Message Boards for the CF Trust

Replies: 7 Pages: 1

JamesD

Posts: 3
From: Woking, Surrey
Registered: 08-Dec-2006

Information - help requested
Posted: 08-Dec-2006 13:34

Reply

Dear all,

I have recently been undertaking a work experience project in an NHS trust looking at how we can improve our processes surrounding Sweat Test delivery. This was a gem of a project for me, as i have always had an active interest in CF because of a truly inspiring family friend who suffers.

One of the things i have been asked to do is produce a short information leaflet to be given to parents at the point of sweat test referral, partly to explain our local process and partly to give some information about the test and CF in general. While i can easily supply factual information (i'm a biochemistry graduate), what i am most interested in addressing are the needs of parents/ carers specifically at that point in time.

I was therefore wondering if any of you would mind sharing anything that might have been helpful to you at that time. What information did you feel you needed to know? Anything you were told that was really helpful? Anything that wasn't? Hopefully this way i can produce something useful, rather than just generic.

Many thanks for your time in reading this!

James

BeckySerenDylan

Posts: 146
From: Suffolk
Registered: 06-Nov-2006

Re: Information - help requested
Posted: 08-Dec-2006 15:10

Reply

This sounds a lot like the conference we went to in London a couple of years ago. They wanted parental input on developing information leaflets for parents of babies who had just been diagnosed with CF through the heelprick test.

If you like, you can email me on banderasfan@hotmail.com

I'd be happy to give our experiences.

Becky

JamesD

Posts: 3
From: Woking, Surrey
Registered: 08-Dec-2006

Re: Information - help requested
Posted: 08-Dec-2006 18:17

Reply

That's really kind Becky - thank you!

I've just sent you an email now.

Cheers,

James

MandyL

Posts: 26
From: Lanarkshire
Registered: 06-Nov-2006

Re: Information - help requested
Posted: 09-Dec-2006 11:02

Reply

Hi, it was 9 years ago now that my daughter was diagnosed at age 2. I didnt get any information when she was to go for a sweat test, we were only told that it was for Cystic Fibrosis. I remember my mum saying to me, thats the thing where you pat their backs and i just shrugged it off. I think it would have prepared me more if i was given a leaflet describing the symptoms of CF as when i look back she did have common symptoms that were never picked up on. I think it would also be good to have the cf website on it so that you could search for information on a reliable site such as this one and get great support. If i think of anything else I'll come back to you. x

JamesD

Posts: 3
From: Woking, Surrey
Registered: 08-Dec-2006

Re: Information - help requested
Posted: 09-Dec-2006 16:14

Reply

Thanks Mandy

That's a really helpful insight. This website is a fantastic resource and i'll certainly be referencing it in the leaflet i produce.

Thanks again for your comment!

James

sunseasand

Posts: 74
Registered: 10-Nov-2006

Re: Information - help requested
Posted: 10-Dec-2006 18:28

Reply

Hi, information I needed at the time about the sweat test was how accurate was the result and was there any possibility that it could be wrong.How was the sweat test done and how did they get the results. How long would it take for the results. Who would be doing the sweat test and would they be properly trained to do it acutely. Would it hurt my child. Would there be any follow up sweat test in the future. All these questions I know now but at the time this information is what I needed to understand more about the sweat test.

softie

Posts: 1,070
From: Croydon, Surrey
Registered: 07-Feb-2004

Re: Information - help requested
Posted: 10-Dec-2006 20:22

Reply

Sunseasand, that's an extremely good analysis of the questions people need answered, put very concisely!

Richard.

sally 1

Posts: 128
From: oldham
Registered: 09-Nov-2006

Re: Information - help requested
Posted: 10-Dec-2006 21:39

Reply

I have to say I was so dazed when Tom had his sweat teat (aged 7 weeks) andit was one of a long series of tests that I'm not sure how much I would have taken in. I was in a state of disbelief that anything could be really badly wrong with him at first anyway. I think the leaflet needs to have safe no too scarey stuff at this stage anyway

sal