Motor Neurone Disease (MND) has such a devastating effect upon individuals and their families that, despite its relative rarity, it should never be absent from the diagnostic possibilities of caring clinicians.
While it used to be stated that a general practitioner might expect to see only one or two cases in a professional lifetime, now with large shared lists this is probably no longer true, and in any case rarity is no excuse for sub-optimal care!
- MND is one of a group of chronic degenerative neurological diseases all of which share certain characteristics
- Some can be relieved but none can be cured
- They are relentlessly progressive but the speed of deterioration can vary
- Most are ultimately fatal and are capable of causing great suffering
- All have a major impact on the lives of those with the disease and their families
- All require a compassionate and co-ordinated approach to their management which poses a great challenge to general practitioners who must assume a key role in their management.
From our clinical experience, we have found it possible to develop an approach to their management based on some fundamental principles which, if applied by general practitioners and primary care teams, will help them deliver optimal care to a singularly unfortunate group of people.
The principles of caring for this group of diseases are:
- To recognise the unique role of the general practitioner from diagnosis to death
- To be alert to the diagnostic possibility of people presenting with a chronic degenerative neurological disease
- To remain in supportive contact with patients and their families and carers
- To monitor and control their symptoms as effectively as possible using the skills of other health professionals, as and when appropriate, and to co-ordinate their contributions.
Further information available on this site has been developed to aid general practitioners to deliver care based on the above fundamental principles.
September 2009 Dr Colin Waine, O.B.E., FRCGP, FRCPath, Visiting Professor, Sunderland University