Annual Assessment is a yearly review to assess in detail your health status.
In preparation for your annual assessment you should:
Annual assessment includes:
Typically at annual assessment you don't meet a member of the medical team unless you are unwell in some way on the day. After annual assessment we will arrange a date with you to return to a clinic appointment (approx. 6-8 weeks after your annual assessment) for review of your results where you will meet the team again and also the CF registrar or the CF consultant.
All outpatient reviews including scheduled CF clinic , annual assessments or reviews outside of these appointments take place in the Adult CF day centre. The day centre which is located in the ambulatory care facility, has 5 ensuite review rooms and a fully equipped gym. There is an air filtration system in each room that sees 12 air exchanges occurring per hour along with a UV lighting disinfection system that is turned on for a period overnight to disinfect all solid surfaces in the room.
Our scheduled CF clinics run every Wednesday afternoon.
We will make contact by calling or texting you 2-3 days prior to your clinic appointment to confirm your attendance and to allocate you a time to come to clinic. Your time for clinic may differ from the time you received on your posted clinic letter as we rearrange times more appropriately nearer the day of the clinic so as to reduce cross infection risks to all patients attending. We will try to facilitate your time needs as much as possible. We ask that you text or call us when you have arrived on the hospital grounds/carpark so we can allocate a room for you to go to directly. We do not encourage you to wait in the waiting room in the ambulatory care facility unless it is advised by one of your team.
At your clinic appointment you will be reviewed by the the CF nurse specialist, CF physiotherapist, CF dietitian, CF pharmacist, and the CF registrar or consultant.
Outside of scheduled reviews, if you need a review by a member of the CF team, please don't hesitate to contact the CF nurses on 0872241824.
Should you need to access our CF team for a more urgent review contact the CF nurses by phone on 0872241824. Reviews of this nature also take place in the Adult CF day centre during day centre working hours. We will facilitate you as soon as possible based on the urgency of your issue. If the matter is an emergency you may be advised to call emergency services where you will then be brought directly to the emergency department in CUH where we will meet you. If you do not live locally, you will be brought to your nearest Emergency department. Outside of the working hours of the Adult CF day centre, all urgent reviews will be through the emergency department if the issue is too urgent to wait for review the following day in the day centre. From there if you need admission, this will be worked on as speedily as possible to ensure that you are in the emergency department for as little time as possible.
The Cystic Fibrosis Physiotherapy team are here to advise and assist patients with airway clearance techniques and exercise.
Chest physiotherapy plays a very important role in the overall respiratory management of CF. As physiotherapists we aim to provide each patient with an individual physiotherapy programme. This programme consists of airway clearance and exercise.
We can advise you on your inhaled and nebulised treatments and will carry out any test doses of new inhaled and nebulised medications along with the Clinical Nurse Specialists in Cystic Fibrosis. We also offer exercise rehabilitation programmes to both pre and post lung transplanted patients. We can help with musculoskeletal problems by direct exercise prescription or by referring you to your local Musculoskeletal Physiotherapist for further assessment and treatment. You will meet a member of the adult Physiotherapy Cystic Fibrosis team at your annual assessment, regular clinic visit, on review of new modulator therapy and as an inpatient. If you have any issues and would like to be reviewed by your physiotherapist you can contact us directly on 086 0081806.
International data has clearly demonstrated that up to a third of patients and/or their caregivers may experience anxiety and/or depression. It is critical as part of standard CF care that we offer clinical psychology support for patients with CF.
Currently, we have limited access to hospital/day centre based psychology sessions for a small number of our patients. This is additionally supported with individual community based sessions scheduled through the CF MDT for a further group of our patients. Emergent crisis interventions may be facilitated in collaboration with our liaison psychiatry service at CUH.
In keeping with the CF model of care for Ireland document 2019, we are actively engaging with the hospital management team at CUH to radically develop this service with the provision of a full time psychology post as part of our MDT.
Nutritional management is an essential part of MDT care for adults with Cystic Fibrosis (CF). The main goal is to achieve good nutritional status and to maintain this throughout life. All people with CF require regular evaluation of nutritional status and body composition. Reliable and sequential measurements of growth and nutritional status are an essential part of the clinical assessment of health status in CF. Poor growth and malnutrition contribute to increased mortality and morbidity in CF and have a long term impact on lung function. A high energy, high protein diet has been a standard part of the nutritional management of CF. This approach has resulted in improved nutritional status and survival. However, recently with modern management of CF, overweight and obesity have become a problem for some. This group will need advice to adopt healthier eating principles in order to lose weight or prevent further weight gain. Our patients attend for annual assessment, 3 monthly clinics and can be reviewed on a drop in basis as required. Some patients are also admitted to CUH and are seen throughout their inpatient stay. The following are nutritional issues which are addressed
You can contact the CF Dietitians on: 0860463459
With the explosion of new therapies in the area of CF over the last 10 years, and in particular the roll out of CFTR Modulators, the importance of a designated full time CF pharmacist cannot be overstated in a modern day CF MDT. We are delighted to announce that recent funding has been provided by the HSE for a full time adult CF pharmacist to join our MDT. We hope to have a person in-post by the end of 2021.