Scottish Paediatric Cystic Fibrosis Managed Clinical Network
Minutes from above meeting held at 1.00 pm – 3.00 pm on Friday 23 November 2012 in The Board Room,Perth Royal Infirmary.
Present:
Dr Tim Adams / Paediatrician, Ayrshire & ArranDr Richard Brooker / MCN Clinical Lead, RACH, Aberdeen
Dr Alison Coates / CF Dietitian, RHSC, Edinburgh
Greg Fearn / PCF MCN Manager
Katharine Fok / Pharmacist, RHSC, Edinburgh
Susan Grant / Parent Representative, Edinburgh (by teleconference)
Yvonne Hughes / CF Expert Patient Advisor, CF Trust
Dr Greg Hunt / Paediatrician, RAH, Paisley
Aileen Mallinson / CF Nurse Specialist, RHSC, Edinburgh
Kathryn Sharp / CF Physiotherapist, RHSC, Edinburgh
Dr Alan Webb / Paediatrician, Raigmore, Inverness
Apologies:
Dr Marzi Davies / Radiologist, RAH, PaisleyDr Andrew Fall / CF Associate Specialist, RHSC, Edinburgh
Dr Ian Gould / CF Microbiologist, ARI, Aberdeen
Catriona Johnson / Programme Manager, National Services Division
Dr Tom Marshall / Respiratory Paediatrician, RHSC, Edinburgh
Dr Jane Wilkinson / CF Associate Specialist, RHSC, Glasgow
Chair:
Dr Richard Brooker
1. / Welcome to new members / apologies / ActionApologies were received and noted as above.
2. / Minutes from meeting 24 August 2012
Minutes from the previous meeting were accepted as an accurate record of proceedings apart from one correction from Susan Grant setting out a more robust declaration of support from the group on Ivacaftor.
3. / Matters Arising
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3.2
3.3
3.4
3.5
3.6 / Newborn Screening Update
With Dr Fall and Catriona Johnson giving their apologies there was no update.
Microbiology MCN Update
Greg Fearn distributed the written update from Dr Gould, which indicated that he had met Prof Craig Williams on 14/11/2012 and they agreed to identify those CF Trust recommended microbiological procedures that were not followed by the Scottish laboratories. This would be done via the 2 recent surveys conducted by the SPCF MCN and the Scottish Microbiology and Virology Network (SMVN). Where the CF Trust is not specific with recommendations then it was proposed that the SMVN will agree standardised procedures, including which antibiotics will be reported, at a special meeting to be convened in the near future. It was hoped that this could be presented to the Scottish CF Group/SPCF MCN annual educational meeting in May 2013
Training Needs Analysis
There has been a poor response to the Training Needs Analysis (TNA) such that it has not been possible to progress proposals for co-ordinated education at national, regional and local levels.Greg Fearn asked those of the group, who hadn’t yet done so, to complete the TNA as soon as possible, and to encourage responses from their colleagues across their professional groups and centres.
A group response from the physiotherapy group will be submitted by Kath Sharpe.
The group discussed the idea of having a national meeting for PCF in addition to the national Education Event. This could take place on one of the allocated Steering Group days and involve a network business meeting and educational session and/or presentations. Alison Coates suggested looking at regional events too. Kath Sharp felt it important that the meeting was focussed on paediatric CF. It was agreed that a meeting should tried in Autumn 2013. Greg will produce a proposal on this for discussion at the next SG.
Service Mapping
Dr Brooker informed the group that the individual mapping reports will be sent to each centre in the coming weeks to check for accuracy. Greg Fearn will do an over-arching report. There was a brief discussion of what the next steps would be in terms of implementing any recommendations and taking issues forward with management teams. This will be discussed further at the next Steering Group meeting.
Ivacaftor
The Steering group’s opinion was submitted by Dr Brooker to the National Services Division (copied to the Scottish Medicines Consortium) earlier this month. Yvonne Hughes informed the group that the CF Trustdid not feel that the Scottish Medicines Consortium had a good track record, noting that 12 out of 29 respiratory drugs(only one CF-specific medication) had been approved since 2006.
Public Involvement
Susan Grant updated the group. A patient forum was held on 25 September2012 at the RoyalHospitalfor Sick Children, Edinburgh. The meeting was split into two sections; guest speakers and informal chat. 14 parents had attended the meeting. The next meeting will be held on 22 January 2013. Aileen Mallinson is involved, and Prof Mary Porteous from the University of Edinburgh will present on genetics and CF.
Yvonne Hughes reported the latest from her group based in Lanarkshire. They meet every six months with the next meeting being held in May 2013. It is likely to focus on microbiology.
Greg Fearn will attend the next West of Scotland meeting and Dr Adams will send out the flyer to families to encourage more attendees. Yvonne Hughes offered assistance with the meeting.
The steering group felt that new parent support groups should be held at venues that did not involve too much travelling and that teleconferencing would facilitate involvement from the largest geographical areas
With the resignation of the patient representative from the North of Scotland, and the difficulty for the West’s representative to attend, there is currently only Susan Grant regularly attending steering group meetings. Dr Brooker suggested that in addition to a patient representative from the South-East there should be 1 from the North (preferably with a rural perspective) and 2 from the West, to give a strengthened and balanced patient/parent viewpoint. He had someone in mind for the North and he asked the clinicians from the West to seek possible candidates. The group also discussed introducing adolescent representation which could be facilitated via Facebook or alternative social media sites. Dr Adams and Kathryn Sharp agreed to assist Greg Fearn, who will take the lead for this.
Yvonne Hughes proposed an audit on the website and usage. / All
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4. / Protocols / Guidelines
Dr Brooker provided an overview of the current status of our protocols, based on Dr Wilkinson’s written report:
-Producing national guidelines / protocols, which offer somewhat limited flexibility of practice, may not be the best approach. Given the regional variation in day to day practice, it was agreed that protocols should offer a minimum standard with the flexibility to go further. Practice should be subsequently audited against desirable outcomes. Dr Wilkinson will work with Dr Brooker, Greg Fearn and Becky Bolger in the coming months to model these.
- General MCN Protocols
-Protocols in production
- Pseudomonas eradication (Dr Brooker leading)
- IV antibiotics for respiratory exacerbations (Dr Hunt leading)
- The IV Central Lines protocol development revealed the challenges in modelling a protocol which would include all current practice (see above). Greg Fearn has been working on an audit tool for this protocol and will liaise with Aileen Mallinson.
- Alison Coats gave a presentation at the November CF Exchanges Meeting, Dunblane, on the Dietitians’ Group protocols which have been produced in 2012.
- Dr Brooker will seek physiotherapy input into the pseudomonas eradication protocol
- Pharmacists Group
- Dr Wilkinson is currently liaising with Kathryn Fok regarding a SPCF MCN Formulary and a Patients / Parents Glossary. As this is a substantial piece of work, Kathryn Fok plans to start with harmonising antibiotic prescribing, by adapting formularies that arealready in use, before moving onto vitamins. Yvonne Hughes will forward the CF Trust drugs/medicines literature.
- Psychologists
- In the absence of Dr Strachan there was no update.
- Radiology
- In the absence of Dr Davies there was no further update on the proposed radiology protocols
- Alison Coates suggested that there should be an option for clinicians to feedbackon any published protocol on theSPCF MCN website, as it would be useful to receive comments from professional groups out-with the Scottish CF community. The group also discussed having a nominated personfrom each health professional sub-group to provide feedback on allprotocols.
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5. / Audit
Dr Brooker explained that data collection for the Clinical Quality Indicators (CQI) has been piloted in Aberdeen. A proforma will be used to collect the small amount of data, in addition to that already collected for the CF registry annual report, that is required to the inform the five CQIs which are not fully attainable from the CF Registry. Greg Fearn will work with the CF Trust to gain access to the Scottish data to provide the remaining data on all of the CQIs. This would also allow real time reporting rather than historical data from over 1 year earlier.
The dietetic group plans to audit the dietetic aspects of the annual review in 2013
Greg Fearn distributed a proposal for an audit subgroup (see appendix 1) and it was agreed that we should extend the Steering Group twice a year, by one hour,to focus on audit. Kath Sharp, who will speak to the local clinical effectiveness team, agreed to support Greg in the coordination of this work. / GF
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6. / Professional Subgroup Updates
- Physiotherapy. Kath Sharp will forward a treatment booklet, developed in RHSC Glasgow, to all physiotherapists in the West of Scotland.
- Psychology. Greg Fearn reported that an audit of the new diagnosis experience is being led by Dr Shona Murphy, Fife. The questionnaire has been completed. It may be possible to repeat this audit in other regions.
7. / Mid Year Meeting 22/11/12
Greg Fearn and Dr Brooker briefly explained the general positive outcome,under the following headings, from the recent SPCF MCN mid year meeting held with NSD:
- Person centred. The success of the parent group was noted in the South-East with plans to develop support groups in Highland, Lanarkshire and ForthValley followed by the rest of the country.Internet resources were thought a possible mechanism to link families from out-lying areas.
- Safe. The importance of the development of an effective CQI system was stressed to show quality improvement as part of the National Delivery Plan monitoring process.
- Efficient. The SPCF MCN is currently managed and administered on a short-term secondment basis. Ratification of these posts to substantive posts was sought, but the outcome was that the status would remain unchanged until a refreshed proposal from NSD was published for national MCNs.
- Equitable. An equality and diversity impact assessment is required for 2013
8. / AOCB
Dr Brooker proposed presentations, at the Scottish CF Group/SPCF MCN annual educational meeting, on chest x-ray scoring, review of the MCN’s achievements, Scottish Trend data from the CF Registry annual report, and the paediatric CF clinic mapping report. He asked the group to email any other suggestions. / All
9. / Date and Time of Next Meeting
The next meeting will be held on Friday 1 March 2013 in the Boardroom, Perth Royal Infirmary from 1-3pm.
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MCN/Paeds CF/CF Steering Group/2012/231112/Minute
(Appendix 1)
Proposal for a PCF MCN Audit Subgroup
It is proposed that the MCN develops some form of subgroup to oversee and undertake work relating to clinical audit. The format of this group needs to be discussed and decided by the Steering Group. This could be a formal subgroup, work led and coordinated by a single clinician or part of an extended Steering Group a couple of times a year. The remit of the group will need to be decided by the Steering Group but could include audits, standard and protocol development, data collection and clinical system development.
Below are some suggested areas of work that are currently underway in some form, but could come under the remit of the subgroup.
Suggested Area of Work / Progress to date / Desired Outcome1 Develop a robust approach to data collection, particularly in relation to the Clinical Quality Indicators agreed by the network. / It has been agreed that the CAS implementation will focus on robust collection of data at annual review, in line with our new protocol and agreed CQIs. A dataset to aid data collection has been agreed. / The MCN will have a structured approach to data collection, analysis and reporting, based on the agreed CQIs.
2 Auditing the Clinical Quality Indicators
/ The network can currently audit 4 of our 9 CQI’s from Port CF. The rest will be done via a structured audit of 20-25% of all records from each treatment centre. / The MCN will have robust audit data from all treatment centres in Scotland, which will be reported nationally.3 Protocol Audits / The network has been active in the production of protocols covering our relevant specialties. There is a requirement to measure the effectiveness of the protocols via clinical audit / Specific protocol audits should be developed by each specialty subgroup
4 Central Venous Line Audit / It has been agreed to look at practice throughout Scotland in order to inform the development of the guidelines which the Nursing Subgroup has been working on. / Establish a national overview of central line management.
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MCN/Paeds CF/CF Steering Group/2012/231112/Minute