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June 2008 - No- 9 Editor -Dr Rachel Evans rachel.evans@swansea.tr.wales.nhs.uk Welcome to our 9th Newsletter, only a month later than planned. 6 monthly newsletters have been introduced in a number of CF clinics throughout Europe, so it's nice to know that we are doing same as everyone else. As per usual we are lacking contributions from you, all contributions to this new letter have come from the CF team. Physiotherapists Hi. It's me Julie today Michele is having a break after our trip to Prague for the ECFC (European CF Conference). More on that later. I know Michele has written before about the importance of exercise but I thought I would get your brain cells working this time. I'd like you to let me know what exercise you do! I don't mean formal school exercise, sport or arranged classes but what do you do that's fun or unusual. My children go to the beach and dig, run Lll and out of the sea or skateboard along the front. Or it could be dancing, kung fu, anything. Let me know on Julie.clarke@swansea-tr.wales.nhs.uk- you could even send me a photo. I'll look at them and put the most interesting- in the next newsletter. The big news for physio from Prague is that Michele will be getting a cleaner for your e-flow membranes to keep them working as speedily as ever. That's all from me I'm looking forward to hearing from you. Julie Dorinda Holiday Time When lucky to be going abroad on hols a letter from the CF team is not always required. On the other hand if travelling to America it is advisable to have some documentation. Travel Insurance remains an expensive item especially when insuring your CF child. There are lots available it would be advisable to shop around. Have a great time. Schools If any of you teenagers would like to visit the Adult CF unit in Llandough prior to your transfer to adult care I would be happy to discuss and take you. We always have a meal on the way home and it's our treat. Ann (dietitian) Salt and fluid intake If you are travelling to anywhere hot this summer or if we're lucky enough to have some hot days here please make sure that your CF child has extra salt to compensate for what they loose in their sweat. CF patients have more salt in their sweat than non CF individuals. For the older child / teenager this can be in the form of salt tablets. For the younger children just add some extra salt to their food. Symptoms of not enough salt in the blood (hyponatraemia) include' anorexia and vomiting. Also ensure they drink plenty of fluids. Ciprofloxacin If you child's prescribed ciprofloxacin during the summer months please remember that it makes their skin more photosensitive (i.e. they'll burn easier in the sun), so please be careful. Trust Merger Since
April
1 st
2008
Swansea NHS Trust
has merged with
Bro Morgannwg
NHS
Trust
to form
Abertawe
Bro
MorgaIlLiwg
(ABM)
University
NHS
Trust.
You
might
have
noticed
the new trust
logo
on the
top of this news letter and
on top of clinic letters. |
European CF Conference
As a team we have just returned from the 31 st
European CF conference in Prague. Lot of research ongoing in basic sciences looking at drugs directed at specific gene mutations which would lead to these cells producing some functioning CFTR (the chloride channel that is defective in CF). Ongoing work on drugs that might improve the salt (sodium and chloride) content of airway surface liquid so that secretions can be cleared easier from the
lungs. You can be reassured to learn that we seem to be doing the same as everyone else with regards to managing our CF patients at present. Our aim like other clinics is to keep our CF patients as well as possible with current management so that they would be able to benefit from any new developments in the future. Fund raising
Many of you continue to raise money for our clinic and for the CF Trust by a variety of ways. Money donated to our clinic fund is used to buy equipment for children with CF
or other long term respiratory Jean Thomas one of our grandmothers who wrote a book "A Pictorial History of Penllegaer" and gave the clinic 50% of the profits; and one of our fathers Mark Thomas who ran the London Marathon and raised £2000 for the CF Trust. Please let us know about your fundraising efforts and we'll include them in our next newsletter. We'll be happy to advertise any fundraising event by putting a poster / flyer on the CF board in clinic. Transition Clinic We have been doing joint transition clinics with the adult CF team from Llandough since April 2005. Up till recently because of the back log of patients we needed to transfer we were only seeing the CF teenager once in the joint clinic before transferring their care to Llandough. Now that we are to up to date we would like to gradually introduce our CF teenagers to the adult team by seeing them in the joint transition clinic a few times in the years leading up to their transfer of care to Llandough. Our usual. age of transfer is between the ages of 16 and 18, exact age varies -between patients and depend on patient wishes, schooling etc. We therefore will start offering appointments to the joint clinic from around the age of 14. After School Clinic We have been thinking of doing an after school clinic for our older patients (i.e. those in comprehensive school) for a number of years but haven't started because of a number of reasons including most of our children saying they prefelTed to 'come to clinic during school time. We would like to revisit this and will be asking you for your views over the next few months. Such a clinic would start late afternoon at around 3.30. E-mail addresses We had a disappointing response to our request for e-mail addresses in the last newsletter. We understand that you all, might not have an e-mail address but for those that do please let us have your e mail address so that we can communicate with you more efficiently. You can either e-mail Rachel (e-mail on top of newsletter) or let us know your e-mail address when you next come to clinic. Next newletter Next newsletter due November/ December 2008. Please send content suggestions or contributions to Rachel. |