Living with cystic fibrosis

There are many challenges when living with or caring for people with cystic fibrosis.

Help with travel costs to the hospital

Please see patient parking and transport discounts at Southampton General Hospital for information on help with travel costs.

Help with prescription charges

For details on prescription charges, including exemptions, please see NHS Choices' information on prescription costs

Requests for fitness for work certificates (formerly known as sick notes)

If you require evidence of a hospital admission as an inpatient for social security and statutory sick pay purposes, please ask one of the nurses to complete the necessary form which will state admission and discharge dates.

If you are going to finish IV treatment at home, or are not well enough to return to work following an admission or an outpatient appointment, please ask the doctor who is discharging you to provide a fitness for work certificate for the period you are at home and unable to work.

If the doctor has not assessed you they cannot complete a form stating you need time off work. In this instance you should contact your GP to request a fitness for work certificate – you will probably have to be seen and assessed by your GP. Alternatively we would be happy to book you into a clinic to be assessed.

It is best to request a fitness for work certificate at the time of assessment as it can be difficult trying to organise them retrospectively.

Travelling with cystic fibrosis

It is best to discuss your travel plans with your cystic fibrosis team in clinic as early as possible. Each person’s particular circumstances will be slightly different, but early discussion should sort out most problems with the minimum of hassle, although there are circumstances in which it would not be safe to fly at all. Here are some of the things you might want to think about:

Insurance

This is strongly recommended. The expense of foreign emergency health care can be extraordinarily high.

Oxygen for the flight

Because aeroplanes fly at high altitude, oxygen levels in the cabin are lower than air at ground level. As a result some people need supplemental oxygen during the flight. There are national guidelines as to who will and who won’t need oxygen, mainly based on your oxygen saturations in clinic. For those whose oxygen levels are borderline, sometimes an extra test is required, the Hypoxic Challenge Test, which tries to mimic the low oxygen levels experienced during flights. This test also carries a fee as it not directly related to your care.

If you do need oxygen, most airlines will supply this, but many charge for it. In addition, the airline will require your doctor to complete the relevant forms.

Oxygen when you get there

People who are prescribed oxygen are likely to need oxygen during their holiday too. The company who delivered or installed your oxygen will be able to help with making arrangements if you are holidaying in the UK, and may be able to help with destinations further afield too. If there are difficulties with the arrangements, the adult cystic fibrosis team may be able to offer advice.

Travelling abroad

There are several things you need to consider regarding your medicines when travelling abroad.

Medication

  • You should carry a letter with you explaining your condition, and listing all the medications and equipment you need. This is to present to officials such as customs or police officers, should they question the medication and equipment you are carrying. It will also be helpful if you need to see a doctor whilst away. The cystic fibrosis pharmacist can write a letter giving these details that is appropriate to show to officials. If you would like a letter then you should contact the cystic fibrosis office at least 10 working days before you travel.
  • If you routinely begin oral antibiotics when you’re not well, make arrangements to take some with you, just in case. Please contact the cystic fibrosis office at least 10 working days before you travel.
  • You should keep some medication in your hand luggage in case of travel delays (for example in airports) or if your main luggage goes missing. It is also recommended that you take a few extra days medication in case you are delayed in returning home. As the hold of an aircraft can reach temperatures below zero it is advisable that any liquid medications (including nebulised medications and insulin) should be carried in hand luggage to avoid the risk of them freezing.
  • Some medications can make you more susceptible to sunburn and photosensitivity reactions. If you are taking doxycycline, ciprofloxacin or voriconazole then it is highly advisable to avoid direct exposure to sunlight. Cover up as much as possible and use a high factor sunblock, including hands and feet.

Refrigerated medicines

Ideally when travelling with medicines that should be kept in the fridge a cool bag should be used to carry the medicines to try and keep them cool. Some airlines may allow you to keep your medicines in one of their fridges so it is worth asking. Similarly it is worth asking hotels if they would be able to provide you with somewhere you can keep your refrigerated medicines.

However, if this is not possible or is impractical some of the medicines can be out of the fridge for certain lengths of time (although this would be outside of the product’s licence).

  • Dornase can be out of the fridge (up to 25°C) for a single exposure of up to 24 hours.
  • TOBI® pouches (intact or opened) can be stored at up to 25°C for up to 28 days
  • Bramitob® pouches (intact or opened) can be stored for up to 3 months at not more than 25°C.

Vaccinations

National recommendations of immunisation (including the childhood schedule) should be applied to all subjects including those with cystic fibrosis. Before travelling, a vaccination review should be done, and any gaps in the vaccination schedule should be remedied. Patients with cystic fibrosis do not need any additional vaccines when travelling abroad unless travelling to a country where certain vaccines (for example yellow fever, hepatitis A/B) are recommended. Your GP will be able to advise you whether you will require any additional vaccines. Your GP will also be able to give advice on anti-malarials if you are travelling to an area where there is a risk of malaria. If anti-malarials are recommended then either your GP or your community pharmacist should check they don’t interact with any of your cystic fibrosis medicines.

If you have any questions or concerns regarding medicines or vaccines and travelling then please do not hesitate to contact the cystic fibrosis pharmacist.