Standards for the Clinical Care of

Adults with SCD in the UK

Dr Ade Olujohungbe
Sickle Cell Society Working Group Chair

May 2008

Standards of Care in SCD: Working Towards Better Care May 2008

 Overview
• History
• Objectives
• Standards development & processes
• Next steps
• Critical success factors

Standards of Care in SCD: Working Towards Better Care May 2008

 Why are we doing this?
• Variability of standards across the UK
– Wellcome-Trust Sickle Cell Report (2005) highlighted
key areas of concern for service users

• Compliment other related initiatives

– SCD & Thalassaemia NHS Screening
– Thalassaemia Standards (2005)
– SCD in Childhood: Standards and Guidelines (2006)

Standards of Care in SCD: Working Towards Better Care May 2008

Standards of Care in SCD: Working Towards Better Care May 2008
 Objectives

Standards AND Education

To agree and publish national

To produce an educational
standards of care for adults with
resource for health care providers
SCD, endorsed by the Department
and service users, as well as a
of Health and UK Forum on
benchmark of acceptable standards
Haemoglobin Disorders by July
of care
2008

Standards of Care in SCD: Working Towards Better Care May 2008

 Who is it aimed at?
SCD Adult Standards of Care

SCD Community Health Care Community

Consultant Haematologists/
Service Users
Specialist Nurses

Carers GPs/ Practice Nurses

Psychologists/ Haemoglobinopathies
Social Services
Counsellors

A&E Consultants/ Nurses/

Expert Patients
Paramedics

Commissioners/ NHS Payors

Standards of Care in SCD: Working Towards Better Care May 2008

 Target audiences
• Service users
• Consultant haemotologists & specialist nurses
• Psychologists & haemoglobinopathy counsellors
• Social workers
• GPs & practice nurses
• A&E consultants/ nurses
• Paramedics
• Payers/ PCT commissioning leads

Standards of Care in SCD: Working Towards Better Care May 2008

 Terms of reference
• To act as a body of experts for development of standards of care for adults
with sickle cell disease
• To ensure project funding is subject to robust scrutiny, wholly
transparent and open competition
• To ensure industry partnerships adhere to codes of conduct prescribed by
the Health Coalition Initiative and the Association of the British
Pharmaceutical Industry
• To formulate standards of care with demonstrable user representation
and consultation so that the views of adults with sickle cell disorders
are reflected
• To take account of key developments that are relevant to the operational
context of the standards which include appropriate legislation and other
bodies of work
• To ensure that the role of the Sickle Cell Society is clearly described and
acknowledged in the finished document
• To ensure that the process of resolving differences of opinion is clearly
communicated to the whole of the group and agreed

Standards of Care in SCD: Working Towards Better Care May 2008

 Methodology
• Working Group formed and standards content
agreed
• Literature review performed
• Writing groups drafted chapter sections
independently
• Experts drafted in to advise on specialist areas
(e.g. stroke, commissioning, etc.)
• Editorial Team formed from key authors to refine
and edit original drafts
Standards of Care in SCD: Working Towards Better Care May 2008
 Standards contents
• Forward • Managing Chronic
• Executive Summary Complications
• Methodology • Pregnancy,
• Contraception & Fertility
Summary of Standards
• Issues in Blood
• SCD: Overview
Transfusion
• Organization of Care &
• Surgery & Specific
Commissioning SCD
Therapies
Services
• Appendices
• Managing Acute
Complications • Glossary

Standards of Care in SCD: Working Towards Better Care May 2008

 Working group structure

Haematology
specialists

Service Haematology
users counselling

Working
group

Social work Primary care

Psychology

Standards of Care in SCD: Working Towards Better Care May 2008

 Working group members
• Dr Kofi Anie • Sister Matty Asante Owusu
• Professor Elizabeth Anionwu • Dr Shivan Pancham
• Dr Karl Atkin • Dr Norman Parker
• Dr Wale Atoyebi • Professor John Porter
• Dr Moji Awogbade • Ms Elizabeth Quarcoopome
• Dr Lorna Bennett (Deputy Chair) • Dr David Rees
• Dr Claire Chapman • Dr Kate Ryan
• Dr Phil Darbyshire • Dr Farrukh Shah
• Mrs Verna Davis • Dr Joan St John
• Dr Bernard Davis • Ms Stephanie Sulaiman
• Dr Moira Dick • Professor Swee Lay Thein
• Dr Joanna Howard • Ms Iyamide Thomas
• Dr Mark Layton • Dr Christine Wright
• Mr Anthony Mason • Dr Josh Wright
• Dr Asa'ah Nkohkwo • Dr Anne Yardumian
• Ms Ogo Okoye
•
 Editorial Team Member
Dr Adebayo Olujohungbe (Chair)

Standards of Care in SCD: Working Towards Better Care May 2008

 Editorial team members

• Dr Lorna Bennett • Dr Ade Olujohungbe

• Dr Claire Chapman • Dr Shivan Pancham
• Dr Bernard Davis • Dr Kate Ryan
• Dr Joanna Howard • Dr Anne Yardumian
• Dr Asa’ah Nkohkwo

Standards of Care in SCD: Working Towards Better Care May 2008

 Independent review panel (IRP)*

– Ms Abi Adeturinmo
– Prof Sally Davies
– Prof Kwaku Ohene-Frempong
– Dr Elliott Vichinsky
– Mr Michael Parker
– Dr Denise O’Shaughnessy

Standards of Care in SCD: Working Towards Better Care May 2008

 Processes & timeline

March 2008 Review draft completed

April 2008 Consultation process commenced
April 2008 Working Group meeting held
May/June 2008 Consultation processes opened to key stakeholders,
such as the DH and IRP*
June 2008 Final revisions made to adult standards
July 2008 Adult standards UK launch

Standards of Care in SCD: Working Towards Better Care May 2008

 Process
Convene Editorial Team
Working Literature
review/ editing
Group: searches
process
Development Full Manuscript
of Standards Writing groups
structure, Series of
develop draft
content and Editorial Team
copy
format Meetings

We are here ?
?
Working Production ?
Group and
and Implementation Audit
independent
review launch ?
?
?

Standards of Care in SCD: Working Towards Better Care May 2008

 Model of care

• “Hub and spoke” approach

• Best served by specialised commissioning
• Sickle cell centre of excellence
• Local hospital unit
• Document not prescriptive of numbers
• Discussions with SCT about funding and designation.

Standards of Care in SCD: Working Towards Better Care May 2008

 Next steps
• Review and endorsement
• Pre-launch planning
• Production
• Launch

Standards of Care in SCD: Working Towards Better Care May 2008

 Launch
• July 9 2008, London
• Parliamentary reception
• Round table discussion on how to
implement.

Standards of Care in SCD: Working Towards Better Care May 2008

 Critical success factors
• Successful launch/ high awareness
• Implementation
• Audit and measurable improvement

Standards of Care in SCD: Working Towards Better Care May 2008

 A poisoned Chalice? 

Standards of Care in SCD: Working Towards Better Care May 2008

 Questions?

Standards of Care in SCD: Working Towards Better Care May 2008