‘Nursing in the Community’

Community Care for People with

Sickle Cell Disorders in Islington

Supporting Care at Different Levels

Lorna Bennett (September 2008)

 Improving SCD community care
Where were we before?
Sickle Cell and Thalassaemia service with limited ability to
provide alternative to hospital care
Where are we heading?
Working to improve access and quality of care
Where are we now?
First community nurse matron in UK in an integrated team
How do we get to where we are going?
Structures, strategies and priorities are now in place
 Our SCaT Centre team
Nkechi Anyanwu: - Senior haemoglobinopathy counsellor
Matty Asante – Owusu: - Community nurse matron
Dr Lorna Bennett: - Clinical service manager/ hbthy counsellor
Michael Coker: - Centre administrative manager
Dr Michael Evangeli: - Clinical psychologist
Moira O’Leary: - Administrator
Gary Kinnane: - Administrator /Database administrator
Solomon Osinde: - Social worker senior practitioner
Dr Jane Wai Ogosu: - Locum haemoglobinopathy counsellor
The Structures – Staff support
Steering Group is in place for the SCaT
centre to achieve the improvement

Consultant Haematologist providing

Sickle Cell and clinical leadership for the SCaT centre
Thalassaemia
Community Centre Clinical/ psychological and social work
supervision is in place. Community
Matron gets peer support from a
network of other CMs

SCaT centre established staff, new staff and

centre activities managed by a Clinical Service
Manager
Structures –
SCaT Improving community care
for adults with SCD

Centre
Care of people
with a disorder
All staff

activities
National
Genetics
SCAT Education
Counselling and
COMMUNITY Centre
Screening
CENTRE PEGASUS
Hbthy
Hbthy

CLANS Database NHS ANC Standards

Community
awareness and
Users Group
Hbthy

Sustained Users Forum from 1989

 Adult (SCD) NHS Standards -
Community Care Framework
Outpatients
Stroke & Day
Prevention & Assessments
Education Phlebotomy Areas to
improve are
Expert
Genetic crossed
Patient
Counselling
Programme
One Stop
Shop
Support
Public & Research
Professional Audit &
Education Evaluation

Nurse
Outreach • Specialist nurse manager &
Prescribing &
Services Administrator
Welfare Home care
Services • New or improved premises
• Drug funding and free
prescriptions
• Patient information
resources (handbooks)
• Transition planning
Standards Working Group 2008 Chap 2 pp 17-31 • National SCD register
 Structures –
Access to SCD &
Thal care Care of people
with a sickle or
thalassaemia
disorder

Islington All other SCD children,

SCD Adults
referrals to thalassaemia
For high level input
the SCaT Centre adults & children
‘flagged’
Hbthy Couns Hbthy Couns
CM, SW and Psy

It is made clear to the public, patients and professionals that we have an

inclusive service, that is accessible to all with (or at risk) of a
haemoglobin disorder.
 The Strategy - 1/3

Organise SCD care on 3 levels

Level 3
Adults
with SCD Case Management
who are
(DH 2004 NHS unwell a lot of CM, SW & Psy
time
Improvement plan) (Islington)

Level 2 Disease Management

Adults with SCD
who are at risk of becoming unwell
a lot of time
CM, SW, PSY &
Hbthy Coun

Level I Supported Self Care

Adults with SCD
who may need
70 – 80% patients
support
from time to Hbthy Couns
time

Population wide prevention

 Level 3 patients’ pathway

Patients identified by Patients are

assessed by
patients at risk for re- (a) CM re suitability for Team agree on
hospitalisation tool (PARR) the service suitability of
(b) by other members placing patient on
of the Integrated caseload and
Patients referred by Support Team decide on who will
following internal CM
health and social care referral or directly via
take lead role
professionals the patient or other
professionals

Patients
self referring
 The strategy - 2/3

Continuity of care SCD (▲)

1. Interventions at different levels are joined up
as people with SCD will change levels (↑↓).
2. All team members make a contribution to care
at the different levels via MDT meetings, drop
in sessions or in the users group.
3. There is regular communication between
members of the team, to avoid duplication,
replication or confusion.
 The Strategy -
An alternative to hospital

Unwell ‘Flagged’ Unwell ‘Flag’ self

in hospital to Community at home to Community
Matron Matron

‘Flag’ to
Improve ‘Flag’ to Improve
Social Worker &
care at Social Worker & care at home
Psychologist
home Psychologist
SCaT
SCaT Centre
Centre services
services

Reducing Reliance Preventing Reliance

 Alternative to hospital
1. Our emphasis is to improve community care
and not to reduce hospital admissions.
2. Patients must not feel that if they are unwell,
they cannot attend hospital as they are ‘costly’
to the hospital, PCT or NHS.
3. Our key message is that the service is now
providing an alternative to hospital care, for
those clients that would benefit.
4. A community alternative is ultimately more
beneficial and less expensive for patients, the
hospitals, PCTs and the NHS.
 Early days outcome
Number of avoided inappropriate secondary care attendances, using
1st October to 31st March 2008 data and extrapolated for the full year effect

Number Cost Number of Cost

Number of of bed Savings Number of bed days Savings
attendances days (Oct – Feb) attendances Saved (full
Type of avoided Saved avoided (full year) year)
attendances (Oct-Feb) (Oct-Feb) (full year)
Emergency
Department
attendances 1 N/a 73 2.4 N/a 175
Inpatient
admissions 4 46 5777 9.6 110.4 13865
Outpatient
appointments 6 N/a 516 14.4 N/a 1238
TOTAL 11 46 6366 26.4 110.4 15278
 A note of caution
(a) Avoidance was bereft of any probable cost of secondary
complications
(b) Only the community matron’s impact is estimated within
the 5 months period
(c) Avoidance of secondary care attendance pre the audit
period is not included
(d) Whilst secondary care use may have been avoided,
costs and bed days saved does not take into account any
increased use of any other services as a result of the saved
admission
(e) Lack of a costing exercise for the integrated team’s non
clinical activities leading to hospital avoidance
Ref: M. Evangeli, L. Bennett et al (2008) Interim Report, SCaT Centre, Islington PCT
 How do we get there?
Prevent or address barriers to a successful
outcome e.g.:
2. Good marketing of SCaT services reducing
anxiety and confusion for users and HCPs.
3. Competent staff that can provide holistic care.
4. Effective forum for discussing issues of concern
(Steering group and Support group).
5. Positive working culture is promoted for team
dynamics; valuing diversity; communication;
professional boundaries to be respected.
6. No ‘Lip service’ to users engagement.
EXERCISE & DISCUSSION

Taking into account the two service

models…..
What are the risks and benefits
of moving sickle cell care
closer to home?