1. Liz Keenan Clinical Nurse specialist The National Hospital for Neurology and Neurosurgery, Queen Square

2. 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.

3. Education post pump..  Standard information on long term management  Written discharge report and  Standard letters send to DN, GP and patient Standard pathway of care

4. Current pathway  Admission to a rehab ward  Ward nurse familiar with caring for people with complex needs  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?

5. FoNS opportunity.. Opportunity for a team approach to step back, reflect and complete a Claims Concerns and Issues (CCI)

6. 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

7. First step… identify who needs to be involved!  Who are my stakeholders ?  MDT  Nurses on rehab ward  Ethics or service evaluation  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

8. Challenges…. Complete a focus group with ward staff?  Never a good time to release staff  Shifts always busy  BE CREATIVE  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  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

9. What we have done ? Team evaluatio n Staff evaluatio n Patient evaluatio n Carer evaluatio n

10. Did emotional touch points help our service evaluation?  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

11. People invited to select a card / cards that best answered the question being asked

12. What cards were selected & why?

13. Cards selected..  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

14. Poster at UCLH Poster for Rehabilitation in Multiple Sclerosis ITB national forum Raising awareness

15. June 2014 !  Change of ward.. new setting and new staff

16. 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

17. Next steps !  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  Plan a lunch event on 19 th of December!

18. Top tips…. 1. Allows one to reflect and stand back from a service 2. Get your project on the agenda for team meetings 3. Use the tools from the FoNS workshops to up skill as this can have a ‘ripple effect’ in clinical practice 4. Have confidence and avail of the Practice Development Facilitator to help you run a staff workshop and interview users skills 5. Trust the practice facilitation tools and avoid rescuing a situation… avoid filling the silences 6. Avail of the support of a Practice Development Facilitator 7. Keep records of your steps for your report.. 8. Keep focused …and let the findings guide you!