complex not complicated – improving a neuromuscular
TRANSCRIPT
Complex not Complicated – Improving a Neuromuscular
outpatient pathway Adnan Manzur, Consultant Paediatric Neurologist
Ruth Barratt, Neuromuscular Nurse Specialist Lisa Byrne, Improvement Manager
6th November 2013
• Improved symptomatic care
Standards of care MDT working Improved survival
• The future Patient quest for best care Excellence in clinical care Research
Cardiomyo-pathy, Respiratory failure
Duchenne Muscular Dystrophy (DMD) A changed natural history
DMD Care pathways Caring for the Carers
• 260+ boys with DMD followed up at GOSH.
• Stress & emotional challenges
• Configure clinic pathway to – Enable clinicians to focus on care – Prevent “burn out”
• Family and care organisations partnership
Typical ‘clinic’ visit Every 6months - • Height, weight, blood pressure and urine dipsticks
• Physiotherapy assessment - 90 min
• Dr's neuromuscular assessment - 60 min
• Respiratory function test
Every 12months - DEXA bone density scan/Echocardiogram
Every 12&18 months - Blood tests
Patient dependent additional appointments • Review by dietician
• Discussion with clinical nurse specialist
• Consultation with care advisor / social worker
• Participation in research clinical trial
Patient arrives at Ground Floor
RLHIM
Key Start/Finish Process step Decision step
Reception checks: name,
address, GP, tel no,
school
Patient waits in Clinic A,
Level 1
Healthcare assistant gives
patient programme and explains
day
Take lift to L1
Patient weight,
height, bp, urine & lung
funcion taken
HCA checks time and contacts
Physio
Patient Pathway
Parent takes yellow form to reception
Next appointment written on yellow
form
Yes
Letter & Referral sent
to FCO
Patient sees FCO
Is FCO available
Yes
No
Does child need blood tests?
Patient goes to
phlebotomy for blood
test
No
Yes
Parent and patient leave hospital
Yes Patient goes to main building
Does family
need to see FCO?
No
Does patient have X-
Ray/ECG/DEXA/ ECHO appt.
No
Can child go to
Physio
No Patient waits in
waiting area
Physio brings patient to gym on L4 using
back lift
Physio brings patient back to waiting area on
L1
Patient sees Doctor/Consultant
Yes
Aim and Objectives
We aim to improve the experience of boys and their families at the NMPDDC Clinic such that they consistently report the day was coordinated to a good/very good standard, patient’s concerns listened to and both parent and patient involved in discussions
Customised care plan for each patient with clear plan for day of review
Appropriate time slots for appointments. taking account of travel to and from
Patients are able to say that there were not waiting more than 30mins for appointment
Pre planning of appts. required on the day
Effective team working essential so that we can deliver the care patients need when they need it
Parents to be supported to navigate between their appointments
Up to date information shared about how the clinics are progressing
Pre-clinic planning of who is in attendance each day (staff and patients)
Build team so that all members’ contributions are reflected positively in patient and staff experience
Communicate clearly with families about all aspects pre, during and post the
GOSH visit
Communicate clearly within team about the day
Ensure appropriate schedule for each family
Appropriate wheelchair access to all appts.
Sufficient rooms for confidential conversations
Provide suitable patient environment
Privacy screens in gym
How are we going to do it?
What do we need to do?
Clinic letter received promptly after last appt. to ensure patient care is not impacted
Clear signage to all appts.
Engagement
• Pathway mapping with stakeholders
• Questionnaires
• Patient stories
• Patient shadowing
• Telephone interviews
• Focus group with families
What bugs you?
Stakeholders
Patient &Family
Cardiac Physiologist
Clinical Nurse
Specialist Physiotherapist
Consultant Phlebotomist Lung
Physiologist
Clinical Nurse
Specialist
Research Team
Advocacy Groups
Outpatients staff
Key Themes
• Family/Patient
- Stress
- Coordination
- Communication
• Staff
- Stress
- Coordination
- Communication
Interventions • Clinic prep packs for Consultations • Volunteers to support clinic • Calling families pre appointment to confirm attendance • Text alert system to remind families about appointments • Vitamin D alert email to notify consultant when results are returned • Revised weekly clinic schedule email • Neuromuscular in-tray in clinic waiting area • Remote access for clinicians to Clinical Document Database • New privacy screens in gym • Updated hard copy plan for patients • More realistic appointment schedule • New 9am consultant appointment • New CNS review clinics
Outcomes
• 91% of families reported receiving a care plan on arrival compared with only 25% in September 2012
• 92% reported waiting <30mins for appointment compared with 58% in September 2012
• >90% of families report that their child’s concerns were listened to and their management plan was explained in a way families understood
What they say now
Better than ever
Can’t fault it
Well organised
Challenges
• Getting patient perspective
• Space constraints
• Time
• Changing attitudes
Learning
• 1-stop shop approach – desirable for families
• Introduce changes by testing on a small scale
• Team buy in is crucial
• Formally engage with advocacy groups
• Project manager resource crucial
• Collect qualitative data and quantitative data
Next Steps
•Bi-annual focus groups with families
•Roll out Patient-held document file across service
•Update website
•Regular stress resilience sessions with staff
