Too Many Cooks Spoil the Broth! – Week 9

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Let’s get cooking!

Michael’s paediatrician had become very aware at the point he got his NG tube, that we spent lots of our time at lots of appointments. Three a week was standard (often more than that). Tons of money thrown away on petrol, car parking and hospital coffees; but much more important than that, time away from family life and toddler paced days. (Not to mention the cost to the NHS!)

It was decided when we got funding for Clarissa that these appointments could dwindle down and I was pleased the paediatrician led on that plan. It gave me one less job to do! When you have a child with special needs, it’s like ‘parenting PLUS’, you do all the mum things, but then you become a PA, a therapist; an advocate and an administrator too. It’s exhausting to say the least.

Pre Clarissa Mike had a team of therapists, dieticians, doctors & psychologists and I spent hours and hours of my life being given suggestions and passed to the next person. We had the label “eating disorder” from Summer 2013, but the treatments available on the NHS (e.g. Messy play, CAMHS and NG tubes) weren’t going to be able to tackle the whole problem. There are only a few psychologists, specialist in children’s feeding disorders in the UK, yet I was being told over and over again that local services could meet Mike’s needs. I knew all along they couldn’t, yet the system made me jump through hoop after hoop, following the treatment pathways already available.

It was an utterly miserable time as it was clear that following this prescriptive model led to a life of tube feeds. It was as if we were just prolonging Mike’s suffering of under nourishment, to the point he could take no more and as Mum it was torment. Mike’s team had no idea how to proceed and nobody  wanted to be responsible for acting, or making a decision, so we were caught in a vicious cycle of  what I began to call “passing the book!”

Amidst all these professionals Mike’s treatments were held up by long-term sickness absence the hospital failed to cover, maternity leave the hospital failed to cover, lengthy honeymoons the service failed to cover and training. It felt we’d start to build a relationship and memento and then all of a sudden be left with nobody, no replacement and no answers. All the while, day by day, Mike got older and the problem got bigger.

Mike needed a specialist assessment and treatment of his feeding problem and that just couldn’t happen via the NHS. No matter how much they tried to persuade me. It reached a stage where the Doctors were saying the best treatment for Mike going forwards, was a gastrostomy and I’m sad to say that Dad and I, started to believe them the more desperate we got.

A gastrostomy would have removed the need for any oral eating. We could have allowed Mike his mouse sized nibbles forever and been comforted in the knowledge that he would be getting his calories and nutrition through a feeding tube, inserted by an operation, directly in to his tummy. Calorie problem fixed  but feeding disorder still untreated. The worry hanging over us all, was that by doing this, given the nature of Mike’s problems; he’d never learn to eat and become tube dependent . Nobody had an answer for that bit, so they just talked a lot about it, had plenty of meetings and passed the book some more.

We’d found Clarissa and Terry, back in April 2013 and the application for funding had gone via our GP to our local Clinical Commissioning Group (CCG) immediately after. The application was supported by a report written by Mike’s Speech and Language Therapist, Rebecca Howarth. Nobody (including the GP!) really understood the process involved, so it left me caring for a sick child while navigating a really complicated system.  Doctor’s puzzled at how this treatment was different and how it could work. It was put to me that no matter what we did, “we couldn’t fix Mike” and it left us so confused.

(I guess it’s worth explaining at this point, Midlands Psychology and Clarissa Martin aren’t part of the NHS, or a profit-making organisation. They are a social enterprise and NHS providers. The service they provide is cost-effective. If Mike had continued to be tube fed, his cost to the NHS would have been extremely high. This service removes the need for tubes and eventually prescription milk so of course reduces the NHS bill for him.)

It took a very long fourteen months to find my way with the CCG and finally get Clarissa funded. Rebecca supported me through this time, keeping me focused on the goal we had in mind (i.e.eating) for Mike. We were lucky to gain the support of our brilliant MP, John Leech and his fabulous caseworker Martina. Martina and Rebecca will always have a special place in my heart, for the belief they had in Mike’s potential and the power of mum (they were absolutely right!)

Within days of being commissioned, Clarissa was in our home getting to know our family, our son and our trauma.Within moments she was getting to grips with a plan, made just for us.

Mike’s feeding disorder is in his brain but research says that other factors become intertwined and contribute to the problem. The best way to treat a child like Mike, is to tackle as many of these factors as possible. So in our case, there were biological, developmental, behavioural and family factors; all contributing to his feeding issues. Finally being able to make sense of Mike’s situation, without having blame apportioned was a great milestone for Dad and I. We’d gone on for so long, lost and confused over how to help our son that we’d lost all direction. We could now see a light at the end of the tunnel  to move Mike forwards and Clarissa was there to give us guidance to regain our control in parenting and confidence in ourselves.

From our first session Clarissa gave us behavioural and psychological techniques to use at home with Mike. She was available via email (she coached me through many a long lunch time!) phone and in person, whatever cropped up: whenever it did. Children don’t operate on a 9 till 5 basis, parenting is a constant and Clarissa fully appreciates ‘the twenty four seven’ nature, of raising a child with special needs. She was there for me, so I could do this for Mike.

The beauty of this programme is that it’s Mum and Dad leading, supported in the background by Clarissa. (After all mum and dad know their son better than anybody else.) Within three hours of her arrival, Mike was eating from a spoon and six days in to the intervention, drinking all the milk he had been having through his NG tube . Say’s it all really!





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