SUPPORTIVE, PALLIATIVE & END OF LIFE CARE CORE GROUP 1pm 3pm on Tuesday 4 October 2016 Evolve Business Centre, Houghton-le-Spring

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1 SUPPORTIVE, PALLIATIVE & END OF LIFE CARE CORE GROUP 1pm 3pm on Tuesday 4 October 2016 Evolve Business Centre, Houghton-le-Spring Present: Nousha Ali, South Tyneside CCG NA Jane Bentley, North Tees & Hartlepool NHS FT JB Alison Featherstone, Northern England Strategic Clinical Networks AF Simon Gordon, St Oswalds Hospice SG Eleanor Grogan, Northumbria Healthcare NHS FT EG Florence Gunn, Sunderland CCG FG Kath Henderson, South Tyneside FT KH Mark Lee, St Benedicts, Sunderland ML Michelle Muir, Newcastle upon Tyne Hospitals NHS FT MM Alex Nicholson, South Tees NHS FT AN Dawn Orr, Gateshead Health NHS FT DO David Oxenham, County Durham & Darlington NHS FT DOx Ann Paxton, South Tyneside NHS FT AP Chris Walker, Northern England Strategic Clinical Networks CW Paul Whittingham, Hartlepool and Stockton CCG Pw In Attendance: Naomi Tinnion, Northern England SCN NT Apologies: Jayne Denney JD Dan Haworth, NEAS DH James Ellam, St Oswalds Hospice JE Maureen Evans, Northumbria Healthcare NHS FT ME Keith Kocinski, North Yorkshire & Humber Commissioning Support Unit KK Yifan Liang, South Tees NHS FT YL Adrienne Moffett, Northern England Strategic Clinical Networks AM Lucy Nicholson, South Tees NHS FT LN Jill Smith, HENE JS Kay Smith, Hambleton, Richmondshire & Whitby CCG KS Ruth Ting, Gateshead Health NHS FT RT 1. INTRODUCTION M I N U T E S 1.1 Welcome & Apologies KM welcomed everyone to the meeting and introductions were made around the table. The above apologies were noted. 1.2 Declarations of Interest There were none to declare. 1.3 Minutes of previous meeting 5 July 2016 These were agreed to be an accurate reflection of the meeting. 1

2 1.4 Action Points from previous meeting Covered by today s agenda. 2. AGENDA ITEMS 2.1 EPaCCS Update ML explained that EPaCCS is an umbrella term for provider electronic records systems to talk in real time to one another across the region. There is a detailed list of requirements of what is required for EPaCCs to reach Gold Standard which ML will share with the Group. Agreements will be put into place to allow data sharing across systems. A procurement exercise will need to be undertaken (set up costs, maintenance etc) and a bid has been made for funding to help look at procurement options to ensure the correct system is put in place. KM advised that there are several large workstreams working together to move this forward including the Great North Digital Record. The Network EPaCCS Group led by Kathryn Hall - has begun its work on this by looking at the patient pathway and then deciding what should be put in place around it. The minutes of their last meeting are attached for information. Mins of EPaCCS Gp 2.2 Terms of Reference KM advised that one of the requirements of the Terms of Reference is that all members represent a locality group so that they can cascade information and canvas opinion ahead of meetings so that a regional view can be brought to meetings to aid discussions. She asked if this was working. Comments included: Some locality group meetings do take place but getting people to attend can be an issue mainly because of work pressures. Some groups have also been affected by the loss of key staff. Consistency in attendance at meetings is essential to ensure there is good feedback both ways and that organisational memory is not lost. Information is sometimes not cascaded back to this Network Group. South of Tyne have struggled to get a locality group set up. It has met once but as the South Tyneside Trust provide most of the services it is difficult to get a variety of people to attend. It would be good to have OOH providers and the Ambulance Service involved in locality group meetings but again this is very difficult because of work pressures. Attendance at this Group also needs to be consistent to ensure meeting memory is not lost. KM reminded the Group of its agreement that each locality has a nominated representative and a deputy and that at least one attends these meetings. As it needs to be clear who the nominated representatives are from each locality KM agreed to circulate a grid showing the current representation around the Group for members to update/amend as appropriate and return to her at kathrynmannix@btinternet.com. The next step in developing the membership of the 2 Reps Grid to be discusse d at all locality Groups

3 Group, which currently is largely clinicians, is to identify any gaps in representation (e.g. Commissioners, AHPs, etc) and ask locality groups to nominate reps to fill these gaps. This will be discussed at our Winter meeting (Jan 2017) 2.3 Urgent and Emergency Care Vanguard including Deciding right KM advised that NHS England are struggling to provide funding to Networks for End of Life Care. As some EoLC Networks have been integrated with their regional Urgency and Emergency Care (U&EC) Networks, KM met with Bas Sen to discuss if this is an option for this region. Our U&EC Vanguard is interested in moving forward some of our workstreams and has asked for information and costings to be provided. We are exploring the possibility of them funding our Network leadership: a clinical specialist plus a generalist lead and admin support for one day per week with additional funding for one day per week for EPaCCS work. KM will keep the Group updated on the outcome of these discussions. KM AF advised that the Vanguard is looking to have a clinical hub in place, in which access to palliative and end of life care advice would sit. The Group was told that, if the U&EC Vanguard agrees to fund the Group s leadership, there will need to be a discussion about whether the Group continues to sit within the Clinical Networks (advantages: links to LTCs Networks, organisational memory) or moves to sit in the separate U&EC Network. 2.4 Palliative Care Guidelines release KM confirmed that these had now been circulated and uploaded onto the NESCN website, the link to which can be found here 2.5 Work plan development KM advised that NHS England had set national priorities and key targets for Networks to work to and meet. The workplan for the Group has therefore been adapted to meet these and it is likely that a Network event will be held in Spring 2017 around Commissioning of palliative and EoL Care. Transform programme: Bee Wee and the national team are visiting the region on 9 December and the Network have been asked to set up an event as part of this visit. The event will be used to showcase success stories including: Advance Care Planning (Deciding right) including case studies, DNACPR forms and roll out of the national forms Deciding right training resources and their roll out; EPaCCS, as the region is ahead of some areas on this Regional National Roadshow Dec 9 th : cascade info in Localities via locality groups Booking info to follow AN suggested that the South Tees physiological observations system would be good to showcase at the event as to date they had been able to visit EoL patients without referral which had resulted in 400 extra patients being seen over the last year, the majority of whom were non-cancer. It was agreed that it would be good to showcase this at the December event. 3

4 KM asked for details of any other success stories for inclusion in the December event to be sent to her (a couple of paragraphs will suffice as a starting point). ALL 2.6 Network Data Collection Death in usual place of residence KM explained that this data is now in the public domain and that the latest data available is for 2014/15. This showed that the national average is 44.5%. The yearon-year improvement in North Tyneside, which reached 60% in 2015, was attributed to the work done to simplify the EoL Care data set and encourage GP participation by Kathryn Hall. It was agreed that death in the usual place of residence should be included in SP&EoLC Group agenda to inform CCGs about how their area is performing. A piece of work may be needed around which deaths in care homes are truly in usual place of residence, as this affects figures substantially. Consideration is therefore being given as to whether the words new place of residence should be added. Hospital data comparison The Group agreed that it would be good to compare and contrast Hospital data about EoL care, by sharing their National Audit data (to avoid duplication of effort). This will allow us to identify areas of good practice and to learn from each other. Audit Group It was agreed that an Audit Group be set up with a request for volunteers to take this forward sent around the Group. 2.7 Network update KM advised that Louise Watson had been appointed to the new Band 7 one day a week end of life post. The Group agreed that she be approached to set up the Data Audit Group mentioned above and take the lead on the audit of regional data. New SP&EoLC facilitator to gather data from hospitals Locality Groups please nominate KM/AM 2.8 Locality updates AP advised that Sunderland have secured the Gold Standard Framework for care homes which may eventually be used as a tool across the region although a GSF fee would still be payable by other Trusts. Enhanced Supportive Care: nationally some cancer centres have this in place as a CQUIN for one, two or three years. This will be tested to see if replicable across the country. JB advised that Mel McEvoy had created a letter for patients explaining the Palliative Care Register and what this means for them. It is currently out for consultation with GPs and patients and so far there has been a positive response. The intention is that this will not replace the initial conversation with a patient but will reinforce it to let patients know about advance care planning. It can also be used as evidence that a conversation has taken place. It was agreed that JB would approach Mel McEvoy to ask if he would be happy to showcase this at the December event. JB 4

5 3. REGULATORY 3.1 Clinical Governance Issues It was agreed that, now that the 2016 Palliative Care Guidelines had been rolled out, any previous versions should be destroyed. 3.2 Any Other Business DO advised that for the past nine months she had been seconded to NEAS for one day per week. During this time she found that NEAS staff had concerns around asking about DNACPR forms and asking if a patient is dying as they found this terminology difficult to deal with. Education packages have therefore been put in place to address this issue and call operators will be the first to be trained. The terminology used by NEAS has also been difficult to deal with at times 999 calls are answered by all staff who go through a series of computerised questions (called pathways) and then passed to a clinician if around palliative care. However, all 111 calls are automatically directed to a clinician. She is working with NEAS to determine whether a standardised system can be implemented for all calls. As the special patient note flagging had become an issue she has agreed with NEAS that the old forms can be used addresses MUST be used for sending these forms. The end of life care ambulance provision is working well: they are manned by St Johns Ambulance staff, and training has been put in place for their crews around the transfer of patients at the end of their life. DO asked for any ambulance incidents to be flagged with her at dawn.orr@ghnt.nhs.uk as she has been asked to monitor these on behalf of NEAS. KM advised that by March 2017 she will have been in her Clinical Lead role for two years and will therefore be standing down. The Group therefore needs to elect a Deputy Chair to do some shadow work before KM hands over in April She asked those around the table to take this back to their locality group and ask anyone interested in this role to make contact with her at kathrynmannix@btinternet.com She emphasised that this role doesn t necessarily need to be undertaken by doctor. ALL Express ions of interest to chair the Group: please contact KM. Locality Groups please publicise. 3.3 Date of next meeting on 9 December 2016, Roadshow Event, Ramside Hall Hotel. Booking Information to follow 1pm 3pm on 17 January March 2017: Spring Networking event (tbc) 4. MEETING CLOSE 5

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