10.1 word cloud - web viewan average specialist physio/ot home assessment takes 90 minutes. average...

Parkinson’s Advanced Symptoms Unit (PASU)Business case

Dr Neil Archibald, Consultant NeurologistLucy Tulloch, Service Manager, Neurosciences

13 June 2016

Dr Neil Archibald 1Lucy Tulloch

Executive SummaryThe Parkinson’s Advanced Symptoms Unit (PASU) is a novel outpatient service run by South Tees Hospitals NHS FT in partnership with Tees Esk & Wear Valleys NHS FT.

It is currently funded as a twelve month Innovating for Improvement national demonstrator pilot by The Health Foundation, with accommodation costs at Redcar PCH met by South Tees CCG.

Patients and carers receive assessment, treatment and support from a multi-disciplinary team, with the aim of providing an integrated approach and targeted interventions to optimize the care of patients with Parkinson’s Disease (PD) at highest risk of admission to acute hospital services.

The MDT comprises consultant neurologist, PD specialist nurse, community psychiatric nurse, pharmacist, physiotherapist, occupational therapist and therapy assistant. The team also have close working relationships with psychiatry services.

Evaluation of the pilot at the mid-point (6 months) demonstrated the positive impact the service has made:

Reduction in acute hospital admissions

Reduction in length of stay

Reduction in cost of initiation of clozapine and apomorphine

Patient satisfaction

Carer satisfaction

On the basis of these impacts, the business case is made for sustaining this service beyond the pilot, i.e. from September 2016.

A local tariff of £450 per patient episode of care at the PASU is proposed (fully inclusive). This is triggered by attendance at the multidisciplinary clinic which is run on a day hospital with the patient and carer(s) accessing all members of the MDT relevant to their own circumstances. However it also includes all follow-up activity associated with that attendance, for example home visits by the CPN, OT, physio or therapy assistant to implement interventions.

Based on providing the PASU service to 276 patients the total cost across commissioners will be £124,200, of which 35% is South Tees CCG, 20% HAST CCG, 19% HRW CCG, 12% DDES CCG and 6% other CCGs.

South Tees CCG, on behalf of the wider Tees Valley CCGs, and Hambleton Richmondshire and Whitby CCGs are therefore asked to support this proposal and commission the service in order to sustain the patients benefit and wider health economy return on investment.


1. Service ModelIn Teesside, our Parkinson’s team has 1000 patients under its care. The service is led by two Parkinson’s disease nurse specialists (PDNS), Zenita and Sue, supported by a neurologist, Dr Neil Archibald and a pharmacist, Viv Horton. Referrals are made to physiotherapy (physio) and occupational therapy (OT), as required.

We are typically able to offer two, 15 minute review appointments per year and, if issues arise in the intervening period, we squeeze people in as best we can. We think we do a pretty good job, but our response time to problems can be long and, if we need to involve other specialties, months can pass before help is at hand.

If you are hallucinating, developing dementia, freezing multiple times per day and falling, you simply cannot wait that long. If you are a carer for that person, you cannot wait that long. If you are the team trying to help your patient, you cannot wait that long and, if you are the GP, you will probably end up admitting the patient to hospital.

We want to do better … and we think we can.

The Parkinson’s Advanced Symptoms Unit (PASU) is a novel outpatient service, run by South Tees Hospitals NHS Foundation Trust. It is staffed by a neurologist, PDNS, community psychiatric nurse, pharmacist, physiotherapist, occupational therapist and therapy assistant.

PASU offers flexible scheduling of patient slots, dependent upon clinical need. Patients can self-refer, or be sent for assessment by any member of the local healthcare team. Patients with complex needs, contacting the PD helpline, are offered an appointment in PASU within the next seven days. Referrals also come from other clinicians within the region and community teams (GPs, matrons, physiotherapists).

On arrival, visitors to the clinic are asked to fill in baseline questionnaires looking at self-rated quality of health (LTC 6; EQ-5D-5L) and caregiver stress (caregiver strain index). We will reassess these, following our interventions, to quantify impact. In addition, we will assess both clinician and patient rated improvement at follow-up (patient/clinician global improvement-C).

We offer detailed assessments, usually be several members of the MDT, without the time pressures of a normal clinic environment. During clinic appointments, we use standardised physiotherapy, occupational therapy and mental health interventions.

Once a management plan has been agreed, patients are asked to keep in touch with the team by phone and email, and can be reviewed again as required. PASU team members also deliver interventions in the patient’s own home. Home assessments from the therapy team and CPN provide another opportunity to evaluate progress.


These are often performed within 24 hours of attending PASU. We do not pre-book appointments in advance, ensuring the service remains responsive to need.

For many patients, PASU functions as a one-stop shop to address a specific clinical need. Others attend for a number of weeks, until their condition has stabilised. PASU allows for closer monitoring of higher risk patients, ensuring that treatment complications are minimised. It offers support not just for patients with motor complications, but also for those with dementia and psychosis.

A rapid access, community-based, self-referral service for patients with advanced PD, addressing both physical and mental well-being, is a first in the UK.

As a team, we finally feel we can deliver timely interventions for complex problems and feedback from patients and carers alike has been fantastic. PASU has helped streamline other parts of our service and, as a result, waiting times for other patients have reduced.


We have been assessing the impact of PASU using validated health outcome measures, as well as other key metrics, such as hospital admission/re-admission rates, carer stress and patient quality of life.

Defining the key healthcare metrics for the project has been very important. We decided early in the project to record data relevant to patients and carers, and that would provide evidence of “quality” and “impact”. Other metrics focus on whether our service can reduce the cost of healthcare, by reducing unscheduled care and complications in this high risk group.

2. Clinical Need

Advanced PD is associated with a number of complications. These include:

• motor fluctuations - freezing, excessive involuntary movements, severe tremor• postural instability - leading to falls and injury• dementia - characterised by visual hallucinations, daytime drowsiness,

fragmented nocturnal sleep and cognitive decline• delusional psychosis - in the context of PD dementia, or as a separate entity

These complications are associated with increased morbidity, caregiver stress and early nursing home placement.

Central to the PASU model is assessing caregiver strain and providing interventions to reduce this. We know that the single largest driver of unscheduled admission to nursing care, for example, is caregiver strain, usually as a result of long-term cognitive and psychotic symptoms in PD. Our hope was to be able to demonstrate that, by providing timely access to specialist care, with an emphasis on mental health issues, we would show a reduction in caregiver strain. A proxy measure of this would be a reduction in emergency admissions to medical or psychiatric care.

The PASU was set up in an attempt to meet the challenges faced by people with advanced PD, by providing rapid access, specialist interventions in a community hub, and also at home.

3. Strategic Fit

Patients with advanced PD are at high risk of unplanned hospital admissions and, once admitted, spend longer in hospital than age-matched controls. It is known that patient mortality and morbidity for frail elderly patients increases with length of stay, whilst their confidence and ability to return to their usual place of residence decreases.


As the condition progresses, admission to 24-hour nursing care becomes likely and so interventions that can maintain the patient’s independence and safety, and carer quality of life, defer or avoid this admission and the consequent financial burden on the health economy.

One of the motivations of PASU is to try and reduce the amount of crisis admissions to hospitals (medical, fracture units, A&E, psychiatric), respite care and long-term nursing care. Unscheduled care is extremely costly, both to hospital trusts and commissioning bodies. For example, over 2014/15, the total bill for Parkinson’s disease admissions in South Tees was £1.7m, with complications such as urinary tract infection (£181k), pneumonia (£147k) and hip procedures (£132k) proving particularly costly. Although not specifically “coded” for, many other admissions are due to caregiver strain, hallucinations, delirium and dementia.

Costs are spread between hospital trusts, local commissioners and local authorities.

4. Service Performance and Impact

Since opening our doors in September 2015, we have seen 117 patients.

The average time from referral to review is 10 days. Previously, our response time for an MDT assessment, with mental health involvement was 120 days.

Assessments typically last 2 hours, with patients seeing, on average, 3 members of the team, whilst in the clinic itself.

Patients and carers are encouraged to use the PD Helpline, if there are problems, and interventions are delivered in clinic, or at home, depending on clinical need.

Follow-up at home typically occurs through physio, OT and CPN visits. Over 50% of patients attending PASU will have a home assessment, usually within 7 days of attendance (if urgent – within 24 hours). Feedback from these visits is given to the MDT the following week.

An average specialist physio/OT home assessment takes 90 minutes. Average therapy home follow-up within the service is 3 visits, each lasting 60 minutes. Interventions from the PASU therapy assistant usually involve 8 additional sessions, each lasting 60 minutes.

Telephone administration - liaising with other teams in the region; offering specialist therapy advice to other services etc. involves on average of 90 minutes per patient.

Triaging complex patients into the PASU service 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.

Additional qualitative impacts include:

Taster sessions for social and exercise opportunities.

Facilitating ongoing engagement in community resources - in line with our remit of empowering self-management in the future. The most notable outcome from this aspect of PASU is the “Tremorloes” choir, for patients and carers affected by Parkinson’s.

An education programme for people affected by Parkinson’s disease dementia, offering tips on management of symptoms, whilst allowing patients and carers to meet others affected by a similar problem.

We have also just run the first educational session for carers, with excellent feedback.

Multiple healthcare professionals have also attended for additional training through PASU. These include:

o Care of the Elderly Registrars - JCUH (4)

o Pharmacist – Sunderland Royal Hospital (1)

o Physiotherapist students – Teesside University (3)

o Nursing students – Teesside University (6)

o CPNs – TEWV (2)


5. Case MixOf the patients seen to date, there has been a considerable spread in terms of geographical location.


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Most patients are in what would be referred to as the “complex” or “palliative” stages of their disease. Disease severity, as measured by Hoehn and Yahr stage, demonstrates that patients attending PASU tend to have complex Parkinson’s with considerable disability and care needs.

Hoehn & Yahr No. of patients Description

1 1

2 7 Bilateral disease; balance good

3 33 Bilateral disease; postural instability; physically independent

4 15 Severe disability; still able to walk or stand unassisted

5 1

As can be seen from the table below, the needs of patients vary greatly, but most will require input from at least 3 members of the PD team during the clinic assessment. Further input, delivered in the community, is led by the therapists, PD nurses and Community Psychiatric Nurse (CPN).

Clinical needs No. of patientsNeurologist 65PD nurse 49CPN 23Pharmacist 28Occupational therapist 33Physiotherapist 31Therapy assistant 28


6. Quality MetricsWe have been careful to choose metrics that have direct relevance to clinical practitioners, and have avoided complex and time-consuming research tools. All are free to use, quick to complete, familiar to practitioners and widely available. We hope this approach will help others to judge the external validity of our findings.

Data collected at first attendance and follow-up demonstrates that the PASU delivers a high-quality service with impact on healthcare engagement, quality of life and caregiver strain.

Data collection is ongoing but, at this interim stage, we have seen encouraging results. There has been an increase in engagement in healthcare, showing that we are providing patients with the tools they need to manage their own condition. This data is illustrated for each patient/carer, rather than as an “average”, and allows trends to be explored whilst recognizing that every individual’s response to treatment is different.


We have also seen improvements in quality of life, as measured by the EQ-5D and “Your Health Today” questionnaires.


Caregiver strain is a complex issue. Whilst some carers report significant reductions in stress following attendance at PASU, for many others, paradoxically, levels have increased. We would like to explore this further but suspect that, by allowing our carer group the opportunity to articulate their stress, we are seeing raised awareness of the issue. Work is underway in PASU to try to support carers better – individual carer assessments; caregiver education events; emergency health care plans.

We have also seen improvements in health, as rated by both patients and members of the PASU team, using the Clinical Global Impression Scale and Patient Global Impression Scale. Importantly, the scale of these improvements are “meaningful” and “clinically relevant”.

7. Cost Impact 7.1 Current Service Costs

The current service costs, met by local commissioners, can be measured by looking at the individual components of “business as usual”.

NICE guidelines recommend that patients with Parkinson’s disease receive input from PD specialists, including nurse specialists, as well as from physiotherapy and occupational therapy. For more complex patients, such as our cohort, mental health is also a major issue.

The component parts of meeting this need are:

• Neurology multi professional review appointment, two 15 minute slots @ £130

• Physiotherapy appointment @ £45 (via block contract)

• Occupational therapy appointment @ £45 (via block contract)

• Mental health @ £318 (tariff for Mental Health Services for Older People assessment)

In total, this service model costs the commissioners up to £668 - if all members of the team are required – as well as building in considerable delay as the patient progresses through it.

This costing model does not include any further follow up by the mental health or therapy services.

7.2 Proposed Service Costs

In contrast, the PASU model offers a true, multi-disciplinary service, on a single site, within 10 days.

The proposed tariff, covering the service costs is £450 per patient episode.


This provides for a full team assessment in clinic, inclusive of subsequent community therapist and community psychiatric nurse follow-up. This is additional resource dedicated to the PASU service not currently provided with block contract services.

As an activity-based tariff, the costs of the resources are met by the providers (STHFT and TEWVFT) with the onus on the service to deliver the patient episodes to generate tariff income.

This tariff is a reduction of £218 from the ‘business as usual’ model with a significant improvement in quality and access.

Therefore across a cohort of 276 patient episodes per annum, the cost of the service will be £124,200 compared to up to £184,368 to provide the cohort of patients with the traditional service model they currently access.

The breakdown by commissioner, based on case mix to date:

CCG Percentage of case mix Expected cost

South Tees CCG 35% £43,470

HAST CCG 20% £24,840

HRW CCG 19% £23,598

DDES CCG 12% £14,904

Darlington

Harrogate & Rural District

East Riding of Yorkshire

Scarborough & Ryedale

6% £7,452 combined total


Figure 2.Infographic showing “business as usual” versus the PASU model, for patients with complex PD

7.3 Proposed Service Financial Benefits

The PASU service has the potential to reduce costs in the following areas, and as the project progress these will each be evaluated. Initial impacts have been detected in the area of acute medical care (7.3.1, 7.3.2 below), where the average tariff cost incurred for patients with a diagnosis of PD is £2400 per acute admission.

Cost (£) Who pays?

Acute medical care 2400 CCG

Acute hip fracture care 8600 CCG


Cost (£) Who pays?

A&E attendance 150 CCG

Acute psychiatric admission 10,740 CCG

Respite care 500/week Local authority

Nursing home admission 615/week Local authority (£500)CCG (£115)

EMI nursing home admission 650/week Local authority (£500)CCG (£150)


7.3.1 Reduction in admissions

Early data suggest that commencement of the PASU initiative has been associated with a reduction in unscheduled admissions to acute medical and surgical services at South Tees NHS FT, for patients with PD.

ALL ADMISSIONS EMERGENCY

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105

210

315

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215

PD admissions to JCUH

Oct ’14 - Mar ’15 (pre-PASU)Oct ’15 - Mar ’16 (post-PASU)

This 16% reduction in admissions is equivalent to 40 admissions. There are, of course, confounding factors in this data and it is impossible to prove that the PASU has directly prevented these admissions. The overall trend for South Tees NHSFT admission is down only 6%, suggesting that, whatever the reason, Parkinson’s admissions have fallen in 2015, exceeding the local trend for other conditions, with an additional 25 admissions avoided, saving potentially £60,000.

PASU’s service model allows for diagnosis of dementia and psychosis, with subsequent education of carers and timely mental health interventions (cognitive enhancers, anti-psychotic medication etc.) It also allows for intensive physiotherapy and OT interventions in patients at high risk of falls and fractures. Any reductions in hospitalization are likely to come from these interventions.

In addition, we are in the process of developing Emergency Health Care Plans for patients at highest risk of admission, particularly where this may not be in their best interests. Given that this is a recent intervention, it is unlikely that care planning has accounted for any of this reduction, to date.


Neil Archibald, 06/15/16,

Best not to cover admissions from PASU patients versus non-PASU. Basically, there are 215 emergency admissions in 6 months for a denominator of about 1000. In PASU, the most up to date data suggest 15 admissions for a denominator of 117. It’s a bit hard to compare like for like but the numbers suggest that our highest risk patients are at lower risk of admission if they have been seen by us in PASU.

7.3.2 Reduction in length of stay

Length of stay for PD patients is generally double that of their non-PD counterparts. Our data shows a modest reduction (one day) in length of stay, totaling 215 bed days over the first 6 months of the project, since PASU has been up and running. This is obviously important for PD patients, but also improves patient flow in the hospital for all patients.


Baseline PASU9

1011121415

Length of stay (days)

ALL ADMISSIONSEMERGENCY

7.3.3. Impact on nursing home admissions

Our service currently provides care for 50 PD patients in long-term nursing care. The bulk of these admissions are due to declining mobility, dementia and psychosis and care-giver strain. The annual cost to the local authority, for this group of patients, is approximately £300,000 (£6000 per patient/annum). The approximate cost to the local CCGs is £75,000 (£1500 per patient/annum).

It was anticipated that the PASU interventions would reduce admissions to long-term nursing care amongst the patient group.

In the baseline collection period (Oct ’14 - Jun ’15), we saw 8 PD patients move in to nursing care from our caseload. During the PASU period (Oct ‘15 - Jun ’16), we have so far seen 7 nursing home admissions. It is, therefore, not possible at this time to show a reduction in nursing care home admissions attributable to the PASU intervention.


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Nursing home admissions 2014 - 2016

Oct-Dec ‘14 Jan-Mar ’15 Apr-Jun ‘15 Jul-Sep ‘15 Oct-Dec '15Jan-Mar ’16 Apr-Jun '16

7.3.4 Impact on Mental Health services: clozapine initiation

Improving mental health is a key component of the PASU clinic and setting up the first Clozapine service in the North East of England has been a major outcome form the project. Clozapine is the only NICE-approved, evidence-based therapy for psychosis in Parkinson’s disease and yet access is restricted in the UK, largely due to “organisational" barriers.

Because of the cross-speciality nature of the PASU service, we have been able to shift clozapine initiation from a “crisis” intervention to the “planned” one. Initially, we admitted patients to Roseberry Park for treatment but, as the service has developed, we have been able to shift this into the community, using the PASU as a point of coordination.

To date, we have 6 clozapine patients on our caseload; 4 of these have commenced outpatient treatment. This service model offers a potential cost saving to commissioners of £9,820 per patient (£39,280 in total) when compared against initiation during a mental health crisis, and £6,598 per patient (£26,392 in total), when compared against a planned inpatient initiation and titration.


Cost (£)0

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5,500

8,250

11,00010,740

7,518

920

Cost of clozapine initiation in PD PsychosisCrisis Psychosis AdmissionPlanned Clozapine AdmissionPASU Clozapine Titration

7.3.5 Reduction in elective admissions: apomorphine initiation

Interventions that would have previously required admission to the ward, such as apomorphine infusion initiation, can now been started from within a day case setting. Waiting times for this intervention have fallen from 8 weeks to 2 weeks, with a cost reduction to commissioners of £1040 per patient (previously £1400 for a 7 day admission; now £360 for a 3-day, day case initiation). We have now initiated 12 patients on apomorphine in this setting, providing an actual cost saving of £12,480.

7.3.6 Summary of financial benefits accrued

Over nine months September 2015 to May 2016 inclusive,

Reduction in admissions: £60,000 (6 months data)

Reduction in length of stay:£43,000 value of bed days saved (6 months data)

Nursing home admissions: No verifiable benefit to date

Clozapine initiation: £26,392 (compared to planned inpatient)

Apomorphine initiation: £12,480


8. Local TariffA local tariff of £450 per patient episode is proposed based on:

Team role Band WTE

Consultant Neurologist Cons 1.5PA

PD Nurse Specialist B7 0.1

Cons Psychiatrist Cons in kind

Community Psych Nurse B7 0.4

Occupational Therapy B7 0.4

Physiotherapy B7 0.4

Therapy Assistant B3 0.4

Pharmacist B8a 0.1Admin Support B2 0.2Travel costs for staffConsumables for clinicRent of RPCH day hospital half a day per week (or equivalent clinical space at RPCH)

Overheads

9. Project Timelines

We are on time to deliver both the service, and the preliminary data, to stakeholders. The clinic opened its doors in mid-September and we have built up our patient numbers, and services, steadily since then.

Follow the link to a more detailed timeline of the project.

http://www.tiki-toki.com/timeline/entry/591775/PASU-timeline/


http://www.tiki-toki.com/timeline/entry/591775/PASU-timeline/

10. Resources

10.1 Word cloudWe have generated a word cloud from the clinic letters of patients seen in the first 6 months of the project. It gives an insight into the kinds of problems faced by our patients.

Interestingly, the theme that emerges most often is “time”. We believe that time spent with our patients is an important determinant of quality of care. Time is something that was lacking in the “business as usual” model, and has become a central tenant of the PASU service.

If we are successful in showing that the model works, it will be the time spent with our patients that has, in part, helped to achieve our aims.


10.2 Videos

Why clozapine matters in Parkinson’s disease This is George, with his daughter Tracey. George has Parkinson's disease, and has been troubled with severe, treatment-resistant hallucinations for months. He and Tracey were struggling at home - both were exhausted and George was very distressed.

https://vimeo.com/153295013

Peter’s story - why mental health matters in Parkinson’s disease

This is Peter. He has Parkinson's disease. Recently, he has been struggling with hallucinations. As you can see, these are having a huge impact on his quality of life and are becoming increasingly difficult to deal with. Peter, and his family, have kindly agreed to share their story with you, so we can raise the profile of this complication and help you understand why mental health matters in Parkinson's.

(PS the subtitles are as much because of Peter's Parkinson's, as they are his excellent Belfast accent - which I share!)


The Tremorloes

A little out of season now, but thanks to the hard work and enthusiasm of our therapy assistant - Jan - we now have a choir up and running. We think there are good scientific reasons why singing is good for people with Parkinson’s. Better yet, the choir has a terrific social aspect to it - and a brilliant name to boot.

Jan is currently working with a choir master who will take on the running of the group in the future.


10.3 WebsiteInformation for patients can be found on the South Tees NHS Trust website.

http://southtees.nhs.uk/services/neurology/parkinsons-disease-service/parkinsons-advanced-symptom-unit-pasu/







10.4 Service user quotes

Dr Neil ArchibaldLucy Tulloch 25

10.5 PASU staff quotes


10.6 Details of key questionnaires used

EQ-5D-5L

Applicable to a wide range of health conditions and treatments, it provides a simple descriptive profile and a single index value for health status that can be used in the clinical and economic evaluation of health care. It is cognitively undemanding, taking only a few minutes to complete.

(time to complete - 5 minutes)

LTC-6

The LTC6 Questionnaire asks patients with a long term condition about their healthcare over the last 12 months. It includes questions about involvement in decision- making, although the focus is on self-management.


Caregiver strain index

Data collection tool designed to give some idea of the impact of caring for a person with advanced Parkinson’s disease.


Patient Global Improvement-C

Simple, patient-rated measure of decline/improvement following an intervention - in this case, attendance at the PASU clinic.


Clinician Global Improvement-C

Clinician version of the same tool, validated for use in clinical trials. We felt it would be useful to have a measure of response to our interventions, separate from those patient rated measures.



10.7 Other measures

Canadian Occupational Performance Measure ( COPM )

The Canadian Occupational Performance Measure (COPM) is an individualized, client-centred measure designed for use by occupational therapists to detect change in a client's self-perception of occupational performance over time.

Goal Attainment Scaling ( GAS )

GAS is a method of scoring the extent to which patient’s individual goals are achieved in the course of intervention. In effect, each patient has their own outcome measure but this is scored in a standardised way as to allow statistical analysis. Traditional standardised measures include a standard set of tasks (items) each rated on a standard level. In GAS, tasks are individually identified to suit the patient, and the levels are individually set around their current and expected levels of performance.

Short Version of the Warwick and Edinburgh Mental Well Being Scale (s WEMWBS )

Short 7-item version of the Warwick-Edinburgh Menal Well-Being Scale, which was developed to enable the monitoring of mental wellbeing in the general population and the evaluation of projects, programmes and policies which aim to improve mental wellbeing.

The items are all worded positively and cover both feeling and functioning aspects of mental wellbeing.

Brief Psychiatric Rating Scale ( BPRS - expanded)

Detailed, validated tool for the assessment of psychiatric problems in patients with a wide variety of mental health conditions.



PASU booking sheet and referral criteria


Example of Emergency Health Care Plan

10.1 word cloud - web viewan average specialist physio/ot home assessment takes 90 minutes. average...

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