The Billy Caldwell Foundation (www.billycaldwellfoundation.com) set up to help children with severe, intractable epilepsy who have had to travel to the US for life-saving diagnosis, treatment and therapies met Michael McGimpsey yesterday to discuss the options for bringing the children home to Northern Ireland. The discussion focused on the services which must be in place locally – without which the families believe the children would face possible death if they were to return to Northern Ireland. The meeting ended without agreement as the Minister and his adviser, Dr. Miriam McCarthy, were unable to guarantee that the necessary diagnostic, dietetic, physiotherapy, OT and speech therapy services would be put in place. Without this alternative, the Foundation has no option but to continue fund-raising to keep the children in the US.
The Minister stated he would be making an announcement in the near future which would include details on service augmentation, but it greatly concerned the Foundation that neither he nor Dr. McCarthy were able to detail the training provision for a proposed dietician who would supervise the use of the Ketogenic Diet, nor the number of hours of therapy that each child would receive weekly. Without these assurances the Foundation instructed Michael McGimpsey that the children could not come home to face an uncertain future and a higher risk of fatality. Further to this, the Foundation believes that the additional pediatric neurologists post proposed by the Minister is wholly inadequate to satisfy the children’s needs. Five months since it was first advertised, no applicant has yet been appointed. Dr. McCarthy told the Foundation that if the Department of Health were eventually successful in filling this post, the appointee will work under the same clinician whose handling caused the exodus of children to Chicago in the first instance.
It currently costs approximately £100,000 per year to treat each child in the US. This includes diagnosis through the use of the state-of-the-art MEG scanner, of which there are none available to the NHS in the UK, (although three exist in private research facilities), and a minimum of twenty hours of therapy per week. The Minister is also refusing to consider funding these costs. In the meeting yesterday he stated in the US you get what you pay for.
Charlotte Caldwell, Billys mum, said, Despite the fact that Professor Helen Cross at Great Ormond Street has told me repeatedly that she cannot provide the services essential for Billy, the Minister and his advisers refuse to accept that Billys needs cannot be met in Northern Ireland, or even in Great Britain. Since I first talked to Mr. McGimpsey eighteen months ago, my position remains the same that the health care requirements for Billy and others regrettably does not exist in the UK, let alone here. I am deeply saddened that the Minister and his advisers have failed to move their position since September 2007. Despite having ample time, the Ministers medical advisers do not appear to have researched in detail the availability of these critical resources either in the UK or in the USA. Our only hope remains in the US where our children have been given the chance of life.
Minister McGimpsey still does not appear to accept that if I were to bring Billy home he could die. All I ask is for him to listen to us and direct his civil servants. Without these services in Northern Ireland we cannot come home. Billy and I are kept away from our family and friends here. If, as he has stated on record that funding is not an issue, why do I face permanent exile and endless fund-raising?
The people of the United States have taken Billy to their hearts and have provided a World class service at the Childrens Memorial Hospital in Chicago, the Pathways Centre and the Alexian Brothers. I will always be grateful for their great kindness and generosity, but even they do not understand why Billy cannot have the proper health care in the British National Health Service. But naturally, I just feel so sad that once again I am going to have to leave our home in Omagh to return to the US with Billy. I feel let down again by my own Minister and the NHS.
I refuse to let him slam shut the door of Hope on Billy. I refuse to let Billy die.’