Clinical patient dignity does not equal real patient dignity

Clinical patient dignity is not equal to real patient dignity, trust me!

 

We talk about patient dignity and compassion all the time but aren’t they simply fashionable new buzz words?

 

In the back of my mind I’m thinking that the phrase ‘patient or person-centred’ feels like a term we often use but don’t actually fully embrace.

 

Being patient-centred is‘where the rules and procedures of the health care fit the person, rather than making the person fit the rules and procedures of the health service’ according to The Royal College of Nursing.

 

We also talk about treating ‘the whole patient’. The phrase sounds nice doesn’t it? So does that mean we treat the whole patient by understanding that patients’ former life, interests, motivations, family AND FRIEND dynamics, before they got ill? If it is then great but this was often not the case with me or other patients..

 

Wouldn’t this help improve patient outcomes, facilitate patients’ earlier discharge home and reduce overall treatment costs?

 

Most patients I engage with via social media through the charity I founded – Fighting Strokes – think these are simply convenient, empty words or slogans.

 

I will always be forever grateful for the knowledge, professionalism, diligence and timeliness of my own brainstem stroke with locked-in treatment action plan.  This started on 7th February 2010 almost immediately after I collapsed at home and continued in the ambulance, ICU and then on in rehab.  I completely understand that the NHS is being squeezed from every angle and at a time when patient treatment expectations are also going through the roof!

 

Without the immediate treatment response I received to my illness, I wouldn’t have been able to return home to be a mother to my three, dependent children and a wife to my husband.

 

But I also wouldn’t have become the VOICE that I am for other stroke survivors globally either.  I like to think I’m a true patient advocate.

 

Stroke recovery, acute locked in syndrome improvement and raising awareness of the physical and emotional post-stroke issues, once ‘the bomb has exploded’,  is my calling, it’s simply not a choice for me.  I received amazing life-saving treatment and I have a second chance of life which I have grabbed with both hands, for as long as I am around!

 

So when we talk of compassion and patient dignity I have one simple rule to help the caring/life-saving profession – TREAT PEOPLE LIKE YOU WOULD WANT TO BE TREATED. Simple!

For example, when a paralysed woman (who is heavily menstruating) is the wrapped up in the standard issue-white-NHS towel after a shower, I suggest that every effort should be made to preserve her dignity and quickly dress her and replace a new incontinence pad. Trust me, it would have helped me manage my anxiety levels enormously.

 

Similarly, don’t ALWAYS send a student nurse to attend a locked-in patient when the patient needs their soiled ‘nappy’ changing as it generally takes four times longer to do, (and with considerably more wipes.) Just because the patient can’t complain, more often than not a qualified nurse should do this task.

 

Finally, when doctors or nurses say they will do something for a patient, but then don’t/can’t, explain this to the individual immediately. Try not to leave the patient waiting.

They will usually respect your honesty and understand that you have had an unforeseen event to attend to ahead of their promised treatment procedure. The patient is also likely to trust you more.

 

It’s not rocket science!

As I stress, please TREAT PEOPLE LIKE YOU WOULD WANT TO BE TREATED (or how you would treat your Gran!)

 

 

 

By @KateAllatt 

NEW EBOOK!

I Am Still The Same -Self help stroke recovery tool

Internationally published author ‘Running Free’ (Amazon) .  Speaker –   Founder Fighting Strokes

A Brainstem Stroke? 6 tips to spot one. @fightingstrokes

Brain stem strokes can be difficult to diagnose and complex,  according to Dr. Richard Bernstein, assistant professor of neurology in the Stroke Program at  Northwestern University in Chicago.

Brain stem stroke can cause:

  1. Vertigo
  2. Dizziness
  3. Double vision
  4. Slurred speech
  5. Severe imbalance and
  6. Decreased level of consciousness.

So what does the brainstem do? Well it controls all basic activities of the central nervous system: consciousness, blood pressure, and breathing. All the motor functions are controlled by it. It’s like our body’s control box.  Brain stem strokes can impair any or all of these functions. “These complications are often predictable and, with prompt recognition, can be treated,” Dr. Bernstein says. “If complications are dealt with quickly, there is a good chance of recovery.”

More severe brain stem strokes can cause Locked in Syndrome –http://cirrie.buffalo.edu/encyclopedia/en/article/303/ a condition in which survivors can move only their eyes.

“It is important that the public and healthcare professionals know all of the symptoms of a stroke and are aware that some brain stem strokes heave distinct symptom,” Dr. Bernstein says. “Patients need to receive treatment as soon as possible to promote the best recovery.”

Like all strokes, brain stem strokes produce a wide spectrum of deficits and recovery. Over time, these symptoms could result  in mild to moderate and short to long term difficulties.

Risk factors for brain stem stroke are the same as for strokes in other areas of the brain: high blood pressure, diabetes, heart disease, atrial fibrillation and smoking. Like strokes in other areas of the brain, brain stem strokes can be caused by a clot or a hemorrhage. There are also rare causes, like injury to an artery due to sudden head or neck movements. This was my actually the cause of my injury.

“Dramatic recovery from a brain stem stroke is possible,” says Dr. Richard Harvey, director of stroke rehabilitation at the Rehabilitation Institute of Chicago. “Because brain stem strokes do not usually affect language ability, the patient is able to participate more fully in rehabilitation therapy. Most deficits are motor-related, not cognitive. Double vision and vertigo commonly resolve after several weeks of recovery in mild to moderate brain stem strokes.”

 

 

Resources for Locked-in Syndrome

Running Free: Breaking out from Locked in syndrome Allatt/Stokes http://www.amazon.co.uk/Running-Free-Breaking-Locked-In-Syndrome-ebook/dp/B008G5LRZS

 

untitled4

 

 

Locked In: A Young Woman’s Battle with Stroke. Mozersky, Judy. The Golden Dog Press, 1996. ISBN 0-919614-64-7.

The Diving Bell and the Butterfly. Bauby, Jean-Dominique. Random House Value Publishing, 1995. ISBN 0-517409-31-3.

 

Information Sources

Adapted from “Surviving a Brain Stem Stroke”, Stroke Connection January/February 2003 and http://www.strokeassociation.org/STROKEORG/AboutStroke/EffectsofStroke/Brain-Stem-Stroke_UCM_310771_Article.jsp#mainContent

<a href="

NEWS FLASH!!! New book November 2014

https://strokerecoverytips.files.wordpress.com/2014/11/img_2760.jpg”&gt;IMG_2760.JPG

Conscious or not… can you really be sure? @kateallatt

As I emerged from my medically induced coma in February 2010, I had periods (in amongst my severe hallucinations) where I slowly became aware that I was on a life support machine in hospital, following a stroke. But I was completely unable to physically communicate that fact to anyone – for two weeks.

I was experiencing what people describe as ‘locked in’ syndrome.

It was terrifying. My response to seeing someone who loved me coming to visit me was to cry tears. But there was no noise, just tears rolling down my face. People assumed they were involuntary movements – but it was genuine emotion. My friends, family and doctors assumed I was in a vegetative state – but I was there the whole time.

I could see and hear, and feel anybody touching me and yet my brain couldn’t instruct any part of my body to move.

I couldn’t develop any communication signal, which is the key thing with anybody locked in – either an eye gaze or a blink. But I couldn’t do that. There was no outward sign that I could understand anything.

It was like being buried alive. There was no TV turned on for me – all I had was a clock on the wall and patients screaming around me. I had three kids who were six, nine and ten at the time who hadn’t been to see me so the separation anxiety was beyond belief. I was so bored, fearful, upset, angry, in denial, scared and hot – I couldn’t regulate my temperature.

I was in constant fear that the conversations my loved ones were having were that I wasn’t worth being saved.

Above all it was frustrating because the doctors made no attempt to try to formerly establish any communication signal at that point, something I’m still struggling to understand. Instead, it took my proactive friends to try to find a way to communicate with me using a rudimentary communication board, because they wanted to unlock the person they believed to be still inside.

In two weeks my consciousness improved and my friends were able to get me to blink to answer questions (blinking to spell out letters, which was a long process). I was still locked- in but I was able to blink to communicate.

My experience has taught me that we should always assume that a patient is conscious until we have absolutely proven otherwise. Beyond that, we must be truly compassionate in our care for patients who are in a vegetative or minimally conscious or locked-in state.

Patients need to be kept alive and I am personally so very grateful for the skills of my medical and nursing teams in giving me my second chance of life, but treat the human being too, it’s not just about patient SATs and vital signs.

Is the Glasgow Coma Scale (GCS) score, which is used to assess consciousness, always reliable and interpreted accurately? Indeed, is it performed on a patient every hour?

For anyone ITU is a very scary place. People die. Inappropriate conversations are overheard. Patients are often in pain and scared for their own survival. ITU is boring, so patients tend to over think and stress about what may happen to them. It’s also incredibly lonely.

All brain injuries are different, but we must start being truly patient-centred in our care of such patients and start treating the whole person – that’s both physically and emotionally.

Health professionals need to start treating people like they themselves would want to be treated.

My determined self-belief and hope against all the odds was ultimately what got me through and why my charity strap line is ‘no promises, just possibilities.’