SCALING up SHARED Haemodialysis CARE

PROGRAMME BOARD - MINUTES SCALING UP SHARED Haemodialysis CARE

Date: Tuesday 10th January 2017 Location: Renal Library, Sorby OPD, E Floor Time: 13:30PM – 16:30PM

Attendees : Apologies:

Megan Biggins (Minutes) Angela Lumsdon Sonia Lee (Chair) Sandip Mitra Paul Laboi (Dial In) Martin Wilkie Retha Steenkamp (Dial In) Louese Dunn Suzie Bailey Michael Nation Steven Ariss Tania Barnes Nicola Heron Paul Harriman Andy Henwood

Item Comment Action 1 Welcome and Apologies: Sonia welcomed all attendees to the meeting. Nicola Heron introduced herself as this was Nicola’s first Programme Board. All other attendees introduced themselves to Nicola. 2 Minutes & Actions of previous meeting: Agreed an accurate account. See table at end See table at end of minutes for actions carried forward. of minutes. 3 Key Programme Notices inc Financial Position: Our Financial Position remains green. . Nicola from D4D said they are happy to provide support obtaining training accreditation for the SHARED CARE Course as requested by the BPKA Grant if required.

The SHAREHD recruitment period closed on Friday 6th January 2017. The total number of recruits across all 12 participating sites was 583. 6 out of the 12 participating sites reached their target of 50. Manchester was the first participating site to reach their target and had done so by the 9th of November 2016. Megan will MB send an email out separate to the minutes informing the team of this news. PMN – HRA informed that accrual can continue till end Jan. LD will advise wave B sites in an attempt to continue recruitment to achieve the 600 target.

4 Workstream Progress:

a) Learning Events – Paul Harriman In today’s Programme Board we specifically focussed on the first

P a g e | 1 of 7 Learning Event coming up on Wednesday 18th January 2017. Tania explained that the main objectives were Team Building, and Where is everyone at re Quality Improvement learning. Each SL topic on the Learning Event agenda was discussed. Complete

There will be a signing in sheet for the Learning Event. It was suggested that all teams are asked at this point if they are happy to have their photographs taken throughout the Learning Event. Sonia will add this to the signing in sheet.

One of the first topics on the Learning Event agenda is Initial SL/PH Team Share. The teams are given 5 minutes to think about where (closed) they are from, who is in their team, how long they have being doing Shared Care, what they are most proud of in Shared Care and what their next goal is. They will then be asked to share their thoughts with everyone. Paul felt 5 minutes was too long. – it is now reduced to 4.

The side “Programme Background – Why Are We Here?” was discussed. Tania gave an explanation as to why the picture on this slide was relevant. Nicola thought that Tania’s explanation was far more exciting than the message the picture portrays. SL Nicola suggested that it might be worth while changing the title (Complete – 2nd to “Who’s teaching who?” to ensure that the teams at the photo included in Learning Event understand the message we are trying to give deck) out. At first glance (to Nicola) it looked like the Nurse is teaching the patient and doesn’t quite emphasise that the patient could actually be teaching the Nurse. Sonia will discuss this with Martin.

Some of the Topics scheduled for the Learning Event are around QI. The aim is for the teams to gain experience of QI processes. A framework will be provided at the Learning Event, however PH teams are expected to take their learning back to their trust and create a structure which will work for them. Suzie suggested that all teams are made aware that they won’t be expected to create the “perfect Process Map” for example at the end of this, as SL some sites are really nervous about QI. (Complete – added to Action: Ensure one member from each team is responsible for washup) bringing any work they have done after today’s Learning Event to future workshops. This may be worth adding to one of the Learning Event Slide Decks? TB/SL After lunch, the topic is The Power Of Networking and is around (Closed) what conversations teams have had over lunch. Nicola suggested conversation examples should be given, and the wording on both on the lunch slide and networking slide be changed.

b) Evaluation –Steve Ariss The Evaluation Team are still waiting for their Letters Of Access

P a g e | 2 of 7 and Research Passports in order to begin the Patient Interviews.

The job advert for a Health Economist has now closed and there have been 5 applications. The Evaluation Team are shortlisting for the interviews this week. This is a part-time position.

Steve thanked everyone for their WhatsApp contributions and he thinks it is working really well. Andy suggested one question per day on their instead of all the questions at once as when the questions are sent all at once it can get a little bit too much. Tania suggested that the questions could also be more specific. Sonia explained the purpose of the WhatsApp group to Nicola and Suzie as they were not aware of this. Nicola thought it was a really good idea.

c) Patient Advisory – Andy Henwood Geoff Chambers has agreed with Nottingham that he will join their team as their patient member for the Learning Events.

Andy continues to search to increase the pool of patients to join the Patient Advisory Team and help support the programme. He is hoping to recruit patients attending the Learning Event SL however he wants to contact them about this prior to the Closed – sent Learning Event if possible. Sonia will send Andy any contact where available details he hasn’t already got for any of the patients attending the Learning Event.

d) Spread & Sustainability – Paul Laboi Paul discussed the SHAREHD Website Comms & Sustainability Plan which was issued as pre-reading. Sonia and Paul agreed the SL need to discuss Sustainability with Martin and Steve Ariss and will arrange to meet outside of the Programme Board regarding this.

Sonia has put together a plan covering “Spread, Sustainability Dissemination and associated Comms”. The thoughts from the Advisory and Dissemination group are included in this document SL along with the Spread and sustainability plans form the previous closing the gap programme. This will be issued for information / comment.

Tim Hunt is to be available to contact on a Thursday between 1- SL 2PM. Sonia thinks it would be better to arrange a Teleconference (Closed) with Tim at this time every week which everyone can dial into if they wish rather than everyone trying to contact him at the same time and not being able to. Sonia will send Tim the Conference Call details and suggest he sets this up as a re-occurring meeting.

e) Communications The SHAREHD Newsletter was issued just before Christmas. Thanks you to all who contributed to this publication. – next

P a g e | 3 of 7 newsletter due End MARCH

The merchandise has now being produced and is available for the first Learning Event. There are pens with the SHAREHD logo on and Pop-up Banners available for the 6 teams attending on the 18th January. 2 of these banners have been personalised.

The SHAREHD team have now started to think about conferences they should attend. One of these will be the BRS Conference in Nottingham in April.

It is UK Kidney Week in June and an abstract has been prepared AL for this. Angela Lumsden will work with authors to confirm Submission wording in readiness for submission by 13/1/17. submitted

Manchester has recently produced a Comms story. We should SL share this with all the other sites and encourage them to do the same.

f) General Observations Discussions around our 3 Key messages suggestions were displayed during the Programme Board. We need to confirm our SL key message s and not waver from these to maintain the consistency through the programme. But also to ensure that the messages are the same when we walk out of the room? Looking to confirm the messages are consistent at the learning events. 5 Plans, Risks and Lessons: A) RAID –Key Risks The RAID log and the Lessons Learnt log were sent out pre meeting papers

Nicola feels that a big Key Risk is sustaining the programme when the funding has ended.

Retha needs a list of the patients who are in Cohort 1 and have consented to SHAREHD. Megan will liaise with Sonia in regard to this. Retha will email Megan about this in more detail. MB/SL/RS

B) Lessons Learnt – the following were discussed and will added to the log

Baxter has written a book about Shared Care. What they are saying about Shared Care doesn’t quite fit with what we are trying to say. Lesson is that the approach is actually subtle and is easily mis-represented. Actions to resolve includes writing more articles and clear dissemination.

Megan (as recruiter for Sheffield) has learned a lot whilst consenting to SHAREHD. The best experience was witnessing more than one patient self dialyse. It was inspiring to watch. The worst experience was hearing one patient’s negative

P a g e | 4 of 7 thoughts and feelings about Shared Care. At this time the patient was being put onto Dialysis and the Nurse putting them onto Dialysis never once countered the negative arguments. At the time Megan was worried that this reflected the Nurse’s thoughts and feelings towards Shared Care. This proved not to be the case when it was further discussed but does show the issues encountered on busy HD units.

There were discussions around the recruitment process and the reasons why some patients did not want to participate in SHAREHD. The reasons for this seemed to depend solely on the Questionnaires. Tania questioned whether we had noticed that the lower recruitment figures were from sites participating in TP- CKD as well as SHAREHD. But when we looked into this, it seemed not to be the case.

C) Upcoming Events / 3 Months Milestones The first Learning Event on Wednesday 18th January 2017. 6 AOB Shared Care should be introduced in Pre-Dialysis workshops. 7 Summary – agreed Key messages A) Date of next meeting Monday 20th February 2017 : 14:00 – 17:00 Renal Library – Sheffield SORBY

PREVIOUS ACTIONS

Meeting date/Section Action Status 2/9/16 – 3.3.2 SL to setup contact log for A&DB purposes Ongoing 2/9/16 – 4 a SL to discuss with Tim Hunt re getting up to date Partial – photos satisfactory photographs for initial comms – further photos to be taken to provide new ‘pool’. 29/11 - ongoing 2/9/16 – 5 MN - to provide KRUK actuals invoicing to date Ongoing – invoice required. 29/11 – ongoing 10/1 – Received - CLOSED 21/10/16 – 4b Logic model feedback is requested from ALL– weekly 10/1 - ongoing themes to be advised on WHATSAPP by SA 21/10/16 – 4d PL/SL to progress website risk for funding and speed 10/1 – paper submitted for of turnaround discussion CLOSED 21/10/16 – 6 All to provide additional risks and Lessons learnt Ongoing 21/10/16 – 7 Minutes of programme boards to be added to the website. 29/11/16 - 3 Response to the Health Foundation report feedback In progress SA to send draft still needs to be progressed by SA with input form response to SL/MW SL/MW 29/11/16 – 4b Staff interview approach Ethic committee approval Submitted awaiting final required from Sheffield University = Action SA agreement 29/11/16 - 4b An additional Evaluation Board member was being SA to chase MN

P a g e | 5 of 7 considered by MN – SA to chase to understand who that may be to try and get them onto the committee 29/11/16 – 4b The Business Case needs to be considered at the Green book issued to next EAG Action SA/PL PL/MW/SL for consideration

Date Event Name Where Status Martin/Tania invited to 26 - 28 April 2017 2017 BRS Conference Nottingham speak not to progress as need to Primary Care and Public focus on acute care 17th & 18th May 2017 Health Event NEC Birmingham inititially May? PD Research Day Sheffield reassess for 2018 UK Kidney Week 2017 19 - 21 June 2017 (RA/BTS) ACC, Liverpool Abstract submitted 13/1/17 Andy to investigate and Patient Information Forum King’s College London – potentially request Wednesday 5 July 2017 12th Annual Conference Strand Campus involvement EDTNA/ERCA International 9 - 12 September 2017 Conference Krakow, Poland 2017 Tania invited to speak 10th Annual UK Dialysis Expecting to be invited to Sepember conference Lowry Hotel, Manchester present National Kidney Federation Andy to investigate and (NKF) Conference (theme: Hinkley Island Hotel, potentially request 13-15th October Kidney Patients UK) leicestershire involvement November NHS Self Care Week National November EDTNA UK seminar Ashford, Kent

CURRENT VIEW OF CONFERENCE ABSTRACTS AND PRESENTATAIONS

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