What is the NICE guideline on MND and what does it mean for you?

How did we get a NICE guideline? 2010: formal request for guideline and quality standard 2011: NAO and PAC reports, QS promised 2012: NICE announce guideline 2014: Guideline Development Group established 2015: Draft guideline published 2016: Final guideline published

Our influence on the guideline Survey – 390 respondents 54% of all comments submitted to NICE Welcomed guideline Secured improvements: Care outside hospital End of life discussions Anticipatory assessment and provision

Benefit to people with MND Sets out best practice to ensure care is appropriate and relevant

and...... it will enable people with MND: to understand what good care should look like have better discussions with health and social care professionals make informed decisions challenge decisions with more confidence.

A positive step The guideline is: the result of a comprehensive, systematic review of published evidence offers a platform to influence service provision.

Relevance to England, Wales and Northern Ireland? designed for adoption in England, also relevant to Wales and Northern Ireland Wales – formerly taken effect – challenge is to ensure implementation by the Health Boards Northern Ireland – more complex but essentially the same In Wales, it has formally taken effect – the challenge is ensuring vigorous implementation by the Health Boards   In NI, it’s slightly more complex but the situation is essentially the same. The Department for Health endorsed guideline in April Health & Social Care Board is in discussion with Trusts about implementation – there’s a three month period where they work out what needs to be done, what needs to change, how much work is required etc (full process here) This should have finished in July, so I’ve asked an HSC Board official for an update on what the situation is. So, again, the challenge is ensuring the right implementation (which is pretty much what we called for in both our Assembly election reports and asked for in correspondence to the new Health Minister/Secretary in both Wales and NI)

What is covered? The guideline considers the following: recognition and referral information and support at diagnosis cognitive assessment prognostic factors organisation of care psychological and social support planning for end of life management for muscle problems saliva management equipment and adaptations nutrition and gastrostomy communication cough effectiveness non-invasive ventilation. It does not cover: use of Riluzole - a separate guideline is available TA20

Relevant to professionals It is important all professionals understand the importance of: early diagnosis and support organisation of care psychological support anticipatory provision without delay planning ahead for end of life care.

Organisation of care Why is multidisciplinary care important? Evidence shows it improves survival, quality of life and reduces the need for crisis management (ref p.101) neurologist specialist nurse dietitian physiotherapist occupational therapist respiratory physiologist or professional who can assess respiratory function speech and language therapist a professional with expertise in palliative care. MDT value for money

Established links with: The core team should liaise with: clinical psychology and neuropsychology social care counselling respiratory ventilation services specialist palliative care gastroenterology orthotics wheelchair services assistive technology services alternative and augmentative communication (AAC) services community neurological care teams.

NICE Quality standards on MND (2) Describe areas for quality improvement in the following: quality of life functional ability symptoms satisfaction with care and support survival from the onset of symptoms.

What are they? The quality statements are:- 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.

How should they be used? Each statement includes: a rationale measures to help assess if correct structures are in place to meet the statement a summary about what it means for service providers, health and social care professionals and commissioners.

What happens next Next = years to come Major programme of work Health and social care professionals Decision-makers National-level design of NHS and other systems Tools, training, audits, events, information

Resources for people with MND information sheet good care checklist in development www.mndassociation.org/mndsheets

Tools for professionals can be used to evaluate whether practice is in line with recommendations includes a data sheet to record current activity and any actions needed https://www.nice.org.uk/guidance/ng42/resources

Supporting Implementation Embed into Association’s strategy (incl. Models of Care Report) Roundtable held – 28th June at the BBC Development of an audit tool Letter to Trust CEOs Develop our partnership work with asks for professional bodies Consideration of the research recommendations

The guideline in practice - discussion What does it mean for me as a professional?

Summary What can I do next? find out what is happening in your area be clear about relevant recommendations use the guideline as an evidence base for service provision.

Further information https://www.nice.org.uk/guidance/NG42 visit our professional pages join our Professionals’ Forum - proforum.mndassociation.org Twitter @mndeducation contact the education and information team education@mndassociation.org

Thank you