The Motor Neurone Disease Association
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1 The Motor Neurone Disease Association What s new in MND Care? Kerry Palmer Regional Care Development Adviser (Cornwall, Devon and Somerset) 23/03/17
2 Plan NICE Guideline Digital Communication Professional Learning Support Options Carer Support New Resources and Publications
3 Motor Neurone Disease: assessment and management Nice.org.uk/guidance/ng42 FEB 2016
4 NICE Guidelines Quality standard of care Letters to CEOs Hospitals. Audit of services Reference Guidance for H&SC professionals Promote research into care Empower plwmnd and their families
5 The Guideline covers MND care from referral and diagnosis, through to organisation of care, information and support, managing symptoms and planning for end of life. It urges a joined-up approach where different specialists work together to improve overall quality of life.
6 List of Quality Statements (NICE) Statement 1. Adults diagnosed with motor neurone disease (MND) are given information about the diagnosis, prognosis and management of MND by a consultant neurologist with expertise in treating people with MND. Statement 2. Adults with MND who have respiratory impairment are offered non-invasive ventilation (NIV) based on regular assessments of respiratory function and symptoms. Statement 3. Adults with MND receive tailored equipment and adaptions without delay, based on regular multidisciplinary team assessments. Statement 4. Adults with MND receive personal care and support from a consistent team of workers who are familiar with their needs. Statement 5. Adults with MND are given opportunities to discuss their preferences and concerns about end of life care at diagnosis and key stages of disease progression.
7 NICE Key Themes End of Life Care Information at the right time Choice and control over their treatment Advanced care planning Greater support at this time Importance of specialist care Timing of palliative care Support to create a positive death Bereavement support
8 Do you want to find out more? National Institute for Health and Care Excellence. Nice Guideline NG42 Motor Neurone Disease: assessment and management February 2016 MNDA 1A NICE Guideline on motor neurone disease NHS UKMi North West, NICE Bites, April 2016 No 86 H & SC Special Interest Group meetings
9 Digital communication Voice banking Voice repair Speak:unique Edinburgh University Dont let me die without a voice Digital legacies Augmentative and alternative communication Utilising technology
10 Do you want to find out more? Voice banking for people with MND, MNDA. 7C Speech and communication support, MNDA. Matthew Hollis, Communication Aids coordinator, MNDA. Youtube/spv06ytEUyg Speakunique.org Digital legacies, Olly Clabburn, Edge Hill University,
11 Learning support Health Care Assistants module Second module for GPs Signs and symptom management RGN CPD module New partnership with Association of UK Dieticians BDA OT short CPD learning module
12 Do you want to find out more? Health Care Assistants mndassociation.org./careworkermodule Registered General Nurses mnd.rcnlearning.org.uk COT/BAOT website, learning zone. GP and Primary Care team module mndassociation.org/gp Module for counsellors Being piloted
13 Join our professionals forum
14 International Symposium. AHP Forum. Boston USA 7 th December 2017 Call for abstracts 1 st April to 5 th May Themes include; Managing Cognitive Change Assistive Technology Promoting a Palliative Approach Models of Care Developing Resources for Families/Carers Therapeutic Interventions
15 Carer Support Fronto Temporal Dementia on line support Support for young people New caring and MND booklet Carers grants CAT assessment tool
16 Do you want to find out more? forum.mndassociation.org Frontotemporal-Dementia-and-MND meetings/london/ Caring and MND: support for you, MNDA. CAT assessment tool. Edge Hill University Carers grants. Talk with Kerry Palmer or Tracy Thomas Karen Welsenaer, Children and Young People Development Manager
17 New publications and resources Supporting children and young people close to someone with motor neurone disease Eating and drinking with motor neurone disease. Information, tips and easy swallow recipes Advanced Masterclass Using the Edinburgh Cognitive and Behavioural ALS Screen to assess change in Motor Neurone Disease Health and Social Care bursary towards training
18 New resource on DVD and USB memory stick
19 Campaigning. A commitment for councils to make a difference to the lives of people living with mnd, their families and carers.
20 Local MND Support Contacts MND Connect MNDA Regional Care Development Adviser (RCDA) Kerry Palmer Tracey Thomas Care Network Co-ordinator S W Peninsula Natasha Giles Service Co-ordinator SW MND Network
21 Thank you for listening
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