Dum Spiro Spero Jan Clarke MND Clinical Nurse Specialist. National Hospital for Neurology & Neurosurgery London November 2014
Session outline Role of the MND Coordinator MND Nurse Specialist Context to aid decision making softer markers for directing care. 2
MND Coordination Single point of contact for patients / family Provide advice, di support and information i Support and coordination of services Promote effective, integrated working between health, social and voluntary sectors Teaching and education Research
MND Nurse Specialist
Decisions i what ht and when? Guidelines and protocols MNDA Standards of Care Patient pathways i.e. PEG/ RIG / NIV NICE guidelines Trust policy's Patient directives
Straight forward decisions i Clear guidance Evidence to back up decisions Time to discuss topic Printed information available Will do no harm Improves quality of life Consent and planning Team decision
PEG Protocol FVC greater than 50% Early intervention Able to lie flat Can tolerate sedation Will improve quality of life Patient has ADRT
Complex decisions i FVC is 49% or below No advance decisions made Loss of weight significant Struggling to manage fluids / food Lives alone Ideally should have had a PEG months ago
Clinical i l Reasoning is. A critical skill we need for clinical practice It assists our professional judgments A cognitive / metacognitive process (h (thinking about thinking) It takes time & experience to develop Differs from problem solving Higgs & Jones 2002
Mkig Making clinical i l decisions i The clinical reasoning process often happens in seconds Sometimes difficult to breakdown the steps to explain the reason why
Context Patient context Wants to remain in his own home Lives alone with Trevor the dog Scared of looking at the future Religion / culture Doesn t like strangers / visitors Clinical Context Community context Risk increased because of FVC Malnourished and low BMI Upper limb weakness and poor dexterity What will happen if we don t do it. DN availability? Naso gastric tube? No family / social support
Patients Context lives alone so who would help with this how to introduce help but reduce numbers of people he would see how accommodating would Trevor be? prefers to deal with here and now, no opportunity to advance plan Clinical context what other measures can we use to know that he would tolerate the procedure current BMI contra indicated for RIG wont be able to give the feeds himself poor prognosis Community context who will give the feeds What about other needs? Community community alarm? Is an NT tube safe? Context key safe?
What did we do? Was sleeping flat with 2 pillows, therefore safe for intervention ti despite FVC to go ahead with procedure Used twilight district nursing service Allowed for 8 hour feed best compromise Dog lover so Trevor got fed too Regular contact created trusting relationship Intervention helped sustain quality of life allowed time to plan for Trevor's future care which was the most important issue for this gentleman and by default helped us to introduce the idea of thinking about the future. 14
Tigg Trigger points Dysphagia Dietary modifications Weight loss > 5% wt loss in 3 months Extended meal times Loss of appetite / loss of interest in meals Clothes becoming big Chest infections
PEG Need to be able to lie flat for 30 45 mins TOSCA / end tidal CO2 measures, sleep study / over night admission Will need to be able to be left attached to pump over night what about other needs? Or be able to access 4 5 feeds during the day DN can only usually visit twice, NG tubes not used in the community (routinely) May change where they need to live? Key safe = not everyone thinks this is safe 16
RIG Requires NGT night before Preferably lie flat or back to 30 degrees Can use N.I.V during the procedure Under local anaesthesia BMI > 18.5 kg/m2 Higher rate of infection i and mortality. Less robust tubes
Tk Take home points about cognition Almost all people with MND do have capacity They may experience difficulty with learning new technologies May be less engaged gg with health professionals / family May be less able to judge carers emotional needs / exhaustion.
Tigg Trigger points Dyspnoea Orthopnea Unable to speak in sentences Can t sing / cough / blow their nose Can t eat and breathe Nocturnal hypoventilation FVC 70 50 % of predicted
Non invasive i ventilation Switching device on / off Attaching the interface, who helps What if you live alone Bulbar symptoms Kissing / touch Communication End of life Removing NIV When someone dies
Dum Spiro Spero
Thank you Rachael Marsden CCC. Oxford MND Care & Research Centre, Oxford Patients and staff at the MND Care & Research National Hospital for Neurology & Neurosurgery, London MND Association
Jan Clarke Clinical nurse specialist National Hospital for Neurology & Neurosurgery Queen Square London. UK 0203 448 3517