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

2. 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

3. 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

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

5. 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.

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

7. 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)

8. 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

9. 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.

10. 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

11. 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.

12. 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.

13. 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.

14. 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.

15. 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

16. Resources for people with MND
information sheet
good care checklist in development

17. 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

18. 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

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

20. 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.

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

22. Thank you