Progress report from Patient Reference Groups

25th May 2017

Key Messages

This report conveys the key messages for the joint meeting of the Governing Bodies arising from the following Patient Reference Group meetings:

Mid Nottinghamshire Patient Reference Group held on 24 April 2017

NHS Mansfield and Ashfield Citizens’ Reference Panel workshop held on 9 May 2017

NHS Newark and Sherwood Stakeholder Reference Group held on 9 May 2017

Mid-Nottinghamshire Patient Reference Group (MNPRG) on 24 April 2017 Members received a presentation on the GP Forward View and participated in a workshop during which they shared their views on the plan and informed the development of the associated communication and engagement plan. Key deliverables for the engagement will be two large scale public events during June and attendance at meetings of groups to engage with a much broader group of people and groups with protected characteristics. The engagement would also feature an online survey and ‘talking heads’ films created with Director/clinicians explaining the plans. Members also reviewed and commented on public facing information leaflets on:

Policy for procedures that are restricted or not routinely funded

Special case funding requests Consideration was given to a proposal to establish a task and finish workstream looking at self-care. This will be discussed further at the June meeting in the presence of the Director Lead for Self Care. Citizens Reference Panel (CRP) on 9 May 2017 As part of its on-going commitment to engage more widely with communities, the CRP hosted a workshop on memory loss and dementia diagnosis and care on 28 February 2017. The key messages arising from the workshop were:

Dementia is a condition that is so varied and is often a multi-faceted condition (physical and mental health, finance and social care issues) making access to services very complex.

Families are often not aware of the support they can get in the community. There are excellent services in the community for families and dementia sufferers which need to be promoted and supported financially.

There needs to be far more integration of the range of services available to families and patients so that it’s much easier to find out what support patients and families can receive. It is always very stressful, confusing and difficult to understand what is available, let alone initiate access to any help, support and further understanding of this condition.

Dealing with and suffering dementia can leave patients and families feeling alone when there seems to be so little understanding around them of the various forms of the condition and the problems they present.

Simple things in life which most of us take for granted can become complicated for dementia sufferers and their families leading to confusion and major problems for families.

The CCG should consider becoming an active member of the Mansfield and Ashfield Dementia Alliance that was launched on 15 May 2017 and facilitating Dementia

Friends training for its staff. Stakeholder Reference Group (SRG) on 9 May 2017 An extraordinary meeting of the Stakeholder Reference Group took place on 9 May 2017. The importance and potential value of the group within the governance structures of the CCG was reaffirmed and the group agreed options to develop the SRG that included:

Refreshing the membership so that it reflects the local community within Newark and Sherwood with an initial focus on providing a flexible way for Patient Participation Groups to be involved

Seeking further representation from community health interest groups and Newark and Sherwood CVS.

Development of a work plan that delivers key pieces of work

Membership to comply with the Code of Conduct.

Minutes of Meeting of NHS Mansfield and Ashfield Clinical Commissioning Group Citizens’ Reference Panel (CRP)

held on Tuesday 11 April 2017 from 5 30 pm to 7.30pm in the Miller Suite, Ashfield Health & Wellbeing Centre, Portland Street, Kirkby In Ashfield, Notts, NG17 7AE

Present: Peter Robinson, Health Forum (Chair) Julie McIntyre, Mansfield South PPGs Peter Green, Diabetes UK

Lesley Watkins, Mansfield CVS Sarah Taylor, Ashfield Voluntary Action John Childs, Mansfield North PPGs Val Brownley, Ashfield North PPGs Jean Lewis, Royal British Legion Elaine Moulton, Food Banks Jane Stubbings, Kings Mill Cancer Patient & Carer Group Gary Baird, Disability Nottinghamshire

In attendance: Helen Banton, Communities and Engagement Officer Attendees should note that the minutes of this meeting will be reviewed and discussed at NHS Mansfield and Ashfield CCG Public Governing Body meetings and will be available on the CCG website. Papers could also be released as part of a Freedom of Information request CRP/17/86 WELCOME AND INTRODUCTIONS Peter Robinson welcomed everyone to the meeting. CRP/17/99 APOLOGIES FOR ABSENCE Apologies for absence were received from:

Andrea Brown Cllr. Jim Aspinall Sarah Clark

Andrea Sharp Cllr. Sharon Adey

Dr Raian Sheikh John Stocks

CRP/17/100 DECLARATIONS OF INTEREST No declarations of interest were recorded. The register was available to members for updating. Conflicts of Interest

Peter Robinson reminded committee members of their obligation to declare any interest they may have on any issues arising at committee meetings which might conflict with the business of Mansfield & Ashfield Clinical Commissioning Group.

Declarations of interest from sub-committees None declared CRP/17/101 MINUTES OF LAST MEETING

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The minutes of the last meeting held on Tuesday 3 January 2016 were approved as an accurate record of the discussions that had taken place. CRP/17/102 MATTERS ARISING CRP/17/91 Support & Development Reviews Peter Robinson initiated a discussion of the Support & Development reviews that have been conducted over the past two years. It was suggested that they did not need to take place annually and therefore could be conducted every 18 months. Peter Robinson asked members to review last years’ plans and select 1 – 2 topics to discuss in more detail with Peter Robinson and Julie McIntyre when dates for discussions are agreed. ACTION: HB, PR and JMc to identify suitable dates for SDR meetings to take place. CRP/17/92 MAKING CRP NETWORKS MORE VISIBLE AND QUESTIONS FROM YOUR NETWORKS It was agreed by all members present that this topic would be discussed at the next networking event which will take place on the 9th May 2017. ACTION: HB to add making CRP networks more visible onto the agenda. CRP/17/103 FEEDBACK REPORT ON THE MEMORY/ DEMENTIA WORKSHOP Sarah Taylor and Lesley Watkins delivered a comprehensive report on the outcomes of the Memory Loss and Dementia Diagnosis and Care workshop which took place on Tuesday 28th February 2017. Sarah Taylor and Lesley Watkins were the leads for this event which took place at the All Saints Centre, Huthwaite and was attended by approximately 60 delegates. On arrival delegates were greeted with a trip down memory lane with the sounds and sights of the swinging 50’ss and 60’s. All members demonstrated their appreciation to John Childs for the fantastic display that he had created of film, music, products and adverts from years gone by. Feedback from recent events has shown that capturing peoples’ attention and interest had proven to be an effective way of creating a more memorable and interesting experience in which participants are more likely to engage. Mary O’Riordan delivered a brief presentation on the services available through the Alzheimer’s Society and the benefits to PPGs and Practice Staff of undertaking Dementia Friends Awareness training. Dr Andy Sommers, GP Mental Health Lead for the Mid-Nottinghamshire Clinical Commissioning Groups (CCGs) gave an in-depth and informative presentation on the accessible overview of Dementia, the local picture, diagnosis and treatment, prevention, emotional support and the CCG’s commissioning intentions. Mrs Chris Aspinall provided a moving and personal carers perspective of the daily practicalities of caring for and living with, a dementia patient. Mrs Aspinalls key message was to remind professionals and carers, that carers are often the expert and knew how to manage the person that they were caring for better than anyone else and this fact should not be overlooked. Members learnt that the marketplace had been facilitated by the following service providers: Alzheimers UK Cornwater Club Carers Trust Self Care Hub Our Centre

Participants also had the opportunity to learn all about reminiscence therapy which is delivered through Creative Pathways. The five week course is aimed at people who have been diagnosed with Dementia

Forget Me Not Dementia Support Group MIND Open Door Ashfield Voluntary Action Mansfield CVS

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or for carers. The course uses artefacts and photographs to stimulate activity, recall and conversation and aims to strengthen relationships and increase wellbeing for carers and the cared for. Attendees were also asked to record their opinion of dementia care and highlight and gaps in provision. The following questions were asked: What is your experience of dementia care? What has worked well? What could be done better? Are there any gaps in provision?

It was noted that, similar to that of the cancer workshop; it became apparent from support groups that patients and their carers felt that clinicians and the patients often couldn’t see past diagnosis and therefore the ‘There’s more to me than Dementia’ activity was also used to record peoples experiences. The evening was completed with a Question and Answer session that was hosted by an expert panel comprising of:

Dr Andy Sommers, GP Mental Health Lead for Mid –Nottinghamshire CCGs Fiona McCandless –Sugg, Dementia Nurse Specialist at Sherwood Forest Hospitals Trust Lynn Bennett, Memory Assessment Service Clinical Lead Angie Richardson, Alzheimer’s Society

The panel provided a broad range of responses to the multitude of questions asked. The overall feedback of the event was positive and it was suggested that subsequent events are delivered in the future on a smaller scale across the locality. Discussions took place on the opportunities to deliver these events within larger practices whereby the market place was the main feature and potentially some Dementia Awareness training could be delivered. All members present showed their gratitude to Sarah Taylor and Lesley Watkins for all of the effort that had gone into delivering this event. Members had been provided with a full report following the event which contained the list of questions asked, the main themes arising from these questions were: When visiting acute services why does every person / health worker need to ask the person’s

name, address and where they live? Dementia is not just an illness for older people and when people are physically fit this can cause

stigma and can be very difficult to cope with. What support can be given at the early stages?

Better communication between GP, social care and acute services is needed with a person centred plan from diagnosis. How can this be achieved?

Other areas have acute liaison teams for older people, is this something Notts should have?

Are there any support groups that are free / low cost for a day out per week to give carers a

chance for respite? ACTION: All members to select 4/5 issues from the collated list in the full report and send to PR and HB by 21st April 2017 prior to dissemination to Dr Sommers and for reporting to the CCG Board on 25th May.

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CRP/17/104 CRP WORKSTREAM OBJECTIVES Julie McIntyre informed members that the Workstream leads were currently reviewing the objectives to align with the overall CRP objectives. Members were provided with an overview of CRP01’s objective which is centred on Patient Engagement and Experience. John Childs continued to inform members that the CRP02 objectives focussed on developing the work of the Patient Participation Groups across Mansfield & Ashfield in ways that will assist them to become key to the workings of the primary care system. The vision is to stimulate the enthusiasm, skill, talents and diversity within the Patient Participation Groups in ways which make them highly valued organisations in the support and development of primary health care Those members present were informed that the objectives had not been finalised and therefore were still to be approved by the CRP Board. ACTION: JMc and JC to finalise the objectives with PR prior to seeking CRP Board approval. CRP/17/105 FEEDBACK FROM THE MID-NOTTINGHAMSHIRE PATIENT REFERENCE GROUP Peter Robinson tabled a report following the Mid-Nottinghamshire Patient Reference Group meeting which took place on 6 March 2017. It was noted that the following topics had been discussed:

• Review of the issues log whereby it was agreed that follow up actions need to be taken. • Joint meeting of the Governing Bodies from February and March 2017 • Work Plan which provided joint opportunities for the CRP and SRG to work cohesively • Key messages to the Governing Body on 8 March 2017

The content of the report was noted. Peter Robinson proceeded to inform members that Peter Green had taken the decision to reduce his workload and therefore had resigned from the Mid-Nottinghamshire Patient Reference Group. Although the group were disappointed to hear the news, they thanked Peter Green for his contributions to date. Peter Robinson continued to inform members that as a consequence, Jean Lewis would complete the vacancy on the group. The members were asked to email Peter Robinson with any questions that they may have. Peter Robinson also briefed members on the resignation of members of the Citizens Board and the Stakeholder Reference Group. It was noted that the Clinical Commissioning Groups were taking an appropriate course of action to resolve the situation.

ACTION: All members to email any questions relating to the Mid-Nottinghamshire Patient Reference Group to Peter Robinson directly.

CRP/17/107 MAKING A DIFFERENCE Following discussions around reports received following the Dementia Workshop, the CRP Members agreed to provide the Governing Body with the following messages:

• Dementia is a condition that is so varied and is often a multi-faceted condition (physical & mental health, Finance, social care issues) making access to services very complex.

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• Families are often not aware of the support they can get in the community. There are excellent services in the community for families and Dementia sufferers which need to be promoted and supported financially.

• There needs to be far more integration of the range of services available to families and patients so that it’s much easier to find out what support patients and families can receive. It is always very stressful, confusing and difficult to understand what is available, let alone initiate access to any help, support and further understanding of this awful condition.

• Dealing with and suffering Dementia can leave patients and families feeling alone when there seems to be so little understanding around them of the various forms of the condition and the problems they present.

• Simple things in life which most of us take for granted can become complicated for Dementia sufferers and their families leading to confusion and major problems for families.

ACTION: Peter Robinson to ask the Governing Body members for a response to the question and report back to the CRP at the next meeting. CRP/17/108 NHS MANSFIELD AND ASHFIELD CCG’S CHIEF OFFICER REPORT Copies of the NHS Mansfield and Ashfield CCG’s Chief Officer Report as presented to the CCG Governing Body on 16 February 2017 had been circulated to CRP members prior to the meeting. The report provided an update on the visit from NHS Englands’ Non – Executive Board members who visited to see the transforming health & social care first hand. There was also a focus on the financial position, Quarter three performance reviews and the Primary Care sustainability. The content of the report was noted. CRP/17/109 HEALTH AND WELLBEING BOARD SUMMARY Copies of the Health and Wellbeing Board Summary providing a summary of the meeting held on 4 January 2017 had been circulated to CRP members prior to the meeting. The report summarised discussion about the following:

• Update from Nottingham University Hospitals • Mental Health Crisis Care • Tackling Excess Weight

Additionally, copies of the Health and Wellbeing Board Summary of the meeting held on the 1 February 2017 had also been circulated to CRP members prior to the meeting and summarised discussion on the following:

• Adults Safeguarding Board • Building Family Resilience • Community Pharmacy • Chairs Report

The content of both of the reports was noted. CRP/17/110 DATE OF NEXT MEETING CRP members noted the following meetings:

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• CRP Planning and Networking Meeting, 9 May 2017, 5.30-7.30pm, Meeting Room 1, Hawthorn House, Mansfield, Notts, NG21 0HJ

• COPD Workshop, 5 July 2017, 2.00 – 4.00pm, The Towers, Botany Avenue, Mansfield, Notts

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Minutes of meeting of the Mid-Nottinghamshire Patient Reference Group (MNPRG)

held on Monday 24 April 2017 at Balderton Primary Care Centre. Present: Peter Robinson, Chair Marlene Ablewhite Gilly Hagen

Jean Lewis Julie McIntyre Sarah Taylor Officers in attendance: Julie Andrews, Communities and Engagement Manager Hazel Taylor, Senior Primary Care Performance and Development Manager

Attendees should note that the minutes of this meeting will be reviewed and discussed at the Joint Public Governing Body Meeting of NHS Mansfield and Ashfield

CCG and NHS Newark and Sherwood CCG and will be available on the CCGs’ websites. Papers could also be released as part of a Freedom of Information request.

Item No Agenda Item Actions MNPRG/17/39

WELCOME AND INTRODUCTIONS Peter Robinson extended a warm welcome to everyone in particular to Jean Lewis, a member of the Citizens’ Reference Panel representing the Royal British Legion and Hazel Taylor, Senior Primary Care Performance and Development Manager. The group were advised that Jean Lewis had filled the mid Nottinghamshire Patient Reference Group vacancy arising from Peter Green’s decision to reduce his commitments. Peter Robinson also advised of the recent resignations from the MNPRG of Geoff Tinker and Viv Hall both representatives of the Stakeholder Reference Group (SRG). It was noted that further representation would be sought from the SRG in due course. Members agreed that thanks should be formally recorded for the contribution Geoff Tinker and Viv Hall had made to the MNPRG during their period of membership.

Julie Andrews

MNPRG/1740 DECLARATION OF INTERESTS Peter Robinson reminded members of their obligation to declare any interest they may have on any issues arising at the meeting which might conflict with the business of either NHS Mansfield and Ashfield CCG or NHS Newark and

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Sherwood CCG. Peter Robinson circulated the declarations of interest register at the commencement of the meeting, and it was affirmed there were no conflicts of interest in relation to any of the agenda items for the meeting. Declarations of members of the mid Nottinghamshire Patient Reference Group are listed in the CCG’s Register of Interests. The Register is available via the following links: http://www.mansfieldandashfieldccg.nhs.uk/index.php/meet-the-board/declaration-of-interests http://www.newarkandsherwoodccg.nhs.uk/aboutus/our-governing-body

MNPRG/17/41 APOLOGIES FOR ABSENCE Apologies for absence had been received from Andrea Brown, Director of Programme Delivery.

MNPRG/17/42 MINUTES OF LAST MEETING The minutes of the last meeting held on 6 March 2017 were agreed as an accurate record of the discussion that took place.

MNPRG/17/43 MATTERS ARISING With regard to the action assigned to Geoff Tinker regarding Personal Health Budgets, it was confirmed that this would now be followed up by Peter Robinson.

a) MNPRG17/32 Review of Issues log An updated copy of the issues log had been circulated to members prior to the meeting. In the event that any issues are outstanding, these will be escalated to the Governing Body through the appropriate channels. It was noted that the bid for funding to support a programme of improvements of diabetes care had been unsuccessful and therefore a diabetes action plan would be progressed on the basis of no additional resources being available presently. Responses regarding EMAS and SFHFT handover arrangements, access to mental health services for young people, delivery of self-care in rural communities and withdrawal of the care homes nursing service would be escalated as no response had been received from the Directors concerned.

b) Statement of Intent Copies of Nottinghamshire County Council’s Statement of Intent had been circulated to members prior to the meeting. The Statement of Intent describes how co-production will be put into practice when planning, developing and reviewing services. Members were asked to consider whether or not the

Julie Andrews All

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principles should be adopted as a way of working within the CCGs and to feedback their views to Julie Andrews. Members referred to the recently published ‘Patient and Public Participation in Commissioning Health and Care’ that provides statutory guidance for CCGs and NHS England and suggested this be included as an agenda item for the next meeting.

c) MNPRG/17/33 Joint Meeting of CCGs Governing Bodies: 16 February 2017 Policy for Procedures or Services that are Restricted or Not Routinely Funded

Copies of an updated patient leaflet regarding the policy for procedures or services that are restricted or not routinely funded had been circulated to members prior to the meeting. Members provided further comments on the leaflet that would be forwarded to the author of the leaflet. Similarly, a patient leaflet on Special Case Funding Requests was reviewed and comments would be shared with its author. General observations related to the readability level of the leaflets and it was suggested improvements could be made to ensure it was as easy as possible to understand. The provision of printed copies of the leaflets was suggested to ensure information was accessible to patients who do not have access to the internet. Peter Robinson confirmed that he had received assurance that processes are in place to review GP and public feedback on the policy via the Clinical Senate, joint Prescribing Committee and the Quality and Risk Committee. Any change in policy required due to special cases, patient or GP comments would be presented to the Governing Body for approval.

d) PPG Development Due to pressure on time it was agreed an update would be circulated by email following the meeting.

Julie Andrews Julie Andrews Julie Andrews Julie Andrews

MNPRG/17/44 Mid Nottinghamshire Patient Reference Group Membership Update Julie Andrews reported that the resignations of Geoff Tinker, Viv Hall and Peter Green from the MNPRG had created two vacancies for the SRG and one vacancy for the CRP. The latter had been filled by Jean Lewis. The SRG vacancies would be reviewed with the group in due course. Marlene Ablewhite reminded members that the vision of the former SRG Chair had been to broaden the membership of the SRG to include community health interest groups and it was envisaged that this would continue to be progressed by the SRG.

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Hazel Taylor suggested consideration should be given to including the two Diabetes Patient Leaders within the SRG membership. It was suggested that any membership review should take into consideration any relevant implications of the recently published Patient and Public Participation in Commissioning Health and Care that provides statutory guidance for CCGs. An updated contact list for MNPRG members would be circulated.

Julie Andrews

MNPRG/17/45 GP Forward View: Hazel Taylor, Senior Primary Care Performance and Development Manager Hazel Taylor delivered a presentation on the GP Forward View that incorporated the national outline and local implementation. A copy of the presentation would be circulated with the minutes of the meeting. The GP Forward View includes more than eighty projects not all of which will be transacted through CCGs. Some may be transacted by NHS England working directly with practices. The projects form part of a four 4 year programme with funding allocated at different times. Local delivery is focusing on;

• patient navigation referred to as triage. Training is being provided to non-clinical staff to support this process

• GP Access – longer opening times 8am to 8 pm evenings and weekends but not at every practice due to funding and workforce issues

• GP resilience – support for practices that will not be particularly visible to patients

• Estates and Technology Transformation Fund (ETTF) will deliver improvements but funding had to be spent within the current financial year. The Arden’s system has been purchased and should bring about more equitable systems for patient pathways.

• Primary care transformation programme – hubs recommended for population of 50,000 in the refreshed GP Five Year Forward View.

Following the above presentation, members of the MNPRG participated in a mini workshop designed to inform the content of a Communications and Engagement Plan. Copies of the Communication and Engagement Plan will be circulated to MNPRG members for information.

Julie Andrews Julie Andrews

MNPRG/17/46 PROPOSAL FOR SELF CARE TASK & FINISH GROUP A proposal for the establishment of a Self- Care Task & Finish Group had been circulated prior to the meeting and was noted.

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During discussion, members highlighted the need to clearly identify the areas they could influence most of all and identify what could be the most effective output of a Task & Finish Group. In order to inform this area of work it was agreed that Dawn Atkinson, Director Lead for Self- Care would be invited to the meeting of the MNPRG that would take place on Monday 19 June 2017.

Julie Andrews

MNPRG/17/47 JOINT MEETING OF CCG’S GOVERNING BODIES: 8 MARCH 2017 Copies of the MNPRG Chairman’s report as presented to the joint meeting of the Governing Bodies on 8 March 2017 would be circulated with the minutes of the meeting.

Peter Robinson

MNPRG/17/48 JOINT MEETING OF GOVERNING BODIES: 27 APRIL 2017 a) PPI PROGRESS REPORT Copies of the PPI Progress Report that would be presented to the joint meeting of the CCGs Governing Bodies on 27 April 2017 had been circulated to members prior to the meeting and was noted. The report conveyed the key messages arising from the Patient Reference Groups as detailed below:

• Stakeholder Reference Group held on 28 February 2017 - Proposal to arrange a primary care workshop in

Newark and Sherwood - Informal coffee morning to be arranged to

engage PPGs

• Citizens’ Reference Panel Workshop held on 28 February 2017 - Outline of workshop on memory loss and

dementia diagnosis and care.

• Mid Nottinghamshire Patient Reference Group held on 6 March 2017 - Briefing on Restricted and Not Routinely Funded

Policies - Actions relating to the development of PPGs - Scoping of a Task & Finish Group on Self Care.

b) AGENDA A link to the Governing Body papers had been circulated to members prior to the meeting for information.

MNPRG/17/49 KEY MESSAGES TO NEXT JOINT MEETING OF GOVERNING BODIES ON 27 APRIL 2017 During the course of discussion MNPRG members agreed that the following would be highlighted at the next joint meeting of the Governing Bodies;

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• The need for a properly established SRG that embraced the community more widely.

• Public facing information should be more accessible in terms of language in order for it to be user friendly and informative.

• Request clarification about how the CCGs are embracing social prescribing and how this would be taken forward

• Seek reassurance that the organisational development plan includes opportunities for Patient Reference Group members.

• Dementia workshop –seek reassurance/clarification regarding the dialogue between health and social care that enables both to understand the implications on service changes for each other that will ensure the right care and support is available for families and carers.

MNPRG/17/50 AGENDA ITEMS FOR NEXT MEETING

Members agreed that agenda items for the next meeting would be:

• Update following Gilly Hagen’s attendance at social prescribing event.

• Patient and Public Participation in Commissioning Health and Care that provides statutory guidance for CCGs and NHS England

MNPRG/17/51 DATE OF NEXT MEETING Due to the number of apologies received it was agreed that the meeting scheduled for 22 May 2017 should be cancelled and a new date arranged that was suitable to the majority of members. Post meeting note; The next meeting will be held on Wednesday 31 May 2017 in Meeting Room 1, Hawthorn House, Mansfield.

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