Parkinson’s Advanced Symptoms Unit (PASU)

1. Parkinson’s Advanced Symptoms Unit (PASU) ‘Innovating for Improvement’ Victoria Fairhall Clinical Lead Physiotherapist: Neurosciences James Cook University Hospital

2. Aims • To explore the PASU model • To describe how challenging the ‘business as usual model’ is effective for this patient population & the wider impact on core services • To present the opportunity for people to explore whether this model could work within their organisational structure

3. Story of PASU • In Teesside there are over 1000 people under the care of our Parkinson’s Specialist team. • Typically patients get x2 15 minute review appointments per year with Neurosciences, if reviews are required in between people are ‘squeezed in’ We try our best but unfortunately….. • If you are a person with PD experiencing motor problems, developing dementia, hallucinating or falling you simply cannot wait to be seen by a member of the team.

4. What is PASU? • A novel PILOT outpatient service run by South Tees Hospital NHS Trust (based at Redcar Primary Care Hospital) every Wednesday • Pilot is supported by a £75,000 grant from the Health Foundation (independent healthcare charity) & support from STCCG & Tees Esk &Wear Valleys NHS Foundation Trust • Clinic offers flexible slots, dependant on clinical need, patients are referred for assessment by the wider local healthcare team or on occasions patients with advanced symptoms may self refer via a telephone triage service. Patients are all generally seen within 7 days

5. What is PASU? • PASU offers detailed multi-disciplinary assessments without the pressures of a regular clinic environment, if required the team can also visit the patient at home for intervention • Neurologist, PDSN, CPN, Pharmacist, OT, Neuro-Physiotherapist & Generic therapy assistant • PASU functions as a ‘one-stop-shop’ to address a specific clinical need. Some attend for a number of weeks until symptoms have stabilised and for others it allows ‘close monitoring’ to ensure treatment complications are minimised. • PASU offers support for patients with not only MOTOR COMPLICATIONS but also for those with DEMENTIA and PSYCHOSIS.

6. PASU…UK’s First! • A RAPID ACCESS, COMMUNITY BASED service for patients with advanced Parkinson’s Disease addressing both PHYSICAL & MENTAL WELL-BEING ….this is a first in the UK!! Since opening our doors in September PASU has seen over 80 complex patients. Our previous response time for a combined MDT assessment was 120 days, PASU has reduced this to 10. Assessments last an average of 2 hours with patients typically seeing 3 members of the team.

7. Cost Benefits of ‘true’ MDT Working • NICE guidelines recommend that patients with PD receive input from PD ‘specialists’, including nurse specialists, as well as Physio & OT. For more complex patients, such as our cohort, mental health is also a major issue. • In total, the current service model costs the commissioners up to £1010 - if all members of the team are required. • PASU Model costs only £450 for a full team follow up with community visits • PASU has increased the efficiency of the parallel “routine” Parkinson’s clinic. We have been able to offer 10 additional appointments per month in this clinic, reducing our waiting time from 6 months, to 4 months.

8. Physiotherapy in PASU • 0.4 WTE Band 6 Physiotherapist, 1 clinic day + 1 Community follow up day • Standard/Evidence based Physiotherapeutic treatment interventions….cueing, gait re-education, falls prevention strategies, provision of walking aids etc….nothing new!! INNOVATION • Close working relationship with CPN (See ‘Bill’s’ story ) • True example of co-production…allowing patients/carers to shape the service that they receive based on what is important to them • Flexibility for rapid Physiotherapy community follow up’s at patient’s home • Generic therapy assistant to facilitate social re-integration dependent on patient’s goals…realising the value & impact on motor/psychological well-being (See Tim’s story)

9. ‘Bill’s’ Story. 72 year old gentleman with 12 year history of PD. Experiencing multiple falls at home, previous hip fracture. Episodes of freezing/festination. Recent diagnosis of Parkinson’s Dementia. • Seen in clinic by Pharmacist, Neuro-Physio & CPN. • The questioning in assessment provoked by the CPN revealed that ‘Bill’ was experiencing regular hallucinations, he was seeing flames on the carpet in his lounge, he was trying to place his wheeled frame over the ‘flames’ and this was causing him to fall. The pharmacist established that the hallucinations were not a side effect of medication but were a symptom of the dementia. Outcome: Bill receives intervention at home from CPN…not Physio involvement for gait/balance retraining. Neuro-Physio learns importance of including questions re visual hallucinations as part of falls risk assessment when dealing with dementia patients.

10. ‘Tim’s’ Story • Tim had sustained numerous falls over 2 years ago and consequently had lost confidence in mobilising and had not ventured outdoors at all. Tim had consequently become withdrawn, claimed he looked forward to little and felt “useless”. Tim’s family were struggling to manage his reduced mobility and were concerned re his mood. Following assessment by Physio/OT a rehab program and goals were established, over the course of several weeks Tim’s mood lifted, Therapy Assistant built up good rapport and was able to persuade Tim to consider attending a wood carving class which is something he had previously enjoyed several years before. Tim’s family felt unable to take him, Tim agreed to attend the class with Therapy Assistant who challenged the existing invisible barrier between ‘health Vs social model’. Tim now attends the group regularly, he is more mobile, his self efficacy is improved and he feels stimulated from a cognitive perspective.

11. Outcome Measures Feedback is a core feature of the PASU model. We have been collecting formal outcome measures for both patients and carers, as well as informal feedback and video interviews • Purposefully avoided complex and time consuming research tools • Measures are all widely available, free to use and user-friendly, the hope is that this will help others to judge externally validity • See handouts for list of measures!

12. Future challenges • Evidencing the cost savings in the time available…ensuring that commissioners are able to review the data and feel confident to commit to longer term funding at the end of the pilot • Gaining agreement from all the key stakeholders that they value the service and can see the cost benefits of the model of care (so far PASU has seen patients from over 6 CCG areas!) • Many of the cost savings will be in social care.. How we engage with social services is therefore essential.

13. Replicating the model…. • PASU is one of a number of projects feeding into the Parkinson’s Excellence Network, both regionally and nationally, this provides a great opportunity to share the model with others making the experiences & metrics available to anybody with an interest in setting up a similar service. BUT…. IS THIS MODEL REPLICABLE ELSEWHERE?? • How open to change is your service? • What financial constraints exist within your organisation? • Can you recruit staff, provide backfill or prepare to change existing job roles?

14. You can do this too! The PASU team believe that the type of intervention we can deliver via this model has far reaching benefits for service users, the clinical staff involved aswell as proving to be a cost efficient model in the real world of today’s NHS.

15. QUESTIONS PASU: Clinic contact number 01642-854319. Contact details: victoria.fairhall@stees.nhs.uk Clinical Lead Physiotherapist Neurosciences, James Cook University Hospital, 01642-282610