients are referred by their paediatrician but we also take referrals from GPs and other specialist centres. Our aim is to provide a friendly, caring and supportive atmosphere for your care, and to continually improve the management of CF through research and clinical innovation.

We have been based at UHSM since 1994 and following a major refurbishment in 2010, we now occupy a purpose-built state-of-the-art facility – one of the most modern and well equipped in the country. The unit provides inpatient and outpatient services. We have a holistic approach to the management of Cystic Fibrosis (CF), meaning we will look at every aspect of your condition and how it affects your life. Our philosophy is to provide a friendly and caring atmosphere where you will receive expert advice, information and care.

Our team will provide physical and emotional support where needed but will also encourage you to take a lead role in your own care. Our overall goal is to provide you with the best possible quality of life.

What is Cystic Fibrosis?

Cystic fibrosis is one of the most common life-threatening genetic disorders, affecting around 10,800 people in the UK. One in 25 healthy people also carry a copy of the abnormal gene, though only those with two copies will show the clinical features of CF. The disease primarily affects the lungs, with repeated chest infections and breathlessness, but also has important effects on nutrition, diabetes, bones and joints. For more information about CF in general, and living with CF, please see the website of the Cystic Fibrosis Trust.

What will happen at my first appointment?

Before you are referred to us by your paediatrician, you should hopefully have received a copy of the Transitions information pack and DVD. This was developed by young people with CF and it contains all the information that you and your parents should need to help you through the transition to our unit. If you haven’t received one of these packs, please contact your referring unit or contact us.

When you are considered ready to transfer you will get a letter containing your appointment details and parking instructions. If you wish, you can request a visit to the hospital before this appointment just to have a look around. Your first appointment will take about three hours, however, there won’t be much waiting around as you will be seeing a lot of people!

On the morning of your first appointment you’ll come to the centre and be taken for an x-ray straight away, so that by the time the doctors come and see you, they’ve already seen your x-ray. You come to out-patients and you’ll be met by the CF specialist nurse who came out to see you at home, before your transfer. The nurse will tell you how the morning will go and you then meet one of our consultants and one of the physiotherapists who will go through your medical history and current treatment, and you can ask any questions you may have.

You might also meet some of the other members of your CF care team. At the end of the morning the CF specialist nurse will come back to see if there’s anything you didn’t understand or if you’ve got any more questions. You can also visit the ward (inpatients) for a look around if you would like to.

Please bring whoever you like to the first appointment but this is the time we start talking to you about your treatment, not to your parents. For any further information, you can call us on 0161 291 2016 and ask for the specialist nurses.