SCOTTISH PAEDIATRIC & ADULT HAEMOGLOBINOPATHY NETWORK

ANNUAL REPORT 2011/2012

Managed Clinical Network Office 9th Floor Queen Mother’s Hospital Dalnair Street Glasgow G3 8SJ www.spah.scot.nhs.uk Dr Elizabeth Chalmers – Lead Clinician Laura Craig –Network Co-ordinator

Contents 1. Executive Summary Page 1 2. Introduction Page 2 3. Aim/Purpose/Mission Statement Page 3 4. Description of progress to date Page 4 5. Plans for the year ahead Page 7 6. Network Governance Page 9 Appendix 1 Network Membership Page 11 Appendix 2 Finance Page 12 Workplan Page 13

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1. Executive Summary The Scottish Paediatric & Adult Haemoglobinopathy Network (SPAH) was designated as a National Managed Clinical Network (NMCN) on 1st April, 2011. The NMCN was officially launched on 13th June, 2011 at the Scottish Health Service Centre, Edinburgh. The Network aims are:

• To provide links to the newborn screening programme to ensure sensitive and timely confirmation of diagnosis and early access to a 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 via appropriate care pathways

• To ensure access to acute care when required for all children and adults with haemoglobinopathies

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

• To provide educational support to all healthcare professional involved in the care of this patient group

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

• To audit service delivery against defined Key Performance Indicators (KPIs) and National Standards

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

Overview of Previous Year The SPAH Network has five working groups which were all established at the launch of the network – Data Collection/Audit, Education Group, Clinical Standards (Paediatrics & Adults) and Patient Involvement.

The Data Collection & Audit subgroup has developed a specific data set for this Network using the Clinical Audit System. Information sheets for patients have been developed and provided to patients and staff from each unit have been trained on CAS. Clinical data input is now ongoing. Using this system we have established a patient registry which can be used for service planning and are now in a position to undertake specific audit projects against designated national standards and key performance indicators.

The Education sub-group organised the initial Network Launch event which had a strong education component with a range of presentations. A learning needs analysis has been carried out with useful feedback from healthcare providers highlighting the lack of formal education structure and opportunities in some

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areas. The SPAH website now provides links and information on relevant events, and there are now pages on the Managed Knowledge Network (MKN).

Clinical Standards sub-groups exist for both adults and paediatrics and both groups have been actively involved with the development of Clinical Protocols based on National Standards for Care which have been published previously. The paediatric sub-group has strong links with the Newborn Screening programme and has developed a feedback system to gather outcome information on those cases referred from Newborn screening. Using this system, data has been collected on the first year of screening and was presented at the British Society for Haematology Annual Scientific Meeting. This group has also worked closely with the Transcranial Doppler Service and has developed supporting materials for this service including a referral pathway, request and report forms. Recognition by the group of a service gap in the management of iron overload resulted in development of a successful business case to establish a Ferriscan service which was not previously available in Scotland.

The Clinical groups have worked on a number of areas with the Patient Involvement Group and have developed several information leaflets for patients and families relating to different aspects of care. Given the ethnic diversity of this patient group these have been developed in different languages. One of the major successes of the year was a very successful patient/families day held in October at Kelvingrove Museum and Art Gallery, Glasgow. This was supported by UK National Charities for both Sickle Cell and Thalassaemia, which was the first time that they had been involved in an event in Scotland. The feedback from this event was very positive and has subsequently led to the formation of a patient/parent support group which has ongoing support from the Network. The Scottish Paediatric & Adult Haemoglobinopathy Network has developed a work plan for 2012-13 which will continue to build on the achievements of this year in order to improve the quality of care for patients with these disorders.

2. 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. Following submission of a business case, funding has now been extended for a further year to facilitate the ongoing work of the network. NHS Greater Glasgow and Clyde host the Managed Clinical Network Department. The Network has a remit to ensure that equitable, high quality care is delivered promptly to patients with haemoglobinopathies across Scotland at all points in their journey, by a multidisciplinary health care team with knowledge of the condition.

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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. This annual report sets out the Network’s progress from 1st April, 2011 to 31st March, 2012 and plans for the coming year. 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) 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, all leading to multiple hospital admissions. Such episodes can be life-threatening and sometimes fatal. This condition can have a profound impact on the health and general well-being of those affected. • 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 which in turn has significant health related consequences due to transfusional iron overload. These conditions are usually diagnosed early in life. Treatments (for example regular blood transfusions, medications) will vary according to the disease and the presence of complications. Stem cell transplantation may be applicable for some cases e.g. children with thalassaemia major who have a compatible sibling donor.

3. Aim/Purpose/Mission Statement 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 establishment and ongoing development of

the network • Agree data collection, audit and research to provide a basis for further service

improvement and in monitoring clinical outcomes

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• Develop a comprehensive range of protocols and care pathways • Develop and deliver an education and training strategy for both specialist and

non specialist staff and children and families

Scottish Paediatric & Adult Haemoglobinopathy Network Key Aims:

• To provide links to the newborn screening programme to ensure sensitive and timely confirmation of diagnosis and early access to a 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 via appropriate care pathways

• To ensure access to acute care when required for all children and adults with haemoglobinopathies

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

• To provide educational support to all healthcare professional involved in the care of this patient group

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

• To audit service delivery against defined Key Performance Indicators (KPIs) and National Standards

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

4. Description of Progress to date

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

DATA COLLECTION AND AUDIT • A range of key performance indicators based National Standards have been

agreed against which performance will be measured and reported • Using the Clinical Audit System (CAS) a specific data set has been developed

for this Network • Regional clinicians and designated nurses have undergone appropriate

training on CAS • CAS information sheets have been developed and sent to all patients/parents

in Scotland to explain the data collection system • Basic demographics have been entered and clinical data input is ongoing to

establish an accurate patient registry and facilitate audit against KPIs and National Standards.

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EDUCATION • A Learning Needs analysis has been undertaken targeting primary, secondary

and tertiary healthcare providers. • The Network Launch Event in June had a strong educational component. • A SPAH website has been developed and is now live, providing links,

information and updates on all UK events for both patients and professionals • A Managed Knowledge Network (MKN) page has been developed

CLINICAL STANDARDS

• Service Mapping has been carried out to assess current healthcare provision • Service gaps in the provision of specialist MRI scanning have been identified

and addressed via provision of a paediatric Ferriscan service at RHSC Glasgow • In collaboration with the Newborn Screening Programme problems with the

screening pathways have been identified and pathways updated • Outcome assessment forms have been developed to facilitate audit of the

Newborn Screening Programme and the results of the first year of screening were reported at the BSH Annual Scientific Meeting

• Scotland Wide Network Protocols are being developed for both children and adults with Sickle Cell Disease and Thalassaemia which will be made available on the website, MKN page and distributed throughout the country.

• Referral pathways & reporting forms have been developed for the National TCD service

PATIENT ENGAGEMENT

• Assessment of foreign language requirements has been undertaken to facilitate provision of materials in appropriate languages.

• Information leaflets developed and provided to patients/parents regarding SPAH and CAS

• Information leaflets developed and provided for TCD scanning service (inc child version)

• Patient feedback questionnaire developed for TCD scanning service • Information pack developed for the parents of babies identified with sickle cell

disease via newborn screening. • In collaboration with the Genetics Alliance an assessment of interest in a

patient support group One of the major highlights of the year was the Patient/Family Event

• This event was held on 8th October 2011 in the Kelvingrove Museum & Art Gallery, Glasgow – speakers included patients, professionals and representative from UK Charities – Sickle Society & Thalassaemia Society. This was the first time that these charities had participated in an event in Scotland. The event was well attended with 72 parents/carers, teenagers and younger children affected by Sickle Cell Disease or Thalassaemia. The young people took part in various museum led activities, whilst their families listened to presentations, including talks from keynote speakers from the Sickle Cell Society and UK Thalassaemia Society. There was also an emotive talk from a teenage patient with Sickle Cell Disease, who explained of her journey thus far. The afternoon session was split into two discussion groups – “Patient

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Support” and “Patient Information”, this provided the opportunity for families to express their opinions on these topics. Below is some of the feedback received from the day, which was extremely positive, together with a few photographs to further highlight the event.

“WHAT DID YOU LIKE BEST ABOUT TODAY’S EVENT?”

“IF YOU COULD MAKE ONE CHANGE TO IMPROVE THINGS FOR PEOPLE LIVING WITH SICKLE CELL OR THALASSAEMIA...WHAT WOULD IT BE?”

“very supportive staff” “very informative sessions” “good to meet other people” “this should happen more often” “Meeting other parents/carers whose kids suffer from SCD, and getting to know more about other various treatments that are available for the treatment of SCD”

“IF YOU COULD MAKE ONE CHANGE TO IMPROVE THINGS FOR PEOPLE LIVING WITH SICKLE CELL OR THALASSAEMIA...WHAT WOULD IT BE?”

“more socialising to share pain and grief” “there should be more publicity about the society” “Supporting them, making them know that they are not alone .This can be achieved by forming a support group.

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Subsequently families who attended this group with support from the Network have formed the “Scottish Sickle Cell and Thalassaemia Support Group”. A successful inaugural meeting was held in April and subsequent meetings are planned through the summer period.

5. Plans for the year ahead

Data Collection Prior to the Network there was no system within Scotland for data collection in relation to haemoglobinopathies. Accurate data collection is a priority in order to establish patient numbers and requirements for specialist investigations & management strategies and also to facilitate audit against designated national standards.

The Network is committed to the use of the Clinical Audit System (CAS) which was commissioned by National Services Division (NSD) for use by National Managed Clinical Networks (NMCN) to allow national network activity to be captured. CAS will also provide the Network with the means to carry out audits of clinical services against national Key Performance Indicators (KPI), and audit Newborn Screening outcomes.

Workplan Objectives for 2012-13 • To continue clinical data collection using CAS • To report on performance against designated KPIs and National Standards • To monitor patient demographics and the outcomes of newborn screening

against national standards • To assess requirements and uptake of specialist interventions for the purpose

of service planning • To monitor uptake and outcomes of existing specialist interventions e.g.

Transcranial Doppler Scanning for stroke prevention (National Service delivered at RHSC Glasgow)

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Education A wide range of healthcare professionals from primary care through to tertiary specialists are involved in the provision of care for this patient group. Increasing patient numbers due to changing population demographics and the introduction of screening mean that many healthcare professionals are now coming into contact with these disorders but are poorly equipped to deal with the often complex needs of these patients. Failure to recognise clinical problems in a timely manner is recognised as a significant risk to this patient group. This lack of expertise has been compounded by limited educational opportunities and there is a clear need to address gaps in education. This has been highlighted in results from the Learning Needs Analysis (LNA) carried out by the network

Workplan Objectives for 2012-13 • Host an annual education day. This is planned for 20th June, 2012 in

Edinburgh Training & Conference Venue. The day is aimed to support those involved with the National Screening Programme as well as those involved with the clinical care of patients. Two guest speakers have been invited – Dr Jo Howard, Consultant Haematologist, Guy’s & St Thomas’s Hospital, London and Dr Farrukh Shah, Consultant Haematologist, Whittington Hospital, London.

• Develop a teaching module on Haemoglobinopathies for the Glasgow University Paediatric MSc course

• Develop educational materials for those in primary care involved with the management of this group of patients

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

The Network has developed a community of practice for paediatric & adult haemoglobinopathy on the managed knowledge network http://www.knowledge.scot.nhs.uk/child-services/communities-of-practice/haemoglobinopathies.aspx To continue to develop the Network’s website www.spah.scot.nhs.uk to ensure that patients, their families and professionals are provided with links, information and updates on all UK events.

Clinical Standards Standards for the Clinical care of Adults and Children with both Sickle Cell Disease and Thalassaemia have been published and are endorsed by the Department of Health and both the Sickle Cell Society and the UK Thalassaemia Society. Together with the UK Standards for Screening these provide a framework on which to develop Scotland Wide Network Protocols to ensure consistent high standards of clinical care regardless of geographical location. Throughout these documents there is a strong emphasis on the need to work within networks to optimise care.

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Work plan Objectives for 2012-13 • Complete Scotland Wide Protocols based on National Standards for both

children and adults. • Conduct appropriate audit of clinical services against National Standards/KPIs • Develop referral/care pathways for those diagnosed beyond the newborn

period and complete a service map for inclusion on the Network web site • Consider adoption of Clinical Service Peer Review as per England • Review 2nd Edition of UK Screening Standards (published Oct 2011) and

support changes to practice as required • Develop morbidity and mortality MDT meetings to facilitate sharing of clinical

experience and education

Patient Engagement There are potential challenges in supporting and engaging with this group of patients due to language and cultural barriers. Despite this, engagement by the Network with patients, families and representative from UK National Charities has been very positive and has highlighted the need for support and education. Patient education is crucial in improving outcomes, particularly in sickle cell disease where effective self management can reduce hospital admissions and early recognition of potentially serious complications can improve healthcare outcomes.

Workplan Objectives for 2012-13

• Continue to develop patient materials including individual treatment plans for self/home management and management plans for use for children at school.

• Offer practical support and collaborate with the patient support group • Consider holding a second patient/familes day for the North east of Scotland • Improve provision of patient education via links to National Charities • Review regional variations in genetic counselling practices for families/carriers

identified via screening programmes • Incorporate patient questionnaires/opinions in to service audits e.g. acute

pain management 6. Network Governance

During the period of this report, the Lead Clinician was Dr Elizabeth Chalmers, Consultant Paediatric Haematologist, Royal Hospital for Sick Children, Glasgow. The Network Co-ordinator was Laura Craig, also based at the Royal Hospital for Sick Children, Glasgow.

The network has a Steering Group which includes representation from various 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 remit to approve work streams which will deliver on the networks’ designation objectives.

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The Steering Group met three times over this reporting period on, 14th March 2011, 14th September, 2011 and 7th December, 2011. In order to allow adequate time for diary planning, dates have already been circulated and agreed for this year’s meetings. The Steering Group membership is included as Appendix 1

There are currently 5 working groups which are leading on delivering the network objectives:

• Education Group • Protocols/Guidelines Group (Adult) • Protocols/Guidelines Group (Paediatric) • It/Audit • Patient Involvement Group

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APPENDIX 1 SPAH – STEERING GROUP MEMBERSHIP

Elizabeth Chalmers Consultant Paediatric Haematologist Greater Glasgow & Clyde Laura Craig Network Co-ordinator Greater Glasgow & Clyde Beverley Robertson Consultant Haematologist Grampian Louisa McIlwaine Consultant Haematologist Greater Glasgow & Clyde Angela Iley Genetic Counsellor Greater Glasgow & Clyde Ruth Allen Consultant Paediatric Radiologist Greater Glasgow & Clyde Hazel Douglas Haemoglobinopathy Screening Midwife Lothian Sarah Smith Principal Healthcare Scientist Greater Glasgow & Clyde Aileen Gibson Haemaphilia Nurse Specialist Greater Glasgow & Clyde Vicki Brace Consultant Obstetrician Greater Glasgow & Clyde Esther Abiola Idowu Parent representative Glasgow Iain Fergus Haemoglobinopathy Manager Greater Glasgow & Clyde Helen MacTier Consultant Neonatologist Greater Glasgow & Clyde Karen O’Neill Paediatric Haematology Nurse Specialist Greater Glasgow & Clyde Trina Stewart Patient representative Aberdeen

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APPENDIX 2

Network Spend

Description Amount

Network Meetings £886

Stationery £600

Travel/Training £3303

Interpreter Fees £317

Total £5106

SCOTTISH PAEDIATRIC & ADULT HAEMOGLOBINOPATHY NETWORK (SPAH)MANAGED CLINICAL NETWORK WORK PLAN 2011-12

Workplan 2011-2012

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

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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.

1.1 Voices Training In collaboration with Chest Heart & Stroke

Ongoing

Network office

Once further dates have been agreed, these will be sent to all families

All Patients/ Carers & Parents are continually invited to attend these events

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1.2 Patient/Carer Representation Develop the MCN structure to ensure that patients are represented on decision making

April 2011 Steering Group Patient representative has been identified for Steering Group. Subsequently a parent representative has also been identified

User representatives invited to attend all Steering Group meetings

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1.3 Patient Information Encourage and facilitate the involvement of patients and their families, and to engage them in service improvement. 1.3.1 Patient Support Group

Ongoing Ongoing

Network Co-ordinator Education Group Network Office/Parent representative

One event has taken place on 8th October in Glasgow, with extremely positive feedback. Next step will be to discuss with the Education Group if we should hold a similar event in a different health board region Parent rep from the Steering Group has volunteered to establish a Scottish Support Group for Sickle Cell & Thalassaemia. The Network will provide administrative support, where necessary. The first meeting is scheduled for 27th April, where decisions will be made as to consistency of meetings, and to formalise an

Feedback and evaluation available from MCN office and our website. Date to be confirmed for next meeting. Feedback and provision of information will be a two way process between the Support Group and Network.

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1.3.2 Transcranial Doppler Scanning This service was established at RHSC, Glasgow in April 2011. Patients from Lothian, Tayside & Grampian are all seen at this service 1.3.3 Getting Involved Leaflets 1.3.4 Parent Information Leaflets 1.3.5 Emergency Contact Leaflets

April/May 2011 June 2011 Feb/March 2012 Feb/March 2012

Steering Group Network Co-ordinator Network/Co-ordinator/Network Members Network/Co-ordinator/Network Members

executive group. Transcranial Doppler Scanning (TDS) leaflets designed and distributed. 50 distributed to all main paediatric centres. Agreed to evaluate Patient Satisfaction of the service which is carried out at clinic. Currently received 10 responses with positive feedback Based on the established ‘getting involved leaflets’. This has been distributed to all clinical staff within the network to encourage families to opt in. Two leaflets for “Mums and Dads” have been identified from Sickle Cell & Thalassamia programme website as extremely useful. Consent was sought and agreed from the programme for adoption in Scotland. Amendments have been carried out in order to make these suitable for Scottish use. Paediatric & adult leaflets were developed with vital contact information including direct telephone numbers for nurses, wards and secretaries of the four main centres in Scotland.

Leaflet available on request & from website Audit is an ongoing process Available on the website and from the MCN office. Also available in Arabic, Urdu and French Leaflets are available on our website for download as and when necessary. This will also consolidate continuity of information for patients between Scotland and England. To provide patients/families emergency contact details for their local hospital, in addition to hospitals outwith their local area, should this

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be required. Distribution at clinics

1.4 Information for Schools

March/May 2012

Nurse Specialist

An information sheet for Schools on “what to do in the event of a crisis”. This was highlighted as essential by parent/carers at the Family Event in October. A Nurse Specialist offered to undertake this task

To provide best practice information to Schools/School Nurses at the first sign of a crisis. Will shortly be distributed and available on our website

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1.5 Web site development Website which is suitable for use by patients as well as professionals should be developed.

Ongoing

Network/Co-ordinator/Network Members

Website developed, and will continue to be updated as necessary

www.spah.scot.nhs.uk

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2.0 Safe: Avoiding injuries to patients from care that is intended to help them 2.1 Education Identify training needs and facilitate the design, development and delivery of education and training across primary, secondary and tertiary care.

Feb 2012

Education sub group

Learning Needs Analysis questionnaire sent to GP’s, Haematologist’s, Nurses, A&E and Anaesthetics to help identify varying degrees of education requested by various clinicians. Results have been analysed.

An Education Day is organised for 20th June, 2012 in Edinburgh Training & Conference Venue. Presentations will be delivered by members of the Network, together with keynote speakers from London. Evaluation results will be available from the office shortly thereafter.

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2.2 Develop and adopt a framework for Education across the network.

Ongoing

Education sub group

Education Strategy to be developed.

Education Strategy ??

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2.3 Establish a format for multidisciplinary meetings/complex case discussions with access to teleconferencing.

Ongoing

Education sub group

Plan and organise case discussions between specialists and the Newborn Screening Laboratory, to contribute to opportunistic learning.

Once established, information on cases discussed and number of participants will be available through the Network office

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2.4 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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3.0 Effective: Providing services based on scientific knowledge QUALITY INDICATORS

3.1 The Network will develop care quality indicators

Ongoing Protocols and Guidelines sub groups

Quality Indicators (Paediatric) • % of screen positive babies

seen by a paediatric haematologist or paediatrician within 8weeks of referral from Newborn Screening Laboratory

• All children with Sickle Cell or Thalassaemia should have an annual review with a paediatric haematologist with access to appropriate specialist investigations

• % of infants with Sickle Cell disease commenced on

The collation of this data via the Clinical Audit System will help demonstrate value and impact of network activities.

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penicillin V (or alternative) by 3months of age

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

• % of eligible children offered an annual TCD scan

• % of children on regular transfusion undergoing appropriate monitoring of iron overload (regular ferritins, MRI as per guidelines)

• % of parents/patients with Sickle Cell disease are given written information on their diagnosis

• % of parents/patients given written information on the Clinical Audit System (CAS)

3.2 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

Ongoing Protocols and Guidelines sub groups (Adult & Paediatric)

The Paediatric & Adult sub groups are currently reviewing and updating protocols and guidelines based on current available guidance in England.

These will be shared with relevant clinicians, and also available on the website and MKN once approved

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3.3 Service Mapping Service mapping to be done across the network

March 2012 Network Co-ordinator

Results from a Survey Monkey questionnaire are being analysed, in order to establish a Service Directory

A map detailing current services will be available soon on website and MKN

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3.4 Transcranial Doppler Scanning Service o Referral Pathway o Standard Reporting Protocol

Ongoing Steering Group A Pathway has been developed for use across Scotland.

The Pathway is available from the website. An audit was undertaken with the 1st year’s results and this was very positive. Results have also been recorded on CAS for additional auditing purposes.

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

4.1 Data Collection o Agree systems for data collection,

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

o Develop Audit Data Set to allow measurement of Quality Indicators

o Data Collection

Ongoing Feb/Ongoing

IT sub group Network Co-ordinator/Data Manager

Demographic data has now been entered by all clinicians involved in CAS. Currently working towards more clinical data input on co-morbidities/route of referral/condition/medication This data will help demonstrate value & impact of network activities

This will be available on request Meeting with Data Manager in late February to discuss level of reports to be run from the information available from the Clinical Audit System. This is currently limited until Business Objectives is available on the system which is expected around April/May 2012. Also

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looking into developing a core data set page

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 that 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.

o All Network information available

from the web site o Establish systems and processes to

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

Ongoing Ongoing March 2012

Steering Group Network Co-ordinator Lead Clinician/Network Co-ordinator

Ensure that there is an effective communication action plan which aims to demonstrate effective communication on the patient journey. Website is now live. Mid Year Report completed and sent to NSD. Annual Report for completion by May 2012, this will be widely distributed to all Stakeholders. Information for patients/carers and health professionals are all available on the website and MKN

Colleagues will have a clearer understanding of the Network’s required communication process Website and MKN for all Network information, which is updated regularly Distribution list, and both reports will be made available

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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 is under development to ensure that all change is monitored and review dates are adhered to.

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

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