DAFNE Executive Meeting 1 February 2013 NHCFT, Cobalt Meeting Room 3, Newcastle upon Tyne

Transcription

1 DAFNE Executive Meeting 1 February 2013 NHCFT, Cobalt Meeting Room 3, Newcastle upon Tyne Present: Helen Hopkinson (HH) Glasgow (Chair) Anita Beckwith (AB) King s College, London Mark Evans (ME) Cambridgeshire Gillian Johnson (GJ) NHS Diabetes Ian MacLellan (IMcL) Vice Chair DUAG Peter Mansell (PM) Nottingham Simon O Neill (SO N) Director of CIA, Diabetes UK Julie Reed Northumbria Healthcare NHS FT (part time) Carolin Taylor (CT) Sheffield Teaching Hospitals Gill Thompson (GT) National Director, DAFNE Programme Apologies: Stephanie Baldeweg UCLH Simon Heller (SH) Sheffield Teaching Hospitals David Hopkins (DH) King s College, London Liz Kamps (LK) UCLH Liesl Richardson (LR) Norfolk and Norwich Peter Rogers (PR) Chair DUAG Pauline Weir (PW) Hertfordshire Minutes: Sharon Walker (SW) National DAFNE Programme Manager Welcome and apologies HH welcomed everyone to the meeting. Apologies were accepted. Agenda changed to reflect the late withdrawal of DH; group was still quorate. Review of last minutes / progress of actions against strategy HH asked if anyone had any issues from previous minutes? GT Strategic minutes of 27 September page 4 regarding analysis of data from the database assigned to ME, different perspective of what is requires clarification. HH At Central DAFNE we need to pull out clearly for the minutes. HH confirmed the core database analysis will be done by Susan Moore, Database Manager. PM confirmed this is what is going to be KPI, core data, one year follow up for all centres. ME will analyse outcomes by centre and post code from research database as a new project that will look at outcomes in more detailed way. Decision: Amend 1st table on page 4 of Strategic minutes of 27 September 2012 and Page 4, Strategic Plan, item 1.5 both to read Analysis of data from DAFNE research database with respect to outcomes by centre and by post code. Also amend timeframe from 1 December 2012 to End May Action: SW to amend minutes Action: GT to amend the Strategic Plan to reflect the decision. Created on 18/02/ :44:00 1 of 10

2 HH we should have some syntax agreement now about the databases we agree Core refers to the basic data any DAFNE centre collects and Research for the large dataset with questionnaires that is only collected by the 10 research database centres participating in the study. Decision: Core database data collected by all centres. Research database for extended data. Group discussed the HbA1c KPI report produced by SM. PM need to stratify, this is for people who we are trying to improve control, to include only people starting HbA1c above 7.5. We also need to state to qualify for inclusion in the outcome table a centre must have at least 50% paired follow-up data HH we could have a phased introduction of KPIs: this year for the KPI we aim for more complete data collection (over a how long period?) Then subsequent years we introduce the KPI for improvement in HbA1c. The group agreed. PM the current core data will be presented at the Collaborative meeting in June, rather than sending out individual centres reports now. We will delay sending data to centres until the week following the Collaborative meeting, whilst discussions are fresh in the mind, this will maximise impact. The group agreed to put these suggestions to DH during KPI discussions later in the meeting GT asked if there is anything else SM needs to do with the data? Replace the word all in the column headers with HbA1c in the report prepared by SM. Action: SM to replace all to HbA1c on report. Action: SM to reorder data in terms of ascertainment of 1 year paired data. Progress of actions 1 HH had contacted Anna Morton. NHS Diabetes is being disbanded in the new NHS commissioning structure. AM is hoping to create Diabetes Care Alliance. Consequently the mapping and commissioning document we were working on are shelved. SON Diabetes UK are trying to get together an alliance of organisations who are writing to Jeremy Hunt and various others to try and save the functions of NHS Diabetes. The functions should be embodied somewhere in the NHS and there should be a diabetes lead around this. Would DAFNE be interested in supporting this? Group agreed. Action: SON will ask Brigit Turner to send HH an invitation. Action: HH to endorse on behalf of the DAFNE Collaborative. 17 HH made enquiries with contacts who are involved in medical undergraduate curricula. There is no unifying body that deals with undergraduate curricula. The only relevant link HH had found was through an ABCD circular regarding an update on the Prescribing Skills Assessment that is at pilot stage. HH has made contact with the head of Education at the British Pharmaceutical Society to offer collaboration. A positive response has been received with the promise to renew contact in the summer for formal discussions regarding contribution of diabetes related questions. Created on 18/02/ :44:00 2 of 10

3 19 Specialist Registrar curriculum. HH had reviewed the current UK diabetes SpR curriculum for reference; attendance at structured education is in the optional section. HH has made contact with Specialist Advisory Committee proposing that there is a growing body of opinion that this should be to put into the mandatory section rather than optional; SAC have picked up on this and will discuss at their next meeting later this month. 21 HH asked if there any progress had been made by the Educator Group in terms of competencies for their professions. HH this is going to be key in the same way that it is for specialist registrars. We don t have to specify DAFNE training, we can be generic, we can say we want structured education training to be core for diabetes specialists whether they are doctors, nurses or dieticians. SON DSN should be an accredited role and should be taken up by NMC. There are no precedents in other specialties, but they may consider creating a set of competencies for a generic specialist nurse. There is a piece of work just starting with TREND and Royal College to see whether someone can take on DSN accreditation. If you use the term diabetes specialist nurse it should have a meaning. Diabetes UK can encourage but believe this is up to TREND and the RCN to do it. Action: CT to contact Debbie Hicks from TREND to establish links. 27 How do we get patients started on mealtime insulin from diagnosis? CT informed this is on the Spring educator group network agenda. Will look at this again after discussions at network meetings. 39 College programme leads - waiting for outcome of Item 19. KPIs for external audit reports & Focus on HbA1c outcomes David Hopkins joined the meeting via telephone link.. Focus on HbA1c outcomes HH informed DH of discussions earlier in the meeting. DH - asked what the current HbA1c ascertainment rate was. GT stated from Sue Moore s report on Core Database 46% at 1 year of which only 39% was paired data. We should be targeting ideally 70%, particularly now we are not asking for data entry beyond 1 year. Centres should be encouraged to get as complete 1 year data as possible. DH suggested performing some work modelling on last 3 years data, not to publish individual centres, but to do as mock exercise based on the data completeness now, show what can be achieved. HH pointed out that people need to understand a large part of the successful funding argument for DAFNE depends on ongoing audit of outcomes. DH we need to sell at the Collaborative and show why we need to get the data up to 70%. PM we need to raise awareness at a plenary and in a workshop. Don t focus on the best performing centre in terms of reduced HbA1c, involve people who have the best ascertainment for baseline and follow up data so they can show how they do it. Then we can value it and demonstrate importance of it. This will be the new focus of the aiming higher workshop. Created on 18/02/ :44:00 3 of 10

4 KPIs for external Audit Group discussed report 9a KPI document. HH updated DH on earlier discussions. DH established group are happy with the way he has constructed the KPI. There was discussion between ME, DH, PM, HH and CT regarding stratification of outcomes by baseline HbA1c. The agreement was to keep it simple, stick with one strata of baseline >7.5%. PM there is a huge enthusiasm for this; the Board are highly supportive of what DH has done. HH is there scope for writing this up in the same way protocols are published? DH yes. Action: DH to write up modelling work for determining KPI levels. Centre Audit Criteria PM proposed raising the targets for data ascertainment in the 3 yearly centre Audit criteria. GT reported the first time we target a new domain we usually get very poor results but we see an improvement over the 3 year cycle. GT suggested we leave targets unchanged until 2015 so that we can compare to see if there is improvement as a result of focussing at the Collaborative and sending round individual reports. We agree in principle with all recommendations. First recommendation of Biomedical KPI discussion paper ratified at previous Executive meeting, as is recommendation on page 2. Page 3 at baseline we exclude patient < 7.5% ratified. GT - the % cut offs for red, amber and green scores as presented in report 9a need to be amended to clarify and rather than < and > GT - instead of using % for HbA1c we need to put it into mmol/ml. We need a clinician to give us guidance on conversion of % values to mmol/mol. PM 7.5% equated to 58 mmol. Action: Susan Moore to check conversion table on DUK website, to convert % values to mmol/mol. Action: GT to amended % cut offs for red, amber and green scores. Final recommendation on hypos At last meeting we ratified decision on hypos to include options 1 and 3, now DH is recommending option 1 only. Do we ratify? Decision: All recommendations in DH s report 9a as tabled at the meeting agreed and ratified by the Board. With regard to HbA1c values, amend units from values from % to mmol/mol. Clarify % cut off points for red, amber and green scores. Director s Report There was a discussion on the apparent plateau in the number of DAFNE services and courses delivered. GT explained rapid increase in centres due mainly to Novo Nordisk provided pump priming funds to train an additional 30 centres. Only 6 centres have stopped delivering DAFNE. However service reorganisation has resulted in the merging of a number of DAFNE centres which is responsible for the apparent plateau in numbers - we are still training 1-2 new centres per year. Course statistics are retrieved from the DAFNE Database and accuracy is dependant on centres entering course dates and patient baseline data. Created on 18/02/ :44:00 4 of 10

5 The Educator Group Chair secondment is due to end 2 November 2013 and currently none of the active Educator Group members are in a position to take on this secondment. GT sought agreement from the Executive Board to advertise the seconded role to all DAFNE Educators as a 0.5 wte. Decision: Board agreed to advertise the role as a secondment to all DAFNE Educators. If the role is not filled the subject will be added to the next Executive Board meeting agenda. Educator Chair s Report At their last meeting, the Educator Group had written the learning outcomes and facilitator guidelines for the Collaborative workshops. Based on this a discussion on the plenaries and workshops took place. Aiming Higher Workshop This will now focus on data ascertainment rather than HbA1 c. CT agreed to deliver the Aiming Higher workshop with HH. DH and AB with deliver the other. Follow-up Workshop Peter Rogers had been tasked with asking Mike Patterson and Rob McKnight (DUAG) whether either of them can facilitate the Follow-up workshop. IMacL to check whether this has been done. Action: IMacL to check with MP/RMcK whether they are able to facilitate a Follow-up workshop and report back to SW by 1 March Timings and content of the plenaries of the Collaborative programme were agreed by the Board: 09:40 Plenary 1: Research and Data (time reduced to 30 minutes) Quality assurance changed to Data ascertainment (DH) (10 min) Centre comparisons (ME) unchanged (10 min) Basal insulin choice and pump transfers changed to Hypoglycaemia and DKA (JE)(10 min) 10:20 Plenary 2: DAFNE HART (40 minutes total) Outcomes of DAFNE HART (HR) - unchanged Patient experience changed to Significant others experiences (JL or DR) Psychological methods in diabetes care changed to Psychological methods used in HART (Nicole DeZoysa, King s) 15:05 Plenary 3: Research (40 minutes total) 5 x 1 outcomes (JE) Future directions in DAFNE research (SH) Basal insulin (HH) choice and pump transfers (DH/PM) moved from Plenary 1 Action: Sharon Walker to confirm with JE the requirements of her plenaries. If they agree to deliver, Julia Lawton, David Rankin, Helen Rogers and Nicole DeZoysa to liaise with each other to decide the best way to use the time allocated (now increased to 40 minutes total). Action: Sharon Walker to provide HH with contact details for JL/DR/HR/NDeZ Action: HH to contact JL/DR/HR/NDeZ to have a discussion on Plenary 2 subject. Created on 18/02/ :44:00 5 of 10

6 Research Chair s Report The NIHR programme has been granted a no cost extension until end of May The 50,000 word final report to the NIHR is currently being written.. Work continues on an application of a further grant application, although this may not be sufficiently advanced to submit the expression of interest by March The themes will be: Education developing the curriculum, trying to work out and standardise follow up not only one model, trying to develop several models. To think more about technology and diabetes management, in particular bolus calculators, electronic downloads. Database Chair s Report Full research funding ended in October research centres are happy to continue collecting full data set, 2 probably not and 1 is uncertain. There is an opportunity for centres to apply for CLRN funding. Research Database Centres are now only collecting EQ-5D and Biomedical questionnaires. As of November 2012, 1,940 patients have been recruited onto the Research Database. There have been many requests for data dumps for analysis. There are interesting abstracts from the database coming out on big reductions of severe hypoglycaemia and DKA. Health Economics finally getting papers together, they are developing a new Type 1 model. Hopefully the paper will be published within the next year. We are hoping to continue with the database in the next grant application, using same biomedical data and include the new self management questionnaire, perhaps using patient collected information and additional data collection when complications and pregnancies occur as it is difficult to collect this data retrospectively. DUAG Chair s Report DUAG wrote to the Health Secretary and had received a non-specific response no mention of education at all. A reply is to be written. HH requested that DUAG share their reply with Executive Board. e-petition around 2,000 signatures to date. A letter has been sent to Diabetes UK to ask if they could advertise and support the e-petition. SON said he is working with DUK social media team to get this onto their website and hopes this will change next week. HH suggested it might be worth emphasising that the e-petition is for generic diabetes structured education. IMacL said DUAG will continue with the e-petition and hopefully by May we should have more progress. DAFNE Organisational Structure update Julie Reed joined the meeting to discuss DAFNE organisational structure options as tabled in report 8a. Created on 18/02/ :44:00 6 of 10

7 Since the last meeting legal advice had been sought and in December 2012 HH had a telephone conversation with Jim Mackey. The consensus of this was for DAFNE to separate from NHCFT by mutual agreement. JR reminded the Board of the separation options: Option 1 be hosted by another NHS Trust or organisation. DAFNE would be responsible for organising this, but NHCT legal team would be involved in transfer arrangements. Option 2 incorporate into a private company limited by guarantee. Option 3 become a charitable company limited by guarantee. JR asked the DAFNE Executive Board to consider which direction they might want to go in as Jim Mackey would like a decision by the end of March with the view to making one of the options happen by the end of June HH said we are aware of the pressure from NHCFT to move this forward. We are uncomfortable with the idea of separating from the NHS as required for options 2 and 3. DAFNE is unequivocally an NHS organisation. We accept that separation from NHCFT is one of their organisational objectives. HH had previously written asking for support from NHCFT Chief Executive Team in pursuing national level negotiation on behalf of DAFNE and made a further formal request to JR that this request be actioned. JR stated that NHCFT were not sure who to contact so they had done nothing about this. HH agreed to forward names and addresses for relevant contacts. HH agreed that the reorganisation within the NHS has made it difficult to identify the right people to speak to, but HH has proactively made contact with key people in the new structure for diabetes and commissioning within the NHS nationally, and if the same people were being contacted by NHCFT with the same aims in mind it would be very beneficial. It would be helpful if DAFNE could be supported by their current host. Action: JR to take this back to Jim Mackey. Action: HH to share names and contact details to JM and JR. ME asked how would another NHS organisation work given the geography of the staff. GJ explained there were precedents within the NHS for remote hosting. From a DAFNE perspective we would need to maintain a central office and even if we move off NHCFT premises we can still cost for the running of the office. JR - NHCFT are willing to rent office space to DAFNE. HH - the staff maintain the NHS employment status, salary scale and pensions etc. That is our preferred option. JR NHCFT had successfully received Direction Body Status for a recently formed Estates Company, enabling staff to remain in the NHS pension scheme. HH asked what NHCFT s plan B was if the application for Estates had failed? JR one person was willing to resign and take up a post in the new company and then they would have to employ people direct, and they would not have NHS pension. HH members of the DAFNE Board are here to run a clinical service within the NHS, not a business or a charity. The Board is not prepared to take any risk with the employment status of the office staff, however small. JR - what about other NHS trusts hosting DAFNE? Exploratory talks are about to commence with Sheffield Teaching Hospitals NHS Foundation Trust. This would be seen as a short to medium term plan, with the longer term plan still to be funded centrally. Created on 18/02/ :44:00 7 of 10

8 ME asked if the timeframe of end of June for separation to be complete was aspirational. JR yes this is the preferred timescale, this is not legal. HH the hosting fees have been very beneficial up until now, since this discussion has arisen, hosting fees increased 124% and there is an expectation that the fees are likely to rise again. GT has looked at costs of new office space and based on assumptions and estimates we could get larger office space at a reduced costs compared to that currently paid for the portacabin and hosting fees to NHCFT. However, DAFNE in its own right cannot take out a lease as not a legal entity. GT asked JR if in the short term would NHCFT be prepared to take out a lease for us to move out until such times as we parted company? JR - we would need to look at this. Action: JR to look into the possibility of NHCFT taking out a building lease on behalf of DAFNE. GT if we could get Jim Mackey to support us as HH has set forward, this would be a starting point to further our cause. In the meanwhile we will look at a short/medium term plan with another Trust. Now we know the position we are keen to move forward as the uncertainty is not beneficial for Central DAFNE staff. GT asked JR to clarify if there were any legal issues in terms of signed 3-year SLAs between services and NHCFT for the provision of the DAFNE if we separate. JR - if moved to another NHS Trust we would write to services informing them that the contract is migrating across. HH therefore there might be a bit of work for the NHCFT legal team to do liaising with the legal team of the new Trust? JR yes. JR left the meeting. GJ suggested as an alternative to Sheffield it may be worth approaching the old SHA area team as they are setting up new bodies under the NCB, they may be potential hosts.. Action: GJ to attempt to provide names for the new local body. HH explained how she has successfully managed to make contact with Scottish Parliament and has been invited, along with a DAFNE Graduate to present to the Cross Party Group for Diabetes on 19 February. The aim of the presentation is to put the case for DAFNE to be centrally funded in Scotland. If successful this would provide a model to further our cause with the UK Government. ME is there any reason therefore why a hosting organisation cannot be in Scotland? HH will aim to make enquiries. Action: HH to enquire about remote hosting of DAFNE in Scotland Ratification of Audit issues Position regarding Drs observing dose adjustment / Audit Form E A discussion took place on doctors observing dose adjustment to maintain their DAFNE doctor status and completing Audit Form E. GT informed the Board that two thirds of centres audited in 2012 had scored green for this. HH we need to stand ground and recommended that the Board agree to continue to include Audit Form E in audits. We can review progress in Decision: Board agreed Created on 18/02/ :44:00 8 of 10

9 Policy regarding centres not meeting audit standards The Board had been issued with a copy of the DAFNE Policy Supporting Centres Following Audit prior to the meeting (Paper 9b). HH requested the first sentence, last paragraph on page 3 be reworded to read If following the re-audit, standards remain unacceptable at the centre, the DAFNE programme status may temporarily be removed which gives more of a supportive flavour than simply withdrawing status permanently. Action: GT to amend the Policy. Decision: Board approved policy subject to the amendment as highlighted above. Based on auditor feedback, a discussion was held on the importance of the pre-course assessment being performed by a DAFNE HCP, and the importance of relevant changes to insulin type and dose pre course. CT this should be reviewed as part of DEP peer review and external audit. The Board agreed. Decision: To introduce a new scored domain into the external audit in terms of evidence of adequate pre course assessment and changes to pre course insulin as per DAFNE guidance and for this to be also reviewed during DEP Peer Review.. Action: CT and HH to write audit criteria for pre course assessment and insulin change, and guidelines for Central DAFNE on what the auditor will require in terms of evidence on the day of audit. Action: Sue Moore to develop Auditor questionnaire and possible Core data collection form to record evidence for audit. Action: CT and SW to develop documentation to capture evidence during DEP Peer Review Action: CT to inform Auditors and DEP Peer Reviewers of the need to review pre course insulin changes as part of audit and DEP Peer Review and how to do this No of 5-day courses to deliver before conversion to 5 week course HH informed the Board there had been a debate on whether you had to be an experienced Educator to attend the 5 week conversion workshop. It has now been agreed you can train as a DAFNE Educator, deliver your first course over one week (which will be externally peer reviewed), then attend the 5x1conversion training workshop. This will allow educators on part-time contracts to become DAFNE trained with least possible disruption to their normal working pattern. Leicester Foundation Programme GT informed the Board that Leicester has asked whether the national programme would be prepared to take the foundation programme under the DAFNE umbrella, as they do not have resource to develop and maintain this. The Leicester team are happy for it to be badged as DAFNE but have requested some written recognition of the origins of the programme. The Board discussed the possibility of this being badged as DAFNE as opposed to making this freely available without ensuring it met the key criteria for a structured education programme. It was decided that further considerations need to be given to the implications for each option and that there was insufficient information available from the Leicester team with regard to the work they felt still needed to be done. A decision would be deferred to the May 2013 Board meeting to which Sarah Phillips, Leicester would be invited to provide further detail. Action: SW to invite SP to attend the next Board meeting in Peterborough on 22 May to aid discussion. Created on 18/02/ :44:00 9 of 10

10 Any Other Business The Board s Terms of Reference are due to be revisited which can be done electronically. The Board is currently quorate if 6 members of the Board are present, one of which must be the Chair. Action: GT to ToR to the Board for their comments. IDF 2013 Melbourne - AB has accepted an invitation to present The new developments from the DAFNE programme at the conference. OzDAFNE are planning to exhibit and are keen to have an international theme. Perhaps Anita, and anyone attending the conference, could support the OzDAFNE team by giving some presence on the exhibition stand? Date and Venue of Next Meeting Next meeting title/no Time Date Venue Chair Business Meeting 2/13 10:30 15:30 Wed 22/05/13 North Tyneside* Dr Helen Hopkinson Strategic Meeting 1/13 10:30 16:00 Thurs 19/09/13 North Tyneside* Dr Helen Hopkinson Business Meeting 3/13 09:00 15:00 Fri 20/09/13 North Tyneside* Dr Helen Hopkinson * Tynemouth Blind Welfare, Peary House, Preston Park, North Shields NE29 9JR Created on 18/02/ :44:00 10 of 10