SCOTTISH PAEDIATRIC & ADULT HAEMOGLOBINOPATHY NETWORK

ANNUAL REPORT 2014/2015

National Specialist and Screening Services Directorate Procurement, Commissioning and Facilities NHS – National Services Scotland 6th floor, Meridian Court 5 Cadogan Street Glasgow G2 6QE www.spah.scot.nhs.uk Dr Beverley Robertson – Lead Clinician Laura Craig – Network Co-ordinator

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Contents

1. Executive Summary Page 1

2. Introduction Page 2

3. Aim/Purpose Page 3

4. Network progress Page 4

5. Plans for the year ahead Page 8

6. Network Governance Page 10

Appendix 1 Network Membership Page 11

Appendix 2 Finance Page 12

Workplan Page 13

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EXECUTIVE SUMMARY

The Scottish Paediatric & Adult Haemoglobinopathy Network (SPAH) was designated as a National Managed Clinical Network (NMCN) on 1st April, 2011. It was hosted by NHS Greater Glasgow and Clyde (Women and Children’s Directorate) until 31st March 2014. On 1st April, 2014 the Network was integrated into the National Specialist Screening Directorate of NHS National Services Scotland. The network’s clinical lead is Dr Beverley Robertson, Aberdeen Royal Infirmary. Laura Craig continues as the MCN Co-ordinator

The Network aims are:

• To promote service delivery at the most local point of contact supported by agreed clinical standards and service model

• To facilitate effective service interfaces and support good practice in multidisciplinary and interagency working both in establishment of an NMCN and the service delivery associated with it

• To facilitate the various strands of user involvement in service delivery and future planning of services (including detailed public patient involvement framework) as indicated in HDL MCN guidelines and other associated MCN best practice documentation

• To provide an effective governance framework for all strands of clinical practice including indicators of improved clinical effectiveness and research and development practices achieved through establishment of the network

Overview of Progress

• Successful in securing funding for a national Adult Ferriscan Service.

• Educational initiatives remain a pivotal part of the Network’s activities. The Network hosted a Nurse Education Event in February 2015 in IET Teacher Building, Glasgow.

• Fully embedded within the educational curriculum of the Network are the national multidisciplinary meetings (MDT’s). A number of linked clinicians from Scotland and Northern Ireland video conference into the meeting. A section of the meeting includes formal review of all cases referred from Newborn Screening Programme. The outcome of the individual cases now form part of the patient’s case notes.

• The SPAH website www.spah.scot.nhs.uk is central to providing links and information on all aspects of the Network.

• The Network is improving on the amount of data input into the Clinical

Audit System (CAS), however, there will always be challenges in terms of

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time for clinicians to input in real time. To this end, we have developed paper proformas for completion as an alternative to real time. The database continues to provide the Network with an invaluable patient registry, and useful audits have been provided against designated national standards and key performance indicators.

• There has been a significant increase in the development of Clinical

protocols, guidelines and information leaflets, for both professional and patient groups.

• On 3rd May, 2014, the Network hosted the third Patient/Family day in Our Dynamic Earth, Edinburgh. This was once again supported by UK National Charities for both Sickle Cell and Thalassaemia.

• The patient support group, “Scottish Society for Sickle Cell and Thalassaemia”, is now in its 3rd year of existence. The core group is based in the West of Scotland with the formation of two new branches being established in the East and North.

• The Scottish Paediatric & Adult Haemoglobinopathy Network has developed a work plan for 2015-16 which will continue to build on the achievements of this year in order to improve the quality of care of our patients.

INTRODUCTION

The Scottish Paediatric & Adult Haemoglobinopathy Network (SPAH) was initially funded by National Services Division (NSD) for a one year period from 1st April, 2011 to 31st March, 2012, which was subsequently extended for the year 2012/2013. A successive business case was submitted for continued funding to National Specialist Services Committee (NSSC), which provided funding until March 2014 to facilitate the ongoing work of the network. In October 2013, a further business case was submitted to NSSC for future funding of the Network, which was successful on this occasion for 3 years, to March 2017. The Network has a remit to ensure that equitable, high quality care is delivered promptly to patients with haemoglobinopathies at all points in their journey, by a multidisciplinary health care team with knowledge of the condition. The Network has a key role in ensuring appropriate links to the Linked National Antenatal and Newborn Screening Programme for Haemoglobinopathies which was implemented in October 2010. The nationally funded Transcranial Doppler and Ferriscan services for children with Sickle Cell and Thalassaemia are also fully integrated with the Network. This annual report sets out the Network’s progress from 1st April, 2014 to 31st March, 2015 and plans for the coming year.

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Haemoglobinopathy The term Haemoglobinopathy covers a range of inherited blood conditions in which haemoglobin (the oxygen carrying protein in red blood cells) is either qualitatively or quantitatively abnormal. The two main disease groups are Sickle Cell Disease (SCD) and Thalassaemia. These are life long genetic disorders which often result in complex medical problems.

• Sickle Cell Disease (Hb-SS, HBSC, HBS/Beta thalassaemia and other sickling disorders)

Sickle cell disease is a lifelong inherited blood disorder primarily arising in people of Afro-Caribbean origin and less frequently in those from India, Pakistan and the Middle East. It is characterised by a chronic anaemia, an increased susceptibility to infection and a propensity to acute vaso-occlusive crisis which can be painful and can cause widespread organ damage. Acute episodes can be life threatening and require prompt expert attention. Recurrent episodes result in chronic ill health affecting almost every organ. The morbidity associated with this organ damage can be lessened with appropriate clinical assessment and expert management. • Beta Thalassaemia Major Beta thalassaemia affects people of South Asian and Southern Mediterranean origin and results in a lifelong requirement for regular red cell transfusion every few weeks. The major health issues associated with thalassaemia relate to transfusional iron overload and organ damage.

AIM/PURPOSE

Key network (designation) objectives

• Encourage and facilitate the involvement of families, children and patient support groups in the network and engage them in service improvement

• Establish systems and processes to ensure that stakeholders are identified and are engaged effectively in the ongoing development of the Network

• Develop and maintain continuous quality improvement systems and processes (CQI) including data collection, audit and research to provide a basis for further service improvement

• Develop a comprehensive range of protocols and care pathways to support the delivery of safe, effective specialist healthcare as locally as possible

• Develop and deliver an education and training strategy for both specialist and non specialist staff and children and families

• Develop and deliver a communication strategy to support effective internal and external communication including the development and sharing of protocols and information leaflets and the development of a web site

• Facilitate links between clinical services and antenatal and newborn screening programmes, contributing to ongoing work to establish and develop efficient and effective screening services.

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• Facilitate links with other specialties

Key Network Aims:

• To promote service delivery at the most local point of contact supported by agreed clinical standards and service model

• To facilitate effective service interfaces and support good practice in multidisciplinary and interagency working both in establishment of an NMCN and the service delivery associated with it

• To facilitate the various strands of user involvement in service delivery and future planning of services (including detailed public patient involvement framework) as indicated in HDL MCN guidelines and other associated MCN best practice documentation

• To provide an effective governance framework for all strands of clinical practice including indicators of improved clinical effectiveness and research and development practices achieved through establishment of the network

NETWORK PROGRESS

Progress against the full work plan is shown on page 13 Summary of Progress to date

PATIENT CENTRED • Scottish Society for Sickle Cell and Thalassaemia support group continues to

grow successfully in Scotland, with the Network providing administrative support to the group with their meetings.

• Information leaflets on “Priapism” for both paediatric and adult Sickle Cell patients have been developed and shared nationally.

• Collection of patient demographic information is being regularly collected on the Clinical Audit System (CAS). The graphs below illustrate numbers of patients and the associated Health Boards for our Sickle Cell and Thalassaemia patients.

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SAFE

• The Network delivered a successful education event to Nursing staff on 27th February, 2015 in IET Teacher Building, Glasgow. The programme was supported by Nurse Specialist’s from London and Liverpool.

• National Multidisciplinary team meetings (MDT) have been ongoing over this reporting period with subsequent meetings quarterly, all of which were available via video conference link.

EFFECTIVE

The key performance indicators (KPI’s), listed below, are being measured and reported against, either through the Clinical Audit System or a paper audit.

• % of screen positive babies seen by a paediatric haematologist or paediatrician within 8weeks of referral from Newborn Screening Laboratory

• % of screen positive babies in whom results of confirmatory testing are returned to the Newborn Screening Laboratory

• % of infants with Sickle Cell disease offered and prescribed penicillin V (or alternative) by 3months of age

• % of children receiving pneumovax by 2 years of age (24-27months) and 5 early thereafter.

• % of children aged 2-16 years offered an annual TCD scan • % of patients on regular transfusion undergoing appropriate monitoring of

iron overload (regular ferritins, MRI as per guidelines) • % of adults with Sickle Cell disease offered pneumovax, HIB and Meningovax

vaccinations

Audits carried out in this reporting period were: o The audit of Newborn Screening confirmed:

� 100% of referred cases were seen by a Paediatric Haematologist by 8 weeks of age

� 100% have had outcome data returned to the Laboratory o Penicillin V offered and prescribed by 3 months of age in infants with

Sickle Cell disease � 71.4% of infants have received Penicillin V by the stated age. This is only applicable for 7 of the referrals; the other 4 have been excluded. For two babies (one from Grampian and one from Lothian), it is known that penicillin has been started but the date started has not been provided and the information has not been completed in CAS. The follow up sheet sent from the laboratory has been altered to make it clearer that this information is required.

o Vaccination with Pneumovax at 24-27months of age in children with Sickle Cell disease is nearing completion.

o Antenatal Screening – snapshot of a month’s data between 01.05.14 – 31.05.14.

� Showed good compliance with screening programme KPIs on uptake and lab turnaround times and FOQ completion across all Health Boards that submitted audit returns. Work still needs to be done on timeliness of screening(by 10 weeks) in all but 2

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health boards. This audit was presented to the Pregnancy screening steering group in April 2015.

o Management of painful crises in children with Sickle Cell disease is nearing completion

Sarah Smith, Principal Healthcare Scientist from the Newborn Screening Laboratory in Glasgow, kindly provided a brief snapshot of haemoglobinopathy cases reported from April 2014 to March 2015.

• 56,746 babies were screened

• 220 carriers were reported in 14 Health Boards across Scotland • 11 cases of significant haemoglobinopathy were reported

Beta Thalassaemia Major 2

Sickle Cell Disease 4

Homozygous Hb E 1

Hb S/C Disorder 2

Hb S/Beta Thalassaemia 1

Unkown (F + unknown Hb) 1

Haemoglobinopathy referrals 2014/15

2

4

1

2

1

1

Beta Thalassaemia Major

Sickle Cell Disease

Homozygous Hb E

Hb S/C Disorder

Hb S/Beta thalassaemia

Unknown (F + unknown Hb))

Greater Glasgow & Clyde 4

Tayside 2

Lothian 2

Grampian 2

Lanarkshire 1

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Haemoglobinopathy referral 2014/15 by Health Board

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2

2

2

1

GGC

Tayside

Lothian

Grampian

Lanarkshire

Paediatric Clinical Standards • Hydroxycarbamide guideline

• Exchange Transfusion guideline • Management of painful crisis in Sickle Cell disease guideline • Priapism guideline

All have been shared with colleagues nationally and available from the website

Adult Clinical Standards

• All guidelines available on our website have been reviewed and updated where necessary

EFFICIENT

• Basic demographics continue to be entered and clinical data input is ongoing to establish an accurate patient registry and facilitate audit against KPIs and National Standards.

EQUITABLE

• The Network aims to ensure quality of care is provided regardless of geographic location

• All information leaflets are available upon request in different languages • A funding application was submitted to National Services Division (NSD) for a

national adult Ferriscan Service as an extension to the existing paediatric service. This has been successful and a referral pathway is in development.

• SPAH website continues to be updated regularly, providing links, information and updates on all UK events for both patients and professionals

TIMELY

• A process is in place to ensure that all documents prepared by the Network are reviewed in a timely manner

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PLANS FOR THE YEAR AHEAD

Patient Centred Build on the development of information leaflets for patients and families with a haemoglobinopathy. Encourage more patient and family involvement within the Network to ensure their needs are being represented in decision making. Supporting and engaging with this group of patients is still a challenge, due to language and cultural barriers. Exploring through the Support Group their requirements and suggestions for the next Patient/Family Event. Workplan Objectives for 2015-16

• Finalise information leaflets currently in development • Additional various information leaflets have been identified which will be

developed within the sub groups

• Develop a Care/Alert card for patients • Organise a Patient/Family Event in 2015 • Continue to support and collaborate with the Support Group

Safe As a Network, we are committed to delivering education to groups and individuals involved in all aspects of the diagnosis and management of haemoglobinopathies.

Workplan Objectives for 2015-16

• Plan an Education Day for 2016 • Agree a date for a Clinical Service Peer Review from colleagues in England • Continue to roll out MDT meetings to facilitate sharing of clinical experience

and education

Effective Build on the development of Scotland Wide Network Protocols to ensure consistent high standards of clinical care regardless of geographical location. Workplan Objectives for 2015-16 • To monitor uptake and outcomes of existing specialist interventions e.g.

Transcranial Doppler Scanning for stroke prevention (National Service delivered at RHSC Glasgow) and National Ferriscan service.

• Finalise both paediatric and adult guidelines as outlined in our Work plan • Identify protocols and guidelines for development based on National

Standards for both children and adults.

• Finalise a Service Map

Efficient Continue to input more demonstrable data for audit against national Key Performance Indicators (KPI), and audit Newborn Screening outcomes.

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Additional KPI’s will be developed to measure and audit against more adult focussed outcomes. Workplan Objectives for 2015-16

• Continue to collect clinical data using CAS • To report on performance against designated KPIs and National Standards • To develop additional KPI’s • To monitor patient demographics and the outcomes of newborn screening

against national standards

Equitable Effectively collaborate with clinicians, patients, families and all those involved in the patient’s care regardless of their geographical location

Workplan Objectives for 2015-16

• To continue to develop the Network’s website www.spah.scot.nhs.uk to ensure that patients, families and professionals are provided with up to date information and links

• Ensure all materials provided by the Network are available in different formats, i.e. languages as appropriate

• Develop a “Transition Passport” and/or Transition Pathway

• Monitor and audit outcomes from the Adult Ferriscan Service

• Re-address the need to provide a one stop clinic in Grampian, offering paediatric patients a clinic appointment/annual review/TCD and Ferriscan.

• Develop links with Scottish Ambulance Service to facilitate a clearer understanding of their process

Timely

Ensure that waiting times and potentially harmful delays are reduced

Workplan Objectives for 2015-16

• Continue to review all guidelines, information materials developed by the Network to ensure that all review dates are adhered to

NETWORK GOVERNANCE

During the period of this report, the Lead Clinician was Dr Beverley Robertson, Consultant Haematologist, Aberdeen Royal Infirmary, and the Network Co-ordinator was Laura Craig, NHS National Services Scotland, Glasgow.

The network has an overarching Steering Group which includes representation from different professions involved in the network, including nursing, genetics and laboratory staff. The purpose of the steering group is to direct and support the development of the network and the services it encompasses. It has the

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remit to approve work streams which will deliver on the networks’ designation objectives. The Steering Group membership is included as Appendix 1

There are currently 4 working groups which are leading on delivering the network objectives:

• Nursing Group • Protocols/Guidelines Group (Adult) • Protocols/Guidelines Group (Paediatric) • IT/Audit

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APPENDIX 1 SPAH – STEERING GROUP MEMBERSHIP Elizabeth Chalmers Consultant Paediatric Haematologist

Laura Craig Network Co-ordinator

Beverley Robertson Consultant Haematologist

Louisa McIlwaine Consultant Haematologist

Angela Iley Genetic Counsellor

Ruth Allen Consultant Paediatric Radiologist

Hazel Douglas Haemoglobinopathy Screening Midwife

Sarah Smith Principal Healthcare Scientist

Ruth Bissell Haematology Nurse Specialist

Vicki Brace Consultant Obstetrician

Esther Abiola Idowu Parent representative

Iain Fergus Haemoglobinopathy Manager

Helen Mactier Consultant Neonatologist

Trina Stewart Patient representative

Nicole Priddee Consultant Haematologist

Lyn Hutchison Programme Manager, NSD

Christine Membi Parent representative

Louise Forrest Haematology/Haemophilia Clinical Nurse Specialist

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APPENDIX 2

NETWORK SPEND

Description Amount

Network Meetings £1479.00

Family Event £1703.00

Travel £1148.00

TOTAL £4330.00

May 2015

SCOTTISH PAEDIATRIC & ADULT HAEMOGLOBINOPATHY NETWORK (SPAH)

MANAGED CLINICAL NETWORK WORK PLAN 2015-16

Workplan 2015-2016

Network Aims

• To provide links to the newborn screening programme to ensure sensitive and timely confirmation of diagnosis and early access to clinical care package for all infants suspected of having a major haemoglobinopathy.

• To ensure prompt diagnosis and access to treatment for cases detected beyond the new born period.

• To ensure access to appropriate and prompt acute care when required for all children and adults, particularly effective acute pain management services

• To ensure access to multidisciplinary health care professional team who are knowledgeable about these conditions.

• To facilitate provision of specialist investigations as defined in national care guidelines.

• To ensure access to a support network / charitable network who will be able to offer guidance on day to day living

• To ensure access to services in a location that is suitable for their needs as close to home as possible.

RAG status key

RAG status Description

RED (R) Little/no progress been made to date to achieving network objective/standard

AMBER (A) Significant progress been made to date to achieving network objective/standard, however further work is required to fully achieve the network objective

GREEN (G) The network has been successful in achieving the network objective/standard

May 2015

Objective Planned start/ end dates

Responsible Description of progress towards meeting objective

Outcome / evidence RAG status

1.0 Patient Centred: Providing Care that is responsive to individual preferences, needs and values and assuring that patient values guide all clinical decisions.

Encourage and facilitate the involvement of patients and their families, and to engage them in service improvement. 1.1 Information Leaflets Develop a range of comprehensive information materials

2014/ongoing Late 2015 Apr 2015/ongoing Sep 2014/June 2015 Feb 2014/June 2014 Apr 2014/Nov 2014

Nurses Group Nurses Group Nurses Group Nurses Group Protocol/Guideline Group (adult) Protocol/Guideline Group (paediatric)

Developing information leaflets on:

• Travelling Abroad – two leaflets; one for adult, one for parent/carer

• Antibiotics – signs and symptoms

Proposed information leaflets for the future:

• Chest syndrome

• Eye checks

• Vaccinations Discussion to take place within group on possible development of an information leaflet on Physiotherapy/Exercise for patients with Sickle Cell Disease

• Thalassaemia Major for Parents/Carers

• Priapism in adults with Sickle Cell disease

• Priapism in paediatric patients

Draft leaflets being shared with the group for comments until sign off Development will commence once leaflets above are complete. No outcome until discussion has taken place Once finalised will be available for download from website Completed and available from the website Leaflet available for download from

A A G G

May 2015

Nov 2013/Dec 2014 Aug 2014/June 2015

Protocol/Guideline Group (paediatric) Nurses Group

with Sickle Cell disease

• Hydroxycarbamide in Sickle Cell Disease for “parents” and one for the “young person”

• Pain and Pyrexia Flowcharts for Sickle Cell Management at Home

website Finalised and available for download from website Positive trial with families from RHSC, Glasgow. Final adaptations to be carried out. Will shortly be available electronically

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1.2 Haemoglobinopathy Care/Alert Card

2014/ June 2015

Nurses Group/ Protocol/Guideline Group (adult)

Funding by Scottish Government for Care Cards has ceased. Newborn Screening confirmed they would not take responsibility of future funding. It would be more meaningful to add space for vaccination information, as vaccinations are mainly carried out in Primary Care.

Will discuss in next Protocol meeting the most appropriate way forward

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1.3 Family Involvement Patient/Family Event

April 2015/ongoing

Steering Group Will discuss at Steering Group in April appropriate date/venue to continue with events

Once a decision is agreed, will determine the next steps

1.4 Support Group “Scottish Society for Sickle Cell & Thalassaemia” To liaise with this group to enable support from the Network. Administrative support continually available

Ongoing Network Co-ordinator Group should be recommencing in April 2015.

Feedback and provision of information will be a two way process between the Support Group and Network.

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2.0 Safe: Avoiding injuries to patients from care that is intended to help them Education Identify training needs and facilitate the design, development and delivery of education and training across primary, secondary and tertiary care

May 2015

Organise and host an Annual Education Meeting

Oct 2014/Feb 2015

Education sub group Held a successful and geographically well attended Education Day for Nursing Staff on 27

th February in the Teacher

Building, Glasgow.

Evaluation feedback available from the NNMS office upon request

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2.1 Organise multidisciplinary meetings/complex case discussions with access to teleconferencing.

Ongoing

Steering Group

Proposed dates for all meetings in 2015 have been circulated and will be confirmed shortly. Individual case outcome/decision being signed off by Lead Clinician to form part of the patient case notes. Colleagues from Northern Ireland have begun to link into our meetings

Outcome/ decision will be available from the NNMS office

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2.2. Information on UK meetings

Ongoing Network Co-ordinator Links and/or a calendar is available on our website with reference to educational events including UK meetings

All information including venues, programmes, booking forms are available as far as possible on the website and are updated regularly.

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2.3 MSc Training

Ongoing

Dr Chalmers

Dr Chalmers accepted the opportunity to deliver training on haemoglobinopathies to post exam paediatric trainees as part of the MSc in Child Health

Provision for education in secondary care

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2.4 Provide the opportunity and forum to develop knowledge skills and competencies

Ongoing

Nurses Group/Co-ordinator

Co-ordinator will add her contact details to distribution lists of established programmes of Annual Education/Workshop events for nurses, provided by various Health Boards around Scotland. Dates/venues will be sent to this group and added to the website. Agreed a segment of nurses meeting will be dedicated to providing education with paediatric/adult case studies. This will also provide peer to peer

Agreed these events are sufficient for ongoing training requirements and no Network event is required. Further meeting dates to be agreed

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May 2015

support and improve the individual’s confidence in delivering presentations.

2.5 Peer Review Ongoing Protocols/Guidelines sub groups (Adult and Paediatric)

Royal Hospital for Sick Children, Glasgow and Glasgow Royal Infirmary has accepted the opportunity to be reviewed by West Midlands Quality Review Service.

Dates and funding to be confirmed

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3.0 Effective: Providing services based on scientific knowledge QUALITY INDICATORS

The Network has developed care quality indicators

Ongoing

Protocols/Guidelines sub groups

Quality Indicators

• % of screen positive babies seen by a paediatric haematologist or paediatrician within 8weeks of referral from Newborn Screening Laboratory

• % of screen positive babies in whom results of confirmatory testing are returned to the Newborn Screening Laboratory

• % of infants with Sickle Cell disease offered and prescribed penicillin V (or alternative) by 3months of age

• % of children known to Specialist Services in Scotland should receive pneumovax at 2years of age. Children not known by Specialist Services should receive pneumovax within 6 months of being identified. Continued 5 yearly thereafter.

• % of children aged 2-16 years offered an annual TCD scan

• % of patients on regular transfusion undergoing appropriate monitoring of iron

Finalised Quality Indicators

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May 2015

overload (regular ferritins, MRI as per guidelines)

• % of adults with Sickle Cell disease offered pneumovax, HIB and Meningovax vaccinations

3.1 Guidelines, Protocols & Care Pathways Scope out current practice – identify gaps in services

o Standardise how investigations are performed and recommended

o Review available Guidelines o Standardise clinical protocols o Develop share care protocols as

appropriate to local service configuration.

o Develop Care Pathways

July 2014 Ongoing Aug 2014 Aug 2014

Protocols/Guidelines sub group (Adult) Protocols/Guidelines sub group (Adult) Protocols/Guidelines sub group (Adult) Protocols/Guidelines sub group (Adult)

Management of Priapism Guideline signed off Stroke and other CNS complications guideline is on hold awaiting a consensus on transfusion programmes from UK Haemoglobinopathy Forum The guidelines below have recently been reviewed. Minimal amendments carried out and signed off by the group:

• Perioperative management of patients with Sickle Cell disease

• Red cell exchange transfusion in Sickle Cell disease

• Acute chest syndrome in Sickle Cell disease

• Hydroxycarbamide in adults with Sickle Cell disease

• Management of acute painful crisis in Sickle Cell disease

Permission granted by Guy’s & St Thomas’ Hospital, London, to adopt their guideline on:

• Management of hyperhaemolysis in patients with Sickle Cell disease

Circulated around Scotland for implementation and available from our website Finalise guideline once feedback is received Available from the website Available from our website

G A G G

May 2015

Dec 2013/ongoing Aug 2014/ongoing Feb 2014/Oct 2014 July 2014 July-Sep 2014

Protocols/Guidelines sub group (Adult) Protocols/Guidelines sub group (Adult) Protocols/Guidelines sub group (Paed) Protocols/Guidelines sub group (Paed) Protocols/Guidelines sub group (Paed)

Sickle Cell & Thalassaemia Outpatient Management checklist Establishing the most appropriate use in a clinical setting, as many hospitals are paper free/ light. Perhaps laminate for display to colleagues in clinical areas Transition Passport explored as a collaborative project with Guy’s & St Thomas’ Hospital, London, with Dr Priddee leading on this. Agreed

RHSC, Glasgow trialled the two algorithms below on a small number of patients. Identified they require constant tailoring to the individual patient. Agreed after further amendments to only be used for chronically transfused patients as a checklist

• Thalassaemia Algorithm

• Sickle Cell Algorithm

Newly developed guidelines signed off for:

• Hydroxycarbamide therapy

• Priapism

• Exchange Transfusion

• Management of painful crisis in Sickle Cell disease

The guidelines below have recently been reviewed. Minimal amendments carried out and signed off by the group:

• Acute chest syndrome in Sickle Cell disease

• Abdominal Crisis & Girdle Syndrome

• Sequestration

Currently available from the website. Wider use and implementation to be agreed Identifying what is currently available and discuss at a future meeting Final sign off at meeting on 31

st

October and rolled out Circulated around Scotland for implementation and available from our website Available from the website

A A G G G

May 2015

July 2014/May 2015 Mar 2015/ongoing

Protocols/Guidelines sub group (Paed) Protocols/Guidelines sub group (Paed)

• Aplastic Crisis

Final amendments being circulated to the group prior to sign off on both guidelines and checklist

• Iron overload and Chelation therapy

• Surgery and anaesthesia

• General surgery and anaesthesia checklist

Chair of the group to identify if there are any chronic guidelines we could adapt/adopt for our own use

Once finalised will be available from the website If identified, will be ongoing work for this group until signed off

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3.2 Poster for A&E Departments Sep 2014/ongoing

Nurses Group Scoped the requirement from the group’s local A&E departments if a poster outlining the steps to take when a patient presents would be beneficial. No requirement necessary, although A&Ee keen for a brief guideline on their local intranet.

Identify if there are current guidelines available to adapt. Requirement for two guidelines; one for the adult, one for patient/carer

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3.3 Service Map Create a Service Map detailing teams and clinics in Health Boards

Dec 2013/ongoing

Network Co-ordinator

Feedback from all clinicians received and collating the information into the map

Available on the website shortly and ensure will be maintained

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3.4 Nurse Directory

Sept 2014/ongoing

Nurses Group Provide an up to date directory of nurses, together with a photograph for the website

Available from the website and will be updated with photographs as and when received

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4.0Efficient: Avoiding waste, including waste of equipment, supplies, energy and ideas.

May 2015

4.1 Data Collection o Agree fields for data collection, audit

and research to provide a basis for further service improvement and in monitoring clinical outcomes.

o Data Collection

o Audit timetable

o Core Data Set page to allow measurement of Quality Indicators in relation to the Newborn Screening Laboratory (NBSL)

o Sickle Cell Annual Review and Sickle Cell New Patient Review

Ongoing Sep 2014/ongoing Ongoing Ongoing Sep 2014/Oct 2014

Network Members IT/Audit Group Network Co-ordinator Sarah Smith/Data Manager Protocols/Guidelines sub group (Paed)

All users proficient in inputting full information into CAS. Clinical staff can be offered further training on the system as and when required. Amendments being carried out to the “Annual review” clinic proforma prior to final sign off. Continue to update the audit timetable to ensure audits are performed and/or re-audited in a timely manner. Core data set page is live. No reports as yet have been requested from NBSL Useful detailed forms to be used at clinics for annual reviews and new patients.

This will be available on request Once signed off will be circulated to Clinicians involved and available from the office. Updated as and when necessary. Available from the NNMS office Audit reports available upon request Available from the office and circulated to all Clinicians involved.

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4.2 Audits Pneumovax Audit Antenatal Screening Audit

Nov 2014/March 2015 July – Dec 2014

Network Co-ordinator/PSO Lead Clinician

Performing an audit from CAS on the KPI below:

• % of children known to Specialist Services in Scotland received pneumovax from 2years of age. Children not previously known by Specialist Services receive pneumovax within 6 months of being identified. Continued 5 yearly thereafter.

Grampian re-audited the Antenatal Screening Audit

Results will be available from the NNMS office Results are available from the office and will

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May 2015

Management of Painful Crises in Children with Sickle Cell Disease

Feb 2015/ongoing

Junior Doctor

previously carried out by GG&C in 2013. RHSC Glasgow performing a re-audit of a retrospective study previously carried out in 2013 of this hospital only

be presented at the next MDT meeting. Dr Robertson will also be presenting this at the National Pregnancy Steering Group in April. Results will be available shortly from the NNMS office

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5.0 Equitable: Providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location or economic status

5.1 An equality and diversity impact assessment is undertaken every 3 year. This results in changes to delivery to NHS boards

Ongoing

Network office

Ensure all materials are adapted to reflect the equality and diversity issues of this network

Information and education provided in different languages as appropriate

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5.2 Stakeholders Communication Plan o Develop and deliver a communication

strategy to support effective internal and external communication including development and sharing of protocols, information leaflets and the website.

o Establish systems and processes to

ensure that stakeholders are identified and are engaged effectively in the establishment and ongoing development of the network.

o Review of website

Ongoing Ongoing Ongoing

Steering Group Network Co-ordinator Network Co-ordinator

Website and MKN continually updated to inform of all work published and publicised by the Network www.spah.scot.nhs.uk Annual Report due to be written and submitted to NSD by 31

st May.

Awaiting an agreed approach for all Network websites from NSD

Website and MKN for all information Distributed widely to all Stakeholders. Report also available on the website Continue to maintain the current website until a decision has been agreed.

G G G

5.3 Adult Ferriscan Service

Dec 2013/Ongoing

Protocols/Guideline Group (Adult)

NSD has agreed to fund an Adult Ferriscan Service. The referral pathway is currently being established. Minor amendments being carried out to the referral form.

Centres will shortly begin the referral process. Copies of referrals to be retained by NNMS office for future auditing

A

May 2015

purposes

5.4 Transcranial Doppler Service Ongoing Steering Group Patient uptake from all Health Boards for TCD appointments is very positive.

Continuation of audit and reports to ensure uptake is being maintained

G

6.0Timely: Reduce waits and sometimes harmful delays for both those who receive care and those who give care

6.1 A review process is in place for change management : literature, websites, protocols etc

Ongoing Network Office Change log to ensure that all change is monitored and review dates are adhered to.

Dates and/or issue numbers are placed on all documents produced.

G