Cystic fibrosis (CF) is a genetic disease which affects the movement of salt and water across the cells within the body.
This can lead to thick mucus congesting the internal organs, particularly the lungs and bowel. This makes it harder to breathe and absorb food. Cystic fibrosis is most common in white people of Northern European descent. It is much less common in other ethnic groups.
It is estimated that one in every 2,500 babies born in the UK will be born with cystic fibrosis and there are more than 10,000 people living with the condition in this country.
At Frimley Park Hospital, we host a specialist, tertiary, adult cystic fibrosis unit, recognised by the CF Trust. We currently look after approximately 170 patients, mainly from the Greater London, Surrey, Hampshire, and Berkshire areas.
Our CF unit comprises a multidisciplinary team made up of consultant physicians, clinical nurse specialists, physiotherapists, dietitians, pharmacists, an exercise practitioner, a diabetes nurse, a psychologist, and database coordinators. We have a dedicated clinical unit that houses both bespoke outpatient rooms and five en-suite inpatient rooms. We contribute annually to the CF Trust’s clinical database.
We care for patients who may be managing a range of symptoms and problems encountered in cystic fibrosis, and our aim is to make their condition easier to live with. We have several collaborative links with the gastroenterology, diabetes, obstetric, surgery, vascular and radiology departments. Our external partners include the transplant team at Harefield Hospital, the gastroenterology and radiology departments at the Hammersmith Hospital and the clinical geneticists at St George’s Hospital.
We are a specialist treatment centre for adult cystic fibrosis (CF) patients, and we currently look after approximately 170 patients.
We have five outpatient treatments rooms and five en-suite inpatient bedrooms so all care is provided on the same unit. We have dedicated car parking opposite the unit.
When:
Consultant-led outpatient clinics usually occur every four months, or more frequently if required. These are either in person or over the phone and all members of the multidisciplinary team (MDT - including all the healthcare professionals involved in your care) will participate as required. These are usually held on a Monday, Tuesday, or Friday according to sputum growth and microbiology results.
Arrival:
When entering the CF unit, you will be asked to gel your hands and follow the current infection control procedures, this ensures the safety of yourself, other patients, and staff. We have a strict infection control policy, and you should not come into contact with any other CF patients.
What to expect:
A nurse or care assistant will take your observations; height, weight, and spirometry. You will be asked for a sputum sample so we can check for any bacteria and tailor your treatment accordingly. Each member of the CF team will meet and review you in your room. If you need other investigations, such as blood tests or x-rays, these will also be undertaken at your appointment.
Multidisciplinary and holistic care:
We run a joint CF diabetes clinic once a month where you will see a diabetes consultant and a diabetes specialist nurse in addition to the CF team members. We have several links with other specialties within the hospital, including gastroenterology, obstetrics, surgery, vascular, rheumatology, ENT and radiology departments, to which you can be referred if necessary.
When:
Annual reviews take place so we can explore your health year to year. They usually take place on a Thursday morning typically in the month of your birthday, after being under our care after at least seven months.
What to expect:
You will be seen by the multidisciplinary team (no consultant), who will carry out detailed assessments of your progress over the past year. In addition to the usual clinic investigations, you will also have blood tests, a chest x-ray, an ECG, body composition analysis, an exercise test (if you are well enough to complete one that day) and a glucose tolerance test (if you do not already have diabetes).
Facilities:
Each en-suite inpatient room includes a television, fridge, desk, and wardrobe. You may bring your own game consoles, which will be electrically (PAT) tested before use on the unit. Each room has wireless broadband provided by the charity. We also offer exercise equipment to help you maintain your exercise program.
During your stay:
In addition to care from CF nurses, ward staff, pharmacists, dietitians, and consultants, you will receive physiotherapy twice a day and exercise once a day. This support is designed to improve your physio technique, boost motivation, and address any questions. If needed, meetings with the clinical psychologist can also be arranged.
What to bring:
Please bring all your medications, including your nebulizer machine and airway clearance devices, gastrostomy extension sets, feed, and insulin pens. You may also bring your own duvet, pillow, comfortable clothing, toiletries, and snacks for your room.
Meals:
In addition to the main hospital menu, you can order extra food items at mealtimes and snacks from our snack trolley. Each room has a small fridge, and a microwave is available in the kitchen. You may bring pre-packed, in-date food from home with clear microwave heating instructions.
Visiting:
Visitors are allowed, but please ensure you have time to rest. The timing, frequency, and duration of visits depend on the current situation, so confirm the visiting regulations before your stay. You may leave the unit during your admission, but this must be discussed and agreed with the consultants and nurses beforehand.
If you become unwell in between clinic appointments, you should contact the specialist nurses during office hours on 0300 613 4597 or 0300 613 2619. Alternatively, you can call the ward directly on 0300 613 6661.
If you become unwell out of office hours, please call the unit to inform us but attend accident and emergency as you will be seen by a doctor there. Please inform the staff in A&E that you are a CF patient and ask them to contact one of the CF team.
We are located towards the back of Frimley Park Hospital, opposite Elm Block.
As you drive onto the hospital premises, please continue straight past the main entrance and the A&E department and follow the road around. You will arrive at a barrier where you need to ring the bell and let the security team know that you are a CF patient attending the unit. The barrier will be raised, and you can continue around towards the CFU. It can easily be identified by its' conservatory.
We have dedicated CF parking spaces opposite the CFU conservatory.
We hope that you will find the map below helpful.
Contact
Judith Duguid – CF specialist nurse – 0300 613 4597
Emy Cudiamat – CF specialist nurse – 0300 613 2619
Lani Santos - Inpatient senior sister – 0300 613 3177
CF nurses mobile - 07393 240662
There are two CF specialist nurses in the unit. Judith has worked on the CF unit since 2007. Emy has worked on the CF unit since 2014, four days a week. Both have previously worked with CF patients before becoming CF specialist nurses.
Lani became CF inpatient senior sister in 2019 after working within the hospital as a senior sister for several years.
“We act as an advocate for our patients, their families and a resource for colleagues. We provide support, information and guidance to allow our patients to make informed decisions about their care. We also have expertise in the management of ports, PICC lines and the care of CF related complications.
"We strive for excellence and constantly search out new methods and practices to improve patient care. Our CF specialist nurses and senior sister are active in local and national CFSN groups.
Please contact us or leave a message and we will get back to you as soon as possible if we are unable to answer the telephone.”
Contact
Carolyn Bradshaw (Monday to Thursday)
Carolyn has worked in CF since 2018, having been at Frimley Park Hospital since 2017.
"Nutrition is an essential part of CF care as it has been shown to have a direct impact on lung function. We provide individualised dietary advice and support to all our inpatients and outpatients. Dietary treatment plans are agreed with patients in order to help them to achieve a healthy weight and nutritional status to maximise their lung function. This may include changes to oral intake, initiation of supplements or tube feeding. We work closely with the diabetes team in order to effectively manage patients with CF-diabetes. We also focus on the management of pancreatic enzyme replacement therapy, bone health and fat-soluble vitamin supplementation.
We are members of the British Dietetic Association and Cystic Fibrosis Specialist Dietitians Group, and we regularly attend meetings, study days and conferences.”
Contact
0300 613 2636
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Lisa Johnson (Monday, Tuesday and Friday)
Ann Banks (Tuesday to Friday)
Lisa started working at Frimley Park Hospital in 2011 and since 2014 has specialised in adult CF physiotherapy. Ann has worked as a specialist CF physiotherapist at Frimley Park Hospital since 2014 and has previous experience in CF care at Royal Brompton Hospital as a research physiotherapist.
The CF specialist physiotherapists cover outpatient, inpatient and home care and are supported by a rotational physiotherapist who undergoes training and regular supervision from the CF specialist physiotherapists.
“Physiotherapy is an integral part of CF care. We can provide advice and treatment programmes for airway clearance, sinuses, posture, joint problems, continence, antenatal CF care, oxygen, NIV, and nebulised and inhaled medications.
We believe that the patient is central to their care and like to support you with managing your condition. To do this we have set up a home monitoring service and we will ensure that we involve you in decisions on your treatment, considering your lifestyle and preferences.
We keep abreast of new research and are all members of the Association of Chartered Physiotherapists in Cystic Fibrosis and attend their annual meetings as well as other relevant courses and conferences.”
Contact
Katie Pusey
Katie joined the CF unit in July 2023 where she has continued to support patients with their physical activity goals. Katie offers 1:1 sessions, either virtually, home visits or gym visits and bespoke exercise plans and advice.
Prior to joining the team, Katie completed her degree in Sports Therapy and worked in a private clinic for two years assisting patients with injuries which included rehabilitation and getting them back to where they needed to be. She is also a qualified swimming instructor. Katie enjoys strength training several times a week, a lot of which is based around kettle bell training. She is also enjoys trying out new sports such as Paddle boarding, Brazilian Ju-jitsu, Muay Thia and different training styles such as calisthenics training.
“Exercise or physical activity should be something to be enjoyed by all CF patients and does not always mean you have to go the gym. It can be anything from playing sports, going for a long walk with friends or family or trying out something new that you’ve never done before. There are many physical benefits as well as mental benefits to exercising. It allows you to free yourself from a bad day of work, to burn off some steam, socialise with friends or to feel proud of yourself for accomplishing something that maybe you didn’t initially feel like doing. Physical activity has great benefits for those living with CF and its plays a very important role in maintain a healthy lifestyle.”
More information
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Frimley Park Hospital
Address:
Portsmouth Road
Frimley
GU16 7UJ