Exciting Developments for our CMN adult members

This year is a big year for our adult support developments and we are excited to share with you all a little bit about the history of the charity and the plans we have with regards to adult support.

As an adult with CMN, I do understand the need to offer support to all ages. Please let me take this opportunity in explaining how our support structure has developed over the years to what it is today.

In 1997 (when I was 17 years old), Dr Atherton at Great Ormond Street Hospital asked if he could give my family home telephone number to other CMN families he was in contact with. At this point, I was the oldest patient Dr Atherton was aware of with CMN. As calls started to come in, my parents and I decided to hold a support day in Liverpool so families could meet one another for the first time. Dr Atherton also attended this event. It turned out that we only had contact with CMN children at this point as well as one adult from Scotland. Our adult member was an integral part in the development of Caring Matters Now in the early days. For many years, this remained the case. Our support days have been developed over the years to best support the members who were reaching out for help.

In much more recent years, slowly but surely, we have had adults starting to attend our support days. The support days are very much for all ages, as I attend as the adult support contact and also Katie Arends (25) attends as the teenage support contact. On first glance it may seem that the support days are aimed at children, as we have lots of activities for young ages. The activities are in place to free up parents to talk to one another. Dr Kinsler also attends all support days, and she is always keen to talk with adults as well as children.

However, last year, the trustees and I decided that we wanted to expand our adult support. In 2013 we developed an adult online community forum, which we encourage our CMN adult members to join. This is a safe arena to share experiences and support one another. We also emailed all CMN adult members before Christmas, informing each one of the charity’s plans in holding our first adult get together in March 2014. We want to take this opportunity to bring the adults we are in contact with together and listen to what support they would like to see in place. Rather than dictating the support we offer, we want to very much gain an understanding as to how adults would like to see the support develop. This is a very exciting development for Caring Matters Now.

So far, we have 8 CMN adults who have informed the charity of their attendance to the adult get together in March. Within the most recent newsletter (January 2014) and on the CMN website we have included details about this event, so please do take a look and let us know if you (18years+) are able to attend.

As an adult with CMN, I am sure you can understand that my main goal is to offer the best support we can to all ages. For many years, myself and one other CMN adult were the only members of Caring Matters Now. It has taken time for our adult membership to grow in number and I am so pleased that we now have enough of a number to hold our very own adults support get together.

So here’s to a good year!

Jodi Whitehouse
Adult Support Contact