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North of Scotland Paediatric Respiratory Network

Annual Report 2014 - 2015

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Contents

Contents page

1 Executive Summary ……………………………………………….. 3

2 Purpose of the Network …………………………………………... 4

3 Network Governance …………………………………………....... 5

4 Network Activities ………………………………………………… 6

5 Network Education ………………………………………………... 9

6 Research & Audit ………………………………………………….. 11

Appendix

Appendix 1) NOSPRN Logic Model …………………………………. 12

Appendix 2) NOSPRN Staffing 2014-5 ………………………………. 13

Appendix 3) NOSPRN Workplan ……….……………………………. 15

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1) Executive Summary: Staffing critical

Welcome to the fourth annual network

report from the North of Scotland

Paediatric Respiratory Network

(NoSPRN). After a productive 2013,

staffing problems significantly hampered

the delivery of paediatric respiratory

services across the network.

The North of Scotland Paediatric Respiratory Network (NOSPRN) is a NOSPG Managed Clinical Network. We deliver specialist inpatient and outpatient care including the diagnostic testing and monitoring of respiratory patients across the NHS boards in the North of Scotland.

There were numerous successes to highlight such as the CF Away Day held in Aberdeen, the revamped Complex Respiratory cases meeting, and the useful collaborations on network documents. Specialist visiting clinics continued in Portree (CF only), Raigmore (CF and Respiratory), Orkney (Respiratory), Shetland (Respiratory) with Respiratory clinics continuing in Dundee, Aberdeen, Elgin, and Perth.

The staffing document (Appendix 2) captures the difficult state of the network at the start of 2015. Most of our teams are critically dependent on single individuals in the roles. Recruitment for cover for sick leave and maternity leave is difficult, or not funded in some instances, leading to service gaps and inefficiencies which impact on the health of patients. Additionally, this has made data collection for the annual report problematic this year. Staffing issues look set to dominate proceedings in 2015. Our network has numerous examples of posts augmented by NDP money being down-banded when the post holder leaves, which can help attract less experienced applicants. Some AHP departments have been asked to make significant savings. Down banding has affected the CF nurse post in Aberdeen, the CF dietitian post in Dundee, and the Complex Respiratory Nurse post in Aberdeen. We have no network examples of a post being up banded to its former position. Significant challenges lie ahead for the Aberdeen, Dundee and Inverness teams to deliver high quality frontline services for CF and respiratory patients.

Dr Jonathan McCormick

Clinical Lead for Paediatric Respiratory

for the North of Scotland

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2) Purpose of the network

The NoSPRN is a regional MCN managerially accountable to the NoS Regional

Planning Group (NoSPG) covering a quarter of the Scottish population based in

half the land mass of Scotland and includes 50% of Scotland’s Children’s

Hospitals.

CF is recognised as a national priority for investment and Complex Respiratory

was highlighted as suitable for a MCN in a series of Scottish Government

documents published during 2008-9.

Our goal is to sustain services for children with respiratory conditions as locally

as possible, support remote and rural services, and work collaboratively across the

region.

The network endeavours to promote greater communication, professional support,

training opportunities, and cross boundary working between professionals.

The NOSPRN aims to improve access to specialist respiratory advice and

management through frontline specialist respiratory nurses and AHPs, in addition

to more traditional consultant led clinics.

To grow the NOSPRN clinical footprint by providing more clinics in more

locations, shortening the potential time to a definitive diagnosis.

To advocate for improved availability and access of diagnostic services including

physiological measurement, ciliary diagnostics, flexible bronchoscopy and sleep

monitoring and establishing the sharing of best practice.

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3) Network Governance The advantages of the NOSPRN include enhanced training opportunities for staff, more

efficient use of resources, an increased capacity for service delivery and the management of

complex patients resulting in improved services for children with respiratory conditions.

One of the recognised factors in our success has been a strategic design in network

functioning of non-hierarchical partnerships between staff in similar roles which has helped

shape the network’s distinct identity, rather than a centralist model of specialists providing

an outreach service. The integration of teams through shared working in clinics, or through

collaborative educational initiatives via videoconference such as the CF annual review

meetings or network respiratory teaching has helped to negate barriers and promote

professional support amongst all grades of staff who might previously have worked in

isolation. Monitoring network activity has been implemented through the collection of

quarterly activity reporting that forms the measurement of progress reported in the annual

report although this process has not been completed for 2014 due to the absence of key

personnel.

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4) Network Activities Success The network has undertaken a number of projects this year. The network ran a CF

Away Day in June 2014 in Aberdeen with a variety of educational topics and discussions

presented and the day was well attended by the MDTs from Inverness, Aberdeen and

Dundee. Dr. Steve Turner and Dr. Rebecca Goldman gathered data on asthmatic children

managed at the BTS step 5 in Dundee and Aberdeen to review their progress and explore

their route to this treatment and whether they stayed at this level. A respiratory

investigations form for respiratory inpatients in RACH was developed by Dr. Mustafa

Osman and introduced to improve communication and coordinate investigations. Carolyn

Duncan and Dr. Jonathan McCormick reviewed and updated the Terms of Reference and

the Risk Register for the network.

Members of NOSPRN took part in a number of research projects, which included

physiotherapy (SCOOP project) and preparation for a new Scottish CF trial. Prof

Devereux’s paper on MMP-9 was accepted and published in the Journal of Cystic Fibrosis.

Dr. Mehta presented a European research proposal to the group and one of the CF patients

appeared on Channel 4 news. Referral proformas were distributed for asthma patients, the

purpose and case mix of the RACH Complex Respiratory clinic was discussed, a network

bronchiolitis guideline was introduced, the CF Infection Control document was shared, and

a parent information leaflet on flexible bronchoscopy for children was written, published

and introduced to all three hospitals. The Complex Respiratory Cases meeting was revamped

and has proven to be one of the most useful discussion sessions between the professionals,

with some highly challenging cases presented for discussion. The range of patient services

available in the pulmonary function labs in Aberdeen and Dundee was increased and a small

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number of patients travelled across health boards within the network to receive the

appropriate investigation. Audit work was undertaken showing the significant cut in blood

sampling required when a CF patient uses a once daily Tobramycin regimen, cases of

diaphragmatic hernia, congenital lung emphysema, the discharge of asthma patients,

bronchiolitis and overnight oximetry. Dr. Stuart Nath left RACH to undertake National

Grid training in Paediatric Respiratory Medicine and Richard Leece left the network after

being successfully appointed as a Lecturer in Nursing at RGU. Dr McCormick, as Clinical

Lead, joined the NOSPG Child Health Clinical Planning Group.

The possibility of developing a third Scottish ventilation initiation centre in Aberdeen was

explored due to the ever-increasing demand for non-invasive and long-term ventilation by an

increasingly complex mix of patients, and the differences in equipment procurement

between the centres. Staff and families in Inverness and Dundee expressed satisfaction with

their current service provision from Edinburgh and Glasgow, though Aberdeen will

continue to explore ventilation initiation options within RACH for certain patients. With

numbers forecast to continue rising, this issue may need to be revisited on a Scottish wide

basis.

Challenges have included staffing the frontline services for cystic fibrosis and chronic

respiratory disorders whilst we are missing so many experienced individuals. Staffing of the

theatres disrupted the running of the paediatric flexible bronchoscopy service in Aberdeen

with alternate bronchoscopy lists being cancelled, moved, or reinstated at short notice,

though this situation had improved by the end of the year. Our lay representative, Elaine

Carnegie from Asthma UK was made redundant by the charity in August 2014. Asthma UK

representatives were unable to fill that role within the network, and a new patient

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representative was sought. We were pleased to welcome Ruaraidh Dobson from the British

Lung Foundation to provide lay representation at PRISM.

Network members invested a significant amount of time in preparing respiratory bids for the

NDP slippage monies, an invitation that was open to all specialties. Subsequently, NOS

boards exercised their powers to have their share of the money returned to the boards and

no specialty received the slippage monies to fund their bids. It is understood that NHS

Tayside received £164,733, NHS Highland received £134,131, and NHS Grampian received

£197,510 from this process. The NOSPG Executive understand that there is still a

requirement to assure the Scottish Government’s Children and Young People’s Support

Group that the money is spent on supporting children’s services.

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5) Network Education NOSPRN first mapped the teaching and training opportunities available within the network

for all members of staff in 2013. This is intended to be a resource for new and existing

members of the network. The fortnightly paediatric respiratory network teaching session is

established across the network with sessions predominantly led by the consultants. The

following training opportunities are brought to the attention for the professional

development of members of the network.

NETWORK

PRISM (Paediatric Respiratory Inter-region Service Meeting) by VC

2nd

Tuesday of the month – 11-12.30 pm

Aberdeen – OPD Meeting Room Inverness – Children’s Ward Ninewells – OPD Quiet Room Elgin – Ward 3 Day Room, Dr Gray’s

VC Respiratory Teaching 2nd

& 4th Thursday of the

month – 1pm-2 pm Aberdeen – OPD Meeting Room Inverness – Children’s Ward Ninewells – OPD Quiet Room Elgin – Ward 3 Day Room, Dr Gray’s

Complex Respiratory Cases meeting by VC

1st Wednesday of month

6 per year Feb/Apr/Jun/Aug/ Oct/Dec – 10-11 am

Aberdeen – OPD Meeting Room Inverness – Children’s Ward Ninewells – OPD Quiet Room

CF Annual Review meeting by VC

2nd

Wednesday of month 10 -11am

Aberdeen – OPD Meeting Room Inverness – Children’s Ward Ninewells – OPD Quiet Room

TAYSIDE

Nursing

PLT sessions with Primary Care (adults/paediatrics)

Organised with Tayside Respiratory MCN (yearly)

SCOTLAND

SPARCNS – Scottish Paediatric Asthma & Respiratory Clinical Nurse Specialist Group (2 per year by VC)

Twice per year

SPRING Three times per year

Children’s and Young People’s Allergy Network (CYANS) Study day

Scottish CF Group Annual Meeting May

Scottish Paediatric Society Summer June

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Meeting

CF Exchanges November

Scottish Paediatric Society St Andrew’s Day Symposium

November

UK

Northern Paediatric Respiratory Forum Twice yearly

BPRS Summer Symposium June

RCPCH Spring meeting April

BTS Summer meeting June

NPRNG – National Paediatric Respiratory Nurse Group

October

RSM Cystic Fibrosis Meeting November

BTS Winter meeting December

International

American Thoracic Society conference May

European Cystic Fibrosis conference June

International congress on paediatric pulmonology

June

ERS Paediatric Assembly September

North American Cystic Fibrosis Conference October

Specific ERS courses (including online) Throughout the year

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6) Research & Audit NOSPRN has been successful in collaborating in a number of multi-centre studies that have

led to publications. Increasingly, audit plans can be applied across the network with each

team contributing their data for the benefit of the whole network. Examples include:

MMP Part 2 – Prof Devereux’s paper “An observational study of matrix metalloproteinase

(MMP)-9 in cystic fibrosis” was published in the Journal of Cystic Fibrosis.

BIDS – The paper was accepted for publication in The Lancet

Vertex CF Trials – All three centres have identified patients for current and future trials

Step 5 asthma patients – Dr Turner coordinated a network project to investigate the

outcomes of teenagers with step 5 asthma which Dundee Trainee, Dr Bex Goldman,

contributed data from eligible Dundee patients

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North of Scotland Respiratory - Logic Model

Inputs (resources) (bold – still to be appointed) Outputs (activities) Outcomes (short , intermediate and long term)

Evidence base Needs assessment Version 2 14.9.11

Formation of Steering Group

Staff supported and engaged

Network clinics in Inverness, RACH, Ninewells and Shetland

Reduction in travel times for patients

Patients and Families’ empowered / self care etc

Families supported throughout their child’s illness

Lead Clinician 2 PAs

Consultant in Paediatric Respiratory Medicine 1 wte NHST

Specialist Nursing available in 3 main centres

Nurse led services, extended nurse roles and AHP roles

Respiratory Specialist Nurse 0.5 Band 6 NHSH

Clinical Physiologist 0.5 Band 6 NHST

Family representative involvement in Network or NoS

Child Health meetings

Medical Secretary 0.5 Band 4 NHST

CF Physician Cross-cover

Extra capacity in CF Dietetic services

Educational strategy (fortnightly VC Education Meetings for specialist staff and local generalist, I’ness teaching)

Respiratory Specialist Nurse 0.5 Band 6 Respiratory Specialist Nurse 0.6 Band 7 NHSG

Improved health and well-being

of children

CF Dietician 0.6 Band 7 NHST

Aspire to accreditation of Managed Service Network

Services co-located and

provide added value

Involvement of staff in developments

Improved clinical / other outcomes

Improved Condition Management (As close to home as possible; appropriate care to age and stage; appropriately trained staff, patient compliance)

Network services to Inverness, Shetland, Orkney

Multidisciplinary team meetings / clinics in local settings

Staff have access to high quality peer support

Improved equity of access to services

Patients have access to the best possible services as locally as possible

Reduced inequalities

Improved experience of health services by children and their families

Key Short-term outcome Intermediate outcome Long-term outcome

Improved multi-disciplinary working /care

Appropriate skill mix of professionals

Governance system – audit, standards

Monthly Service Meetings

Monthly Regional Flexible bronchoscopy service

Improved planning and integration of service / care

Meeting established standards of care

Involvement of patients and families in developments

Sustainable model of care/ service Monthly VC CF Annual Reviews

Patient contact / advice points (Nursing and AHP)

Respiratory Specialist Nurse 0.5 NHST

Physiological Technician (shared) 0.3 Band 6 NHSG

Physiotherapist 0.5 Band 7 NHSG

Consultant in Paediatric Respiratory Medicine 2 PAs NHSG

Pharmacist (shared) 0.2 Band 8a NHSG

Appendix 1) NOSPRN Logic Model

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Appendix 2) NoSPRN Staffing 1st January 2015 INVERNESS

Medical Secretary

Consultant Paediatrician

Respiratory Nurse Specialist 22.5 6 √ 0.5

CF Nurse Specialist

CF Nurse Specialist Reassigned to

another role

CF Physiotherapist Maternity leave

Senior Paediatric Physiotherapist Phased return after maternity

leave

Paediatric Dietician Post appointed

by Jan 2015

but yet to take up post

DUNDEE

Medical Secretary √ 0.5

Consultant Paediatric Respiratory

Medicine – Clinical Lead

f/t √ NoSPG Clinical

Lead

Consultant Paediatrician f/t Responsibilities in Perth

Consultant Paediatrician f/t Responsibilities in Dundee

Respiratory Nurse – Asthma 21.5 √ 0.5 Perth based

Clinical Nurse Specialist – Cystic

Fibrosis

f/t Sick leave –

only two days a week cover

provided

Respiratory Nurse – Asthma f/t Dundee based

CF Psychologist 4

Dietitian (CF) 21 7 √ 0.6 Post down

banded from band 7 to band

6. Only two days a week

cover provided

Pulmonary Function Technician f/t √ 0.5

Physiotherapist 0.6

WTE

Maternity leave

CF Data Clerk

Community Children’s Nurse

Home Care Coordinator

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ABERDEEN STATUS POST HRS Band NDP

Medical Secretary p/t

Consultant Paediatric Respiratory Medicine

f/t √ 0.2 Clinical Lead for CF National

MCN

Consultant Paediatrician f/t Clinical Lead for Elgin

Consultant & Senior Lecturer in Child Health

f/t

Clinical Nurse Specialist – Cystic

Fibrosis

f/t 6 Post down

banded from band 7 to band

6

Clinical Nurse Specialist – Complex Respiratory

f/t 6 Post down banded from

band 7 to band 6

Clinical Nurse Specialist – Community

Children’s Nurse

28 7

Cleft Lip & Palate/Complex Respiratory Nurse

37.5 6 √ 0.5 for maternity leave

– no cover provided

Physiotherapist 18.75 7 √ 0.5

Pharmacist – CF 0.1 WTE

Pulmonary Function Technician

Psychologist for CF service Service

withdrawn

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Appendix 3) Work Plan

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

Objectives Outcome Tasks Time-

scales

RAG Status

PATIENT CENTRED,

EQUITABLE, SAFE, EFFICIENT

Formalise a

Paediatric Respiratory Network

Group

Identify membership across all North of Scotland Health Boards

and ensure regional priorities for the network

Develop role and remit of group

Agree schedule of meetings (3-4 per year)

Agree upon annual work plan

Develop a performance monitoring

framework to monitor the implementation of the work plan

Collate twice yearly Exception Reporting

for Scottish Government Health Department

2011-present

J McCormick C Duncan/

EFFICIENT:

Produce a network Annual Report

Description of network

improvements and progress using data collected

Agree data to be collected – network staff

to record on an ongoing basis. Staffing

issues impacting on data collection

2012-

present

J McCormick

PATIENT

CENTRED, EQUITABLE:

Implement planned outreach out-patient

clinics across the

North

Ensure patients have access to a

local, safe sustainable, high quality service

Inverness clinics running 6 times per year

To support the Islands’ specialist

respiratory clinics where appropriate

Introduce RACH Asthma education clinics

Develop monthly VC Cystic Fibrosis annual

reviews

2011-

present

All

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EQUITABLE,

TIMELY, PATIENT CENTRED: Map,

develop and agree care pathways/

protocols/guidelines

Develop care pathways, protocols

and guidelines to ensure consistency across the network,

enhancing links to national/other regional networks

Compile care pathways and flow charts

Link with national/regional groups to

implement new network protocols, and guidelines

2011-

present

All

PATIENT

CENTRED, EQUITABLE:

Develop information

for patients and families

Enhance patient/families'

knowledge of the service

Develop patient information and written

information

2011-

present

All

EFFECTIVE: Continue to develop

education framework

Scope current training provided, training needs of network staff

and develop a planned curriculum

of Continuing Professional Development

Build on fortnightly network teaching

sessions by VC by including talks from all member of staff

Map educational opportunities –

local/regional/national

2011-present

All

EQUITABLE: Set up

VC consultations

with patients in remote locations

Increase tertiary support to

improve local access and to

reduce staff/patient/family travel time and reduce costs

Where appropriate, enable access to

network for patients as close to home as

possible or resort to VC to review network

patients where face to face communication is not possible

2011-

present

All

SAFE, EFFECTIVE, EQUITABLE: Audit

clinical care

Measure performance indicators in children’s care and review

parents’ and carers’ experiences

of service provided

Audit aspects of care and encourage

collaborative audit within the network

2011-present

All