Cystic fibrosis services at the Northern General Hospital
- Clinics are Monday morning, Wednesday afternoon and alternate Friday afternoon (this clinic is for specific organisms).
- Clinics keep patients who have and do not have bacteria separate to keep everyone safe.
- Your follow-up clinic appointment will either be sent in the post or handed to you before you leave.
- Please keep to your clinic time. If your have a bacteria, then you must be seen at the end of the day so you do not risk passing it onto someone else. If you arrive before your appointment you will be asked to leave and return at the appropriate time.
- If you arrive late for your appointment, it may not be possible to see you for practical or infection control reasons to protect you or others.
- When you arrive at Brearley Wing outpatients, please remember other non-cystic fibrosis clinics will be running at the same time. There will be other people, usually older individuals waiting to be seen in clinics.
- On arrival at Brearley outpatients please go to the nursing staff reception window to book in.
- Brearley Wing reception staff will show you to your consulting room.
- Clinic staff (not the cystic fibrosis team) will weigh you. Sometimes you will also have your height measured.
- Your lung function will be measured in your consulting room.
- You will be told where the toilets are.
- In clinic there will be a doctor, cystic fibrosis nurse, physiotherapist and dietitian.
Dietetics and gastrostomy care
- The dietitian will change mini or mic-key buttons in clinic.
- The dietitian will manage and hold all supplies (such as buttons, extension sets) and if you have a problem with over granulation or a sore gastrostomy site or need extra supplies please contact them on: 0114 271 4162.
- Parents who have been taught to change mini or mic-key buttons can continue to do this. The dietitian will routinely check your technique at the 1st button change once you have transferred.
- Cystic fibrosis patients with diabetes will be seen in diabetic clinics at the Northern General Hospital (same clinic area as routine cystic fibrosis appointments).
- These clinics run 1st Wednesday of each month and are attended by a diabetes nurse specialist and a diabetes consultant.
- The diabetic team can be contacted through the cystic fibrosis team.
- A cystic fibrosis nurse and dietitian will be available in this clinic as well.
- If you are diabetic, please bring your blood glucose monitoring equipment to every clinic, as results can be downloaded and information used to support you in managing your diabetes.
Home intravenous (IV) antibiotics
- The adult team use Baxter Homecare for home intravenous antibiotics. They currently use the intermate device.
- If you are a parents or carer who administers home intravenous antibiotics, we will check your technique 1st course of treatment in adult services.
- The 1st dose of home intravenous antibiotics will be given in hospital.
- Hospital drug supplies will be used for the 1st few doses of home intravenous antibiotics and the nursing staff will teach your parent or carer how to do this.
- Additional blood tests may be taken at the start of treatment and half way through.
- All patients are reviewed at the start, mid way through and end of a course of intravenous antibiotics.
- We do annual reviews which will be similar to what you are used to but will be tailored to you to keep things simple. We do not usually have a formal feedback clinic but you will be advised of abnormal results or problems or changes to your treatment.
Advice and out of hours
- If you are unwell or need advice, please contact the cystic fibrosis unit between 8am to 4pm, Monday to Friday on: 0114 226 6281.
The telephone will be live between 9am to 10am and 2pm to 3pm. Out of these hours please leave a message and the team will get back to you.
- If you need to be seen the same day please ring the above number before 10am if possible.
- If you need urgent advice out of hours (night, weekends or bank holidays), contact the cystic fibrosis ward on 0114 226 6580.
- If you are unwell out of hours and need to be seen, go to your local A&E department, tell them you have cystic fibrosis and ask them to call the cystic fibrosis consultant on call who can provide advice over the phone if needed.
- If you need to be admitted to Northern General Hospital you may not go straight to the cystic fibrosis ward (if beds are not available).
- Cystic fibrosis patients with specific infections (such as Burkholderia cepacia and non tuberculosis mycobacterium abscessus) will be admitted to the ward Brearley 2.
- Entenox is not available in the adult cystic fibrosis service.
- On regular clinic days there is a cystic fibrosis social worker available to give advice and support on a number of topics. If you wish to see the social worker please let the clinic staff know in good time.
- If you would like to see or meet a psychologist, please let anybody on the cystic fibrosis team know and they will arrange for this to happen. It might happen during a clinic appointment, or it might be arranged separately.
- You may be reviewed by the cystic fibrosis nurse specialist in clinic rather than the doctor.
- All staff wear gloves and aprons when seeing patients as part of general infection control measures.
- Some staff wear uniform in clinics such as nurses, dietitians and physiotherapists.
- The doctor may not always listen to your chest or your stomach but will do so when clinically appropriate.
- Port-a-caths are flushed every 4 to 6 weeks in clinic
- If you need medicines supplied by the hospital (such as nebulisers and occasional other tablets) please ring the cystic fibrosis team before your next appointment and a prescription will be arranged.
- Please note, the GP is responsible for most of your routine medication.
- When in clinic, if you are started on a new medicine the team will arrange for this to be delivered to the consulting room before you leave. You will not usually have to visit the pharmacy department.
- If you need to change your clinic appointment please ring: 0114 226 6281 and follow the instructions. If you need to change your annual review appointment please ring: 0114 226 6281 and leave a message.
If you have any questions or concerns please call 0114 226 6281 between 8am to 4pm, Monday to Friday.
Out of hours, please call 0114 226 6580.
If you are unwell out of hours and need to be seen, go to your local A&E department, tell them you have cystic fibrosis and ask them to call the cystic fibrosis consultant on call who can provide advice over the phone if needed.
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Please note: this is a generic information sheet relating to care at Sheffield Children’s NHS FT. These details may not reflect treatment at other hospitals. This information is not intended as a substitute for professional medical care. Always follow your healthcare professionals’ instructions. If this resource relates to medicines, please read it alongside the medicine manufacturer’s patient information leaflet. If this information has been translated into another language from English, efforts have been made to maintain accuracy, but there may still be some translation errors. If you are unsure about any of the guidance in this resource or have specific questions about how it relates to your child, always ask your healthcare professional for further advice.