Wednesday, 22 April 2009

Letter to the editor

Well, I haven't calmed down any from yesterday but I do want to thank all for you who have left messages of support, I really appreciate it.

I have typed out the article that they printed in the paper for you.... although some editions had an abbreviated version which didn't include the website address or even the name.

Little Willow Robertson endures painful treatment 3 times a week. The four year old's condition leaves her in distress and discomfort. It is an ordeal her parents find difficult to cope with,  so much so that they decided to set up a support website for parents of children with additional needs and today Debbi Robertson, 36 and her partner, offshore worker, Graham Brockie, 52 both of Portlethen have gained charitable status for their efforts.
The extra special parents website now has members in Australia, America and Namibia as well as in the north east
Willow was born with a bowel condition which requires the distressing treatment every 2 days, Debbi and Graham, who knew nothing of the condition before Willow was diagnosed, were so frustrated they set up the online support group. Debbi who is also mum to Scott 9 and Faith 2, said "it is nice to be able to speak to other families and see how they manage"  "the website is for parents who have kids with any additional needs - from food intolerance to asthma and terminal illnesses" 
 Debbi said it is frustrating and distressing for parents when they first have to deal with their childs additional need,  she said "we set it up initially because we had never come across Willow's condition. we wanted to to speak to people who understood what we were talking about and it snowballed from there"  "the procedure Willow has to go through is distressing for her but its distressing for parents as well"
Debbi is committed to moving onwards with the site and wants to create an easy source of information for parents,  she said "its great to get recognised by receiving charitable status. it means we can hopefully take on bigger projects in the future" The charity's website is www.extra-special-parents.org

So here is the email I have just sent the editor...

Mr Bates,
I feel I have had to write to you regarding the article in Monday’s Evening Express by Catherine Shanks about our charity Extra Special Parents.
I was distressed to find that there were a large number of inaccuracies and omissions:
• My daughter’s name is Willow BROCKIE not Robertson, Robertson is my married name and as I have been separated from Mr Robertson for many years and he is not Willow’s father – this has caused a lot of unnecessary anguish and embarrassment.
• My daughter does not “endure painful treatment 3 times a week” we have to perform a bowel washout procedure every day as she has limited bowel control due to her congenital condition, which is uncomfortable for her, and which both her and we find distressing as it is an obviously invasive procedure.
• We did not start the website because we find the procedure “difficult to cope with” , we started the website because we wanted to talk to other parents who had experience of Imperforate Anus, the condition Willow was born with as it is not a common condition, and also because my son has Autistic Spectrum Disorder. We felt very isolated and worried about what the future would hold.
• We did not gain charitable status “today” we gained the charitable status from OSCR in January.
• We have members across the whole of the UK and worldwide, not just “in Australia, America and Namibia as well as in the North-east”
• The website isn’t just an “online support group”, it is an information-sharing and signposting website as well – we provide information on benefits and how to claim, signposting for financial, emotional and practical support as well as a place to swap practical ideas, share experiences. We put families in similar situations in contact with each other. And many members make use of the “members lounge” on the forum to relax and ‘get away from it all for a while’.
• I feel the statement “the website is for parents who have kids with any additional needs – from food intolerance to asthma and terminal illnesses” is very misleading. I tried to get across the point that we include needs like food intolerances, diabetes and asthma as these are not often recognised as disabilities, but can be very debilitating and stressful for families. The point is the website is open to parents and carers of children with any kind of additional need, including those with hidden disabilities, physical and mental conditions as well as those with “traditional” recognised disabilities.
• The statement “ wants to create an easy source of information for parents” also suggests the website is still being constructed which is definitely NOT the case, The website is now over 3 years old and holds a vast amount of information already, and is well established. As I stated to your reporter, being awarded charitable status means the following: we now have more doors open to us for raising funds which will enable us to promote the site further both locally and nationally; to also try to raise awareness of various issues affecting families of children with additional needs for instance one very topical issue locally is the cutting back of support staff in Aberdeen city’s schools which will have a direct effect on children with additional needs. According to the Education (Additional Support for Learning) (Scotland) Act 2004, Every education authority must—(a)in relation to each child and young person having additional support needs for whose school education the authority are responsible, make adequate and efficient provision for such additional support as is required by that child or young person, and (b) make appropriate arrangements for keeping under consideration— (i) the additional support needs of, and (ii) the adequacy of the additional support provided for, each such child and young person.
• I believe that in other editions of the Evening Express (e.g. the city final edition) the website name and address were also omitted. Which would render the article a complete waste of space.
• Finally the photograph used was 2 years old and in my opinion (and also of the opinion of several local members and friends) was hardly conducive to attracting new members, in fact I would probably say it has had a detrimental effect. The photograph was taken in July 2007 in connection with a story that was run about my partners bank card being cloned, and the photographer had asked me to look angry and fed up – not the image we had hoped to portray of a family friendly support website. A far better one to use would have been one from this collection http://3276.e-printphoto.co.uk/ajl/index.cfm?z=z&y=y&p_id=7637821&c_id=8402&action=view which is also more recent.

We have had super coverage from Aberdeen Journals in the past, as well as from the BBC, magazines and even The Sun and I am very saddened and upset by the possible harm this coverage has done our website. Needless to say we have had no extra hits or new members as a result of your article.
I look forward to hearing your comments in due course.
regards  

Debbi Robertson
Secretary/Treasurer
www.extra-special-parents.org
www.espkids.org
Charity No. SC040185

Edited to add.... I have received a prompt reply from the editor who has said he will investigate this fully before he replies to me fully and the reporter is not in the office today but he'll get back to me as soon as possible

And by the way, isn't that the most hellish photograph you've ever seen?? my BFF told me I look like I want to batter someone

9 comments:

FionaJ said...

Well done Debs, glad to see he acknowledged your email so promtly, and yes the photo you suggested of the whole happy family would do your cause so much good unlike the one he printed, think i need to join your club as Adam has congenital hypo thyroidism, he is one in 4000 babies born in Aberdeen with this condition, i onlyh know of one other parent who has a child with this condition and they are in Shetland, he also has asthma a side effect of his condition, although we weren't told that at the time.

FionaJ said...

Quick update Debbi, been over and joined up. xxxxx

Manda said...

Well lets hope he does what he says! What with him being such a pleasant chap!

Kath said...

well done you and I see it as a positive step that he has replied so quickly...fingers crossed they will print an apology and the proper story..
Hugs Kath xxxxx

Macpurp said...

lets hope he dose what he says....
now stepping back from the scary wifie in that photo!!!!


xxx

scotspanda said...

woohooo girl power!!! well done on putting your points accross so well hun, and I really hope you get a positive outcome from it :o)

lotsalove

Amanda xxx

dawnmarieg said...

Lol, you look like you would fight goliath in that photo, I'm a bit scared to be honest. But well done you for sticking up for what you believe in, papers get away with far too much these days and this is such an important story so it should be done right, parents of special needs kids are more or less left to their own devices and a place where they can find out information about benefits and can share their worries is invaluable. Hugs Dawn Marie.xx

chelemom said...

Good for you for sticking up for your beliefs! And good for you for starting this website. I am going to hop on over right now. My daughter is mentally and physically challenged.....no diagnosis officially. Which is difficult because she is now 14 and we thought we would have some answers by now. My hats off to you!

Max said...

Hope the editor reprints the article with the correct information and details ... and an apology wouldn't go amiss either.
Good luck Debbi

Luv'n'Stuff
Max
xx

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