This paper has been written to initiate a frank discussion amongst interested parties. It is written from the user’s point of view of the current medical pathway involved in securing the right to have an Intrathecal Baclofen Pump fitted.
The current system is not patient centred and lacks an individual risk assessment approach. The insertion of an Intrathecal Baclofen Pump (IBP) is considered to be an elective surgery and therefore the waiting list system seems to have no method by which it can weight according to urgency. The current system, I advocate, having sat and watched someone endure the wait is cruel, verging on barbaric, as it shows a patient how good their life could be then sends them home to cope with their condition for multiple months.
IBP surgery is considered to be an option for those patients that suffer from life limiting spasticity / spasms, which have exhausted all other options to medically control their symptoms. The other options will include various medication trials and some physiotherapy options. Patients will have various long term illnesses, including Spinal Cord Injury and M.S. Therefore will already be coping with a non optimal life quality.
Stage 1: Trials of various medications. This can take years to get the right mixture of doses of various available chemicals. The requirement also varies as the condition progresses. Oral medications can fail due to various reasons, toxicity, bad systemic reaction to drug, condition not improving with use of drug(s) and other contra indications. The oral medications used to combat these symptoms are often being used outside of their primary licensed use; many are very familiar to those in Psychiatric medicine.
Stage 2: Clinicians if having failed during stage 1 to control a patient’s condition will at some undetermined point make a decision that a test dose of Baclofen is efficacious and can be injected into the spinal column’s intrathecal space. After detailed discussion with the patient as to the pros and cons of such a medication delivery system. If the test dose of Baclofen produces a good outcome the patient will then be sent home to wait, firstly for the outcome of a NHS funding application, then a suitable surgery slot by a Neurosurgeon. This wait can be 4-7 months or more.
Patient TDB is a 66 year old male, who in June 2007 contracted a Staphylococcus Aureus infection which led to spinal cord damage in region C3-5. This left him a partial, incomplete, non-traumatic spinal injury. As with many cases, the first year after injury was spent in various hospitals followed by adjusting to life in a wheelchair.
Spasms and Spasticity start to become a problem in mid-2008. Over the next 3 years, various drug trials were carried out, including, 3 separate Baclofen trials, Dantrium, Gabapentin, Pregabalin, Anatriptalene, Diazepam, Sativex and Tizanidine. All of the drugs either had little effect on the problem, caused breathing difficulties, or in the case of Baclofen caused agitation and unwelcome personality changes.
TDB first had the idea of the Baclofen pump floated with him in late 2009, but at that time was not feeling strong enough to under go another round of surgery with all its inherant risks and prefered to persevere with more oral medication trials. By the end of 2010 his spasticity was beyond unbearable and he finally agreed to take a test dose of Baclofen. The test dose was given to him at Stanmore in January 2011. It was found to be medically sucessful, but TDB was not totally happy with the results and took some time out to decide to go ahead.
By the end of March his situation has become so deplorable that he agreed to have a referal for surgery. 3 months in agony at home passes until he finally actually gets to see the Neurosurgeon on 27th June for an intial consultation. Then another 3 month wait until a pre operation assessment date 12th September. TDB is by this time too ill to make the journey , the operation on the 21st September is cancelled due to the hospital needing to take extra measures and organise the transportation. His operation was finally carried out on October 19th. 7 months wait in total from referal letter to operation.
This 7 month wait was inherrently dangerous, cruel and a gamble with this patients life. Despite many communications from the patient’s sole 24hr carer, giving many warnings as to the deterioation in the patients health condition and mental well being, as well as the daily physical dangers endured by his sole carer, all were ignored. No account in prioritising this wait was taken as to these facts:-
· This wait was on top of a 3 year campaign to find an answer for this patients symptoms.
· Patient did not have medication in place that was in any way controlling his symptoms or pain.
· Patient was relying on 24hr care given by his wife with no outside support.
· Patient was endangering his carer by not being able to be hoisted due to pain, expecting hourly intervention during the night because of unremitting spasms and pain.
· Patient needed regular physiotherapy intervention to straighten spasming legs, this very physical activity being carried out by his wife.
· Patient was becoming very depressed to the point wanting to take his own life, again his wife as sole carer had to talk him down from said episodes.
· Patient was getting into progressive sustantial medical difficulties, with breathing, low & high blood pressure , increase in pain, further loss of function, crushing effects from spasticity, and loss of appetite to name a few.
· This patient already had a standing letter inferring that funding was available from the PCT , because of previous funded medication that he was taking. It took only a few phone calls by his carer, to get the new updated letter from the PCT. This patient was already under the NHS Continuing Care regime. In this particular case, funding decisions should not have delayed matters as it did.
If funding from the PCT is a possible issue this should be cleared prior to any patient having a test dose of Baclofen, as it is cruel beyond believe to show a patient how good life could be and then send them home to wait. The funding letter from the PCT should take a week maximum having being cleared before hand.
The waiting list needs to prioritise the medical waiting time taking into account, home circumstances, current medication sucess, and how ill the patient is. A risk assessed , patient centred approach must be taken to ensure better outcomes in future.
Making an already very sick patient wait 7 months in this case, for an operation that as far as he was concerned was anything but ‘elective’, is barbaric, inhumane, cruel and has no place in a modern health system. This medical pathway must be reviewed and changed before someone ends up dying while they are waiting either through suicide or ill health.
http://medtronic.com information on what a Baclofen pump is.
http://spinal.co.uk general info from SCI charity regarding.
http://aspire.org.uk general information SCI
http://mstrust.org.uk general info on spasticity / spasms.
http://www.ninds.nih.gov/disorders/spasticity/spasticity.htm US site with useful info.