"Specialist Feeding Services - Clarissa Martin and Terry Dovey"
About: NHS Wirral CCG NHS Wirral CCG CH41 5AL
Posted by MrsKuchiki (as ),
My son was 3 and due to a lot of medical intervention in his first few years of life, he required a g-tube and so had never learnt to eat properly. There were no services in our own area (North West) and my son's medical team were just relying on him to start school and sit with his peers to learn to eat. This felt unfair since I knew in my heart that there was no medical reason why he shouldn't eat, and at that point school was 18 months away. The medical team understood but their hands were tied as there was no local service. It felt like we were stuck with tube feeding him.
After trying the Graz NoTube Internet Weaning Programme (out of our own pocket) we got our son to start oral feeding however it just consisted of yoghurt and high calorie milk (pediasure plus). He started to maintain his own weight. A few months after the programme however we noticed that his tastes weren't widening; this wasn't just a feeding issue, it was a psychological/behavioural issue too. After doing another internet search I came across the service of Clarissa Martin and Terry Dovey. After speaking to them and explaining our story, we pieced together parts which made complete sense regarding tube dependency and childhood chronic illness. For the first time, someone understood exactly what our fears were and they managed our expectations for the long journey ahead.
At this time our son had just turned 4. Since we were out of area, we applied for CCG funding with the help of our GP and the child care coordinator at the time. Both were understanding and supportive. Our son's story was a rare case and on the basis that there were no services in our area couple with our ineligibility to attend any other UK specialist feeding clinics, the CCG approved funding. We did take the opportunity to explore with the CCG the real implications of tube dependency and it's impact on the child and their family.
So how was the service itself? Well, the results very much speak for themselves. After our first home appointment with Clarissa our son ate for the first time savoury food. It took him 3 hours but he did it. Through an integrative psychological approach, Clarissa and Terry developed an individualised programme for my son to develop himself and his relationship with food. They were incredibly supportive and through this past 12 month journey, our son is now eating a wide variety of savoury foods. He is now truly maintaining his own weight through the food he eats and also he finally has structure and consistency with how we deal with his behaviour regarding food based on traditional family values.
Alongside this, Clarissa and Terry were the first professionals to ask how we were coping as a family. Dealing with our son's poor health and fears of the future were never addressed by our son's medical team. Each person had a role or part to 'fix' but no-one ever looked at us as a whole. Emotionally and psychologically our family was affected and this was very clear to Clarissa and Terry. Alongside our son's feeding programme, they also provided family support on how we all could adapt to our son's change and accept the grief for the 'normal' childhood our son never had. This was a refreshing and holistic approach which really worked to bring not only our family together, but it also helped us move forward towards our collective and individual goals. It felt like we had come out of a very long dark tunnel.
There is no question that this will still be a journey for our son as he still has fears surrounding swallowing large pieces of food so all of his food is semi-pureed. This is something that can be built up in time. The difference is that now we have the skills to deal with our son's fears appropriately and analytically. We are very happy that he is able to go to school with his lunchbox of food crammed full of the nutrients and calories he needs to get him through his busy day. He understands the importance of eating not only for his health, but also because he won't get his pudding if he doesn't! ; )
Our son's g-tube has not been used for nutritional purposes for over 12 months now so we will be reviewing at our next hospital appointment it's removal. This is a huge step and one that we are very grateful for Clarissa and Terry to have given us this. Without their support and guidance, we would not have been able to make these changes. It has been a struggle but sometimes in life, these struggles are worth the fight. We feel proud to have taken on the 'NHS' to have given our son the treatment that he needed and it is something that we would do all over again.
If there is someone reading this who can relate to our story, please contact Clarissa and Terry. Even if you don't access their service, their team may be able to sign post you to appropriate feeding specialist services in your area. Tube dependency in children is a very real and serious quality of life issue. It is every parents right to allow their child to learn to eat (if medically safe to do so) even if the tube will always be needed in some way. Advocates like Clarissa and Terry will drive this philosophy forward and we wish them the very best of luck for the future.