Liz Keenan
Clinical Nurse specialist
The National Hospital for Neurology and Neurosurgery, Queen
Square
What is spasticity?
Spasticity is a frequent and disabling symptom which causes
“disordered sensorimotor control resulting from an upper motor
neuron lesion, presenting as intermittent or sustained involuntary
activation of muscles”. Range from mild to severe.
What do we currently do?
The multidisciplinary spasticity team at the National Hospital for
Neurology and Neurosurgery (NHNN) provides specialist care
for People with Spasticity (PWS) living with long term
neurological conditions. There are many elements to the
management of spasticity, but in those people with severe
spasticity an Intrathecal baclofen (ITB) pump can be life
changing. Following insertion of an ITB pump, patients and their
carers receive support and education from the team.
Education post pump ..
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Standard information on long term management
Written discharge report and
Standard letters send to DN, GP and patient
Standard pathway of care
Current pathway
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Admission to a rehab ward
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Ward nurse familiar with caring for people with complex
needs
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Standard information and education
Question
 Do we have the pathway set up around patient needs?
 Are there different flexible ways of planning the pathway?
 We needed to step back to explore what the patients think?
FoNS opportunity..
Opportunity for a team approach to step back, reflect and
complete a Claims Concerns and Issues (CCI)
The main purpose of this project would
therefore have two strands:
1) Gathering a Quality of Life questionnaire on the
impact of caring for someone with a long term condition
who is receiving ITB
2) Develop and evaluate the information / education
needs of people on ITB who have severe lower-limb
spasticity
First step… identify who needs to be involved!
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Who are my stakeholders ?
 MDT
 Nurses on rehab ward
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Ethics or service evaluation
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Patient information leaflet – adapted version of
emotional touch points
Carer information leaflet - survey monkey
Information for the ward staff - focus groups
We used emotional touch points, focus groups and on line survey monkey questionnaire
Challenges….
Complete a focus group with ward staff?
 Never a good time to release staff
 Shifts always busy
 BE CREATIVE - organised agency to cover nursing
shifts using FoNS bursary
Identify patients and carer willing to participate
 Patient not available as too far to travel
 Emailed information sheets and consent
 Organise time to call and discuss
 BE CREATIVE - organised interviews when patient
visiting clinic Interview patients
 Survey monkey questionnaire to the carers (carers strain
and burden)
 Needed email addresses
 Poor response rate
What we have done ?
Team evaluation
Staff evaluation
Patient evaluation
Carer evaluation
Did emotional touch points help our service
evaluation?
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Provided us with a valuable narrative as people were
invited to share their experiences and ‘tell their story’
Opportunity for sharing negative and positives
experiences of their spasticity pathway
Areas of improvement were identified and a platform for
discussion with all involved in the spasticity pathway
People invited to select a card / cards that best answered the
question being asked
What cards were selected & why?
Cards selected..
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Comment ‘It was probably the most difficult thing In my life to get
from the front door to that clinic’ Words selected Appreciative Fortunate - Happy - Cared for - Calm - Thankful
Comment ‘The pump has changed my life again for the better, so
I have a much more positive view of my future’ Words selected :
Enthusiastic – Encouraged - Extremely appreciative
Comment ‘I think it makes me more capable because I don't have
to worry so much about so many drugs’ Words selected
Comfortable, Appreciative, Calm, Curious, Accepted
Comment on the process of using emotional touch points: ‘you
forget sometimes of how you actually felt at the time and you see
the word it reminds you gosh, I did feel like that’
Overarching theme of people wanting to meet other users and
carers
Raising awareness
Poster at UCLH
ITB national forum
Poster for Rehabilitation in
Multiple Sclerosis
June 2014 !
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Change of ward.. new setting and new staff
My reflections so far..
the FoNs programme has given me a lot of
opportunities in clinical practice
it has given me the skills and confidence to run a
staff workshop and interview users
having the support of a clinical practice facilitator,
has been really great as it keeps you focused
Next steps !
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Presented findings to team
 Amend education tool
 Using laptop to complete education
 Requesting patients to review paperwork
 Working with the staff on the new ward to raise awareness
of complex disability and patient group
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Plan a lunch event on 19th of December!
Top tips….
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Allows one to reflect and stand back from a service
Get your project on the agenda for team meetings
Use the tools from the FoNS workshops to up skill as
this can have a ‘ripple effect’ in clinical practice
Have confidence and avail of the Practice
Development Facilitator to help you run a staff
workshop and interview users skills
Trust the practice facilitation tools and avoid rescuing a
situation… avoid filling the silences
Avail of the support of a Practice Development
Facilitator
Keep records of your steps for your report..
Keep focused …and let the findings guide you!