Success!

Finally, our Section 23 assessment was reviewed by the Multi Advisory Resource Group (MARG) and our request for support in the management and care of Muir was granted. It took 14 months and a bit of a covert route in order to get the assessment in front of the panel but it was successful and that is just the best news. If only it could be the same for other families.

The problem was the lack of resource available to carry out the assessment within the social services department - nobody's fault, just a lack of resource. Something that I expect will get worse not better in the current cost-cutting climate. At the time our request for support was made, our need for help was immense.  We were at breaking point in the management of Muir.  I am grateful to Epilepsy Scotland who stepped in and provided a student social worker to complete the assessment, under the guidance of their full-time social worker Michael Adair. 

When the assessment reached the panel their first comment was that whilst they knew of Muir they had no idea how complex his needs were.  But why would they know?  After all, his needs had not previously been assessed.  And that is the reason why the Muir Maxwell Trust is now launching an assessment service for children with difficult epilepsy and their families.

The service is being launched in Scotland to begin with and its purpose is to support other families like us, struggling to cope with the complex needs of a child with epilepsy.  The assessment will not only consider health needs but also education and welfare needs too.  I know from our own experience of caring for Muir just how difficult it can be for other members of the family, the burden of being a carer for siblings, the isolation for parents who can rarely find a suitable sitter and are therefore denied the luxury of going out socially together. The eternal stress of managing seizures and behavioural problems and the frustration for the child with epilepsy whose needs are perhaps not being met either at home or at school or both, as well as their ill health which they cope with daily.  Nobody's fault.  It's just the way it is when you are caring for a child with complex epilepsy.

Our hope is that over time this assessment service will evidence the extent of the needs of these children and their families and that these needs will be appropriately met. Long term, we would like to build a dedicated paediatric epilepsy and respite care and assessment centre, comprising a school, a residence and a medical centre of excellence.  We are hoping for partnerships with the NHS and with the Scottish Government to ensure that the long term funding will be met by the local authorities. It is an ambitious plan.  Our goal is to raise £10 million.

I want to change things for children with epilepsy and their families.  I don't want it to be the way it has been for us caring for Muir.  That is too much to ask of any family and too much to ask of a child coping with epilepsy.  It needs to be better than this and it can be.

Best wishes,
Ann Maxwell
Founder of MMT along with husband Jonny