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· 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.
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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.
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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
- 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.
- Remember to keep doing regular treatments (no matter how much fun
you are having)
- Be careful when out in the sun, many medications will cause to you
be photosensitive and therefore burn far more quickly than usual.
- Take your salt tablets
- If you are immunosupressed, take advice from your consultant or transplant
nurse and be particularly aware of food and water safety.
- 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
- 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.
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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.
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