Download Nice Guidelines on MND – Chris James, Director

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
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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
What is covered?
The guideline considers the following:
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recognition and referral
information and support at
diagnosis
cognitive assessment
prognostic factors
organisation of care
psychological and social
support
planning for end of life
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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:
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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.
Established links with:
The core team should liaise with:
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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:
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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
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Statement 2: Adults with MND who have respiratory impairment are offered non-invasive
ventilation (NIV) based on regular assessments of respiratory function and symptoms
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Statement 3: Adults with MND receive tailored equipment and adaptions without delay, based on
regular multidisciplinary team assessments
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Statement 4: Adults with MND receive personal care and support from a consistent team of
workers who are familiar with their needs
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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
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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
www.mndassociation.org/mndsheets
Tools for professionals
Putting NICE guidance into practice
• can be used to evaluate
whether practice is in line with
recommendations
Baseline assessment: Motor
neurone disease
Implementing the NICE guideline on
Motor neurone disease (NG42)
• includes a data sheet to record
current activity and any actions
needed
Published: February 2016
https://www.nice.org.uk/guidan
ce/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
[email protected]
Thank you