Closing the Gap – Healthcare Disparity

We often hear about the oversight of care that is provided in the state-run Intermediate Care Facilities.  While this may be true for some aspects of care it is not true in regards to the medical/nursing care that my son has received.  I am writing this so that others may learn and be aware and know to ask about the oversight at their own facilities.

The situation I will refer to is only in regards to my son and the residential habilitation center in which he lives.  I am recounting my story so that others may be aware and begin to ask questions to ensure that the medical/nursing care has some oversight by those who are knowledgeable in the community standards of practice for medical and nursing care.

Over the past several years my son has had a variety of health problems.  I tried to communicate with the healthcare providers at his center but my observations were ignored and I was ridiculed by some of the providers. Other providers refused to listen to my concerns – instead stating “staff has not reported that.”  In several cases I ended up taking my son to the local ER to get a diagnosis and treatment since I was not making headway with the healthcare professionals who were supposed to be his primary care providers.  At the ER my suspicions were validated and found to be correct but by that time my son had suffered more than he should have.  He has also developed some life-long complications from some things that were not diagnosed and treated appropriately by these so-called primary care providers even though I had given them the information and had requested the specific tests to be done.  My requests were denied.

As a Registered Nurse myself, I really had difficulty with this.  Trying  to collaborate but not be overbearing or controlling and not putting my son at more risk was a tricky situation.  One nurse manager also told me  “you need to separate being a nurse and a mom.” Also, I could not understand why the community standards of practice were not followed.  Assuming that the “Primary Care Clinic” on site and the infirmary were licensed and had oversight by the Department of Health was the first mistake.

While the Department of Health oversees the healthcare in other state institutions, community healthcare centers, home health care agencies and hospitals, they do not oversee the Intermediate Care Facilities.  In our state, this is delegated to the Department of Social and Health Services.  I learned about this after an investigation which clearly showed neglect and inappropriate medical and nursing care was returned “allegations unfounded”

I was not only dumbfounded but angry.  The investigator had even included a copy of the Nursing Protocol for one issue and the nurse had clearly not followed  it  yet that fact was not even addressed – it didn’t seem to matter.

A couple of months later my son developed sudden significant pain and swelling in one of his feet.  This would now be the 4th foot injury in 10 months that he has had.  Given the localized swelling and tenderness I suspected a break and requested an xray.

Assessment by RN 1 – “no pain or bruising,   normal swelling present” will go away after he has had his foot up for the night – communicated that I did not agree and would like xray if still swollen in the morning.  Report called to MD – no orders

 

swelling day 1

 

Assessment by RN 2 – No swelling, not warm to touch, no pain upon palpitation, no distress walking, no signs of fracture, nothing at all.  She notified MD and he agreed with her assessment that no action would be taken unless nursing sees something to indicate client had a fracture.

MD did not assess client himself but took this assessment of the RN as fact even though he was aware that I had requested and was still requesting an xray.

I requested at least for an Ace wrap or his splint to be applied.  I was refused this by nursing because the assessment was that he did not need it.

swelling day 2

 

Assessment by RN 3 – stated that swelling appeared decreased and client said “no” when RN asked him if he wanted the splint on – taken as refusal and RN did not attempt to apply splint.

Assessment by RN 4 – small amount of edema and bruising – notified MD and stated that mom would like to have an xray done.  MD refused saying that he does not order xrays just because a mother wishes it to be done. RN returned to repeat assessment.  There was now more swelling and tenderness – told MD that mom would take client to the ER if he did not order an xray.  He then agreed to order the xray

Swelling and bruising day 3

Result – Fracture of 5th metatarsal and placed in cast-boot.

Again an investigation was done by the State Investigative Unit under Department of Social and Health Services.  Photos and a video were sent to all involved and also reviewed by the investigator.  It was clear to me that this situation had not been handled appropriately but again, I was dumbfounded to receive the results of “allegations unfounded.”  There was one citation though regarding the failure of RN 1 to write a note on a form regarding her first phone call to the MD.  The plan of correction by the nurse manager was that this form was obsolete and not used any more so was removed from the nursing protocol.

There was not one word about the lack of quality of care  – it does not seem to matter.  

I had a meeting with the administrators and two of the MDs ( not the one that was involved in this particular situation) and asked about professional peer review for the issues that I have raised over the years.  That idea had never crossed their minds and they were all unfamiliar with the concept.

I am now trying to get the word out there, writing to our legislators, the Department of Health, Residential Care Services in the Department of Social and Health Services to remedy this complete gap in care for our most vulnerable.  These residents do not have the oversight and wrap around health and social care that we have been led to believe.

Yes, I am angry – angry at myself for trying to collaborate and work together for so many years and not realizing the healthcare team does not have oversight to ensure their standards are up to date and are adhered to

Angry that my son has suffered and now has life-long complications from the refusal of this “healthcare team” to listen to what I was telling them about my son

But mostly angry at the facility and the agency for failing to provide the quality and standard of care that they have been entrusted to provide.

I have no answers now.  The Department of Health is not able to investigate since they do not license the facility.  I was told to write complaints for each individual practitioner.  This has been done and is in process.

I filed a complaint with the Residential Care Services to look at the Federal Regulations regarding quality of care, utilization review and standards of practice.  They seemed to be a little confused on what I was referring to.

I will keep pressing this issue – my son will be taken care of.  He now has a full team of healthcare providers in the community but my concern is for those who do not have advocates and have to rely on the healthcare that is sub-standard.

If this was your child’s foot what would you do?

 

 

 

 

 

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