NICE MND guideline

Used across the whole answer

iAdds context

“Bowel and bladder problems in ALS/MND are common, treatable, and worth raising.”

Says nothing about how common these problems are, so it is not the basis for 'common'. What it does is put constipation inside routine MND care: it lists pain and other symptoms such as constipation among the areas the multidisciplinary team should assess, manage and review, and tells teams to check for it when they assess diet and fluid intake.

✓Supports this

“Breathlessness, disturbed sleep, morning headaches and daytime sleepiness are recognised signs of potential respiratory impairment in MND, which teams are told to monitor for.”

Lists all four in its table of symptoms and signs of potential respiratory impairment that teams monitor for, and treats them as the trigger for respiratory function testing. This is a clinician monitoring list, not a patient triage rule: it says nothing about urgency or out of hours, so it supports reporting these signs but not what to do in an emergency, which is sourced separately below.

Monitor the symptoms and signs listed in table 1 to detect potential respiratory impairment.

1.15.7

✓Supports this

“Symptoms change over time, so what helps may need adjusting.”

Builds repeat review into MND care rather than treating it as optional. It asks the multidisciplinary team to carry out regular coordinated assessments, usually every two to three months, and to assess, manage and review a named list of areas including how the person is responding to treatment. The quoted recommendation is that same instruction applied to muscle problems.

Review the treatments for muscle problems during multidisciplinary team assessments, ask about how the person is finding the treatment, whether it is working and whether they have any adverse side effects.

1.8.4

iAdds context

“Some gentle activity within comfortable limits can help with fatigue.”

Recommends considering an exercise programme in MND, chosen to suit the person's level of function and explicitly taking fatigue into account, with aims that include optimising function and quality of life. It does not say that exercise reduces fatigue, so it supports the 'within comfortable limits, guided by a physiotherapist' framing rather than the benefit itself.

Take into account factors such as postural needs and fatigue.

1.8.6

✓Supports this

“When the breathing muscles are affected, breathing becomes less efficient, particularly during sleep, and that can show up as daytime tiredness.”

Its table of symptoms and signs of possible respiratory impairment, which teams are told to monitor, lists daytime sleepiness, disturbed sleep, non-refreshing sleep and morning headaches alongside breathlessness. That is the same link the answer draws, from the guideline's own side.

Monitor the symptoms and signs listed in table 1 to detect potential respiratory impairment.

1.15.7

✓Supports this

“Medicines are an option a doctor can use when muscle cramps are frequent or troublesome.”

Recommends a first, second and third choice of medicine for muscle cramps in MND, moving on if one is not effective, not tolerated or not suitable. It also notes that several of these were off-label uses when the guideline was published, which is one reason the choice sits with a clinician.

Discuss the available treatment options for muscle problems.

1.8.1

✓Supports this

“Medicines are available that may help when stiffness or spasticity is a problem.”

Names a set of medicines to consider for muscle stiffness, spasticity or increased tone in MND, and says to refer on to a specialist service for severe spasticity if those do not work. It also asks teams to review these treatments at multidisciplinary assessments and to ask about side effects.

Review the treatments for muscle problems during multidisciplinary team assessments, ask about how the person is finding the treatment, whether it is working and whether they have any adverse side effects.

1.8.4

✓Supports this

“Keeping joints and muscles moving helps comfort and prevents muscles and joints tightening up.”

Recommends considering an exercise programme in MND for exactly these purposes: to maintain joint range of movement, prevent contractures, reduce stiffness and discomfort, and optimise function and quality of life. It adds that the programme should be matched to the person's level of function and should take fatigue into account.

Used across the whole answer

!Qualifies this

“Breathing support such as non-invasive ventilation can improve sleep for the right person.”

Treats better sleep as a real reason to try non-invasive ventilation, but a conditional one. For people with severe bulbar impairment or severe cognitive problems it says to consider a trial only if they may benefit from better sleep-related symptoms or from correcting a build-up of carbon dioxide. That is the same limit the answer means by 'for the right person'.

Consider a trial of non-invasive ventilation for a person who has severe bulbar impairment or severe cognitive problems that may be related to respiratory impairment only if they may benefit from an improvement in sleep-related symptoms or correction of hypoventilation.

1.15.18

✓Supports this

“Weaker breathing muscles make breathing less effective during sleep, which can cause waking, poor-quality sleep, morning headaches and daytime tiredness.”

Its table of symptoms and signs of possible respiratory impairment, which teams are told to monitor for, lists disturbed sleep, non-refreshing sleep, morning headaches and daytime sleepiness. Those are the same four things the answer names, and the guideline attributes them to weakening breathing.

Monitor the symptoms and signs listed in table 1 to detect potential respiratory impairment.

1.15.7

Used across the whole answer

Used across the whole answer

✓Supports this

“Muscle cramps and stiffness in ALS/MND can be treated in several ways.”

Sets out more than one route for each problem: a sequence of medicines to consider for muscle cramps, a separate set for stiffness, spasticity or increased tone, referral to a specialist service if those do not work, and an exercise programme to reduce stiffness and discomfort. Several of the medicines it names were off-label uses at the time of publication.

Discuss the available treatment options for muscle problems.

1.8.1

Background the team read

✓Supports this

“Weak breathing, particularly overnight, can affect alertness and thinking.”

The table of symptoms and signs this recommendation points to includes poor concentration and memory, confusion and daytime sleepiness alongside disturbed sleep, non-refreshing sleep and morning headaches, so the guideline treats changes in alertness and thinking as things weak breathing can produce. Elsewhere it refers directly to cognitive problems that may be related to respiratory impairment.

Monitor the symptoms and signs listed in table 1 to detect potential respiratory impairment.

1.15.7

✓Supports this

“The possibility that thinking will change is a reason to do the planning and decision-making earlier.”

NICE tells clinicians to bring advance care planning forward for exactly this reason, when they expect a person's thinking, communication or capacity to get worse.

Think about discussing advance care planning with people at an earlier opportunity if you expect their communication ability, cognitive status or mental capacity to get worse.

1.7.4

!Qualifies this

“Changes in thinking can make weighing a decision harder and can affect a person's capacity to make it.”

NICE makes the capacity point, but ties it to MND with frontotemporal dementia specifically rather than to the milder cognitive change this answer is mostly describing. Its wider recommendations do treat cognitive status as something to weigh in every discussion, including decisions about ventilation and feeding.

Be aware that people with MND and frontotemporal dementia may lack mental capacity.

1.3.1

Used across the whole answer

✓Supports this

“It is reasonable to ask about cognitive or behavioural assessment early, without waiting for changes to become obvious.”

NICE puts the first point for exploring cognitive and behavioural change at diagnosis, before anyone has raised a concern, and again whenever a concern does come up.

At diagnosis, and if there is concern about cognition and behaviour, explore any cognitive or behavioural changes with the person and their family members and/or carers as appropriate.

1.3.2

!Qualifies this

“New confusion alongside a chest infection or a change in breathing is worth raising promptly, because it may have a cause that can be treated.”

The table this recommendation points to lists confusion, and poor concentration and memory, among the symptoms of possible respiratory impairment, and recurrent chest infections among the signs. That covers the breathing and chest infection part of this bullet, though NICE frames the list as prompting a respiratory assessment rather than as a general cause of confusion.

Monitor the symptoms and signs listed in table 1 to detect potential respiratory impairment.

1.15.7

Background the team read

iAdds context

“Comfort medicines at the end of life are given by an experienced team at doses matched to the person's symptoms, with the aim of relieving distress.”

Names which medicines these are. NICE's MND guideline recommends opioids for breathlessness, so this is established guideline practice rather than something improvised at the bedside. It does not itself discuss dose matching or the effect on life expectancy.

Consider opioids as an option to relieve symptoms of breathlessness.

1.13.4

✓Supports this

“Teams arrange medicines and a plan in advance so a symptom can be treated as soon as it appears.”

NICE's MND guideline asks teams to have anticipatory medicines already accessible as the end of life approaches, and names the ones this answer describes: opioids and benzodiazepines for breathlessness, and antimuscarinics for saliva and secretions.

Anticipatory medicines, including opioids and benzodiazepines to treat breathlessness, and antimuscarinic medicines to treat problematic saliva and respiratory secretions.

1.7.7

✓Supports this

“An advance care plan only changes what happens if the people who need it can find it at the time.”

NICE's MND guideline treats getting the plan to where it can be found as part of the planning conversation itself, not an afterthought, and gives the person's shared electronic health record as its worked example.

How to ensure advance care plans will be available when needed, for example, including the information on the person's Summary Care Record.

1.7.3

✓Supports this

“Anxiety can make breathlessness worse, and it can be treated alongside the breathlessness.”

NICE's MND guideline treats anxiety-driven breathlessness as its own thing to prescribe for, which is why the two are handled together rather than separately.

Consider benzodiazepines to manage breathlessness that is exacerbated by anxiety.

1.13.5

✓Supports this

“Bereavement support for the family is part of what palliative care and hospice services are expected to provide.”

NICE's MND guideline makes bereavement support for family and carers a recommendation in its own right, in the end-of-life section, rather than something a service may add if it has capacity.

Offer bereavement support to family members and/or carers (as appropriate).

1.7.8

iAdds context

“Palliative and MND teams prepare families for what is coming, what to do, and who to contact.”

NICE's MND guideline asks for more support as the end of life nears, but the support it describes is practical rather than informational: extra social or nursing care so that family can hand over some of the caring and spend the time with the person instead.

Provide additional support as the end of life approaches, for example, additional social or nursing care to enable informal carers and family to reduce their carer responsibilities and spend time with the person with MND.

1.7.6

iAdds context

“If you cannot get to a specialist clinic, care can still be coordinated through professionals nearer home.”

The UK clinical guideline requires the specialist multidisciplinary team itself to provide coordinated care for people who cannot attend the clinic. That places the duty on the service, rather than describing how a team is put together locally.

iAdds context

“Everyone involved in your care is meant to be told about key decisions.”

The UK guideline puts this duty on the team rather than on you: every health and social care professional involved should be told about key decisions reached with the person and their family. Useful to know if you find yourself having to chase it.

Inform all healthcare professionals and social care practitioners involved in the person's care about key decisions reached with the person and their family members and/or carers (as appropriate).

1.5.9

✓Supports this

“If something changes or gets worse, you can ask to be seen before your next scheduled appointment.”

The UK clinical guideline requires services to have arrangements that bring a multidisciplinary assessment forward when symptoms change significantly, and it counts the person or their family noticing the change as a trigger. It also says people should be given a point of contact and told what to do about concerns between appointments.

Ensure arrangements are in place to trigger an earlier multidisciplinary team assessment if there is a significant change in symptoms identified by the person, family members and/or carers (as appropriate), or healthcare professionals.

1.5.7

✓Supports this

“Coordinated, specialist, multidisciplinary care is the model clinical guidelines recommend for ALS/MND.”

The UK clinical guideline for MND opens its section on organising care by recommending exactly this model, and adds that the clinic can be community based or hospital based.

Provide coordinated care for people with MND, using a clinic-based, specialist MND multidisciplinary team approach.

1.5.1

✓Supports this

“People diagnosed with ALS/MND are meant to be given one named point of contact for the specialist team.”

The UK guideline makes a single point of contact for the specialist team something to provide at diagnosis, along with information about what to do if concerns come up between appointments. It does not say which profession that person should be.

When MND is diagnosed, provide people with a single point of contact for the specialist MND multidisciplinary team (see section 1.5).

1.2.4

✓Supports this

“Palliative care expertise sits inside the core ALS/MND team rather than being brought in only at the end of life.”

The UK guideline places a professional with palliative care expertise in the core multidisciplinary team, alongside the neurologist and the specialist nurse, and elsewhere asks teams to consider specialist palliative care referral for needs that are anticipated as well as needs that are already there.

A healthcare professional with expertise in palliative care (MND palliative care expertise may be provided by the neurologist or nurse in the multidisciplinary team, or by a specialist palliative care professional).

1.5.4

✓Supports this

“An ALS/MND team is built to cover the main areas the condition affects, and there is a recognised core set of professions.”

The UK clinical guideline names a core team of a neurologist, specialist nurse, dietitian, physiotherapist, occupational therapist, someone able to assess breathing, a speech and language therapist and a professional with palliative care expertise. It separately lists what that team should assess, from swallowing, breathing and communication through to mood and social care needs.

The core multidisciplinary team should consist of healthcare professionals and other professionals with expertise in MND, and should include the following:

1.5.4

Used across the whole answer

iAdds context

“The evidence that multidisciplinary specialist care improves outcomes in ALS/MND is limited: no controlled trials exist, and the observational studies that do suggest a benefit mainly for the mental health side of quality of life.”

The UK clinical guideline recommends the multidisciplinary clinic model for everyone with MND, which is why the answer still encourages getting connected with a team. It recommends the model; it does not state a measured effect on quality of life.

✓Supports this

“Family members and carers are meant to be asked about their own needs as part of team care, not only the person with ALS/MND.”

The UK guideline tells the team to raise the emotional impact of MND with family members and carers during multidisciplinary assessments and to ask what support they need. It separately says carers should be told about their right to a carer assessment.

During multidisciplinary team assessments and other appointments, discuss the psychological and emotional impact of MND with family members and/or carers (as appropriate), and ask whether they have any psychological or social care support needs.

1.6.3

iAdds context

“A multidisciplinary clinic can replace several separate appointments with one visit that covers the whole team.”

The UK guideline asks for regular coordinated assessments at the multidisciplinary team clinic, usually every two to three months, which is the structure that makes one combined visit possible. It says nothing about how tiring separate appointments are.

✓Supports this

“When something changes, contact the team rather than waiting for the next scheduled appointment.”

Requires MND services to be set up so that the person themselves can bring forward an assessment when their symptoms change significantly, rather than waiting for the next routine one. It also says people should be given a single point of contact and told what to do if they have concerns between appointments.

Ensure arrangements are in place to trigger an earlier multidisciplinary team assessment if there is a significant change in symptoms identified by the person, family members and/or carers (as appropriate), or healthcare professionals.

1.5.7

✓Supports this

“Breathlessness, disturbed sleep and morning headaches are signs that breathing may be affected.”

Breathlessness, disturbed sleep and morning headaches are three of the symptoms in the NICE table of symptoms and signs of potential respiratory impairment in MND, which the guideline says should be monitored.

Monitor the symptoms and signs listed in table 1 to detect potential respiratory impairment.

1.15.7

✓Supports this

“The people caring for someone with ALS/MND need support in their own right, not only as part of that person's care.”

Tells MND teams to offer family members and carers information about respite care and about emotional and psychological support in their own right, and separately to advise carers of their right to a carer assessment.

Offer family members and/or carers (as appropriate) information about respite care and sources of emotional and psychological support, including support groups, online forums and counselling or psychology services.

1.6.4

Used across the whole answer

iAdds context

“Because the diagnosis is a clinical judgement assembled from several pieces, it can take a long time to reach.”

Does not describe the diagnostic process itself, but treats a slow or uncertain diagnosis as expected: it tells teams to provide information and support throughout the diagnostic process and singles out periods of uncertainty or delay.

Provide information and support for people and their family members and/or carers (as appropriate) throughout the diagnostic process, particularly during periods of diagnostic uncertainty or delay.

1.1.5

✓Supports this

“An advance care plan only works if the people treating you can find it, so it matters where the documents are kept.”

Lists making sure advance care plans will be available when they are needed, for example by putting the information on the person's summary care record, among the things a team should cover when supporting advance care planning.

✓Supports this

“Recording how you communicate lets staff who do not know you understand you and keep you involved in decisions about your care.”

Says every discussion should be adjusted to the person's communication ability, and separately warns that as MND progresses people may develop communication problems and find it harder to reach services, so they should be given different ways of getting in touch.

Tailor all discussions to the person's needs, taking into account their communication ability, cognitive status and mental capacity.

1.3.3

Used across the whole answer

iAdds context

“Multidisciplinary specialist care, including respiratory support and symptom management, is the cornerstone of ALS/MND treatment and has a positive effect on how people do and on their satisfaction with care.”

Recommends that care be delivered by a clinic-based specialist MND multidisciplinary team, and sets out what that team should assess, including nutrition, swallowing and respiratory function. It is a recommendation about how care should be organised and does not itself say how much difference it makes.

Provide coordinated care for people with MND, using a clinic-based, specialist MND multidisciplinary team approach.

1.5.1

iAdds context

“Where symptoms started and how fast they have changed help a team judge the likely picture, but they do not predict what will happen to one person.”

Names the prognostic factors a team should take into account when planning care: speech and swallowing problems at onset, weight loss, poor respiratory function, older age, a lower functional score and a shorter time from symptoms to diagnosis. It presents them as associated with shorter survival across groups, not as a prediction for one person.

Used across the whole answer

iAdds context

“Saliva that is not cleared can go towards the airway rather than being swallowed.”

Shows that saliva is treated as a breathing matter and not only a swallowing one: when someone has saliva problems, NICE NG42 says to assess their respiratory function alongside the saliva itself.

If a person with MND has problems with saliva, assess the volume and viscosity of the saliva and the person's respiratory function, swallowing, diet, posture and oral care.

1.8.10

Used across the whole answer

✓Supports this

“Humidification is one of the treatments recommended for thick, sticky saliva.”

NICE NG42 recommendation 1.8.15 says to consider treatment with humidification for thick, tenacious saliva, along with nebulisers and carbocisteine.

✓Supports this

“Keeping fluids up is part of the standard management of thick, sticky saliva.”

NICE NG42's recommendation for thick, tenacious saliva (1.8.15) includes giving advice on hydration, alongside swallowing, diet, posture, positioning, oral care and suctioning.

iAdds context

“Medicines given to reduce excess saliva can make thick saliva worse.”

NICE NG42 does not state the link outright. What it does is act on it: recommendation 1.8.15 opens by telling clinicians that someone with thick, tenacious saliva should have all their current medicines reviewed, and especially any treatment they are having for drooling.

Used across the whole answer

iAdds context

“One small trial found that botulinum toxin type B probably reduced measured saliva production at eight weeks in ALS/MND. The evidence on botulinum toxin type A was too uncertain to draw conclusions.”

Shows where this option sits in UK practice: NICE NG42 recommends referral to a specialist service for botulinum toxin A, as either a first or a second treatment to try. That is a practice recommendation, not a trial result, and type A is not the type the trial evidence above covers.

Consider referral to a specialist service for botulinum toxin A for first- or second-line treatment.

1.8.14

iAdds context

“Treatments that dry up saliva can make saliva thicker.”

NICE NG42 does not state the link outright. What it does is act on it: recommendation 1.8.15 says that when someone has thick, tenacious saliva the first step is to review all their current medicines, and especially any treatment they are having for drooling.

iAdds context

“Medicines used to reduce saliva have side effects that have to be weighed against the benefit, and they differ in how much they affect the central nervous system, which is why NICE NG42 suggests a medicine with fewer such effects for people with cognitive impairment.”

Shows that the medicines in this group are not interchangeable on side effects. NICE NG42 has a separate recommendation for people with cognitive impairment precisely because one option has fewer central nervous system side effects. It does not list the side effects themselves.

Consider glycopyrronium bromide as a first-line treatment for sialorrhoea in people with MND who have cognitive impairment, because it has fewer central nervous system side effects.

1.8.13

Used across the whole answer

Used across the whole answer

iAdds context

“A change in saliva after starting a new medicine, including a medicine for saliva, is worth raising.”

NICE NG42 does not tell the reader when to raise it, but it does tell clinicians where to look: recommendation 1.8.15 says that someone with thick, tenacious saliva should have all their current medicines reviewed, and especially any treatment they are having for drooling.

✓Supports this

“Saliva and the airway are connected, so coughing on saliva involves breathing as well as swallowing.”

Treats saliva as a breathing matter as well as a swallowing one: when someone with MND has saliva problems, NICE NG42 says to assess their respiratory function alongside the saliva itself.

If a person with MND has problems with saliva, assess the volume and viscosity of the saliva and the person's respiratory function, swallowing, diet, posture and oral care.

1.8.10

✓Supports this

“A chest infection is one of the reversible causes of worsening breathing in MND, and NICE NG42 tells teams to treat those causes before considering other treatments.”

Names respiratory tract infections as a reversible cause of worsening breathing in MND, and puts treating them ahead of anything else, so a chest infection is dealt with as a breathing problem in its own right rather than as part of the disease taking its course.

Treat people with MND and worsening respiratory impairment for reversible causes (for example, respiratory tract infections or secretion problems) before considering other treatments.

1.13.1

Used across the whole answer

iAdds context

“Treatments that dry up thin saliva can make thick saliva worse.”

NICE NG42 does not state the link outright. What it does is treat it as routine practice: recommendation 1.8.15 says that when someone has thick, tenacious saliva the first step is to review all their current medicines, and especially any treatment they are having for drooling.

✓Supports this

“There is a recognised set of ways to manage saliva problems in ALS/MND, although how well they work varies.”

NICE NG42 sets out a recognised sequence of things to offer for drooling, beginning with practical advice, so there is a defined set of measures to try. It does not say how often they work.

If a person with MND has problems with drooling of saliva (sialorrhoea), provide advice on swallowing, diet, posture, positioning, oral care and suctioning.

1.8.11

Used across the whole answer

✓Supports this

“ALS/MND guidance treats palliative care as part of overall care rather than something left until the very end.”

The UK NICE guideline for MND requires palliative care expertise in the core multidisciplinary team that everyone with MND should have, not only late on, and asks teams to offer a conversation about end of life preferences at trigger points that include diagnosis itself. It is one national guideline rather than a survey of all of them.

A healthcare professional with expertise in palliative care (MND palliative care expertise may be provided by the neurologist or nurse in the multidisciplinary team, or by a specialist palliative care professional).

1.5.4

✓Supports this

“Much palliative care is given by the professionals already looking after you, with specialists brought in when needed.”

The UK NICE guideline for MND says the palliative care expertise every core team needs can come either from the neurologist or nurse already in that team or from a specialist palliative care professional. A separate recommendation asks teams to consider referral to a specialist palliative care team when needs are significant or complex.

A healthcare professional with expertise in palliative care (MND palliative care expertise may be provided by the neurologist or nurse in the multidisciplinary team, or by a specialist palliative care professional).

1.5.4

✓Supports this

“A recorded plan only changes what happens if the people who need it can find it at the time.”

The UK MND guideline treats getting the plan to where it can be found as part of the planning itself, and gives the person's shared electronic health record as its example of how.

How to ensure advance care plans will be available when needed, for example, including the information on the person's Summary Care Record.

1.7.3

iAdds context

“Recording your wishes means they can be known and taken into account if you cannot say them yourself later.”

The UK MND guideline puts this on the care team rather than the person, listing advance decisions to refuse treatment and lasting power of attorney among the things teams should help people with. It is guidance on what should be offered, not evidence about what recording wishes achieves.

Provide support and advice on advance care planning for end of life.

1.7.3

✓Supports this

“Palliative care can be involved early and alongside other care, not only at the end of life.”

The UK MND guideline bases referral on anticipated needs as well as current ones, which is what involving palliative care early means in practice. It also places palliative care expertise inside the MND multidisciplinary team at recommendation 1.5.4, so it sits alongside other care rather than replacing it.

Consider referral to a specialist palliative care team for people with current or anticipated significant or complex needs, for example, psychological or social distress, troublesome or rapidly progressing symptoms and complex future care planning needs.

1.5.11

iAdds context

“Talking about this and recording your wishes before a crisis means they can be known and taken into account.”

The UK MND guideline tells teams to open this conversation at set trigger points, one of which is a significant change in breathing. It is guidance on when clinicians should ask, not evidence about what recording wishes achieves.

Offer the person with MND the opportunity to discuss their preferences and concerns about care at the end of life at trigger points such as: at diagnosis, if there is a significant change in respiratory function, or if interventions such as gastrostomy or non-invasive ventilation are needed.

1.7.1

✓Supports this

“NIV can be stopped at any point. It is the person's decision, not a commitment made once at the start.”

Requires teams to say plainly that NIV can be stopped at any time, and to keep returning to the person's wishes about continuing or withdrawing it as part of the ongoing care plan.

Explain that non-invasive ventilation can be stopped at any time.

1.15.5

✓Supports this

“If someone using NIV continuously wants to stop, the guideline requires that they have support from professionals with expertise in stopping ventilation, in the ventilator machine, and in palliative medicines.”

Where a person is on continuous non-invasive ventilation and wishes to stop, requires teams to ensure support from professionals with expertise in stopping ventilation, in the ventilator machine, in palliative medicines, and in supporting the person, family and carers. Its palliative-medicines bullet cross-refers to the NICE guideline on care of dying adults in the last days of life.

If a person on continuous non-invasive ventilation wishes to stop treatment, ensure that they have support from healthcare professionals with knowledge and expertise of

1.15.29

✓Supports this

“Getting used to the mask while awake during the day, before using it to sleep, is the standard way NIV is introduced.”

Sets out this exact sequence for starting NIV: acclimatise during the day while the person is awake, then usually begin regular treatment at night, and build the hours of use up gradually.

Supports a claim in this answer

Lung function (FVC) and sniff or mouth pressure tests are used to assess respiratory muscle weakness in MND

✓Supports this

“The decision to try NIV rests on symptoms and signs together with the breathing test results, not on a test result alone.”

Makes the trigger for offering a trial of NIV the person's symptoms and signs and the respiratory function test results taken together, and asks teams to judge from those whether the person is likely to benefit.

Offer a trial of non-invasive ventilation if the person's symptoms and signs and the results of the respiratory function tests indicate that the person is likely to benefit from the treatment.

1.15.17

iAdds context

“NIV is normally started for night-time use, because weakened breathing tends to affect gas exchange during sleep first.”

Its instruction for starting NIV is to acclimatise during the day while the person is awake, then usually begin regular treatment at night, before and during sleep. It sets out the practice without giving the reason behind it.

✓Supports this

“Getting used to the mask while awake during the day, before using it to sleep, is the standard way NIV is introduced.”

Sets out this exact sequence for starting NIV: acclimatise during the day while the person is awake, then usually begin regular treatment at night, and build the hours of use up gradually.

iAdds context

“NIV is usually started for night-time use, because weakened breathing tends to affect gas exchange at night first.”

Its instruction for starting NIV is to acclimatise during the day while the person is awake, then usually begin regular treatment at night, before and during sleep. It sets out the practice without giving the reason behind it.

✓Supports this

“Teams are advised to open the conversation about NIV early, rather than waiting until breathing is badly affected.”

Says the possible use of NIV should be offered for discussion at an appropriate time, and lists soon after MND is first diagnosed, while respiratory function is being monitored, and when it deteriorates, so the conversation is not held back until breathing is failing.

Offer to discuss the possible use of non-invasive ventilation with the person and (if the person agrees) their family and carers, at an appropriate time and in a sensitive manner.

1.15.1

✓Supports this

“These symptoms are the ones teams are told to monitor for in order to detect possible respiratory impairment.”

Tells teams to monitor a listed set of symptoms and signs so that respiratory impairment is picked up. Its table 1 covers the ones listed here: breathlessness, breathlessness lying flat, disturbed and unrefreshing sleep, daytime sleepiness, morning headaches and fatigue.

Monitor the symptoms and signs listed in table 1 to detect potential respiratory impairment.

1.15.7

Used across the whole answer

✓Supports this

“ALS/MND care is normally organised as coordinated, clinic-based multidisciplinary care rather than as separate services working alone.”

Recommends coordinated care through a clinic-based specialist MND multidisciplinary team, which may be community or hospital based, and asks that team to ensure effective communication and coordination between everyone involved in the person's care.

Provide coordinated care for people with MND, using a clinic-based, specialist MND multidisciplinary team approach.

1.5.1

✓Supports this

“Occupational therapy and palliative care expertise belong to the core MND team rather than being services added only later on.”

Lists an occupational therapist, and a healthcare professional with expertise in palliative care, among the members the core MND multidisciplinary team should include, alongside the neurologist, specialist nurse, dietitian, physiotherapist, speech and language therapist and a professional who can assess breathing.

Used across the whole answer

✓Supports this

“The respiratory team is expected to explain the cough and breathing support options, including their downsides, so you can weigh them.”

Asks the team to explain the different ways of managing breathlessness, including breathing support and its advantages and disadvantages. Separately it says cough augmentation techniques should be offered to people whose cough is not effective.

When discussing non-invasive ventilation, explain the different ways that people can manage their breathlessness symptoms.

1.15.3

✓Supports this

“Respiratory expertise is a standard part of specialist ALS/MND care, not something added on later.”

Puts a respiratory physiologist, or another professional who can assess respiratory function, in the core multidisciplinary team for MND. It also says that team should have an established relationship with, and prompt access to, respiratory ventilation services.

✓Supports this

“Continuing to monitor, with nothing else changing, is a normal and expected outcome of a respiratory appointment.”

Makes ongoing monitoring the routine rather than the exception. It says to assess and monitor respiratory function and symptoms, and to repeat the breathing tests roughly every two to three months, more or less often depending on symptoms, how fast MND is progressing, and what the person prefers.

Assess and monitor the person's respiratory function and symptoms.

1.13.1

✓Supports this

“Not every breathing test is suitable for everyone, and some are left out if the mouthpiece or mask does not suit the person.”

Says that where someone has severe bulbar impairment, or severe cognitive problems that may be related to their breathing, oxygen saturation should still be measured but the other breathing tests should not be performed if the mouthpiece or mask is not suitable for them.

✓Supports this

“Some results lead to quicker action rather than continued monitoring, including urgent referral to a ventilation service where blood carbon dioxide is raised, and urgent introduction of breathing support where respiratory impairment is worsening.”

Sets out an urgent route out of the same appointment. Where the carbon dioxide level in the blood is raised, it says to refer the person urgently to a respiratory ventilation service, to be seen within one week.

refer them urgently to a respiratory ventilation service (to be seen within 1 week)

1.15.13

✓Supports this

“Some results lead to quicker action rather than continued monitoring, including urgent referral to a ventilation service where blood carbon dioxide is raised, and urgent introduction of breathing support where respiratory impairment is worsening.”

Asks the team to consider starting breathing support urgently, rather than at the next planned review, where someone's respiratory impairment is getting worse and they are not already using it.

Consider urgent introduction of non-invasive ventilation for people with MND who develop worsening respiratory impairment and are not already using non-invasive ventilation.

1.13.3

✓Supports this

“Where a respiratory referral is urgent, the team is expected to say so and to explain the reasons for it and what it means.”

Attaches an explanation duty to the urgent route: alongside referring the person urgently, the team is asked to explain the reasons for the urgent referral and what it means for them.

explain the reasons for and implications of the urgent referral

1.15.13

✓Supports this

“The breathing checks at a respiratory appointment measure the oxygen level in the blood and how strongly the breathing muscles can draw air in.”

Sets out the tests used to establish and follow respiratory function in MND: oxygen saturation measured by pulse oximetry, then forced or slow vital capacity and sniff nasal or maximal inspiratory pressure, which are measures of the strength of the breath drawn in.

Used across the whole answer

✓Supports this

“Breathlessness, and breathlessness that is worse when lying flat, are recognised signs of possible breathing muscle weakness in MND.”

Lists breathlessness and orthopnoea, which is breathlessness on lying flat, in its table of symptoms and signs of possible respiratory impairment to monitor for. Orthopnoea is then singled out as the symptom that should prompt referral for overnight oximetry or a sleep study.

Monitor the symptoms and signs listed in table 1 to detect potential respiratory impairment.

1.15.7

!Qualifies this

“Referral to a respiratory service is usually routine and planned rather than a sign that something has gone wrong.”

Most of the respiratory referral it describes is routine and planned. Not all of it is: it also sets out urgent routes, including referral to be seen within one week when carbon dioxide in the blood is raised, and urgent introduction of breathing support when respiratory impairment is worsening.

Consider urgent introduction of non-invasive ventilation for people with MND who develop worsening respiratory impairment and are not already using non-invasive ventilation.

1.13.3

✓Supports this

“Disturbed or unrefreshing sleep and morning headaches are recognised signs that breathing may be weaker overnight.”

Includes disturbed sleep, non-refreshing sleep and morning headaches in its table of symptoms of possible respiratory impairment. It says sleep-related respiratory symptoms should prompt considering referral to a respiratory ventilation service for overnight oximetry or a limited sleep study.

✓Supports this

“A smaller number of respiratory referrals are urgent, and the team should say that the referral is urgent and explain the reasons for it.”

Sets out an urgent route alongside the routine ones. Where the carbon dioxide level in the blood is raised, it says to refer the person urgently, to be seen within one week, and to explain to them why the referral is urgent and what it means.

refer them urgently to a respiratory ventilation service (to be seen within 1 week) and explain the reasons for and implications of the urgent referral

1.15.13

Used across the whole answer

!Qualifies this

“How often breathing is checked varies from person to person, rather than following one fixed schedule for everyone.”

Agrees that the interval varies, and names the three things it varies with: whether there are symptoms and signs of breathing problems, how fast MND is progressing, and the person's own preference and circumstances. It also gives a usual starting point of every 2 to 3 months, which this answer does not mention.

✓Supports this

“Guidelines put the usual interval for respiratory function tests at about every 2 to 3 months, varied according to symptoms and signs, how fast MND is progressing, and the person's own preference.”

Recommends the tests every 2 to 3 months and names the three things that move the interval: symptoms and signs of respiratory impairment, the rate of progression, and the person's preference and circumstances.

perform the respiratory function tests every 2 to 3 months, although tests may be performed more or less often

1.15.10

Used across the whole answer

✓Supports this

“Breathing problems in MND announce themselves as ordinary day-to-day symptoms, and monitoring for those symptoms is part of standard care.”

Sets out a table of the symptoms and signs to monitor for, and it is close to this answer's list: breathlessness, breathlessness lying flat, recurrent chest infections, disturbed and unrefreshing sleep, daytime sleepiness, morning headaches, fatigue and a weak cough.

Monitor the symptoms and signs listed in table 1 to detect potential respiratory impairment.

1.15.7

iAdds context

“A chest infection that is not clearing, or feeling unusually unwell with your breathing, should be raised with the team promptly rather than saved for the next appointment.”

Explains why an infection matters so much here. It instructs teams to look for and treat reversible causes such as chest infections first, before treating worsening breathing as progression.

Treat people with MND and worsening respiratory impairment for reversible causes (for example, respiratory tract infections or secretion problems) before considering other treatments.

1.13.1

Supports a claim in this answer

Lung function (FVC) and sniff or mouth pressure tests are used to assess respiratory muscle strength in MND; overnight oximetry and CO2 monitoring detect night-time breathing changes

✓Supports this

“A blood gas test is done only when particular conditions are met, not as one of the routinely repeated checks.”

Treats blood gas analysis as conditional rather than routine: it is done when oxygen saturation measured at rest on room air falls to or below 92 per cent for someone with known lung disease, or 94 per cent for someone without. The tests repeated every 2 to 3 months are the lung function and muscle strength ones.

✓Supports this

“Breathing tests are repeated at intervals so the team can follow the direction of travel rather than judge a single reading.”

Recommends that respiratory function tests are performed about every 2 to 3 months, more or less often depending on symptoms and signs, how fast MND is progressing, and what the person prefers. Repeating the tests is the recommendation, not an option.

Used across the whole answer

✓Supports this

“When a lung function or breathing-muscle strength result reaches a level NICE lists, the recommended next step is a discussion of the respiratory impairment, the treatment options and possible referral for further assessment.”

At 1.15.15 the trigger is the table 2 results: lung function (FVC or VC) and breathing-muscle strength (SNIP or MIP). There the instruction is to discuss the respiratory impairment, treatment options and possible referral, guided by the person's wishes. It covers those results only. Other thresholds are not discussions: 1.15.13 requires an urgent referral if carbon dioxide is raised.

If any of the results listed in table 2 is obtained, discuss with the person and (if appropriate) their family and carers

1.15.15

✓Supports this

“If arterial carbon dioxide is above 6 kPa, NICE tells the team to refer the person urgently to a respiratory ventilation service, to be seen within one week, and to explain the reasons for the urgency.”

Sets this out as a defined, time-limited step rather than something to weigh up: above 6 kPa the referral is urgent and the person should be seen within a week, and the team must explain the reasons for it and what it means.

refer them urgently to a respiratory ventilation service (to be seen within 1 week)

1.15.13

✓Supports this

“A breathing result is interpreted together with the person's symptoms, not on its own.”

Builds symptoms into the thresholds themselves. A lung function result that is not low enough to act on alone still counts once there are symptoms or signs of breathing problems, particularly breathlessness lying flat, and a normal carbon dioxide level with symptoms still leads to an overnight study.

Used across the whole answer

iAdds context

“Breathing is checked regularly so that changes are picked up early, often before the person notices anything.”

Recommends monitoring respiratory function and symptoms as routine MND care, and sets a usual testing interval of every 2 to 3 months. It establishes that checks are regular, not that they catch changes early.

Assess and monitor the person's respiratory function and symptoms.

1.13.1

Background the team read

Used across the whole answer

!Qualifies this

“Where secretions are thick, a care team usually reviews the medicines already being taken first, because some medicines given for drooling can thicken secretions, and may then consider treatments that help thin them.”

NICE puts reviewing current medicines first, ahead of adding anything: where saliva is thick and tenacious, review all current medicines, especially any treatment for drooling, then advise on hydration and other measures, and only then consider humidification, nebulisers and carbocisteine. Note the scope: it is written about thick saliva, not chest mucus.

If a person with MND has thick, tenacious saliva: review all current medicines, especially any treatments for sialorrhoea

1.8.15

iAdds context

“Where secretions are thick, a care team usually reviews the medicines already being taken first, because some medicines given for drooling can thicken secretions, and may then consider treatments that help thin them.”

This is the medicine the review step is aimed at. NICE recommends trying an antimuscarinic medicine first for drooling, and antimuscarinics work by drying secretions, which is why a team checks them when secretions have turned thick.

Consider a trial of an antimuscarinic medicine as a first-line treatment for sialorrhoea in people with MND.

1.8.12

✓Supports this

“Thick secretions and too much thin saliva are different problems and are managed in different ways.”

NICE gives them separate recommendations that pull in opposite directions. For drooling it advises the measures quoted here and a drying medicine. Where saliva is thick and tenacious it advises reviewing the drying medicines first, then hydration, humidification and nebulisers. Note that NICE frames the thick side as saliva rather than as mucus from the chest.

If a person with MND has problems with drooling of saliva (sialorrhoea), provide advice on swallowing, diet, posture, positioning, oral care and suctioning.

1.8.11

Used across the whole answer

✓Supports this

“The UK guideline recommends considering a cough assist device during a chest infection. Randomised trials up to 2020 had not measured whether it changes how infections turn out, though other studies report fewer hospital admissions and longer survival for cough support with non-invasive ventilation.”

NICE, the UK guideline, recommends considering a cough assist device during a respiratory tract infection, which is the practice half of this sentence. Other countries may set this out differently.

Consider a mechanical cough assist device if assisted breath stacking is not effective, and/or during a respiratory tract infection.

1.14.4

!Qualifies this

“How often a cough assist device is used varies. Some people are advised to use it every day as a routine, and others mainly when the chest is congested or during a chest infection.”

NICE names a chest infection as a time to consider the device. It adds a condition the answer leaves out: the device is considered after assisted breath stacking has been tried and has not worked. It says nothing about how often to use it.

Consider a mechanical cough assist device if assisted breath stacking is not effective, and/or during a respiratory tract infection.

1.14.4

Used across the whole answer

!Qualifies this

“A cough assist device is one of several ways to help clear the airway, and the approaches are often combined.”

NICE agrees there are several options but sets them out as an order rather than a free choice. Breath stacking and manual assisted cough come first, with a machine considered only if assisted breath stacking is not working or during a chest infection.

Consider unassisted breath stacking and/or manual assisted cough as the first-line treatment for people with MND who have an ineffective cough.

1.14.2

Used across the whole answer

✓Supports this

“A breathing test can measure how forceful a cough is, and show when it has become too weak to clear the airway.”

NICE lists a weak cough among the signs of possible respiratory impairment that should be monitored, and names the test used to check it.

Weak cough could be assessed by measuring peak cough flow.

1.15.7

✓Supports this

“In the UK guideline, a cough assist device is considered after assisted breath stacking has not been effective, or during a chest infection.”

NICE places the machine at the top of a stepped sequence. It recommends considering a mechanical cough assist device once assisted breath stacking has not worked, or during a chest infection.

Consider a mechanical cough assist device if assisted breath stacking is not effective, and/or during a respiratory tract infection.

1.14.4

iAdds context

“In the UK guideline, a cough assist device is considered after assisted breath stacking has not been effective, or during a chest infection.”

The step in between. Where there is bulbar involvement, or unassisted breath stacking has not worked, NICE recommends assisted breath stacking, for example with a lung volume recruitment bag, before the machine is considered.

For people with bulbar dysfunction, or whose cough is ineffective with unassisted breath stacking, consider assisted breath stacking (for example, using a lung volume recruitment bag).

1.14.3

✓Supports this

“Cough support is considered when the cough is no longer effective at clearing the airway, rather than at a set point in the illness. In the UK guideline this trigger opens the first-line techniques.”

NICE ties cough support to the state of the cough itself. It recommends offering cough augmentation to people with MND who cannot cough effectively, and does not set a stage or a date. Note the scope: the techniques it names here are the manual ones, not a machine.

Offer cough augmentation techniques such as manual assisted cough to people with MND who cannot cough effectively.

1.14.1

!Qualifies this

“Cough support is considered when the cough is no longer effective at clearing the airway, rather than at a set point in the illness. In the UK guideline this trigger opens the first-line techniques.”

The next recommendation says what an ineffective cough actually triggers first. It is the unassisted, hands-on options, not the cough assist device this card is about.

Consider unassisted breath stacking and/or manual assisted cough as the first-line treatment for people with MND who have an ineffective cough.

1.14.2

Used across the whole answer

iAdds context

“Sleep is where breathing changes in ALS/MND tend to show up first, which is why an overnight recording is used to look for them.”

Shows the same thing from the clinic side. NICE has teams consider an overnight oxygen recording or a limited sleep study for someone whose daytime oxygen level at rest is still normal but who has sleep-related breathing symptoms, so sleep is where it looks when daytime measurements are unremarkable.

!Qualifies this

“Breathing support is offered as an option to think about, not something that follows automatically from a sleep study result.”

NICE treats breathing support as a discussion, and asks teams to check the person has enough information to decide how and when to use it. It also tells teams to offer non-invasive ventilation to anyone with breathing impairment, and to consider starting it urgently if breathing worsens. So the decision stays the person's, but raising it is not optional for the team.

Offer to discuss the possible use of non-invasive ventilation with the person and (if the person agrees) their family and carers, at an appropriate time and in a sensitive manner.

1.15.1

✓Supports this

“If a sleep study shows breathing is less effective overnight, the team may raise breathing support as something to consider.”

NICE joins these two steps directly. It sends people with breathing symptoms for an overnight oxygen recording or a limited sleep study, and pairs that referral with a discussion of what the breathing impairment means and what the treatment options are. Non-invasive ventilation is the treatment it says should be offered where breathing is impaired.

Offer non-invasive ventilation as treatment for people with respiratory impairment (see section 1.15).

1.13.2

Used across the whole answer

✓Supports this

“Everyday symptoms such as morning headaches, unrefreshing sleep and daytime tiredness can be signs that night-time breathing is worth checking.”

NICE has teams watch for a specific list of symptoms as possible signs of breathing impairment in MND, and that list contains every symptom this answer names. Elsewhere in the same guideline, sleep-related breathing symptoms are what trigger a referral for an overnight oxygen recording or a limited sleep study.

Monitor the symptoms and signs listed in table 1 to detect potential respiratory impairment.

1.15.7

Used across the whole answer

✓Supports this

“Day-to-day ALS/MND care is guided by clinical assessment and by tests such as breathing measures.”

The UK MND guideline describes exactly this. Recommendation 1.5.3 lists what the team should assess and review at each appointment, and 1.15.10 says breathing tests should be done every 2 to 3 months, more or less often depending on symptoms and how fast the condition is progressing.

✓Supports this

“For most people, ALS/MND is monitored by repeated clinical assessment from their care team.”

The UK guideline for MND builds monitoring entirely around repeated assessment by the multidisciplinary team, and lists the areas that team should assess and review, from swallowing and muscle problems to breathing and cognition. It recommends no biomarker test anywhere in its recommendations.

Ensure that all healthcare professionals and social care practitioners involved in the person's care are aware that MND symptoms may get worse quickly, and that people with MND will need repeated, ongoing assessments.

1.5.10

iAdds context

“Your ALS/MND team or neurologist is a starting point for finding registries and studies, and may run studies you can join.”

Lists opportunities for people with MND to be involved in research among the things the neurologist giving the diagnosis should have up to date knowledge and expertise in. That is a reason to ask them, but the guideline says nothing about registries specifically and nothing about what exists in a particular area.

✓Supports this

“Knowing what research opportunities exist is part of what a neurologist looking after someone with MND is expected to bring, which is why the team is a sensible place to start.”

The UK MND guideline lists opportunities for people with MND to be involved in research among the things the consultant neurologist giving the diagnosis should have up to date knowledge and expertise in. No quote: the guideline states it as a bullet fragment rather than a sentence.

Used across the whole answer

✓Supports this

“Weight and nutrition are checked as a standing part of ALS/MND care, not only when a problem appears.”

The UK MND guideline makes weight and nutrition a standing item. Recommendation 1.11.1 has teams assess weight, diet, nutritional intake, fluid intake, feeding, drinking and swallowing at diagnosis, at every multidisciplinary team assessment, and whenever a concern comes up, and offer support and interventions as needed. Recommendation 1.5.3 puts the same areas on the team's regular review list.

Used across the whole answer

iAdds context

“When swallowing is changing, which textures are safe should be decided by a speech pathologist rather than worked out at home.”

The UK MND guideline requires a clinical swallowing assessment whenever swallowing problems are suspected, and puts modifying the consistency of food and drink among the things to assess and manage afterwards. It does not name which profession does the assessment, so it backs the referral rather than the job title.

Arrange for a clinical swallowing assessment if swallowing problems are suspected.

1.11.4

✓Supports this

“Which food textures are safe depends on the person's swallowing, so it is assessed rather than assumed.”

The UK MND guideline treats food and drink texture as part of managing a swallowing problem. Recommendation 1.11.5 puts the need to modify food and drink consistency and palatability among the factors to assess and manage, alongside positioning, seating and the risk of aspiration and choking, and 1.11.4 sends anyone with suspected swallowing problems for a clinical swallowing assessment first.

Used across the whole answer

✓Supports this

“Teams raise a feeding tube early partly because placing one late carries more risk, including respiratory complications and a higher risk of complications from the procedure itself.”

The UK MND guideline tells teams to explain both sides of the timing: the benefits of placing a gastrostomy early, and the risks of leaving it late, which it lists as including respiratory complications and a higher risk of complications from the procedure itself.

Explain the benefits of early placement of a gastrostomy, and the possible risks of a late gastrostomy (for example, low critical body mass, respiratory complications, risk of dehydration, different methods of insertion, and a higher risk of mortality and procedural complications).

1.11.7

✓Supports this

“Nutrition support in ALS/MND is normally offered early and revisited over time, rather than held back until eating is difficult.”

The UK MND guideline starts nutrition support at diagnosis rather than at crisis point. Recommendation 1.11.1 has teams assess weight, diet, intake and swallowing at diagnosis and at every multidisciplinary team assessment and offer support as needed, and 1.11.6 has them discuss a gastrostomy at an early stage and then at regular intervals.

✓Supports this

“UK guidelines say the gastrostomy conversation should start at an early stage and be repeated at regular intervals as MND progresses, taking into account the person's ability to swallow, weight loss, respiratory function, the effort of feeding and drinking, and the risk of choking.”

Recommendation 1.11.6 sets both the timing and the full list of things the gastrostomy conversation should take into account: ability to swallow, weight loss, respiratory function, the effort of feeding and drinking, and the risk of choking. It is a conversation to start at an early stage and repeat at regular intervals as MND progresses, not one held back until eating is difficult.

Discuss gastrostomy at an early stage, and at regular intervals as MND progresses, taking into account the person's preferences and issues, such as ability to swallow, weight loss, respiratory function, effort of feeding and drinking and risk of choking.

1.11.6

Used across the whole answer

Supports a claim in this answer

Maintaining weight and good nutrition is an important part of MND care; weight loss present at diagnosis is among the prognostic factors associated with shorter survival

✓Supports this

“The UK MND guideline lists weight loss present at diagnosis among the prognostic factors associated with shorter survival, and asks teams to take those factors into account when planning care.”

Recommendation 1.4.1 lists weight loss among six prognostic factors associated with shorter survival, and scopes that association to factors present at diagnosis. It is a baseline marker used for care planning: not a claim about weight lost later in the illness, and not a claim that preventing weight loss changes the disease.

When planning care take into account the following prognostic factors, which are associated with shorter survival if they are present at diagnosis

1.4.1

✓Supports this

“When swallowing changes, mealtimes can become stressful and socially difficult, not only a nutrition problem.”

NICE treats the psychological and social side of eating in MND as something the team has to address. Recommendation 1.11.5 names fear of choking and psychological considerations, giving the example of wanting to eat and drink without assistance in social situations, and 1.11.3 says the assessment of someone's ability to eat and drink should cover dealing with social situations such as eating out.

Used across the whole answer

✓Supports this

“Swallowing changes matter for two reasons: whether food and drink go down the right way, and whether you can keep eating enough.”

At recommendation 1.11.1 NICE tells MND teams to assess weight, diet, nutritional intake, feeding, drinking and swallowing together whenever there is any concern about any of them. Recommendation 1.11.5 covers the other half: it names the risk of aspiration and choking among the factors to assess and manage when swallowing is a problem.

iAdds context

“Swallowing is not affected in the same way or at the same time for everyone. For some people it is an early change, for others it comes later or stays mild.”

NICE lists speech or swallowing problems among the isolated symptoms MND can first present with, which is why swallowing is an early change for some people. It says nothing about how the pattern varies for everyone else, so it does not cover the rest of this sentence.

Be aware that MND causes progressive muscular weakness that may first present as isolated and unexplained symptoms.

1.1.2

Used across the whole answer

✓Supports this

“A speech pathologist can change food and drink textures, posture and swallowing technique to reduce the risk of things going the wrong way.”

NICE tells MND teams to assess and manage the factors behind swallowing problems and names the same three: positioning, seating, and the need to modify food and drink consistency and palatability, alongside the risk of aspiration and choking.

✓Supports this

“A chest infection matters more when swallowing or breathing are already affected by ALS/MND, so it is worth getting checked promptly.”

NICE tells teams to treat people with MND and worsening breathing for reversible causes such as a respiratory tract infection before considering other treatments, and its table of signs of respiratory impairment includes recurrent chest infections. Recommendation 1.11.5 links swallowing problems to respiratory symptoms and the risk of aspiration.

Treat people with MND and worsening respiratory impairment for reversible causes (for example, respiratory tract infections or secretion problems) before considering other treatments.

1.13.1

Used across the whole answer

✓Supports this

“Changing drink thickness or food texture is an individual clinical decision that should follow a swallowing assessment.”

NICE puts the need to modify food and drink consistency among the factors an MND team should assess and manage in a person with swallowing problems, alongside positioning and seating and the risk of aspiration and choking (recommendation 1.11.5). It treats a texture change as something that follows an assessment.

Arrange for a clinical swallowing assessment if swallowing problems are suspected.

1.11.4

Used across the whole answer

Used across the whole answer

✓Supports this

“In ALS/MND it is usually helpful to see a speech pathologist early, before swallowing is clearly a problem.”

At recommendation 1.11.1 NICE tells MND teams to assess feeding, drinking and swallowing at diagnosis and at every multidisciplinary team assessment, not only once something has gone wrong, and to offer support, advice and interventions as needed. The quoted recommendation sets the threshold for a full assessment at suspicion, not at a confirmed problem.

Arrange for a clinical swallowing assessment if swallowing problems are suspected.

1.11.4

iAdds context

“In many ALS/MND clinics a speech pathologist is already part of the regular team, so a special request is often not needed.”

NICE says the core multidisciplinary team for MND should include a speech and language therapist, and that the team should carry out coordinated assessments at the clinic, usually every 2 to 3 months. That is the model many MND clinics follow, but the guideline sets out what should be provided in the UK rather than recording how clinics elsewhere are actually staffed.

✓Supports this

“Equipment and adaptive aids are a standard part of ALS/MND care for everyday activities such as eating, dressing, washing and jobs around the home.”

NICE NG42 covers exactly this list. It tells teams to assess and anticipate daily living needs across personal care, dressing and bathing, housework, shopping, food preparation, and eating and drinking, and then to provide the equipment without waiting. NICE frames the purpose as taking part in daily life and keeping quality of life, rather than as saving effort.

Provide equipment and adaptations that meet the person's needs without delay, so that people can participate in activities of daily living and maintain their quality of life as much as possible.

Recommendation 1.10.2

✓Supports this

“An occupational therapist assesses how you manage everyday activities and recommends equipment matched to your own needs.”

Sets out what this assessment covers: personal care, dressing and bathing, housework, shopping, food preparation, eating and drinking, work, mobility and loss of dexterity, the home, and assistive technology. It names occupational therapists among the professionals who should carry it out.

Healthcare professionals and social care practitioners, which will include physiotherapists and occupational therapists, should assess and anticipate changes in the person's daily living needs, taking into account the following:

1.10.1

✓Supports this

“The right adaptive tool can let someone carry on doing everyday activities such as eating, dressing and washing for themselves.”

Tells services to provide equipment and adaptations promptly so people can take part in everyday activities. The daily living needs it lists include personal care, dressing and bathing, and eating and drinking.

Provide equipment and adaptations that meet the person's needs without delay, so that people can participate in activities of daily living and maintain their quality of life as much as possible.

1.10.2

✓Supports this

“What helps now may stop being the right fit as needs change, so equipment is worth reviewing over time.”

Asks for ongoing monitoring of daily living needs as MND progresses, and for the person's ability to use their equipment to be reviewed and the equipment changed to match.

Regularly review their ability to use equipment and to adapt equipment as necessary.

1.10.6

!Qualifies this

“Ordinary consumer technology, including voice assistants and smart-home controls, can work as an accessible aid.”

Treats control of the home environment as specialist assistive technology, and says someone who needs it should be referred to a specialist service and assessed promptly. Off-the-shelf technology is worth trying, but it does not replace that assessment where controlling the home is the real need.

Refer people to specialist services without delay if assistive technology such as environmental control systems is needed.

1.10.3

✓Supports this

“Your ALS/MND team can refer you to an occupational therapist and make sure equipment works together with the rest of your care.”

Puts an occupational therapist in the core MND multidisciplinary team, so the referral route runs through the team, and it asks the services that provide equipment to liaise so the separate pieces work together.

Healthcare professionals, social care practitioners and other services providing equipment should liaise to ensure that all equipment provided can be integrated, for example, integrating AAC aids and devices and environmental control systems with wheelchairs.

1.10.7

!Qualifies this

“The occupational therapist is usually the person who assesses your needs, recommends the right tools and helps you get hold of them.”

Does not single out the occupational therapist. It gives the assessment of daily living needs to healthcare professionals and social care practitioners together, naming physiotherapists alongside occupational therapists, so who leads can vary with the service you are under.

Healthcare professionals and social care practitioners, which will include physiotherapists and occupational therapists, should assess and anticipate changes in the person's daily living needs, taking into account the following:

1.10.1

✓Supports this

“Intimacy and sexuality are recognised topics to raise with an ALS/MND care team.”

The list of things the MND team should raise at assessments and appointments includes sexuality and intimacy, and changes in relationships and family roles. It is a subject the team is expected to bring up, not one a person has to justify raising.

During multidisciplinary team assessments and other appointments, discuss the psychological and emotional impact of MND with the person and ask whether they have any psychological or support care needs.

1.6.1

✓Supports this

“Many ALS/MND teams and clinics either include psychological support or can refer you to it.”

Puts referral to counselling or psychology services in the hands of the MND team, alongside offering information about emotional support, support groups and online forums.

If needed, refer the person to counselling or psychology services for a specialist assessment and support.

1.6.2

!Qualifies this

“Palliative care teams provide emotional as well as physical support, and can be involved at any stage rather than only near the end of life.”

Agrees that psychological distress is a reason to involve specialist palliative care, but frames referral around significant or complex needs rather than as open to everyone at every stage.

Consider referral to a specialist palliative care team for people with current or anticipated significant or complex needs, for example, psychological or social distress, troublesome or rapidly progressing symptoms and complex future care planning needs.

1.5.11

✓Supports this

“There is professional emotional and psychological support aimed at carers and family members in their own right.”

Tells MND teams to offer family members and carers information about emotional and psychological support in their own right, including counselling and psychology services.

Offer family members and/or carers (as appropriate) information about respite care and sources of emotional and psychological support, including support groups, online forums and counselling or psychology services.

1.6.4

✓Supports this

“Trouble sleeping, eating or concentrating can come from ALS/MND symptoms as well as from mood, including changes in breathing, and should be raised with the GP or care team.”

Table 1, the list NG42 tells teams to monitor for potential respiratory impairment, includes disturbed sleep, non-refreshing sleep, daytime sleepiness, poor concentration and/or memory, morning headaches, fatigue and poor appetite alongside breathlessness. That is why this symptom cluster warrants a breathing check and not only a mood one.

Monitor the symptoms and signs listed in table 1 to detect potential respiratory impairment.

1.15.7

iAdds context

“People with MND commonly worry about the effect of their illness on the people caring for them.”

NICE's MND guideline lists concerns about their family members and carers among the things a team should raise with the person who has MND, which shows the worry is expected often enough to be built into routine care. It does not say how many people feel it, and it says nothing about whether they would prefer their carer to have support.

✓Supports this

“Where someone uses non-invasive ventilation, NICE says the service should provide the person and their family or carers with support and assistance to manage it, and that this should include training on using the ventilator and its interfaces.”

NICE's MND guideline makes support and training for family and carers part of providing non-invasive ventilation rather than an optional extra. The recommendation sets out what it should cover, including emergency procedures, night-time help if the person cannot remove or replace the interface themselves, what to do if the equipment fails, and help with secretions.

Provide the person and their family and/or carers (as appropriate) with support and assistance to manage non-invasive ventilation.

1.15.23

iAdds context

“Support from people who understand caring reduces isolation and provides emotional support.”

NICE's MND guideline says teams should offer carers information about emotional and psychological support, including support groups, online forums and counselling or psychology services. It establishes that this support should be offered, rather than what it achieves.

Offer family members and/or carers (as appropriate) information about respite care and sources of emotional and psychological support, including support groups, online forums and counselling or psychology services.

1.6.4

✓Supports this

“Where someone uses non-invasive ventilation, NICE says the service should provide the person and their family or carers with support and assistance to manage it, and that this should include training on using the ventilator and its interfaces.”

NICE's MND guideline makes support and training for family and carers part of providing non-invasive ventilation rather than an optional extra. The recommendation sets out what it should cover, including emergency procedures, night-time help if the person cannot remove or replace the interface themselves, what to do if the equipment fails, and help with secretions.

Provide the person and their family and/or carers (as appropriate) with support and assistance to manage non-invasive ventilation.

1.15.23

iAdds context

“Regular breaks, from short ones through to longer respite care, help caregivers keep going.”

The UK MND guideline treats respite as part of what carers should be told about, alongside emotional and psychological support. It recommends offering the information rather than making any claim about how well respite works.

Offer family members and/or carers (as appropriate) information about respite care and sources of emotional and psychological support, including support groups, online forums and counselling or psychology services.

1.6.4

✓Supports this

“You should know who your points of contact are in the ALS/MND team and what to call each of them about.”

Recommends that services make sure people have more than one way of reaching support and a named person to contact, because getting through becomes harder as MND affects communication. It is framed as something services should provide, so it is reasonable to ask for it.

Ensure people are given different ways of getting in touch with support or services, and a designated contact if possible.

1.6.6

✓Supports this

“Helping a family find and get to the services they need is part of a social care practitioner's job.”

Sets out this role directly. A social care practitioner who knows MND should talk through what the person needs and prefers, then give them the information and support to get personal care, equipment, financial advice, help to stay socially active, and respite.

iAdds context

“Whose help someone accepts matters, and it matters most for personal care.”

The guideline singles out personal care as the place where who does it matters, and asks for continuity so that it is done wherever possible by workers the person and their family already know. That is about familiar workers rather than about the person's own preferences, so it is background rather than the basis for this sentence.

✓Supports this

“How care is organised should follow the wishes and preferences of the person with ALS/MND.”

The UK MND guideline starts the arrangement of care from the person's own needs and preferences: a social care practitioner who knows MND should discuss those first, and then help the person get the personal care, equipment, money advice, social support and respite they want.

✓Supports this

“Carers should be offered information about respite care, so asking a team what respite exists is a reasonable request.”

The UK MND guideline makes respite information something teams should offer carers rather than something carers have to think to ask for, alongside information about emotional and psychological support.

Offer family members and/or carers (as appropriate) information about respite care and sources of emotional and psychological support, including support groups, online forums and counselling or psychology services.

1.6.4

✓Supports this

“Your ALS/MND team is expected to point you toward sources of emotional support, including peer support groups and online forums.”

The UK MND guideline puts this on the clinical team: it tells them to offer people information about where emotional and psychological support can be found, and names support groups and online forums as part of that.

Offer the person information about sources of emotional and psychological support, including support groups and online forums.

1.6.2

✓Supports this

“The person with ALS/MND and their caregiver or family each have support needs of their own, so each may need their own support as well as anything shared.”

The UK MND guideline makes two separate recommendations, one for the person with MND and one for family members and carers, so that each is offered sources of emotional and psychological support in their own right.

Offer family members and/or carers (as appropriate) information about respite care and sources of emotional and psychological support, including support groups, online forums and counselling or psychology services.

1.6.4

✓Supports this

“Caregivers and family members have emotional support needs of their own that should be asked about and met.”

The UK MND guideline treats the emotional impact on family members and carers as something the team should actively ask about, and has a separate recommendation to offer them their own sources of emotional support.

During multidisciplinary team assessments and other appointments, discuss the psychological and emotional impact of MND with family members and/or carers (as appropriate), and ask whether they have any psychological or social care support needs.

1.6.3

✓Supports this

“A counsellor, social worker or your ALS/MND team can help with difficult or important conversations.”

NICE's MND guideline lists how to tell family and friends among the questions the team should set aside time to discuss. Elsewhere it tells the team to refer people to counselling or psychology services and to involve a social care practitioner.

How do I tell my family and friends?

1.2.7

iAdds context

“Who to tell about ALS/MND, when to tell them, and how much to say is the person's own decision.”

NICE applies the same principle inside the clinic rather than to telling friends. It tells the care team to ask how much information the person wants and who they want involved, so the person controls what is shared and with whom.

Ask people about how much information they wish to receive about MND, and about their preferences for involving their family members and/or carers (as appropriate).

1.2.2

iAdds context

“A counsellor, family therapist, social worker or your ALS/MND team can help a family through difficult conversations, conflict or strong emotions.”

NICE's MND guideline says family members and carers should be offered information about emotional and psychological support, including counselling or psychology services, in their own right. It does not say that these services address conflict within a family.

Offer family members and/or carers (as appropriate) information about respite care and sources of emotional and psychological support, including support groups, online forums and counselling or psychology services.

1.6.4

✓Supports this

“The ALS/MND team and social worker are used to supporting families and can help with conversations or refer you on.”

NICE's MND guideline puts family support squarely in the team's remit. The team should discuss the emotional impact of MND with family members and ask about their support needs, and should refer on to counselling or psychology services where a specialist assessment is needed.

If needed, refer the person to counselling or psychology services for a specialist assessment and support.

1.6.2

✓Supports this

“ALS/MND affects the whole family, not only the person who has it, and family members have support needs of their own.”

NICE's MND guideline treats family members and carers as affected in their own right. It tells the care team to discuss the psychological and emotional impact of MND with them and to ask what support they need.

During multidisciplinary team assessments and other appointments, discuss the psychological and emotional impact of MND with family members and/or carers (as appropriate), and ask whether they have any psychological or social care support needs.

1.6.3

✓Supports this

“Changes to relationships, family roles and family dynamics are an expected part of living with ALS/MND.”

NICE's MND guideline names changes in relationships, family roles and family dynamics as one of the things the care team should raise, both with the person and with their family and carers.

Changes in relationships, familial roles and family dynamics.

1.6.1

Used across the whole answer

iAdds context

“Safe manual handling protects both the person with ALS/MND and the person helping them.”

NICE NG42 makes advice about safe manual handling part of managing muscle problems in MND, and asks teams to check first that family members or carers are willing and able to help with exercise programmes. It does not say what the risk of unsafe handling is.

Give advice to the person and their family members and/or carers (as appropriate) about safe manual handling.

1.8.8

Used across the whole answer

✓Supports this

“Breathlessness, breathlessness lying flat, disturbed sleep and daytime sleepiness should be reported to the ALS/MND team, because they can be early signs that the breathing muscles are weakening rather than signs of overdoing exercise.”

NICE NG42 asks teams to monitor a named list of symptoms and signs to detect possible respiratory impairment. Breathlessness, breathlessness when lying flat, disturbed and non-refreshing sleep, daytime sleepiness and fatigue are on that list. It does not treat any of them as a sign of exercising too hard.

Monitor the symptoms and signs listed in table 1 to detect potential respiratory impairment.

1.15.7

!Qualifies this

“Fatigue appears on both the overuse list and the list of symptoms monitored for respiratory impairment.”

Fatigue is on the NICE NG42 list of symptoms and signs to monitor for possible respiratory impairment, alongside breathlessness, breathlessness when lying flat, recurrent chest infections, disturbed and non-refreshing sleep, daytime sleepiness and morning headaches. That overlap is why these symptoms should not be attributed to exercise load alone.

Monitor the symptoms and signs listed in table 1 to detect potential respiratory impairment.

1.15.7

Used across the whole answer

Used across the whole answer

!Qualifies this

“There is no single physiotherapy review schedule that fits everyone with ALS/MND.”

NICE NG42 does put a default rhythm on review, though for the wider team rather than physiotherapy specifically. It asks the multidisciplinary team to carry out coordinated assessments usually every two to three months, covering physical function, mobility and activities of daily living among other areas.

Used across the whole answer

Used across the whole answer

Used across the whole answer

Used across the whole answer

Used across the whole answer

✓Supports this

“Morning headaches can be an early sign that the breathing muscles are weakening.”

NICE NG42 asks teams to monitor a named list of symptoms and signs to detect possible respiratory impairment. Morning headaches is on that list, together with breathlessness, breathlessness when lying flat, recurrent chest infections, disturbed and non-refreshing sleep, daytime sleepiness and fatigue, and a weak cough among the signs a clinician looks for.

Monitor the symptoms and signs listed in table 1 to detect potential respiratory impairment.

1.15.7

Used across the whole answer

✓Supports this

“Equipment and adaptations in ALS/MND are usually better planned earlier than later.”

NICE NG42 puts the same duty on services. Recommendation 1.10.1 asks physiotherapists and occupational therapists to assess and anticipate changes in daily living needs rather than wait for them, and 1.10.2 says what is needed should then arrive without delay.

Provide equipment and adaptations that meet the person's needs without delay, so that people can participate in activities of daily living and maintain their quality of life as much as possible.

1.10.2

✓Supports this

“Stretching and range-of-motion exercises help maintain comfort, flexibility, positioning and everyday care routines.”

NICE NG42 recommends considering an exercise programme in MND in order to maintain joint range of movement, prevent contractures, reduce stiffness and discomfort, and optimise function and quality of life. Not quoted because the recommendation is written as a list under a lead-in, so there is no complete sentence to reproduce.

✓Supports this

“Adapting the home, rather than working around it, can make a real difference to everyday life.”

The UK MND guideline treats equipment and adaptations as the way people keep taking part in everyday activities and hold on to their quality of life, and tells services to provide them without waiting.

Provide equipment and adaptations that meet the person's needs without delay, so that people can participate in activities of daily living and maintain their quality of life as much as possible.

1.10.2

✓Supports this

“It is worth designing home changes so they still work as needs change, rather than redoing them later.”

The UK MND guideline puts this on services as a requirement: adaptations and equipment are to be matched to the person's changing needs, not only to the needs they have on the day they are assessed.

Ensure that equipment, adaptations, daily living aids, assistive technology and wheelchairs meet the changing needs of the person and their family and/or carers (as appropriate) to maximise mobility and participation in activities of daily living.

1.10.5

✓Supports this

“An occupational therapist assesses the home and how the person lives in it, and recommends what would help.”

The UK MND guideline names occupational therapists among the professionals who should assess this, and lists what they should be looking at, which includes the home environment and whether it needs adapting alongside daily activities and getting around.

Healthcare professionals and social care practitioners, which will include physiotherapists and occupational therapists, should assess and anticipate changes in the person's daily living needs, taking into account the following:

1.10.1

iAdds context

“It is better to start the assessment before changes are urgent, because assessment and building work take time.”

Delay is what the guideline keeps pressing on in this section: adaptations are to be provided without delay, and access to a funding assessment for home adaptation is to be prompt. It is written for services rather than for the person, so it backs the point that time is the constraint rather than the advice to ask early.

Enable prompt access and assessment for funding for home adaptation. If the person is not eligible for funding, continue to offer information and support in arranging home environment adaptations.

1.10.8

iAdds context

“Keeping mobility, safety and independence going for as long as possible is what equipment and support are aiming at.”

Sets out what equipment provision is for: aids, adaptations, assistive technology and wheelchairs are to be kept matched to changing needs so that mobility and taking part in daily life are maximised. That is the stated aim of care rather than a measure of how long mobility lasts.

Ensure that equipment, adaptations, daily living aids, assistive technology and wheelchairs meet the changing needs of the person and their family and/or carers (as appropriate) to maximise mobility and participation in activities of daily living.

1.10.5

✓Supports this

“For some people, movement problems such as trips, falls or losing dexterity are among the first signs of ALS/MND.”

Lists what MND may look like when it first appears, as symptoms that seem isolated and go unexplained. The functional effects of muscle weakness it names first are loss of dexterity, falls or trips, so movement can be what shows up earliest.

Be aware that MND causes progressive muscular weakness that may first present as isolated and unexplained symptoms.

1.1.2

Used across the whole answer

✓Supports this

“Staying gently active is worth doing, and the level that suits one person will not suit another.”

Recommends considering an exercise programme, for keeping joints moving, preventing contractures, easing stiffness and discomfort, and getting the best function and quality of life. It says to choose one that fits the person's level of function and to allow for fatigue. NICE writes this as 'consider', its wording for a weaker recommendation.

✓Supports this

“Assessing and anticipating what a person needs for daily living and mobility is the job of the healthcare professionals and social care practitioners involved in their care, a group that will include physiotherapists and occupational therapists.”

Assigns this to healthcare professionals and social care practitioners, and says that group will include physiotherapists and occupational therapists rather than naming them as the only ones. It covers assessing and anticipating daily living needs, taking in mobility and avoiding falls, the home and whether it needs adapting, and the need for assistive technology, not who selects an item.

Healthcare professionals and social care practitioners, which will include physiotherapists and occupational therapists, should assess and anticipate changes in the person's daily living needs, taking into account the following:

1.10.1

✓Supports this

“Equipment should be matched to what a person needs and reviewed as those needs change, not set up once and left.”

Makes both halves a recommendation. Equipment, adaptations, daily living aids, assistive technology and wheelchairs are to keep meeting changing needs, and mobility and daily life needs are to be monitored regularly as MND progresses, with the person's ability to use each item reviewed and the item adapted where necessary.

Ensure regular, ongoing monitoring of the person's mobility and daily life needs and abilities as MND progresses.

1.10.6

Used across the whole answer

iAdds context

“Getting a piece of mobility equipment can take weeks or longer, because it has to be assessed, funded, ordered and delivered.”

Does not say how long equipment takes. It does show that waiting is a recognised problem: equipment and adaptations, orthoses, wheelchairs and assistive technology are each to be assessed and provided without delay, and access to home adaptation funding is to be prompt.

Provide equipment and adaptations that meet the person's needs without delay, so that people can participate in activities of daily living and maintain their quality of life as much as possible.

1.10.2

✓Supports this

“Seating is reviewed and re-set over time rather than set up once.”

Asks for mobility and daily living needs to be monitored on an ongoing basis as MND progresses, and for the ability to use equipment to be reviewed and the equipment adapted when it no longer fits.

Ensure regular, ongoing monitoring of the person's mobility and daily life needs and abilities as MND progresses. Regularly review their ability to use equipment and to adapt equipment as necessary.

1.10.6

✓Supports this

“Because needs change, specialists often suggest a chair that can be adapted or already has seating functions rather than one that only suits today.”

Puts this on services as a requirement rather than a preference: wheelchairs and other equipment have to go on meeting the person's needs as those needs change, and mobility should be monitored so equipment can be adapted when it stops fitting.

Ensure that equipment, adaptations, daily living aids, assistive technology and wheelchairs meet the changing needs of the person and their family and/or carers (as appropriate) to maximise mobility and participation in activities of daily living.

1.10.5

iAdds context

“Waiting for a wheelchair without having planned for it leaves people without the mobility support they need.”

Does not describe what happens to people while they wait. It tells services not to let the wait happen: referral, assessment and provision of a manual or powered wheelchair should all be without delay, so that people can keep taking part in daily life.

Refer people to wheelchair services without delay if needed. Wheelchair needs should be assessed and a manual and/or powered wheelchair that meets the person's needs should be provided without delay.

1.10.4

iAdds context

“People with ALS/MND do still travel, including with a large power wheelchair or breathing equipment.”

Treats travel away from home as something to plan for rather than rule out. Before someone starts non-invasive ventilation, the guideline expects the team's risk assessment to cover the risks of travelling away from home, especially abroad, alongside the power supply and battery back-up the person will need.

!Qualifies this

“An occupational therapist's assessment is how you find out what your current home can realistically become.”

The UK MND guideline gives this assessment to a group rather than to occupational therapists alone, naming physiotherapists in the same breath, and it covers the home environment as one of four things to look at. So an occupational therapist is one of the people who does this, not the only route to an answer.

Healthcare professionals and social care practitioners, which will include physiotherapists and occupational therapists, should assess and anticipate changes in the person's daily living needs, taking into account the following:

1.10.1

✓Supports this

“As ALS/MND changes movement and daily activities, the home itself often has to change to keep working.”

The UK MND guideline treats the home as something that has to keep pace with the person. Recommendation 1.10.1 lists the home environment and the need for adaptations among the things professionals should assess and anticipate, and 1.10.5 says adaptations have to go on meeting needs as they change.

Ensure that equipment, adaptations, daily living aids, assistive technology and wheelchairs meet the changing needs of the person and their family and/or carers (as appropriate) to maximise mobility and participation in activities of daily living.

1.10.5

iAdds context

“Asking about funding early matters, because both the funding decision and the work itself take time.”

Delay is what this section of the UK MND guideline keeps returning to, and it makes prompt access to a funding assessment for home adaptation an expectation of the service. It is written for services rather than for the person, so it backs the point that time is the constraint rather than the advice to ask early.

Enable prompt access and assessment for funding for home adaptation. If the person is not eligible for funding, continue to offer information and support in arranging home environment adaptations.

1.10.8

iAdds context

“Guidelines put benefits and employment rights among the things to cover from diagnosis onwards, which is why asking early matters.”

NICE lists benefits and employment rights among the information that should be given at diagnosis, which places this advice at the start rather than later on. It says nothing about what is lost by asking late, so it backs the timing and not the consequence.

Legal rights, including social care support, employment rights and benefits.

1.2.3

✓Supports this

“Helping people find and claim financial support is part of the social care practitioner's role in ALS/MND care.”

NICE's MND guideline gives this job to a social care practitioner who knows MND or rapidly progressive complex disabilities, and asks them to discuss what the person needs and help them get it. Financial support and advice is one of the five things named, including how to access disability and carers' benefits and grants.

Financial support and advice (for example, money management, how to access carers' and disability benefits and grants, continuing healthcare funding and funeral expenses).

1.6.5

Used across the whole answer

✓Supports this

“A recorded plan only does its job if the care team can reach it at the moment decisions are being made.”

NICE's MND guideline treats getting the plan to where it can be found as part of the planning itself, and gives the person's shared electronic health record as its example of how.

How to ensure advance care plans will be available when needed, for example, including the information on the person's Summary Care Record.

1.7.3

!Qualifies this

“There is no fixed deadline for advance care planning, and it can be paused and picked up again.”

NICE's MND guideline asks teams to consider raising advance care planning earlier than they otherwise would when they expect someone's communication, thinking or mental capacity to get worse. The pace stays the person's, but there can be a clinical reason not to leave it open ended.

Think about discussing advance care planning with people at an earlier opportunity if you expect their communication ability, cognitive status or mental capacity to get worse.

1.7.4

✓Supports this

“Anything recorded in an advance care plan can be reviewed and updated as your views or your situation change.”

NICE's MND guideline treats recorded decisions as things to revisit rather than settle. It asks teams to offer people the chance to talk about and review any advance decision, resuscitation order or power of attorney they already have, at the points where a major treatment decision comes up.

Offer people the opportunity to talk about, and review any existing, ADRT, DNACPR orders and Lasting Power of Attorney when interventions such as gastrostomy and non-invasive ventilation are planned.

1.7.5

✓Supports this

“The treatment decisions that come up in ALS/MND, and that people plan ahead for, include breathing support, feeding tubes and resuscitation.”

NICE's MND guideline names the same set. It asks teams to revisit advance decisions to refuse treatment, resuscitation orders and power of attorney at the point where a feeding tube or non-invasive ventilation is being planned.

Offer people the opportunity to talk about, and review any existing, ADRT, DNACPR orders and Lasting Power of Attorney when interventions such as gastrostomy and non-invasive ventilation are planned.

1.7.5

✓Supports this

“Where you would want to be at the end of life is one of the things worth recording in a plan.”

NICE's MND guideline lists preferred place of death among the things people might want to plan for, alongside what they would not want, giving being admitted to hospital as its example.

what they want to happen (for example, their preferred place of death)

1.7.3

Used across the whole answer

✓Supports this

“Your ALS/MND team, occupational therapist and social worker can help you work out what support you are likely to need over time.”

Makes anticipating future needs part of the job, not something the family has to foresee alone. It tells health professionals and social care practitioners, occupational therapists and physiotherapists among them, to assess and anticipate how daily living needs will change, across personal care, mobility, the home and assistive technology.

✓Supports this

“Most people's care needs grow and change as ALS/MND progresses.”

The UK MND guideline is built around needs that keep moving. It tells everyone involved in someone's care that symptoms can worsen quickly and that assessment has to be repeated rather than done once, and elsewhere that equipment and support must be kept in step with changing needs.

Ensure that all healthcare professionals and social care practitioners involved in the person's care are aware that MND symptoms may get worse quickly, and that people with MND will need repeated, ongoing assessments.

1.5.10

✓Supports this

“A social worker can assess your needs, explain the options and funding where you live, and help arrange services.”

Gives exactly this work to a social care practitioner who knows MND: discussing the person's social care needs and preferences, then helping them get personal care, equipment and practical support, financial support and advice, and respite care. It also tells the team to refer anyone with social care needs for an assessment.

If the person has any social care needs, refer them to social services for an assessment.

1.2.8

✓Supports this

“Simple low-tech measures of this kind are recognised communication supports in their own right, not a stopgap.”

NICE names alphabet, word and picture boards as low-level technologies that may help, and tells services to provide AAC equipment without delay so the person can keep taking part in daily life.

The use of both low‑level technologies, for example, alphabet, word or picture boards and high‑level technologies, for example, PC or tablet‑based voice output communication aids may be helpful.

1.12.2

iAdds context

“Low-tech methods are worth using in their own right, not only as a fallback when a device is unavailable.”

NICE treats low-level technologies such as alphabet, word and picture boards as AAC equipment to be provided in its own right, alongside high-level technologies. It is silent on using them as a backup, so it supports the first half of this statement and not the contrast.

The use of both low‑level technologies, for example, alphabet, word or picture boards and high‑level technologies, for example, PC or tablet‑based voice output communication aids may be helpful.

1.12.2

iAdds context

“Raising these questions early, rather than once communication is already hard, gives more room to choose and to plan.”

NICE requires that speech and communication assessment and review is carried out by a speech and language therapist without delay, which is the service side of asking early. It does not say what the person gains by raising these questions themselves.

Ensure that the assessment and review is carried out by a speech and language therapist without delay.

1.12.1

✓Supports this

“Eye-gaze is normally set up with a speech pathologist or AAC service, not bought and worked out alone.”

The NICE guideline puts the assessment of speech and communication with a speech and language therapist, and refers people who need eye-gaze access on to a specialist communication aid service. It treats this as a service pathway rather than something a person arranges alone.

Ensure that the assessment and review is carried out by a speech and language therapist without delay.

1.12.1

✓Supports this

“It is worth exploring eye-gaze before you actually need it.”

The NICE guideline tells teams to refer someone to a specialist communication aid service when eye-gaze access is needed or is likely to be needed. Acting on what is likely, rather than waiting for it to be needed, is the same point the answer makes.

Liaise with, or refer the person with MND to, a specialised NHS AAC hub if complex high technology AAC equipment (for example, eye gaze access) is needed or is likely to be needed.

1.12.3

✓Supports this

“A communication assessment is usually suggested early, and is useful before speech is clearly a problem.”

Treats speech and communication as something assessed as part of routine multidisciplinary appointments rather than only when speech becomes difficult, and requires the speech and language therapist to carry out that assessment and review without delay.

Ensure that the assessment and review is carried out by a speech and language therapist without delay.

1.12.1

Further reading

A clinical guideline covering MND care, including bowel management

Further reading

Guideline detail on breathing tests and respiratory monitoring in MND

Further reading

Clinical guideline detail on lung function and respiratory monitoring in MND

Further reading

Includes guidance on equipment, adaptations, and support for carers.

Further reading

Guidance on mobility, daily living needs, equipment, and adaptations.

Further reading

Covers equipment, adaptations, mobility, and daily living needs.

Further reading

Guidance on regular multidisciplinary assessment and coordinated care.

Further reading

Recommends coordinated multidisciplinary review and anticipatory care.

Further reading

Includes symptom management and equipment recommendations.

Further reading

Guidance on coordinated care, equipment, and mobility.

Further reading

Guidance on coordinated, multidisciplinary assessment and regular review in MND

Further reading

Guidance on respiratory assessment, cough effectiveness, cough augmentation, and NIV.

Further reading

Covers timely equipment, adaptations, wheelchairs, and assistive technology.