Evaluating the process andperceived impact of the Regional

Paediatric Diabetes NetworkCoordinators: North West

Supporting, Improving, Caring

August 2012

Reader PageTitle Evaluating the role and perceived impact of the

Regional PaediatricDiabetes Network Coordinator in the North West.

Author Dr. Louise Richards

Reviewed by:Dr Grace SweeneyDr Gav EyresKatherine LewisRuth GordonTrudi AkroydDr Chris Cooper

Publication Date May 2012

Target Audience North West Regional Paediatric Network members,National Paediatric Diabetes Network members,members of other regional paediatric networks,and NHS Diabetes and Kidney Care Staff.

Circulation List North West Regional Paediatric Network members,National Paediatric Diabetes Network members,members of other regional paediatric networks,and NHS Diabetes and Kidney Care Staff.

Description/Purpose A report on the findings of an evaluation ofimpact of the North West Paediatric NetworkCoordinator role.

Superseded Documents N/A

Action Required N/A

Timing N/A

Contact Details Dr. Louise RichardsLouise.Richards@diabetes.nhs.uk Research and Evaluation OfficerNHS Diabetes

Cross Reference • Evaluating the role and perceived impact ofthe Regional Paediatric Diabetes NetworkCoordinator in the East of England.

• Evaluating the role and perceived impact ofthe Regional Paediatric Diabetes NetworkCoordinator in the South Central region

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Section 1: Introduction

NHS DiabetesThe overarching remit of NHS Diabetes is to ensurethat the quality of care for people with diabetes inEngland is constantly improving. The organisationworks with key stakeholders such as healthcareprofessionals, commissioners and people withdiabetes to improve the quality of services.

About the paediatric diabetesnetworksNHS Diabetes has developed, funded andsupported a programme of work to improve equityof care and service delivery for children and youngpeople with diabetes. As a result, each NHS regionin England now has a dedicated paediatricdiabetes network. The regional networks offersupport to healthcare professionals working withchildren and young people with diabetes byproviding opportunities for shared learning andgood practice.

The regional networks are underpinned by theNational Diabetes Paediatric Network, whichcomprise representatives from each regionalnetwork, supported by programme managers fromNHS Diabetes. The national network meet twice ayear and shape the strategic direction of thenetwork. They have identified the followingoutcomes for each regional paediatric network:

1. Raise the profile of the network and increasestakeholder engagement.

2. Undertake a health needs assessment within thenetwork.

3. Gain agreement from all units in the region toparticipate and contribute to the network.

4. Establish a regional paediatric diabetes register1

5. Support commissioners to understand paediatricdiabetes requirements and Payment by Results(PbR) tariff.

6. Take part in the National Paediatric DiabetesAudit (NPDA).

7. Establish clear governance arrangements withthe strategic health authority (SHA) and long-term conditions (LTCs) groups/boards.

8. Work with a variety of stakeholders to improvethe care children and young people withdiabetes whilst at school.

9. Develop and implement a standardised servicespecification.

To support each network in achieving these aimsNHS Diabetes has funded a regional paediatricnetwork coordinator (PNCo) role in each of theformer SHA regions, with the exception of theNorth East who chose to focus on developing aregional register and employed a registrycoordinator instead.

PNCo deliverables and responsibilitiesThe responsibility of the PNCo post is to develop alocal strategy that is aligned with national policyand the strategic priorities of NHS Diabetes, and assuch, the PNCo is expected to achieve thefollowing deliverables:

1. A strategy to ensure effective communicationwithin the network which is aligned withnational policy and directives.

2. Agreed baseline for service development andnetwork specific data collection.

3. Support the development of a regional registergiving robust information which will beproduced in a report format and feed into thenational register (see endnote on previouspage).

4. A gap analysis of children’s diabetes servicesacross the region in order to identify areas forservice improvement and development.

1 Due to ongoing debate as to the value of establishing regional registers, this objective has recently been suspended.

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5. Educational standards agreed for both cliniciansand patients aligned with the PbR contractingframework and implementation of consistentpolicies, practice and service delivery across theregion.

6. Clear evidence of public and patientengagement.

7. Evidence of development of links to other keystrategies, e.g. Children’s NSF2, ‘HealthyAmbitions’ programme3.

8. For all PCTs/providers within their respectiveregion to agree to fund and sustain this rolegoing forward in order to deliver high impactservice delivery.

About this reportThe overarching aim of the project, from whichthis report stems, is to evaluate the perceivedimpact of the regional PNCo role in achieving theoutcomes as stipulated by NHS Diabetes, set out inthe list above. This report presents the results ofthe evaluation of the North West PNCo and hasbeen prepared for the North West PaediatricNetwork and its constituent parts.

Methods usedA case study approach was used in this evaluationproject. Interviews were conducted with the NorthWest PNCo at monthly intervals. A total of sixinterviews were conducted between November2010 and May 2011. An interview templateconsisting of 10 questions guided each interview(appendix) and spontaneous probes were used tocapture further data. The first and last interviewswere conducted face-to-face, with the remaininginterviews being carried out by telephone. Eachinterview lasted for approximately one hour.Qualitative thematic analyses were conducted toidentify the main themes for this report. Inaddition to the monthly interviews, the PNComonthly progress reports to NHS Diabetes wereanalysed to capture further data and to triangulateevidence from the interviews.

The report was sense checked by the PNCo toensure data had been accurately interpreted.Although this report reflects the personal viewsand experiences of the PNCo, the document wasreviewed by the local network chair and local NHSDiabetes programme manager to ensure detailsabout the network and network achievementswere correct.

2 NSF for Children, young people and maternity services is available at:http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4089100

3 Details of the Healthy Ambition programme available at: http://www.healthyambitions.co.uk/

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The North West Paediatric Diabetes Network wasestablished in October 2010 and was developedout of a pre-existing research network that coveredpart of the region. The network aims to bringtogether clinicians, commissioners and serviceusers from across the region, to improve servicesand share good practice.

About the North West regionThe North West region comprises five counties:Cumbria, Lancashire, Greater Manchester,Merseyside and Cheshire. There are currently 28paediatric diabetes centres in the region, whichcare for over 3000 children and young people withdiabetes.

Structure and function of the NorthWest Paediatric Diabetes NetworkThe North West Paediatric Diabetes Network ischaired voluntarily by Dr Chris Cooper, ConsultantPaediatrician at Stepping Hill Hospital, Stockport.The network formally consists of a lead clinicianfrom each of the paediatric diabetes units in thearea, an NHS Diabetes programme manager, aDiabetes UK regional manager and parentrepresentatives. Additionally, all members of themultidisciplinary paediatric diabetes teams are keptinformed of developments and invited to beinvolved in network activities. There are just over

100 clinical members of the network; a few ofwhich geographically overlap with other networksand attend alternative meetings but are keptinformed of the developments of the North Westnetwork.

Associate members of the network includeacademic researchers, representatives frompharmaceutical companies and commissioners.With the introduction of the best practice tariff(BPT)4, the network has developed a businesselement, in addition to the clinical aspects of thenetwork.

The network meets on a quarterly basis, andreports to the Children's Board at the SHA on aninformal, exception reporting basis.

About the North West PNCoAs set out above, the PNCo post was created tosupport the development of the North WestPaediatric Diabetes Network in order to deliverhigh quality services. The North West (NW) PNCocame into post in October 2010 and worked part-time over 3 days (22.5 hours) per week. The PNColeft the post in May 2011 due to the uncertaintyaround the sustainability of the role and the part-time nature of the post. The position was takenover by the PNCo from the Yorkshire and Humber(Y&H) region.

Section 2: About the North WestPaediatric Diabetes Network

4 Paediatric diabetes best practice tariff resources are available at: http://www.diabetes.nhs.uk/networks/paediatric_network/

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Section 3: Key achievements of theNorth West PNCoThe sections below detail the key achievements ofthe North West PNCo and the impact these havehad on the function of the North West PaediatricDiabetes Network.

Raising the profile of the network andstakeholder engagement Developing an effective communication strategySince the North West Paediatric Network hasrecently been established, one of the first keypriorities for the PNCo was to develop an effectivestrategy to engage stakeholders. Beforeformalisation of the network, clinicians in theregion meet on an ad hoc basis to discuss specificissues, but a strategic approach to proceedingswas lacking. Moreover, not all of the units andtheir respective leads were known to the network,therefore initially, the PNCo invested a considerableamount of time identifying these units andestablishing communication links.

The PNCo felt it was important to build andmanage relationships with network membersbefore asking anything from them. Initial strategiesincluded:

• Making initial contact with clinical and non-clinical stakeholders via email.

• Minimising contact with units to ensure clinicalpersonnel were not overburdened with lengthyand irrelevant information.

• Using the first network meeting to introduce thePNCo role.

To maintain and further develop engagement thePNCo described how she:

• Used network meetings as networkingopportunities and a forum to provideinformation about specific local objectives.

• Visited each unit on a regular basis.

• Telephoned stakeholders when appropriate.

• Produced monthly update emails, includinginformation on: relevant publications, upcomingevents, and details about particular networkactivities.

A contact database was established and includeddetails of all communications between the PNCoand the paediatric diabetes units. This enabled thePNCo to keep track of replies and generate apicture of who from each unit was engaged withthe network. The database also ensured problemswere identified promptly, so the PNCo couldbecome more proactive or change approach ifunits did not appear to be engaged.

In addition to healthcare professionals, the PNCoalso sought to build relationships with otherstakeholders; including, representatives fromDiabetes UK, commissioners and academics.

Successful stakeholder engagementThe PNCo considered the relationships she builtthroughout the North West paediatric diabetescommunity one of her greatest achievements. The communication and engagement strategiesthe PNCo adopted resulted in all paediatricdiabetes units in the region becoming activelyinvolved with the network, with none of the unitsopting out of the memorandum of understanding(MoU)5 with NHS Diabetes.

Attendance rates at network meetings have beenincreasing since the PNCo came into post (Table 1).Over half of the formal members attended the lastnetwork meeting; moreover, all of the remainingmembers sent apologies to the PNCo, indicating ahigh degree of active engagement with both thenetwork and the coordinator. Network meetingshave been described as productive and proactiveand a diverse range of stakeholders are now beingrepresented, including:

5 The MoU sets out the working relationship between NHS Diabetes and Kidney Care and the individual units, describing theresponsibilities of each party and key deliverables.

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• consultant paediatricians

• paediatric diabetes specialist nurses

• psychologists

• dietitians

• commissioners

• parent representatives

Table 1: Attendance rates at network meetings

The PNCo consistently reported high levels ofmotivation from within the network, and conveyedthe importance of the PNCo role in organising thenetwork, enabling the energy and enthusiasm toprosper. These positive reports have been verifiedby the Y&H PNCo, who reported how transitioninto the role was a straightforward process due tothe systems the NW PNCo had put into place;furthermore, she felt like network membersalready knew her because of the goodrelationships the NW PNCo had fostered.

The coordinator reported being contacted regularlyfor advice or support on a variety of topics. Manyqueries could be readily answered over the phoneor via email; however, more complex questions orthose requiring specialist knowledge requiredadditional input from the PNCo, for example:

• Best practice tariff (BPT): invited BPT NationalLead to a network event to directly addressquestions/concerns and consulted her directlyabout additional queries.

• Commissioning: liaised with NHS Diabetesprogramme manager and network chair.

• National Paediatric Diabetes Audit: searched forinformation on the audit website and contactedorganisers directly when necessary.

• Finance: provided reference documents to helplocal business cases, shared informationbetween units and offered to attend localmeetings.

• Insulin pump: gathered information from varioussources including other paediatric diabetes unitsand guidance documents.

• Motivational interviewing: sourced training, heldmeeting with trainer, proposed dates andsecured funding.

• Engagement with schools: referenced workcarried out by Diabetes UK, gatheredinformation from two units that had cited goodpractice, identified potential barriers for localunit to focus on, and facilitated a discussionabout working in schools at a network event.

Many of the enquiries related to how other unitswere undertaking various aspects of serviceprovision and care, and the PNCo sought consentfrom units to share innovative and good practiceamongst network members.

Excellent progress has been also made inconnecting with the wider paediatric diabetescommunity. The PNCo reported being regularlycontacted by external stakeholders for advice andnetworking opportunities. Representatives frompharmaceutical companies offered to fundnetwork meetings, and the PNCo was invited topresent her perspective on current paediatricdiabetes service provision by the North WestPaediatric Diabetes Research Study Group.

Being seen as a source of knowledge andfacilitating the sharing of information not onlybetween the units and network members, but alsostakeholders from the wider diabetes community,suggests the role has become a valuable asset anda fundamental element to the structure of thenetwork.

Increasing participation in network activitiesThe PNCo described how each of the units hasdifferent strengths, weaknesses and needs, and byallocating roles that individual units would findrewarding, the PNCo hoped all of the teams wouldcontribute to the network.

Increasing contributions to the networkWhen it was necessary for network members toreview and respond to information, the PNCoexplained how she developed a system to managethe process effectively and efficiently. A form wasprepared to collect the responses and included

Date of network Number of people meeting attending network

meetings

October 2010 14

April 2011 28

October 2011 52

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information about the topic and the specificquestions that required answering. This systemensured units were clear about the relevanceand/or importance of the request, the correctquestions were answered, and responses weregathered in a standardised manner, making theinformation easier to collate. The PNCo felt thiswas a good way to increase the number ofresponses to requests for feedback, and ensuredthe ideas and perspectives from all networkmembers were considered.

Strategies to develop the networkThe PNCo described how working towards acommon goal was an effective way to unite thenetwork. Developing and carrying out a serviceevaluation and subsequent gap analysis would notonly serve this purpose, but would also provide abaseline of current service provision for the regionfrom which the network could build. An initialemail providing succinct information about theservice evaluation, what it would entail, andexactly how much time it would take, wasdistributed to all of the paediatric diabetes centresin the region. The PNCo believes this tactic waseffective, as 24 units provided a prompt positiveresponse to the email, and the planned follow-uptelephone call to discuss the project was onlynecessary for the four that did not reply. Effectivenegotiation resulted in all units agreeing toparticipate; furthermore, a large number of unitsvolunteered to pilot the service evaluation, whichthe PNCo described as a real measure of success.

Service evaluation and gap analysisThe PNCo reported a lack of knowledge aboutlevels of paediatric diabetes service provision in theNorth West due to the low percentage of unitsparticipating in national audits – putting the regionat a disadvantage. Therefore, a service evaluationwas imperative to provide accurate and up-to-dateinformation on the current state of paediatricdiabetes services in the region. This informationwould inform a gap analysis to identify areas forimprovement, and would also ensure that units areprepared for the introduction of BPT.

The service evaluation covered all aspects ofpaediatric diabetes and diabetes care, fromdiagnosis, to transition into adult services. The PNCo described how she used her experiencein audit and analytics to develop the questionnairein conjunction with the network chair. Thequestions were devised using a range of resources,including: National Service Framework for Childrenand Young People, NICE clinical guidelines for type1 diabetes, BPT discussions and other best practiceguidance. The structure was based on DiabetesE,an online self-assessment tool, to make efficientuse of the questions already developed. Stockport,Chester and Macclesfield were the first three unitsto express an interest in the project and weresubsequently chosen as the pilot sites.

The PNCo described how she used thequestionnaire to conduct semi-structuredinterviews with each of the units, therebyachieving a more open rather than fully structuredservice evaluation. The data was collated in aspreadsheet by representatives from each unitbefore the PNCo revisited each unit and invitedthem to review the information and amend asnecessary. Units were supported at networkmeetings to identify specific areas of concern,enabling the network to work more strategically inaddressing priorities at regional level. A reportdetailing the findings from the service evaluation iscurrently being drafted and will be available to thenetwork later in the year.

All units in the region have carried out the serviceevaluation. The PNCo considered this positive andactive response to the project, and the number ofunits eager to take part, to be a real achievement.She viewed this as evidence of how the PNCo cansuccessfully facilitate the objectives of the nationalnetwork while also motivating and supportingnetwork members to take active steps towardsimproving and developing diabetes services forchildren and young people.

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Establishing work streamsTo enable the network to meet some of thenational objectives and other local prioritiesidentified during network meetings, four workstreams have been established and objectives havebeen set:

Dietetics and DSN resources• For all areas to outline how they plan to support

schools in their care of children with diabetes;especially for newly diagnosed children.

Psychological support• By April 2013 all members of the North West

network will have access to training on mentalhealth assessment for young people andfamilies.

• By April 2013 all members of the North Westnetwork will have access to validated mentalhealth assessment tools for young people andfamilies.

Patient involvement/transition• To develop a transition toolkit to assess, with

young people, their competency in areas oftransition.

• For a North West network meeting to showcaseexamples of good practice in engagement withyoung people and their parents.

Best practice tariff• All units to have had discussion regarding the

specifics of tariff.

To assist the delivery of specific pieces of work, thePNCo provides administrative and communicationsupport to the working groups and acts as thepivotal link between the various stakeholders. This support not only enables the efficient sharingof knowledge and information, but can alsoprovide the drive and momentum to enableprojects to be delivered in a timely manner. The current PNCo has reported that the workstreams are progressing well and on course toachieve their objectives.

Data submission to the NationalPaediatric Diabetes Audit As previously discussed, participation in the NationalPaediatric Diabetes Audit (NPDA) in the North Westregion was poor, with only ~40% of units takingpart in the 2008/09 NPDA6. Although barriers tosubmitting data were predominated by lack of ITresources and expertise, the PNCo also conveyed thereluctance of some units to submit data because ofprevious experiences; for example, poor organisationof the submission process. It was also reported thatnetwork members expressed concerns about thequality of the analysis and interpretation of data, asthe findings were not perceived to be reflective ofwhat is going on in the units.

Despite these barriers and reservations, the PNCoreiterated the importance of good quality data tothe units and focused on developing the abilities ofunit members to manage and utilise their owndata. As a result, audit participation rates increasedto 68% in 2009/10, and continued support fromthe subsequent PNCo has led to a 100%submission rate in 2010/112. This has been a greatachievement for both the North West region andthe PNCos, and importantly, prepares the units forthe impending BPT which requires all units to takepart in the NPDA.

Implementation of policies in line withBPTInput into the development of best practice criteriaCriteria to incentivise best practice for paediatricdiabetes were developed by the national clinicalleads and representatives from the regionalnetworks7.The PNCo expressed concerns that unitswere not being consulted on the development ofthe BPT, and opted to distribute the consultationdocument to network members after eachrevision. Time was also set aside for units todiscuss the tariff with the PNCo during the serviceevaluation meetings. The coordinator acted as a

6 Available at: http://www.ic.nhs.uk/nda

7 Details of BPT criteria are available at: http://www.diabetes.nhs.uk/networks/paediatric_network/

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communication link between the units and theNational Clinical Lead for BPT; queries andconcerns were collated then forwarded to the BPTlead, and detailed responses were relayed back tothe units. The BPT lead also attended a networkmeeting where further discussions of the issueswere facilitated by the PNCo. The PNCo believessome of the changes made to the draft tariff mayhave been in response to queries raised by theNorth West network, and without facilitation bythe PNCo the views of the units may not havebeen taken into account.

Supporting units to understand BPTAlthough members of the North West networkwere not initially engaged with BPT, the PNCocontinually employed different tactics to ensurethis matter became a priority for all units. At first,the PNCo reported it was challenging for manyteams to turn their attention from clinical topics tofinancial issues. Organisations were split betweenthose managing financial matters and thosemanaging clinical aspects of care. Therefore, thePNCo focused on providing education on servicemanagement, including negotiating withcommissioners, and identified internal resources toenable the units to redress the dissociation. To address the anxiety many of the units werecommunicating regarding the tariff, the PNCo alsopressed units to develop relationships and seeksupport from within their own organisation. For example, the PNCo facilitated engagementbetween the paediatric diabetes units and financialteams to enable them to build business cases forthe new tariff. The support and guidance providedby the network coordinator has ensured allpaediatric units in the North West are fully awareof the impending changes to funding,empowering them to take the necessary action toensure they receive the new payment.

The PNCo described how people had beencontacting her independently for assistance andadvice about resourcing and BPT, demonstrating

that progress on the issue was becoming unit led,rather than PNCo led, providing further evidencethat the network coordinator role has becomeimportant for facilitating network objectives.

Supporting commissioners to understand PbR tariffAlthough the majority of units were ready toengage with commissioners about BPT, the currentreorganisation of the PCTs meant there wasuncertainty amongst commissioners as to whowould be responsible for paediatric diabetes.Furthermore, the PNCo reported that at the timeof the interviews, commissioners were notprioritising children and young people withdiabetes or the new tariff until the best practicecriteria became mandatory. Consequently, contactwith commissioners was de-prioritised until thisissue had been resolved by PCTs.

The current PNCo worked with the SHA toschedule an event to engage commissioners withBPT which took place in December 2011. The NHSDiabetes programme manager reported that all ofthe commissioning groups and the SHA wererepresented, and that whilst the information waslargely well received, it was evident thatconsiderable work was needed to ensure allstakeholders were ready for the introduction of thenew tariff.

Patient and public involvementThere was a reported lack of patient and publicinvolvement in paediatric diabetes across the NorthWest region. The Diabetes UK service userinvolvement team was contacted by thecoordinator to try and find ways to address thisissue, and she reported having input into theDiabetes UK North West Family Day. The PNCospoke of her intention to design innovative ways toincrease the number of service users involved innetwork activities, and a work stream was set upto showcase examples of good practice inengagement with young people and their parents.

8 Information on the 'Join Us on Our Journey' project is available at:http://www.diabetes.nhs.uk/about_us/research_and_evaluation/join_us_on_our_journey/ andhttp://www.leedsmet.ac.uk/gettingsorted/61165D76C64C4A85BA0548AC0FE6DCB3.htm

9 Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_073674

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Establishing creative ways to engage children andyoung people, and methods of how units canlisten to patients and carers are currently indevelopment. For example, units have engagedwell with the parents and children and youngpeople from the ‘Join Us On Our Journey’ (JUOOJ)8

project. This was a three-year research projectcommissioned and supported by NHS Diabetes andcarried out by Leeds Metropolitan University. The aims were to develop a model of care that willdeliver the aspirations of the policy document‘Making Every Young Person with DiabetesMatter’9 and improve provision of care for childrenand young people with type 1 diabetes, andrepresentatives from the JUOOJ group feed intothe network.

The current PNCo is consulting with a local adultdiabetes network that has successfully embeddedservice user involvement10, on how best toimplement a patient expert reference group, whereservice users can be consulted on specific pieces ofwork. It is hoped that this approach will result inmeaningful and valuable service user input into theimprovement and development of paediatricdiabetes services in the North West region.

10 Information on the 'User Involvement in Local Diabetes Care' project is available at:http://www.diabetes.nhs.uk/about_us/research_and_evaluation/an_independent_evaluation_of_the_user_involvement_in_local_diabetes_care_project1/ and http://www.diabetes.nhs.uk/areas_of_care/user_involvement1/

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The PNCo has, understandably, faced somechallenges during the initial months of the post.Many have been resolved or lessened followingdiscussions with network stakeholders, or throughcareful time management.

Time constraintsOne of the biggest challenges the PNCo reportedwere time constraints; not only on the PNCo rolebut also other members of the network.Coordinating diaries to schedule meetingsbetween the various stakeholders was not alwayseasy as clinical duties were understandablyprioritised over the network.

The PNCo reflected on previous roles and felt thatthe deliverables of the post were unrealistic withinthe timeframe, and that the development of thenetworks should be more gradual. The PNCoconveyed her belief that time was needed to buildsolid stakeholder relationships which needed to befirmly in place before asking network members toembark on tasks that would possibly take timeaway from their clinical commitments. However, aspreviously described, the PNCo successfully builtstrong relationships with the network, evidencedby increased attendance rates at network meetingsand 100% engagement in the service evaluationproject. Therefore, this challenge has beenovercome and the coordinator can focus onfacilitating the network in achieving theirobjectives.

The PNCo reported having strong time-management skills but stated that the part-timenature of the post had impacted negatively on herability to effectively carry out the role. For example,the frequency of visits to paediatric diabetes unitshad to be limited due to the extensive travel timebetween the hospitals. This reportedly not onlyhindered the building of relationships with unitstaff, but also impacted on the delivery of theservice evaluation. The PNCo expressed strong

feelings that the role should be full-time,particularly as the post is continually developingand the PNCo position has became more involvedwith the network and network activities.

Differences between national andlocal prioritiesThe PNCo reported conflict between the outcomesset at a national level and local priorities. For example, the PNCo described how the BPT,submission to the NPDA and the development of aregistry were perceived by the network to be smallissues compared with the reorganisation ofprovider services in the North West. Given that theobjectives for the network were set nationally afterconsultation with each of the ten regions it isunderstandable that national and regionalpriorities may not be completely aligned. As previously discussed, despite the challenges andmisgivings about submitting data to the NPDA andengagement with BPT, the PNCo has ensured thatthese outcomes have been achieved. Progress hasalso been made establishing a regional register(see below).

However, the PNCo expressed her concern thatfocusing purely on nationally set outcomes limitedcapacity for addressing additional regional issues.For example, the PNCo described how thereorganisation of services could further exacerbatethe inequality of service provision in many areasacross the North West. The PNCo felt confident,capable and happy with what she was doingregionally, but felt there was something missing interms of national structure and objectives and howlocal and national needs fit together.

National RegisterThe PNCo conveyed that some members of thenetwork were keen to submit data to a nationaldatabase; however, members of the networkexpressed reservations about the value of aregional register, particularly if data items collected

Section 4: Challenges

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by the NPDA are improved. A number of otherbarriers, predominantly IT related, were alsoidentified. Paediatric diabetes units in the NorthWest use several different databases, and patientdata is collected in a variety of formats, with someunits using paper records. Many units were alsoreportedly apprehensive about their knowledgeand the resources required to maintain a localdatabase.

As described in the earlier East of England PNCoevaluation report11, one of the other main barriersto establishing a registry has been obtaining ethicalapproval which has caused considerable delays tothe project. However, a regional register hasrecently been launched in the North East, and theNorth East Paediatric Registry Coordinator has

been supporting the regional PNCos with the set-up process, particularly applying for ethicalapproval. It is hoped that this shared learning willhasten the ability of the other regions to establisha registry in the future.

Although these compounding factors have led tothe North West network to deprioritise the registry,the PNCo reported working with units to improvecapacity such as standardising methods of datacollection, improving data collection processes,and identifying funding and training, to enableunits to submit data to a registry should thenetwork consider a regional database valuable inthe future. Furthermore, these initiatives will allowunits to submit data to the NPDA more readily.

11 Available at: http://www.diabetes.nhs.uk/about_us/research_and_evaluation/regional_paediatric_diabetes_network_coordinator/

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Previous experiencesThe PNCo felt very confident in the role because ofher previous experience. Having worked withnetworks in the past, the PNCo realised the needto build relationships before demanding anythingfrom them, and used this knowledge to formulatestrategies to successfully engage networkmembers. The PNCo believed that her analyticaland audit background within the NHS provided thenetwork with the expertise to develop and carryout the service evaluation. Previous employment inthe North West region was also described as anadvantage, as the PNCo already knew the peopleshe would need to contact to get specificinformation.

Support from the network As previously discussed, the PNCo reported highlevels of enthusiasm and motivation from withinthe network. This proactive attitude enabled her toseek information and advice from a variety ofstakeholders, in particular, the network chair. With regard to the BPT, the NHS Diabetes regionalmanager was regarded as a good source ofinformation and always responded to emails in atimely manner. Assistance was also available fromoutside the network, for example, the chairreported that the department manager atStockport Hospital ‘helped her to settle and findher feet’. Having this level of support from bothwithin and outside the network has made it easierfor the PNCo to carry out the role efficiently andeffectively, which in turn, has had a positive impacton the network and contributed to its success.

Section 5: Enablers

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The uncertain future of PCTs and SHAs is the majorinfluence on the sustainability of networks and thePNCo role. Currently, networks are devisingstrategies to address these impending changes.The current PNCo is in the process of writing asustainability paper which will be presented to theNorth West network early 2012.

Section 6: Influences on thesustainability of the PNCo role andnetworks

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The PNCo role has been pivotal in facilitating the achievements in the network, and are summarised in thetable below.

Section 7: Conclusion and next steps

Table 2: Achievements of the North West Paediatric Network facilitated by the Paediatric DiabetesNetwork Coordinator

Network and PNCodeliverables

Outputs / Outcomes

Effective communicationstrategy with the networkand increased stakeholderengagement

Attendance at network meetings has increased almost four-fold since thefirst network meeting in October 2010

All members of the multidisciplinary paediatric diabetes team,commissioners and service users are represented in the network

Regional network page on NHS Diabetes website

100% engagement with the service evaluation project

All units have agreed a MoU with NHS Diabetes

Baseline for servicedevelopment and networkspecific data collection

100% participation in the service evaluation

Submission to NPDA 100% submission to the 2010/2011 audit

Regional Register Working to standardise data collection

Liaising with North East Registry Coordinator

Implementation ofconsistent polices, practiceand service delivery

BPT work stream established

Input into the development of the criteria to incentivise best practice

Paediatric diabetes units and commissioners are fully informed of BPT

Psychological support work stream established

Dietetics and DSN workstream established

Public and patientinvolvement

Patient involvement work stream established

Links with Diabetes UK service user team

Input into Diabetes UK North West family days

Links with local adult diabetes network that have embedded service userinvolvement

Standardised servicespecification

Service specification developed by Yorkshire and the Humber network isbeing implemented

Schools work Dietetics and DSN workstream established

Sustainability of the role Sustainability paper being drafted

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Successful engagement between the PNCo andthe network members has contributed to theachievements of this newly established network.The greatest achievements have been thedevelopment and participation in the serviceevaluation, and submission of data to the NPDA byall paediatric diabetes units in the North Westregion; particularly as not all of the units and theirrespective clinical leads were known to thenetwork when the PNCo first came into post.Findings from the audit and service evaluation willprovide invaluable information about the currentstate of paediatric diabetes services in the NorthWest region, enabling clinical teams to identify thegaps in the services they provide and inform themof improvements that need to be made.

Having the role of the network coordinator hasensured network members and commissioners areinformed of the impending BPT, and this workcontinues to ensure that all stakeholders are fullyprepared for implementation of the tariff whichbecomes mandatory in 2013/14.

Work also continues to engage service users in thedevelopment of paediatric diabetes services in theNorth West region. Parent representatives nowattend network meetings and the network hope toimplement a patient expert reference group in thenear future.

The network coordinator has helped the networkdeliver these objectives by providing effective andefficient administrative and communicationsupport, facilitating between the network and keyinternal and external stakeholders. The role hasbeen the driver for many projects and has helpedmaintain the momentum of several networkactivities, ensuring outcomes are delivered in a

timely manner. The North West PNCo alsoprovided specific expertise in areas such as audit,analytics, service management and development,which provided the network with the capability ofachieving some of the more specialist networkobjectives.

The current PNCo continues to develop stronglinks established by the PNCo not only withnetwork members but other paediatric diabetesstakeholders, which have been the key tosuccessfully addressing the strategic priorities ofthe network.

Scope of the role The interviews with the NW PNCo raised a numberof questions about the scope of the role. The posthas only recently come into fruition, and it isunderstandable that the role will evolve. The PNCoembarked on numerous additional initiatives tofurther develop the network, many of which havearisen as a result of her previous experiences. Infuture, these projects may prove beneficial to thenetwork; however, given that one of the majorchallenges has been time-constraints, at thiscurrent time the focus of the role should bealigned with priorities set by the national network.

Next stepsThe final interviews have been conducted with thePNCos in the Yorkshire and the Humber regionwhich will conclude the four PNCo role casestudies, and a report similar to this one will beproduced for that network and its constituentparts. Subsequently, an overarching report offindings will be produced and published on theNHS Diabetes website.

Further copies of this publication can be ordered from Prontaprint, by emailing diabetes@leicester.prontaprint.com or tel: 0116 275 3333, quoting DIABETES 177

www.diabetes.nhs.uk