Population Profiling - Networks

Population Profiling –

Parkinson’s MOVE-hIT

Understanding the Parkinson’s

Population & Patient Pathways

Lucy Mooney

Lead Movement Disorder Nurse Specialist

MOVE-hIT Deputy Director

Southmead Hospital, Bristol

Objectives

• What is the MOVE-hIT?

• Define the BNSSG Parkinson’s population

• Discuss the audit conducted by Neurological

Commissioning Support

• Present the audit findings and recommendations

• Next steps and the development of an integrated care

pathway

What is MOVE-hIT?

• A Health Integration Team (HIT)

• HITs have been developed by Bristol Health

Partners, a collaboration between the NHS

Trusts, the city’s universities and local authorities.

• They are modelled on Academic Health Science

Centres.

• HITs are cross-organisation, interdisciplinary groups

set up to harness research, innovation, education,

patient care and prevention. They aim to achieve

this by working together in new and different ways.

• MOVE-hIT is the BNSSG partnership for Parkinson’s

and Other Movement Disorders.

Objective of MOVE-hIT: To evolve an

internationally recognised programme for

Parkinson’s and other movement disorders

MOVE-hIT Executive Board

Feed into work-stream groups

BNSSG

Commissioners

Movement

Disorders

Education

Movement

Disorders

Research

BNSSG

Core

Service

Delivery

Regional

Advanced

Treatment

Service

Patient & Public Involvement

Industry Involvement

Estimated BNSSG Parkinson’s Population

Total

BNSSG

Region

Bristol South

Gloucester

North

Somerset

Total Parkinson’s

Population

1,780 885 487 408

Population

According to

Parkinson’s Phase:

Diagnostic Phase 195 97 53 45

Maintenance

Phase

719 358 197 165

Complex Phase 598 297 164 137

Palliative Phase 268 133 73 61

Figures kindly provided by Neuronavigator, NCS

BNSSG Service Delivery • First step – Audits for Service Mapping & Design

1. - What are the current PD population needs? √

- What do the population want? √

2. Develop a full understanding of all professional and voluntary services available in BNSSG ~

Without establishing this we would be unable to measure improvement and cost efficiency savings

• We want to work with commissioners to align health and social care budgets and develop a comprehensive care pathway

• Reduce Inequalities

National Context NAO findings on Neurological Services Review against National Service Framework (2005)

• Diagnostic Lead Time is variable

• Information and advice to patients and carers is poor

• Ongoing Care is fragmented and poorly coordinated

• Access to services for people with Parkinson’s and their carers varies according to where they live

• People with Parkinson’s admitted to hospital as an emergency often receive care from health professionals without neurological training

• End of Life Care is variable

Many of the issues identified apply in Bristol

Source: National Audit Office, 2011

BNSSG Parkinson’s Audit by NCS

• Analysis of trends in admissions / length of stay for Parkinson’s between 2009 and 2012/13

• Analysis of primary diagnosis where Parkinson’s was cited as a secondary diagnosis

• Quality audit of services

• Consultation with representatives from the local acute service, community, third sector and service users (focus groups and interviews). Some limitations due to selection bias, but provides a snapshot of the issues

• Cost / benefit analysis

• Prioritisation of areas where outcomes could be improved

• How could the commissioner realise the value of these benefits?

10 QUALITY MARKERS

Blueprint for Audit

Overarching Findings

Quality Marker RAG Status

QM1: Organisational context

QM2: Gathering data and intelligence

QM3: Delivering high quality community services

QM4: Raising awareness and education

QM5: Involving patients and carers

QM6: National guidance

QM7: Delivering integrated care

QM8: Encouraging innovation

QM9: Measuring success

QM10: User focus - supporting family and carers

Overall

Quality Neurology Audit Tool

Some Key Points • Dedicated and experienced staff across the statutory

services & in acute settings.

• Examples of good and notable practice.

However:

• There is a lack of strategic planning, coordination and

utilised data for service and population planning.

• Services often work in isolation and are not ‘joined up’.

• There are long waiting lists for follow up.

• Monitoring of patients is variable, depending on

location. The result is emergency hospital admissions.

• GP’s require more education to know when to refer and

who they can manage.

Headlines

• Not one patient seen in the review had a care plan

• Integrated assessments are rare and there are a lack of integrated care pathways

• Problems with record sharing between health & others (particularly social services & mental health)

• Confusion from patients around where to get information particularly following diagnosis – much of the information is given by Parkinson’s UK, but patients felt much of the information has negative connotations

• High value placed on a single number for contact

Headlines

• Services work well for those that are in the service, but

not in all locations. Weston S-M was a cause for concern

• More information is needed at diagnosis with a contact

number “What do we do after diagnosis”?

• Referral criteria needed for GP’s so they know who and

when to refer

• More equitable provision of specialist nurses needed to

cover the community and care of the elderly patients

Headlines

• Rehabilitation services need to be developed in some areas, alongside an integrated care pathway that is agreed by all professionals and services involved in care

• More proactive management of patients could slow deterioration, keeping patients in a maintenance phase for longer

• Better access to self-care programmes and information - not all rehabilitation has to be part of health care

• A key worker system to improve the co-ordination of care

Headlines • Need stronger links to social services to guarantee

integration

• There are issues with patients admitted to non-

neurological wards with regards to staff understanding of

the condition

• Introduction of an admission alert system was highlighted

• There is scope for Parkinson’s training to be rolled out

across non-neurological settings including to GP’s and

care homes

NHS BRISTOL CCG – A&E ADMISSION COSTS

FOR A SECONDARY DIAGNOSIS 2013/14

NHS BRISTOL CCG – A&E ADMISSION COSTS FOR A

PRIMARY DIAGNOSIS 2013/14 BY PROVIDER

Priorities for MOVE-hIT & CCGs

• Pathway – A clear integrated care pathway, incorporating

roles and responsibilities and referral routes is needed for

professionals to work efficiently and improve patient care

and experience

• GP referral triage – so that the right people see a

neurologist or geriatrician

• Risk profiling – so that complex patients are identified

earlier and proactive case management is introduced

Priorities for MOVE-hIT & CCGs

• Information – clear navigation for advice and

information about services and care

- Information needs to be streamlined so that clearer

materials are available to professionals and patients

- It is essential that patients are given clear,

appropriately timed information, both at diagnosis

and to support self-management

• Self-management – Greater support to promote self-

management, independence and lifestyle should be

provided at the earliest stage possible and throughout the

continuum of the condition

Population Risk Profiling to Target

Resources

21 -100% - Low relative Risk

Prevention and Well Being

Promotion

6 -20% - Moderate

Relative Risk

Supported Self Care

0.5 -5% High

Relative Risk

Disease

Management

0 – 0.5%

Very High

Risk

Case

Managem’t

Service Quality

Integrated Service Delivery

Social Services/Third

Sector/Carers

Primary Care (GPs)

Intermediate Care

Specialist

Community

Neurological Teams

Acute

Care (Consultant)

Specialist Nurses could act as integration care brokers coordinated

An Integrated Care Pathway

One single pathway…

…relevant to everyone…

…across all disciplines…

…including all aspects of care…

...from diagnosis to end of life.

Benefits of this Model • Streamlined referral routes and access to

services

• Integrated and coordinated care across the

BNSSG region

• Continuity of care across disciplines

• Reduction in acute hospital admissions due to

Parkinson’s complications

• Facilitates education and awareness for all

professionals

• Greater education and empowerment for patients

to encourage self care

The ICP should be…. • Easily accessible to all

• Intuitive / easy to use

• A resource

• Provide detailed guidance

• Recognise the complexities & multi-faceted nature

of the condition

• Evidence based

• Signpost – treatments, specialists, documents

• Provide contact details

• Provide access / links to patient information

• Live – regularly updated

Process: In a Nutshell 1. Literature and data review √

2. Formation of core professional group √

3. Initial lines of enquiry: scene setting √

4. User survey √

5. Stakeholder event and solutions brainstorming √

6. Creation of ICP

7. Consultation – professionals and service users

8. Launch and actions taken forward

9. Clinicians begin to work in line with pathway as far

as possible

10. Meet with commissioners - onward planning

The ICP developed by

NCS for Parkinson’s in

Norfolk, Great Yarmouth

& Waveney

Using the Pathway

A brief intro

helps you

understand

how to use the

pathway

A key tells you what different

colours, symbols and shapes

mean

The ‘Overview’ Pathway

Each main box with a

‘CU’ on takes you to a

more in-depth and

detailed pathway

Icons link to more

information on

specific elements

Working though it: Step 1 We need to start at the ‘Overview

pathway’. Where is your patient?

The GP suspects

that Mr Smith has

Parkinson’s. What

should he do? Mr Smith must

be here. So we

need to look at

‘diagnosis’ more

closely

Diagnosis has a ‘CU’

or ‘close up’ note –

so we can click on it Hyperlink takes

us to CU1

We can click on

these icons and be

taken to the relevant

info

Working through it: Step 2a

Close ups of specific elements of the pathway drill down into core aspects of the pathway

We’re now looking at a close up of diagnosis

Working through it: Step 2b We’ve zoomed in on the specific bit of the

close-up pathway that we need for Mr Smith

This icon

means that

information

provision is

needed

This icon

means that a

key

performance

indicator can

measure how

well this

section of the

pathway does

There may

be an issue

to resolve

around

governance

This icon means

there is further

supporting info

for this

Viewing the Info Separately

To see all of the KPIs, or

all of the additional info in

one place, select the tab

Scro

ll dow

n

Supporting Resources

There are additional

resources at the end

tab of the document.

Other documents you

might like here include:

• Referral forms

• Checklists & criteria

• Contact details &

directories

• Other relevant

pathways

• Local guidance

This can be added to on a personal or collective level.

NBT Duodopa Pathway

On-Going ManagementInitiation of TreatmentReferral/Assessment ① ② ③

Patient Patient Patient

DISCHARGE FROM DUODOPA PATHWAY

Movement Disorder outpatient clinic at NBT


Patient NOT Suitable

NBT refers to AbbVie Nurse Specialist

Full assessment at NBT

MDT Review

Patient Suitable

Proceed to Initiationof Treatment


Meets eligibility criteria

Action plan for admission completed

Admitted for PEG-J surgery & Duodopa

Titration

Discharged from hospital

Proceed to On-going Management

Eligible and commenced Duodopa treatment

Routine reviews Support & Guidance

With Abbvie Duodopa Nurse at:• 1 week• 1 month• 3 months• 6 months• 12 months

At NBT or with local provider if previously agreed at:• 8 weeks with Consultant• 3 months with Nurse Specialist• 6 months with Consultant • 12 months with Nurse Specialist• Annually with Consultant

Outcome measures & stopping

criteria

Community Support

EMERGENCY MANAGEMENT

②

③

Pathway Overview

Referral made to NBT for assessment for Duodopa

Exclusion Criteria not met- possibility that patient is suitable for Duodopa

PROCEED TO DUODOPA INITIATION

PATHWAY

②

NBT refers to Abbvie Duodopa Nurse

When to refer:→ PD symptoms for at least 5 years→ Levodopa responsive PD→ Severe motor fluctuations→ Have at least 50% "off" periods

Duodopa- ① -Referral and Assessment for Patient Suitability

Refer for Specialist opinion at NBT

Patient review in movement disorder outpatient clinic at NBT


Assessment at home by Abbvie Duodopa Nurse

Proceed to full assessment as inpatient at NBT

MDT Review


Patient Suitable

No significant concerns



If Yes

Exclusion Criteria not met- possibility that patient is suitable for Duodopa

Duodopa- ② -Initiation of Treatment Duodopa- ③ -On-Going Management

Patient

Patient meets exclusion criteria

i

Patient

Eligibility Criteria Met

Action plan for hospital admission completed (for

PEG-J & Duodopa initiation)

Admission to Neurosciencesward for percutaneous

endoscopic gastrostomy with jejunal extension (PEG-J) &

Duodopa titration

Friday:Admission and insertion of PEG-J

Saturday:Recovery/Rest day

Sunday:Withdrawal of PDmedications (see care plan)

Monday-Thursday/Friday:Duodopa titration

Discharge from hospitaland proceed to duodopa ongoing

management pathway

③

Duodopa- ① -Referral and Assessment for Patient Suitability Duodopa- ② -Initiation of Treatment Duodopa- ③ -On-Going Management

i

i

i i i

Eligible for Duodopa and commenced on Treatment

ROUTINE REVIEWS

Support & Guidance:

Information for Carers

Independence advice/risk advice

Travel Protocol

Psychological support

Community Support from Abbvie

nurse/District nurse

With Abbvie Duodopa Nurse at:

• 1 week• 1 month• 3 months• 6 months• 12 months

As an outpatient at NBT or at local provider if previously agreed at:

• 8 weeks with Consultant• 3 months with Nurse Specialist• 6 months with Consultant • 12 months and annuallythereafter with Consultant and Nurse Specialist as a day case.

EMERGENCY MANAGEMENT

In first instance contact specialist centre

PEG-J Tube Issues:• Emergency supply of oral medications (agreed by local team)• 24 Hour helpline• Diet

Duodopa- ① -Referral and assessment for patient suitability Duodopa- ② -Initiation of Treatment Duodopa- ③ -On-Going Management

Patient

Stopping Criteria:

If the patient meets the stopping criteria (see Inclusion/Exlusion Criteria) there will be a formal handover to the local neurology team.

i

OUTCOME MEASURES:Reviewed Annually (atNBT or at local provider if previously agreed )

• UPDRS• Hoehn & Yahr status• Motor fluctuation diary over 3 consecutive days• Non-motor symptom questionnaire• Quality of life outcome (PDQ-39)• Caregiver outcome.

Implementing an ICP

Key point For example…

Some elements are harder to

accomplish.

An ideal part of an ICP is electronic patient

records…

This is a working document. It should be revisited regularly to make sure

it’s still promoting best practice locally.

It requires commitment from all

local professionals involved in

planning and delivering care.

Champions within the pathway will really

help to galvanise its use.

It sets out a framework for positive

practice to improve service

delivery.

The KPIs and QIs help to monitor whether

improvement is happening.

Commissioners can use it to aid

planning of services, governance

and management.

There are commissioning recommendations

built into the pathway.

Any Questions?

Documents

Population Profiling - Networks