Dear Medically Qualified People,

I feel it is my duty to point out to you all yet again the seriousness of Terence’s Situation. Although a total knee replacement operation is usually in the general population considered to be elective surgery in Terence’s case this is not so. Every day that goes by and Terence is left in this position of excruciating pain is a day nearer to the inevitable life threatening Medical Emergency that is an Autonomic Dysreflexia attack.  Terence as a Spinally Injured patient is fully aware of the symptoms of this and tells me that the early stages of it are becoming a daily occurrence, the pounding headache , sense of impending doom, elevated blood pressure etc. Therefore the choice for Terence is get rid of the pain or risk further life limiting conditions such as possible death, heart attack, brain aneurism or stroke brought on by an attack of Autonomic Dysreflexia. Having made a trip to our local A&E this weekend I am not sure he would make it as his present condition presents transportation issues and therefore critical time for the ambulance service. We found out that the emergency vehicles with the more highly trained paramedics can not take a patient secured in wheelchair. Terence because of his spasticity can not straighten his legs and therefore it is impossible to secure him for transport safely to the usual casualty trolley.

The following comments I am about to make are based on a lay persons understanding, and my previous although limited exposure to anaesthetics in those with a spinal injury. It has been verbally reported to us, although not in writing as we would have expected that Terence’s operation at ECH was aborted due to concerns over the effects of general anaesthetic on Terence. May I point out the following:

1.      This assessment was based not on a physical examination of the patient but on previous reports of potential problems all of which were carefully, skilfully and successfully managed by other Consultant Anaesthetists.

2.      Terence has had 6 operations post injury that have involved general anaesthetic all of which he has survived.

3.      Terence recognises the risk is higher in someone like himself but as I stated earlier if risk assessments have been made on the basis of an elective surgery rather than that of a life saving basis then the said risk assessments are based on an erroneous premise.

4.      Other consultants who have been pushing for Terence to have a Baclofen pump fitted do not seem to have the same concerns.

Having said all of the above I recognise that some lateral thinking will be necessary in the post operative management of Terence. Problems being of how to keep his legs flaccid long enough for healing to take place and then how to rehabilitate a joint in a leg with spasticity/spasm. Terence and I have had previous experience of temporary epidural medicine delivery pump devices, could not such a device be used to deliver a muscle relaxant into Terence’s spine post op?  He had such a piece of kit attached to him, post necfrectomy operation in October 2007 delivering pain medication.

It is our understanding that pain can be a major trigger for spasm therefore since Terence is in a lot of pain with his knee we believe that it would be wise to remove that noxious stimulus first before assessing the residue amount of spasticity and spasm left and therefore ongoing treatment for this, such as Baclofen pumps and other medications. Doing this the other way round would in my view lead to over treatment / dosage of the spasticity and spasm using powerful drugs that can in larger doses impair mental cognition and therefore adversely affect Terence’s quality of life longer term.    

Good medical folks we are running out of time for Terence,

·         Every day that goes by he is being tortured with unremitting pain, loss of function, loss of quality of life.

·         Every day that goes by is a day lost in the chance to rehabilitate and work to gain some improvement in the weak signs of recovery of some motor function in his legs. We have been told that previous experience of Spinally injured patients gives them a 6 year post injury window in which recovery can take place after which patients tend to remain at the same level. We are now at +3 years post injury.

·         Terence is nearer the end of his life rather than the beginning so every day that goes by is a precious opportunity squandered.

·         Every day that goes by is an increased frequency of exposure to risk of life threatening Autonomic Dysreflexia.

·         Every day that goes by increases my risk of injury, as at present we can not expect minimum wage carers to take on the daily physical risks I am exposing myself to due to your collective inaction. I am physically getting daily more and more exhausted, I have not slept a whole 8 hours in nearly 2 years and no more than 2 hours straight in the last 4 weeks.

The time for talking and debate is well long past, real medical solutions for Terence  and a sustainable action plan need to be formulated within the next 14 days or else I will forced to take more drastic action, Terence and I,  can not go on any longer like this. You can not ethically leave a man in the community like this in crippling pain, having unremitting spasticity and spasms, unnecessarily loss of function, loss of quality of life, suffering from sleep deprivation and do that which amounts to ABSOLUTELY NOTHING.

Please people, urgently talk to each other, use your collective substantive brain power AND COME UP WITH AN URGENT WORKABLE SOLUTION. It has now been 529 days since I first asked the NHS for help in managing Terence’s many medical problems and still nothing much has changed for the better.

Angela

(wife / full time carer of patient)

Please note this urgent email has been written with the full permission of the patient.

Angela Cavill-Burch MBA / NEBOSH

+44 777 9494230 UK Mobile / Cell Line

+44 173 3244376 UK Home Land Line

http://www.onmybiketoo.com