1 Local Action Plan -2019 NORTHERN IRELAND Background As of 1 st January there were 110 people known to the Association with MND, 1 MND Association branch, 0 regularly active Multi-Disciplinary teams (MDTs) and 1 MND Care Network. Map The total population is c1.8 million. Expected incidence or the number of people expected to develop MND each year is 36 people and the expected prevalence or the number of people living with MND at any one time is 126 people. This three-year Local Action Plan (LAP) has been developed by the Local Delivery Team (LDT) in consultation with key stakeholders. It defines priorities and activities to support the Regional Delivery Plan (RDP) developed from the strategic goals and objectives of the Association as set out in our -2021 Strategy. The RDP includes Regional Performance Indicators (RPIs) which will be used to monitor progress alongside quarterly narrative reports to the Directors Team. This plan will be formally refreshed mid-way through the Strategy in 2019. Membership of Local Delivery Team (LDT) Chris Bennett, Regional Delivery Manager (RDM) Creea Convery, Regional Care Development Adviser (RCDA) Tim Atkinson, Campaigns Manager (CM) Jo Cunnah, Volunteer Development Coordinator (VDC) Richard Shackelford, Regional Fundraiser (RF) In consultation with: Branch Committee, Association Visitors and volunteers in Northern Ireland MND Nurse Specialists, MND Care Network Director Key Stakeholder Groups Northern Ireland Care Network Northern Ireland Neurological Charities Alliance Northern Ireland Rare Disease Partnership
2 What are we going to do? How will we do it? Who will be involved? RDP Outcome 1: Intelligence gathering, needs assessment and analysis Gather and analyse data from the Transforming MND Care audit for care centres/networks and for other services not funded by the Association Support the Northern Ireland Care Network to complete the audit as part of their contractual obligations Support at least one other team/service to complete the audit each year RDM, RCDA, nurse specialist RCDA Timeframe Outcome Activity and every 2 years Annually 1a, 1b Gather and analyse data from other sources in relation to regional services Use data from the Improving MND Care surveys, regional service mapping and other identified data sources including those provided by the NHS to highlight shortfalls in services RDM, CM, RCDA, LDT 1c, 1d, 1e Prioritise available data and intelligence to inform local and national campaigning, where appropriate Determine local issues for change, prioritise and develop campaigning plans as required with the LDT and Branch RDM, CM, RCDA, LDT, Branch 1f, 1g, 1h RDP Outcome 2: Driving service improvement Create and implement improvement plans following the use of the Transforming MND Care audit Work with the Northern Ireland Care Network to implement the audit improvement plan, as required Nurse specialist, RCDA 2a, 2b Work alongside at least one other team/service in the LDT area each year who have undertaken the audit, to implement their improvement plan RCDA, nurse specialist Annually Use influencing and negotiation to improve health and social care services not funded by the Association where there are identified shortfalls Target commissioners and policy/decisionmakers where there appear to be fundamental shortfalls identified in service provision Ensure people with MND have timely access to Augmentative and Alternative Communication (AAC) from the Communication Advice Centre which meets their needs RCDA, CM, RDM 2c
3 Input into service review ongoing Review and replenish equipment loan stock Annually Engage with the review of Neuromuscular Respiratory Services to ensure all people with MND have equitable access to a regional service which meets their needs Participate in the Neurology Pathways Modernisation programme to ensure planned services and agreed improvements meet the requirements of the NICE guideline on MND Work alongside Advice NI as lead service provider to improve access to benefits and financial advice and support April onwards RDP Outcome 3: Protecting and extending care and support Manage the contract and relationships with care centres and networks Maintain membership of Northern Ireland Care Network Steering Group and work to strengthen its role in planning and implementing the NICE guideline for MND RDM, RCDA 3a RCDA to attend the Network clinics periodically RCDA Fortnightly To agree and implement a vision for an effective regional model of multi-disciplinary care which meets the needs of people with MND as supported by the NICE guideline and which informs a renewed 4 year grant contract for Northern Ireland Care Network RDM, RCDA, nurse specialist -2021 December 2019 Continue to ensure there is good integration of RCDA, AV, CNS roles to support people with MND, families and carers linking in with other support and clinical roles as identified RCDA, AVs, nurse specialist
4 Include AVs as part of the MND clinics where possible AVs 2018/2019 onwards Support and develop MDTs Explore possibilities to develop community MDTs and clinics as part of a regional service model for multi-disciplinary care supported by the MND Care Network Initially pilot in one location Development to be guided by the NICE guideline for MND and to feed to/from the work of the Neurology Pathways Modernisation RCDA, nurse specialist, RDM -2021-2018 3b Increase the number of referrals to the Association Ensure that all newly diagnosed people with MND are given adequate opportunities to engage with the Association including understanding the offer of membership RCDA, nurse specialist 3c Facilitate the delivery of a programme of regional masterclasses Delivery of Masterclass on cognitive impairment/ecas assessment tool in Antrim RCDA September 3d Contribute to the development of the ongoing masterclass programme, ensuring these are promoted throughout the LDT area 2019 TBC Provide training and development opportunities for HSCPs according to local needs and priorities As part of an education project consider innovative ways to provide education and promote and develop interest in MND RCDA, Branch 3e Engage with health and social care professionals to learn more about their needs RCDA, nurse specialist Regular refresher type education events Hold study days on basic MND knowledge and care for care providers, nursing homes etc.
5 Consider specific targeted advanced MND education to improve care. For example respiratory or palliative care Recruitment, retention and succession planning of all regionally based volunteers Increase the number of volunteers involved in the work of the MND Association and to support the ongoing development of our branch VDC, Branch 3f Maintain a team of Association Visitors (AVs) and continue to review needs/priority areas for recruitment and capacity to support. Current priorities are: Northern Trust Belfast With a target team of: 12 by end 15 by end 2019 RCDA, VDC, AVs 2019 As part of a volunteering project consider: Strengthening skills Successful planning Roles on committee New roles and ways of working VDC, CM, Branch Developing network of support meetings up to 5 locations from current 2 RCDA, VDC, AVs, Branch Consider upcoming opportunities for Branch President and Patron VDC, Branch Provide support and learning and development opportunities for all regionally-based volunteers Provide induction for all new volunteers and agree ongoing learning and development priorities for volunteers in all roles VDC, Branch 3g Support one development day per year which is RCDA/VDC agreed to be accessible to AVs Annually
6 Continue to deliver local learning and development opportunities for AVs Hold AV support meetings RCDA, VDC RCDA, AVs Quarterly Promote the Champion the Charter campaign as a means to influence local authorities and open doors for service development Develop and deliver local campaigns where needed Explore further opportunities as they arise CM, Branch End In consultation with the branch, develop an approach to campaigning/influencing which meets the needs in Northern Ireland. Further understand how volunteers can best meet (some of) those needs and agree how they will be recruited, engaged and supported. Use local data to inform priorities for local campaigning Continue respiratory campaign through conversations with health and social care professionals and Health and Social Care Board Consider consultancy support for policy and public affairs work on a clear brief for objectives and outcomes CM, RCDA, LDT, Branch 3i Support the delivery of Association-wide campaigns Future activity to be advised by Association-wide campaigns and design/promote as appropriate for Northern Ireland CM, LDT, Branch 3j Likely first campaign to be about financial costs of MND and benefits Promote and increase numbers in the Campaigns Network Increase current numbers by a further 20 to a total of 105 members CM, Branch 2019 3k
7 RDP Outcome 4: Innovation and new work Develop new volunteering roles Explore establishing Association Visitor Coordinator and Support Meeting Coordinator roles as part of volunteering project VDC, RCDA, AVs, Branch -2018 4a Develop new care and support services Expand support meeting network to increase coverage across Northern Ireland: Lisburn North-West Newry Antrim/Ballymena West RCDA, VDC, Branch, AVs 4b As part of a project concerning emotional and psychological support identify services and explore how to better meet the needs of people with MND, families and carers RCDA, Branch Continue to explore proposed palliative and multidisciplinary clinic at the Northern Ireland hospice Maintain good relationships with and explore new ways of working with hospices Engage people with MND and carers in coproducing and co-delivering our services Implement carers work plans Engage with people with MND as part of the Neurology Pathways Modernisation programme working alongside partners such as NiNCA and NIRDP (see 5b below) Develop specific support opportunities for carers and past-carers building on the success of the current Lisburn group for part-carers RCDA, Branch 4d VDC, Branch 4e Increase the number of carers grant awards Branch Implement children and young people s work plans Scope future options for increasing support to families and consider a working group to explore LDT, Branch 2018-2019 4f
8 Increase the number of children & young people grant awards Branch RDP Outcome 5: Working with others Map regional and local stakeholders and partners, analysing gaps, assessing effectiveness and prioritising involvement Possible priorities for gathering further information about services and needs: Advocacy Carers and young carers Disability rights LDT, Branch 5a Form and manage relationships, partnerships and alliances and work effectively with them Work with: Northern Ireland Neurological Charities Alliance (NiNCA) Northern Ireland Rare Disease Partnership (NIRDP) Carers NI Maintain membership of: Northern Ireland Council for Voluntary action (NICVA) LDT, Branch 5b RDP Outcome 6: Raising awareness, promotion and marketing Promote and market our resources and services to people with MND/families/carers Actively engage in MND Awareness month in June and explore opportunities for resources and promotion to be Northern Ireland Specific LDT, Branch Annually 6a Ensure people with MND get the best possible information about services and support available RCDA, VDC, branch, AVs Promote and market our online and other educational resources, events and activities to HSCPs Through contact with health and social care professionals, promote: The Professionals Forum Online learning modules Education events RCDA, nurse specialist 6b
9 Raise awareness of MND and promote the work of the MND Association with key regional stakeholders Explore opportunities to target participation at key stakeholder conferences and events including those for health and social care professionals RCDA, VDC, branch 6c Promote research opportunities for people with MND Ensure proposed conference event includes a presentation on research RDM, Branch 2018 6d Explore opportunities for people with MND in Northern Ireland to participate in research RDM, RCDA Promote the MND Association research portfolio Work alongside the Association-wide communications team to identify and respond to regional media opportunities Work alongside the Association-wide conferencing team to deliver the regional conferences programme RDP Outcome 7: Fundraising Deliver regional legacy marketing events Include research updates in MND study days/education events and branch and group events were possible and appropriate Actively promote the MND register once it is fullydeveloped amongst HSCPs/people with MND Alongside promoting local support work, take opportunities to talk about the research we fund to potential funders/ donors Ensure the communications team: Receive regular updates on the work delivered in the local action plan so they can publicise good news stories Seek to engage people with and affected by MND and the Branch in appropriate media opportunities Plan and deliver a conference event in Belfast No immediate plans. Consider holding a legacy marketing event during the period of the strategy. Engage with the Northern Ireland Care Network and our Branch to do this RCDA, Branch 6e LDT, Branch 6f RDM, RCDA, CM, RF, Branch 2018 6g RF, Branch By 2021 7b
10 Deliver regional thank-you events In consultation with the Branch consider a thank you element for supporters as part of the conference event RF, Branch 2018 7c Promote the fundraising portfolio All staff and volunteers to opportunistically promote fundraising events and activities All 7d Continue to build our support from the Belfast Marathon RF, Branch May, annually Deliver fundraising workshops Regional Fundraiser to provide support to branch as required RF, branch 7e RDP Outcome 8: Fit for purpose regional systems and processes Use evidence and intelligence to inform and demonstrate the impact of our work Use relevant tools to measure impact and improvement (e.g. the Transforming MND Care resource, the Improving MND Care survey, evaluations of project work etc.) All 8a Implement the diversity and equality strategy in the regions Ensure our volunteer recruitment plans actively takes account of the diversity needed within our volunteer team, and that there are equal opportunities for people to become involved VDC, Branch 8b Consult and engage with volunteers and key stakeholders Maintain good communication and engagement with volunteers including: Staff to provide updates for our Branch for committee meetings Holding regular planning away-days to deliver our work together LDT, Branch 8c Maintain regular communication with health and social care professionals RCDA Work collaboratively to develop and deliver work Establish project groups where needed to ensure agreed work is delivered All 8d
11 Embed project management Coordinate delivery of plan through a Local Delivery team (LDT) in consultation with people with and affected by MND, our Branch, AVs and our professional partners Ensure all regional staff are using, project management methodology appropriately LDT All 8e Agree and adopt a process for developing, monitoring and reviewing local action plans Continue to hold LDT meetings no less than 3 times per year to reflect on priorities, assess and monitor progress and regularly review Ensure key action points and updates concerning the Local Action Plan go out periodically through branch newsletter/website/social media RDM, All LDT, Branch Quarterly 8f Ensure clarity of our regional care and support offer and customer journey Use a suite of standardised educational materials Develop and publicise the support offered to people with/affected by MND and carers through website, newsletter and social media. Ensure that all people with/affected by MND who want to have contact with the branch and have the support of an AV either by face-to-face contact, telephone or email Promote and use the standardised educational materials at events and conferences etc. RCDA, Branch 8g RCDA 8h Contact Regional Delivery Manager: Chris Bennett Telephone: 07702335752 Email: chris.bennett@mndassociation.org