This is my first conribution to the forum and centres around the fitting and after-care of a apomorphine pump.
This is a guarded copy of a letter sent to the head of the appropriate department, it should put you in the picture qucker,
I am writing to inform you that l shall be seeking advice regarding recent treatment for Parkinsons Disease
This condition was diagnosed in 2004, until recently I responded well to the medication and was able to lead a fairly normal life (Including driving-under notification)
However PD is a degenerative condition and eventually the medication became less effective.
I searched online and came across the drug apomorphine.
I viewed the various comments and opinions and concluded that whilst it did not suit everybody it’s advantages made it worth considering.
To cut to the chase, I requested and was offered Apomorphine via a small pump which administered the dose over a twelve hour period.
Apomorphine is a powerful drug and requires a short stay in hospital where it is carefully monitored.
I was discharged on the 29th May 2015 and for the first few weeks Apomorphine was very effective and I was able to reduce my Madopar medication by 60% and, as the pump was set at a fairly low dose (3mg/.6ml) per hour I was confident that with careful monitoring and gradual adjustments to the pump we would be able to achieve even greater reductions to the oral medication.
Alas, it wasn’t meant to be.
Whilst the hospital had carefully initiated the procedure with instructions for aftercare, I’m afraid the aftercare was somewhat lacking.
There were constant supply problems and in one instance we were down to one needle, but to give credit where it’s due, the aappointment of a new PD nurse saw an overnight improvment with the supply of Apomorphine.
The situation was somewhat highlighted when the pump broke down.
It was almost impossible to get help, eventually we contacted a help number on the pump, they phoned back to say they had contacted a rep who was on his way down from Scotland and he happened to have a pump with him, this was delivered at 3:00 am.
The rep could not set the pump.
I then took the decision to set the pump myself and from the pump booklet and the patient record folder I was able to do so.
The last few months have been very painfull for my wife and myself, as l often needed assistance when trying to arise and not helped by surgery my wife endured for breast cancer.
As l appear to be a suitabe subject for Apomorphine it is a pity there was not enough qualified backup to carry it forward to it’s full potential and it is outragous that a patient was desparate enough to set his own medication.
It is now over two years since l was discharged from hospital and l feel that the whole thing has been a painfull waste of time and money
The recent forming of a PD team will not make up for lost time.
A team as such should have bean in place to monitor treatment soon after discharge.
That’s the gist of it, (LEGAL ACTION WLL NOT TAKE PLACE), L l will be happy to take any questons at this stage
Shortley l will contribute a up-to-date which contains some very serious issues