Patient Hospital Care

Hospital care and a patient protocol system should be in place whenever a patient is admitted for any procedure not just during an attack or treatment. A protocol system should ensure prompt admission and administration of a treatment plan accordingly. Ongoing training, educating hospital staff on dealing with porphyric patients should also be encouraged, whilst resources may not always enable this when dealing with rare diseases, further highlights the importance of having a patient protocol in place. The patient must be involved in planning their protocol after all this concerns them and their health at the end of the day. 

Patient Protocol 

Its important for one to understand that many medical care systems throughout the world were not set up or designed initially to deal with rare diseases.

These are complex and require "out the box" thinking and management.

Most often a rare disease will require several doctors who would need to jointly manage the patient care in parallel, whilst being primarily coordinated or managed by a central point or primary physician. 

Because a variety of treatments and input is required from many specialists this can be a challenge in getting all the protocols in place.  In Porphyria one would need a neurologist, a liver specialist, urologist or nephrologist, opthamologist, cardiologist and so on.

For this to work successfully all these experts need to come together and plan or work with the patient towards planning a treatment protocol or pathway to avoid the patient being "lost" in all the red tape.

Rare diseases pose a challenge around the world, this means changing the "normal" way of thinking and looking at ways this can impact the patient / family unit and looking beyond the clinical symptoms which may or may not present. 

How does a rare disease impact on society, the family, social structures, educationally and economically.

Are support systems in place such as counseling or therapy to help the patient and their families cope with a diagnosis?

There is a dire need for a coordinated approach to caring for people with a rare disease, by doing so we can reduce much of the emotional stress and trauma experienced by patients and their families, including mistrust in the medical fraternity.  The frustrations in having to negotiate medical care and waiting times for one doctor to initiate a treatment plan involving several different fields of expertise and often there is no "Primary" GP who understands the complexities to coordinate such an effort. This leads to long delays in treatment/s, the patient often feels as though they are pushed from pillar to post and back again. 

By reviewing current systems in place this will allow patients to have a coordinated care plan in place and allow them to get the best possible care

That is when the impact of coordinated care for rare diseases will be evident with fewer days lost to hospital visits, less patients avoiding treatment due to the lack of management and subsequently many will regain their trust within the system,  which means living a better quality of life for all.”

Compiled By Lynn Croker