CHERUBS UK - OUR NEWSLETTER

 

We aim to produce a twice-yearly newsletter to give further information.  If you would like to receive the newsletter or offer an article for inclusion in the next newsletter please e-mail Cherubs at:

brenda@uk-cherubs.uk.org

Newsletter Archive

Click here to see Newsletter No. 1 (Winter 2004)

Click here to see Newsletter No. 2 (Summer 2005)

Click here to see newsletter No. 3 (Winter 2005)

Click here to see newsletter No. 4 (Summer 2006)

Click here to see newsletter No. 5 (Winter 2006)

Click here to see Newsletter No. 6 (Spring 2007)

Click here to see Newsletter No. 7 (Summer 2007) *(This document is in Microsoft Publisher format)

Click here to see Newsletter No. 8  (Winter 2008) *(This document is in Microsoft Publisher format)

Click here to see newsletter No. 9 (Summer 2010)

 

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In November 2005, Cherubs UK sent all of its members a survey, in order to find out more about everyone's experiences of CDH.  The results are printed below.

 

Cherubs UK Survey 2005

"Please help!"

We would like to find out as much as we can about Cherubs members.  We are asking questions so that we can find out what issues people are facing, and so that we will know how best to help.  Even if you are not interested in anything that Cherubs does, then please tell us so.  Negative feedback is as useful as positive.  All completed surveys will be treated in the strictest confidence and we never give your information to anyone else.  You do not have to give your name, and if there are questions that you do not wish to answer then please leave them blank.  It would be really useful if you could find the time to fill this in and post it back to us (we have enclosed a stamped addressed envelope) - it will help us to help others affected by CDH. 

20 Completed. 80 sent out

  

• What county do you live in? 

Often misread as COUNTRY but of those who read correctly, many areas represented eg W Yorks, Kent, Lincolnshire, Dorset, Warwickshire etc 

• How did you hear of Cherubs UK - internet search engine, referral

from doctor, poster in hospital? Please be as specific as you can.

 15% from hospital

85% from internet search (of which 4 mentioned going through USA site) 

• Do you have internet access at home? Elsewhere? Not at all?

              100% have internet access either at home or at work or both. 

• Are you still pregnant with your CDH baby? 

No-one still pregnant 

• If not, which hospital did you have your baby in? Did you then

have to transfer to another hospital?

Wide range of hospitals.  40% transferred, 60% didn’t. 

• Did your baby survive? 

70% survived, 30% didn’t. 

• If your baby survived, does he or she have any ongoing medical

needs? How old is he or she?

 Wide range of ages, from little babies to 14 mths to 4, to 8, 9 yrs.

2 adult survivors – 1 of 28, 1 of 40.  Medical issues:

Asthma 40%

None 15%

Feeding issues 10%

Mild reflux 10%

High frequency hearing loss, adhesions / blockages, 1 leg        shorter than the     other, vomiting, umbilical hernia, groin hernia – 5% 

• Do you have any other children? 

35% have older children 40% have younger children, 15% have none. 1 set of twins of whom 1 died of CDH and one was healthy.

 

• Are you in contact with any other organisations, e.g. Child

Bereavement Trust or Contact a Family? 

Sands 5%, Patches 10%, Contact a Family 5%. No other support groups 80% 

• Do you find the Cherubs UK newsletter useful? What would you

like to see in it? What aspects do you particularly like or not like? 

“nice to know we are not alone”

“no-one else understands”

“Positive stories make me sad as my baby didn’t survive”

“Possibly include interviews with surgeons”

100 % of the responses were very positive about the newsletter. 

• Have you ever visited the Cherubs UK website? How many times? Do

you find it useful?  Why / why not? 

“the website stopped me from going mad” “very useful”

85% had visited the website, 15% hadn’t. Of these who had, 100% were very positive about it. 

• How can Cherubs UK best help you? 

"collate data about CDH" "Push for further research"

"notify all hospitals" "new medical advances" "continue to offer support and advice" 

• Would you like to volunteer to help Cherubs UK? If so, please

fill in your contact details below. 

            70% of people who replied volunteered to help.

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