Useful Stuff

 

· Benefits
· Fertility, Contraception and Sexually Transmitted Infections (STI’s)
· Holiday Insurance and Other Advice
· Cystic Fibrosis and Late Diagnosis


Benefits

Do you qualify for benefit or do you think you should be getting more?

Try . . . .


The Social worker at the Hospital you attend.  If you have no luck there, try the Benefits advice line - 0845 859 1010

Our Suggestion to You:

If you have undergone a transplant or the reasons that you were granted your benefit have changed, then make contact and tell the benefit agency by using the address or number on the top of any letters sent to you by your benefit office.

It is probably best to do this when nearing the end of the period of recovery that your consultant has told you to expect.  For example, If you have undergone a heart and lung transplant and your doctor estimates it will take about three to six months before you will be able to function as normal, think about contacting your local authority towards the end of this recovery period.

If the benefit people find you have been claiming benefit that you no longer qualify for, they have the powers to make you pay back all the money they feel you were not entitled to.

Some more helpful numbers:

Welfare grants help line
- 0845 859 1020, Information about how to access small grants.

Back to top


Fertility, Contraception and STI’s

Fertility

CAN AND SHOULD I HAVE A BABY?

Most women with CF do not have a problem falling pregnant. However, approximately 98% of men with CF are unable to have children without fertility assistance.  A minority of men will be fertile but this cannot be assumed without testing.

Most men are disappointed and saddened when they hear they cannot have children without assistance. However, with certain procedures such as IVF, it is still possible for men with CF to father a child.

Our Suggestion to You:

Enquire at your own hospital:  Some hospitals will have a specialist nurse who can deal with all your questions and possibly put you in touch with others who have been through fertility treatment.  Your consultant can advise on tests and individual cases.

If you are a female with CF then you might like to take a look at the ‘My life My Story’ page for one experience of a CF woman having a baby

Contraception

For information on the contraceptive pill, contraceptive implant or info and advice about sexual health -

Family Planning Association (FPA) help lines - UK- 0845 310 1334

Northern Ireland - 028 90 325 488 (Belfast) or 028 71 260 016 ( Derry)

Scotland - 0141 576 5088

Or visit - www.fpa.org.uk

Our suggestion to You:

If you are a transplant patient and you are worried about drug interaction with either the pill or morning after pill but are worried or embarrassed to talk to your consultant you can do one of two things.  You can ring NHS Direct on 0845 46 47.

Or contact a member of the pharmacy that you feel you can talk to, either at the hospital you attend or the place your drugs are dispensed at home, and ask their advice.

STI’s

Our Suggestion to you:

If you are immunosupressed then any STI could have serious implications.  If not dealt with promptly it could have a serious effect on your health and fertility, and will take a lot longer to get rid of.  You must tell whoever you are seeking treatment from about your transplant and the medication you are on.

For information on sexual transmitted infections: FPA – 0845 310 1334

For confidential info: 0800 567 123

Visit the websites -

www.playingsafely.co.uk
www.ssha.info

Young people under 25 can also call - Brook on 0800 0185 023
or NHS Direct on - 0845 46 47

Fact sheets can be downloaded from the CF Trust website: www.cftrust.org.uk

Or ask your G.P or CF nurse/ Consultant for information.

 

Back to top


Holiday Insurance and Other Advice

Our Suggestion to you:

Whether you are a CF patient or a transplant patient you will probably have some difficult finding a quote within a reasonable price.  For people with CF, the reason you will be paying a slightly higher price is because the quote reflects the higher risk of your getting ill on holiday.

For transplantees the risk, and therefore expense of the quote, reduces the longer you have had your transplant and the fewer complications you have had.

Below are some companies who are used to dealing with clients who have some medical problems and may give you a better quote.

Do ring as many as you can to make sure you are getting the best quote for you.

All Clear Plus : 0870 777 9339
City Bond: 0870 444 6431
Direct Travel: 01903 812345
Free Spirit: 0845230 5000
J&M Insurance
Services: 0207 446 7626
Medicover: 0870735 3600
Freedom: 0870 774 3760
Bupa Travel Cover: 0870 585 8585
Insuremore Travel
Insurance: 0870 054 0162

For CF patients specifically:  

Try this webpage for information on CF centers worldwide try . . . www.access.ch/cfaddresses/current/toc.htm

Or ring the CF Trust on - 020 8464 7211

Fit to Fly:

I if you are concerned about your health and coping with a flight then talk to you consultant and ask for a fitness to fly test.  These are done in the physio department and involve several breathing tests that will determine how your lungs are likely to respond to things such as cabin pressure during a flight.

Oxygen: If you will need oxygen on a plane journey try The British Lung Foundation as they have a list of airline oxygen policies.

www.lunguk.org

www.lunguk.org/airline-oxygen-policies.asp

If you are diabetic:

Often carrying and storing insulin when abroad or on the move can be a problem. The best solution to this can be found on the FRIOUK website which sells products such as wallets to carry your insulin in that keep it cool for many hours due to a unique cooling system. Visit: http://www.friouk.biz/uk/catalogue.php

ON HOLIDAY SUMMARY

  1. Always take a letter from your doctor which you may need to show at customs if you are carrying lots of medication, needles and syringes.
  2. Remember to keep doing regular treatments (no matter how much fun you are having)
  3. Be careful when out in the sun, many medications will cause to you be photosensitive and therefore burn far more quickly than usual.
  4. Take your salt tablets
  5. If you are immunosupressed, take advice from your consultant or transplant nurse and be particularly aware of food and water safety.
  6. Make sure you have enough of all your meds, well in advance of the date you are leaving and always take a bit extra just in case
  7. If you have any additional questions concerning safety and traveling, feel free to E-mail us. Some of us are keen travelers and will be happy to share any experiences and advice we can.

Back to top


Cystic Fibrosis and Late Diagnosis

More and more people are being diagnosed later in life with Cystic Fibrosis which can be a huge shock especially if the only impression you have of the disease is how it affects children and leads to early death.  Fact sheets and information can be found on the CF Trust website: www.cftrust.org.uk

“Growing older with CF” - A handbook for adults can be ordered from the CF Trust.

 

Back to top