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Living with cystic fibrosis

Help with travel costs to the hospital

For detail on patient parking and possible travel discounts please see information on the parking charges page.

Help with prescription charges

For details on prescription charges, including exemptions, please see NHS website for information.

Fitness for work certificates (formerly known as sick notes)

If you need to show that you have had an inpatient stay for social security or sick pay purposes, please ask one of the ward nurses to complete a form which will show the dates you were in hospital.

If you are having IV antibiotic treatment at home or are not well enough to work, please ask the team to provide a fitness for work certificate.

If the doctor has not assessed you they cannot complete a form stating you need time off work. In this case you should contact your GP to ask for a fitness for work certificate. Alternatively, we would be happy to book you into a clinic to assess any problems related to your CF.

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

Travelling with cystic fibrosis

If you need help with travel it is best to discuss with the team as early as possible. Here are some things you may want to think about.

Insurance

This is strongly recommended. The cost of emergency health care abroad can be extremely high.

Oxygen for the flight

Because aeroplanes fly at high altitude, oxygen levels in the cabin are lower than at ground level. Because of this some people may need oxygen during a flight. If your oxygen levels in clinic are borderline for needing oxygen, you may need an extra test called a hypoxic challenge. This test carries a fee.

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

Oxygen whilst on holiday

People who are prescribed long term oxygen are likely to need oxygen during their holiday too. The company who delivered or installed your oxygen should be able to arrange this for you in the UK and may be able to help with oversees holidays too. Please contact the company directly and if there are difficulties, the adult cystic fibrosis team may be able to offer advice.

Medicines 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. You may need to show this to officials such as customs or police officers. 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. Please make sure you contact us at least 10 working days before you travel.
  • If you routinely begin oral antibiotics when you’re not well, make sure to take some with you. Please contact the cystic fibrosis office at least 10 working days before you travel if you need help with this.
  • 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. If you are taking doxycycline, ciprofloxacin or voriconazole you should avoid direct 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 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 before you travel

You will need the same vaccinations for traveling abroad as other people. 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 before travelling then please feel free to contact us.