1 Local Action Plan 2017-2019 WALES Background As of 1 st January 2017 there were 230 people known to the Association with MND, 6 MND Association branches and, 14 regularly active Multi- Disciplinary teams (MDTs) and 1 MND Care & Research Centre(s)/Network(s). Map The total population is c3 million. Expected incidence or the number of people expected to develop MND each year is 60 people and the expected prevalence or the number of people living with MND at any one time is 210 people. This three-year Local Action Plan (LAP) has been developed by the Wales Delivery Team (WDT) 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 2017-2021 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 Wales Delivery Team (WDT) Chris Bennett, Regional Delivery Manager (RDM) Tim Atkinson, Campaigns Manager (CM) Jo Cunnah, Volunteer Development Coordinator (VDC) Richard Shackelford, Regional Fundraiser (RF) Carol Smith, Regional Care Development Adviser () South Wales Kevin Thomas, Regional Care Development Adviser () North Wales, Powys & Isle of Man Key Stakeholder Groups North Wales Disease Specific Advisory Group (DSAG) for MND South Wales MND Care Network Steering Group Powys Neuro Delivery Group North Wales Neurosciences Board Liverpool (Walton Centre) MND Care Centre Steering Group MND Association branches,, AVs and other volunteers, South Wales Joint Planning Group, North Wales Forum Wales Neurological Alliance
2 Activity Ref. (by outcome) What are we going to do? How will we do it? Who will be involved? RDP Outcome 1: Intelligence gathering, needs assessment and analysis 1a, 1b Gather and analyse data from the Transforming MND Care audit (NICE guideline for MND) for care centres/networks and for other services not funded by the Association Support the South Wales Care Network to complete the audit as part of their contractual obligations Support teams/services to complete the audit working with the DSAG /steering group (North Wales) and Powys neuro steering group (Mid Wales) together with other relevant health and social care stakeholders RDM,, Care Timeframe 2017 and every 2 years 2017 and every 2 years 1c, 1d, 1e 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,, WDT Autumn 2017 and then annually Obtain a clear picture of what hospices in Wales offer to ensure people with MND and their carers make optimal use of them April 2018 Obtain a clearer picture of the process and practice of CHC provision in Wales and identify key issues Dec 2017 1f, 1g, 1h Prioritise available data and intelligence to inform local and national campaigning, where appropriate Working with WDT and other stakeholders determine local issues for change, prioritise and develop campaigning plans as required with the Wales Delivery Team, branches/ and campaigners RDM, CM,, WDT, branches and Explore and determine how best to resource an effective watching policy and public affairs brief for Welsh Assembly/Government as well as forward planning for possible all-wales campaigns RDM, CM, Policy & Campaigns Review end 2017
3 RDP Outcome 2: Driving service improvement 2a, 2b Create and implement improvement plans following the use of the Transforming MND Care audit (NICE guideline for MND) Work with the South Wales Care Network to implement recommendations from the audit improvement plan as required Work alongside other teams/services who have undertaken the audit to implement their improvement plan Working with All Wales MND Group to consider potential for supporting Transforming MND Care with link to local databases and MND Register for comprehensive Wales wide auditing and planned developments Care, s, Care RDM 2017 and every 2 years Annually 2c Use influencing and negotiation to improve health and social care services not funded by the Association where there are identified shortfalls Monitoring, improving access to and ensuring funding for AAC across Wales Engaging with new AAC Hub in North Wales to ensure link to DSAG for coordinated service planning s, CM, Communication Aids Coordinator Work with South Wales Care Network to explore use of cognitive assessments in clinic and promoting further awareness and understanding of cognitive change in MND amongst health and social care professionals, Care Identify current provision of psychological support and explore potential opportunities to develop support s, Care 2017-2019 Working with the South Wales Care Network to improve links with social services, including engagement in MDTs, clinics and by providing educational opportunities, Care 2017-2019
4 Monitor implementation of the Social Services and Wellbeing (Wales) Act 2014 and influence to ensure holistic person-centred and whole family approach to care RDP Outcome 3: Protecting and extending care and support 3a Manage the contract and relationships with care centres and networks and Ice Bucket Challenge funded posts Maintain membership of South Wales Care Network Steering Group and support its role in planning and implementing best practice Work collaboratively with the South Wales Care Network and North Wales DSAG to progress their objectives and developments in clinical care services and pathways Maintain membership of North Wales MND Care Coordinator Steering Group to monitor and review progress of IBC funded grant towards BCUHB take up of future funding. Reports to DSAG and Neurosciences Board Continue to ensure there is good integration of, AV and Care Coordinator roles to support people with MND, families and carers linking in with other support and MDT clinical roles as identified 3b Support and develop MDTs Continue to support the development and operation of community MDTs by regular attendance and assisting with assessing against the NICE Guideline to highlight areas of improvement North Wales Regularly attend all MDTs. Influence development through DSAG s, RDM, CM RDM, s, RDM s, Care, Care
5 Powys Attend North & Mid MDTs. Influence development through Powys Neuro Steering Group South Wales Periodically attend the MDTs, providing updates and influencing development through the South Wales MND Care Network 3c 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. s, Care Increase the number of people receiving support from an Association Visitor or MND Support Volunteer s, VDC, branches &, volunteers 2017-2019 3d Facilitate the delivery of a programme of regional masterclasses Delivery of Masterclass on cognitive impairment/ecas assessment tool in Swansea (South Wales) April 2017 Contribute to the development of the ongoing masterclass programme, ensuring these are well promoted s 2018 ongoing 3e Provide training and development opportunities for HSCPs according to local needs and priorities Work with the South Wales Care Network to deliver a regular programme of study days in South Wales Work with the South Wales MND Care Network to provide training opportunities in response to requests, Care, Care Work with North Wales DSAG and Neuro Steering Group to continue delivering annual study days, including cross-border study day for Powys/Shropshire/Herefordshire Annual programme In North Wales influence domiciliary care agency and residential/nursing home take up of MND awareness training opportunities 2017-2019
6 3f Recruitment, retention and succession planning of all regionally based volunteers Increase the number of volunteers and range of different roles involved in the work of the MND Association ensuring improved diversity and representation from different communities VDC Ensure the ongoing development of our branches and through effective recruitment, retention, coordination, recognition and support of all our volunteers WDT, branches & Increase the number of active Association Visitors (AVs) in Wales with a target team of: s, VDC North Wales/Powys/IoM 8 by end 2017 South Wales 9 by end 2017 2017 North Wales/Powys/IoM 10 by end 2019 South Wales 12 by end 2019 2019 Implement a recruitment plan in regularly reviewed target areas s, VDC Define and implement recruitment plan to establish Campaigns Contacts in branches &. An initial minimum target of a net increase of 3 Contacts by 2019 will be reviewed annually based on progress made VDC, CM 2017-2019 3g 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, WDT Ensure AVs can access agreed annual development updates, offering additional learning and development activities as required. s Annually Quarterly
7 3h Promote the Champion the Charter campaign as a means to influence local authorities and open doors for service development Hold regular support meetings and annual reviews for all AVs Continue to promote the Champion the Charter initiative achieving 2 more adoptions CM, branches & 2017 3i Develop and deliver campaigns in Wales where needed Use data to inform priorities for campaigning, including exploring possible action on social care, CHC and AAC CM,, WDT Identify strategic opportunities to act on Waleslevel issues or to adapt UK campaigns for use with the Welsh Assembly/Government CM, RDM, Policy & Campaigns Team Review annually Hold a campaigns workshop or outreach sessions according to demand for volunteers, branches and to support with campaigning activity CM 2017 3j Support the delivery of Associationwide campaigns Future activity to follow from Association-wide campaigns and promoted as appropriate CM, WDT 2017-19 3k Promote and increase numbers in the Campaigns Network Widely promote, aiming to increase the number by 40 to 165 members CM, branches & 2019 3l Increase the number of B&Gs involved in campaigning Secure the engagement of 4 out of 6 CM, branches & 2019 RDP Outcome 4: Innovation and new work 4a Develop new volunteering roles Establish and formalise the Association Visitor Coordinator role initially in North Wales, and explore in South Wales Develop new remote MND Support Volunteer project to extend one-to-one volunteer support to s, VDC 2017
8 all people with/affected by MND across Wales who need/request it Explore new volunteer roles to facilitate support where appropriate to meet identified local needs VDC, s, branches & Set up Welsh language task and finish group in North Wales to consider needs of Welsh speaking people affected by MND and members VDC,, CM, volunteers 2017-2018 4b Develop new care and support services Develop further support according to need in addition to current support offer VDC, s North Wales Support hospice outreach developments and continue membership of Hospice Social Work Group North Wales Identify OT need through exploration of education, training and small aids kit 2017-2018 4d Engage people with MND and carers in co-producing and co-delivering our services Explore opportunities as part of specific project work Branches and to engage people as part of the way activities are planned and delivered WDT Branches &, VDC 4e Implement carers work plans Work with Carers Trust, Carers Wales, Wales Carers Alliance, Carers Outreach Service (North Wales) on identified projects to include awareness raising, information sharing, access to grants and support In conjunction with Swansea Carers Centre, establish ongoing carers group in Swansea area Increase the number of carers grant awards s, Care Coordinator Branches & Autumn 2017
9 Ensure carers access support offered by local providers, branches and Branches & Establish a Carer Subgroup of the North Wales Forum to improve carer support in North Wales VDC, 2017/18 Explore ideas and opportunities to provide and/or increase bereavement support s, VDC 2018 onwards 4f Implement children and young people s work plans Increase the number of children & young people grant awards Branches & RDP Outcome 5: Working with others 5a 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 Disability rights WDT To be agreed 5b Form and manage relationships, partnerships and alliances and work effectively with them Work with specifically though not exclusively: Wales Neurological Alliance Wales Carers Alliance Disability Wales Wales Neurological Delivery Plan Implementation Group North Wales Neuro Conditions Partnership WDT Maintain current strong links with four hospices in North Wales through membership of Palliative Care Clinical Leads Group Work with other carefully selected organisations to promote volunteering opportunities and recruit more volunteers e.g. universities and community VDC, branches &
10 RDP Outcome 6: Raising awareness, promotion and marketing 6a Promote and market our resources and services to people with MND/families/carers AVs, branches and to provide information and access to resources including promoting MND Connect. Keep supplies of published materials up to date Actively engage in MND Awareness month Ensure people with MND get the best possible information about services and support available locally Promote new Association benefits support service widely and encourage take-up AVs, branches & All s, VDC, branches & WDT, branches & June, Annually April 2017 onwards 6b Promote and market our online and other educational resources, events and activities to HSCPs Through South Wales Care Network, North Wales DSAG, MDTs and links with health and social care professionals, promote: The Professionals Forum Resources and publications Online learning modules Education events s, Care, MDTs 6c Raise awareness of MND and promote the work of the MND Association with key regional stakeholders Explore and target participation at key stakeholder conferences and events including those for health and social care professionals Gain a better understanding of local issues of interest to politicians and invite them more regularly to specific local Association events, VDC, branches & s, CM, branches and Provide more news updates, infographics etc, suitable for local politicians CM, s 6d Promote research opportunities for people with MND Working with the South Wales Care Network and North Wales DSAG to promote access to any s
11 available research opportunities for people with MND Include research updates in MND study days/education events and branch and group events were possible and appropriate s, branches & Ensure the regional conference includes a presentation on research RDM 2020 6e Promote the MND Association research portfolio Actively promote the MND register once it is fullydeveloped amongst HSCPs and people with MND All To be agreed Include research updates and presentations as part of planning for education/study days s, Care 6f 6g Work alongside the Association-wide communications team to identify and respond to media opportunities in Wales Work alongside the Association-wide conferencing team to deliver the regional conferences programme Ensure the communications team receive regular updates on the work delivered in the local action plan so they can help publicise good news stories Plan and deliver a regional conference in Cardiff RDP Outcome 7: Fundraising 7a Develop fundraising Support all branches and to increase their capacity to fundraise including developing fundraising and providing resources as required Support South Wales Joint Planning Group Fundraising Sub-group and North Wales Forum to include a fundraising focus All WDT, branches & RF, branches & RF, branches & 2020 7b Deliver regional legacy marketing events Hold a legacy marketing event during the period of the current strategy RF, WDT 2017-2021
12 7c Deliver regional thank-you events Hold a least one regional thank you during the period of the plan (to be included in HRH event if this goes ahead) 7d Promote the fundraising portfolio Promote all fundraising events/activities widely across Wales specifically Silence Speaks 7e Deliver fundraising workshops Regional Fundraiser to provide these for branches and as identified RF, WDT, branches & RF, WDT, branches & RF, branches & 2017-2019 7f Identify and refer potential opportunities for fundraising Explore potential funders from local/regional corporates, trusts and community RF, branches & RDP Outcome 8: Fit for purpose regional systems and processes 8a 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 8b Implement the diversity and equality strategy in the regions Ensure our volunteer recruitment plans actively take account of the diversity needed within our volunteer team, and that there are equal opportunities for people to become involved VDC, branches & Work to ensure that our services and support are provided equitably across all our diverse communities WDT 8c Consult and engage with volunteers and key stakeholders Maintain good communication and engagement with volunteers including Review current engagement with volunteers and agree new ways of working Review and if appropriate continue to develop and support the South Wales Joint Planning Group Hold an open event as part of the review to try and engage with new volunteers WDT, branches & 2017/18 2017 2017
13 Support the ongoing development of the North Wales Forum If bid successful, deliver an HRH event to showcase work of our volunteers and supporters in Wales WDT Autumn//Winter 2017/18 Maintain regular communication with health and social care professionals s 8d Work collaboratively to develop and deliver work Establish project where needed to ensure agreed work is delivered All Coordinate the ongoing development and delivery of the local action plan through the Wales Delivery Team (WDT) in consultation with people with and affected by MND and all our key stakeholders identified above WDT Meeting quarterly, ongoing 8e Embed project management Ensure all regional staff are using, project management methodology appropriately All 8f Agree and adopt a process for developing, monitoring and reviewing local action plans Continue to hold Wales Delivery Team meetings quarterly to reflect on priorities, assess and monitor progress and along with our key stakeholders, regularly review the local action plan RDM, WDT Quarterly Ensure key action points and updates concerning the local action plan go out periodically to North and South Wales Volunteer Forums WDT, branches and 8g Ensure clarity of our regional care and support offer and customer journey Develop and publicise the support offered to people with/affected by MND and carers through website, newsletter and social media s, VDC, branches and
14 Ensure that all people with/affected by MND who want to, have contact with branches/ and have the support of an AV or MND Supporter Volunteer either by face-to-face contact, telephone or email s, VDC, branches and 8h Use a suite of standardised educational materials Promote and use the standardised educational materials at events and conferences etc. s Contact Regional Delivery Manager: Chris Bennett Telephone: 07702335752 Email: chris.bennett@mndassociation.org