Last June, we decided to instigate a focus group which would bring parents together to discuss early years issues.

The objective would be to come up with guidelines / recommendations which existing parents would make, which ideally, could help ease new parents into the ‘dos and don’ts’ of caring for their new baby’s needs and ensuring that they access the correct developmental opportunities. A “how to guide” in essence.

We invited parents to participate and I began looking around for someone to facilitate the group and help with the compiling of a report on the findings.

It wasn’t as easy as I thought to find some one with experience of dealing with a group of this non-commercial format. So that’s why if you put your name down for the group in June it took until last weekend to happen. But that there was such a gap from conception to delivery, I believe, added to the success of the planning and execution of the project.

Because in that time we found the perfect partners in Price Waterhouse Coopers.

Last Saturday morning (30th Jan) , they opened their hi-tech offices in Dublin city centre to the 19 parents who took part in our focus group and leveraged the power of their ‘Think Tank’ technology to get the best from the session.  All on a pro-bono basis.

The idea was to break the morning into two parts. The first aiming to get parents to outline the challenges they had faced as new parents and the second, to get them to come up with solutions as to how parents of the future could overcome these. Working in twos, our parents (Mums and Dads) discussed their thoughts across a range of problems and inputted these challenges to laptops with all the info visible on the screens in the room.

The group was facilitated by Bob Semple whose skill and experience in handling groups masterfully and with great sensitivity was evident and ultimately responsible for making a good morning great. A lot was covered and I know that it brought many parents back in time to when they first coped with their new baby but I believe we got a enormous amount of relevant information which will be compiled into a guide for new parents. I know it will be worth it.

However, back to reaping the reward as I mentioned at the outset, it allowed me to hear some of the main concerns and worries which parents are confronted with and has sparked great food for thought as to how we might work to provide solutions to the shortcomings that are out there (something we are continually striving to do).

Would you like to know what some of these are?

•  A feeding consultant (SLT with specialist knowledge of feeding issues) who might operate a helpline, develop downloadable podcasts demonstrating methods, etc.
• Instigation of a consultative process which would mean that no service provider could retract delivery of service because parents are sourcing similar therapy privately. This to be done by investigating the child’s constitutional right to a state-offered service.
• Better and more regular update for GP’s, public health nurses on Down syndrome and its medical complications
• Establishment of a register of GPs, paediatricians who have an interest/expertise in caring for children with Ds
• More information on useful aids / terms relating to the condition

If you have any further suggestions, I’d love to hear them.

Finally, thank you to all of the parents who contributed and my special thanks to those of you who offered help and support in a variety of ways to the work of Down Syndrome Centre.
 

© Sheila Campbell, DSC 2010

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