Neil Archibald: The Challenge of Change

It has been over 2 years since the Parkinson’s Advanced Symptoms Unit (PASU) opened its doors in Teesside.

To say it has been a challenge would be an understatement. To say it has been worth it is…well you be the judge.

Thanks to an Innovating for Improvement grant from The Health Foundation, back in 2015, we set about trying to change the service model for Parkinson's up in Teesside.

Previously, we had a pretty good service - 2 excellent specialist nurses, a pharmacist and a neurologist - seeing over 1500 patients, across our patch, in a combination of multidisciplinary team (MDT) and nurse-led clinics, day units and in the community.

We were struggling, however, trying to manage complex issues in 15 minute review appointments, and were finding that mental health issues - anxiety, depression, dementia, psychosis - were causing more and more problems.

Enter PASU

Enter PASU - a rapid access, community MDT service, based in Redcar Primary Care Hospital. Staffed by a neurologist, PD nurse, pharmacist, occupational therapist, physiotherapist, therapy assistant and community psychiatric nurse (CPN), the aim was simple: see anyone whose Parkinson's was a problem and sort them out!

Actually, that really was the plan, but we tried to focus on those with motor fluctuations, falls, dementia, psychosis or where we felt care giver strain was escalating. To date, we have seen over 300 patients…and still counting.

We agreed with the local CCGs, and our Trusts (acute and psychiatric) that, if we could show good outcomes at the end of the Health Foundation funding period (12 months), then they would consider longer-term funding. We defined some metrics to assess quality and cost effectiveness and then set to work.

Our argument was that the service was ‘worth’ an enhanced tariff, given the MDT assessment, and this was set at such a level to allow the service to cover staffing costs to the hospitals whilst still providing tangible financial benefits to CCGs and specialist commissioners.

Key aspects

It is hard to cover it all in a short space so, I thought I'd list the key aspects of the service:

• rapid access - we can see patients within 7 days (sometimes sooner)
• joint assessments - medical, nursing, pharmacist, physio, OT, mental health
• home visits - team reviews at home or in nursing homes; home assessment and treatment from therapy team and CPN
• falls assessment and bone health review
• proactive diagnosis/treatment of cognitive impairment and dementia
• community clozapine titration - for treatment-resistant psychosis
• assessment for non-oral therapies - apormorphine, deep brain stimulation, intestinal levodopa gel infusions (Duodopa)
• daycase apormorphine trials
• patient and carer education sessions - anxiety, sleep, dementia, hallucinations etc.
• cognitive stimulation therapy for dementia
• care giver well-being assessments
• activity groups - choir, PD Bootcamp, yoga
• training, liaison and mentorship for health professionals across the region

We have collected data on confidence in self-management using the LTC6 questionnaire, quality of life using the EQ-5D-5L instrument and care giver strain using the MCSI assessment. These are the ‘quality’ metrics - important for us, and important for patients at least.

We have also collected data on admissions to acute medical care, hip fracture units and acute psychiatric units as well as looking at length of stay. Getting to know our patients really well also allows us to track admissions to nursing homes and keep in touch when they get admitted.  We have also been looking at drug costs, particularly the cost of clozapine initiation.

The data suggest we are having a positive impact on self-management, quality of life and care giver strain and that we are seeing fewer crisis admissions to hospital, fewer hip fractures and, perhaps, a reduction in nursing home placements. Costs of drugs therapies have come down as we have moved treatments into the community.

We pulled all this data together both for the Health Foundation project report, and for the local CCGs and specialist commissioners. We have won a National Patient Safety Award for Long-term conditions and a UK Parkinson’s Excellence Network Award. Above all of this, we have an amazing team of passionate people, from across all disciplines, who just keep turning up every week and bringing more and more ideas to better the service.

Challenge of change

So all is great, right? Well, not quite…

Despite all of this effort, the challenge of change remains ever present. Recently, 2 of the 6 local CCGs have pulled funding for their patients, and pressure remains high to see enough patients in the service to cover the cost. We have been asked, yet again, for more data to prove our worth to the CCGs, and this data trawl takes time and effort, particularly in the absence of accurate data systems to mine.

Our excellent CPN has left the service, due to the difficulties of keeping her existing mental health case load running, alongside the Parkinson’s caseload and, to date, we have no agreement from either Trust as to how to replace her - or when. The time we have with patients in clinic has been tightened up a little, making the clinic a little more business-like, and a little less ‘relaxed’, and our business cases, for a third nurse and a full-time CPN, are currently in limbo.

We are seeing, and dealing with, increasing numbers of complex patients and, with a more proactive approach comes increased workloads for our team. We feel we need this expansion to ensure the success of PASU is protected, but are paddling in an evaporating pool of funding, and I don’t need to tell anyone working in the NHS just how tight money is, for hospitals and commissioners alike. Many of the costs of chronic disease are hidden and proving impact in the face of a progressive degenerative disease is challenging.

Am I glad we set up PASU? Yes.

Am I proud of the team we have in place? Undoubtedly.

Are we in a better position than pre-PASU? Of course.

Do patients and carers value PASU? Absolutely.

Would I do it all again? In a heart beat.

Would I recommend you do the same? Well that all depends…what do you think?