AN ANSWER TO THE PROBLEMS WITH SELF MEDICATION FOR MG FREQUENTLY ENCOUNTERED BY PATIENTS IN UK HOSPITALS.

BY MARIA TEANBY
MEMBER OF MGA (UK)


We are all grateful for the expert care of doctors and nurses whenever we have to be hospitalised. Whatever the reported shortcomings of the UK National Health Scheme, there are a lot of dedicated people out there doing a great job.
Sometimes, however, systems themselves, while being set up to help patients and clarify nursing procedures, can in circumstances such as a patient with MG actively cause problems.
 
Branches receive frequent stories of in-patients with MG having their medication inaccessible and locked away; standard ward procedure for drug administration but not good news for the MG sufferer. An example recently was of a patient entering hospital as an emergency, vomiting all night and, therefore, being totally without Mestinon for a prolonged period. Morning arrived and an emergency in another ward caused medication to be given out late. By this time the patient could not swallow, open her eyes or speak to tell anyone what is wrong. It was only when a doctor arrived and looked at her notes to find she had MG that neodistigmine was administered and a very indignant lady revived. Needless to say, she self medicated for Mestinon for the rest of her stay, but the experience could have been avoided. The need for Mestinon varies to such a great extent, especially when you are ill with other conditions, that self-medication is the only really sensible option. Where MG patients are in intensive care they are encouraged, as far as possible to alert staff as to when an intravenous Mestinon equivalent is needed. This is clearly impractical on a busy main hospital ward.
 
Regrettably the above experience is not at all uncommon. The Lincolnshire  Branch, a number of whose members have had similar experiences, has proposed that we produce a red and white card which advises ward staff that the patient needs to self-medicate for Mestinon and why. National MGA have taken up this simple but important idea for members across the country and published the card nationally in their September 2009 issue of the National MGA newsletter (http://www.mgauk.org/).
 
Many members around the country have tried using the wallet-sized identity card and literature provided by MGA on admission to hospital but it does not really fit the bill for what is required here. Moreover, the current wallet-sized card is placed on file until there is a real need for it, by which time difficulties may already have occurred. Even if it is read fully, the necessity for self-medication is not always apparent, as MG is such a rare condition, seldom experienced by hospital staff.

This new larger and simplified card with a warning triangle is intended for a particular niche: that important interface between nurse and patient.  It is that niche which opens up when you enter hospital on either a fast or a slow train and you hear those words, what medications are you taking? This is not the point at which a sick person wants to argue the toss on ... I will need to keep possession of my Mestinon.
The ability to produce a card that says just that and is large enough not to be overlooked should do it for you. This card should be clipped to the front of your chart at the foot of your bed and remain there for the duration of your stay in hospital. Even planned admissions that initially go well are fraught with problems when you and your notes move wards and some poor, hard-worked nurse in charge has to read them afresh. A card tucked in your notes is easily overlooked, a large warning triangle clipped to your chart isn't. It should also be of use at those times when you need assistance to perform simple tasks such as getting to the toilet, combing your hair or shaving.  You said you could mostly do these tasks when the admissions nurse did your assessment on arrival in hospital. Now your MG has decided that it is an off day. The last thing you need to have to do is to explain why to busy staff.
 
We hope that UK MGA members find this card of real use and that you pack it on entry to hospital along with your clean knickers, not forgetting to take it home again when you leave! Its production is dedicated to the memory of the late Richard Day, one time chair of the Lincolnshire Branch, who encountered many problems related to the administration of Mestinon during his final days in hospital