A motor neurone disease MDT clinic, under one roof.

Prices vary by clinic, by which consultant leads the MDT, and by whether respiratory NIV set-up or PEG placement is bundled. We come back with a firm quote within one working day.

1. 01

   Before

   You send us the referral or letter

   A short, confidential form. Symptom onset, current function, any EMG or MRI already done, and what you are hoping the clinic will give you.

2. 02

   Before

   We come back with a shortlist

   Within one working day: two or three MDT clinics matched to your geography, disease stage and insurance status. Indicative price for each.

3. 03

   Before

   We arrange the first visit

   Usually within one to two weeks. Records collated, EMG and imaging booked in parallel, and travel or accommodation smoothed if you are coming into London.

4. 04

   On the day

   A 60-minute consultant neurology review

   Full history, upper and lower motor neurone examination, cognitive screen (ECAS), and a plain discussion of what the pattern is pointing to.

5. 05

   On the day

   The rest of the MDT, in one afternoon

   Specialist nurse, respiratory (FVC and SNIP), SLT, dietitian, physio and OT. A palliative-care introduction where appropriate.

6. 06

   On the day

   A written plan, before you leave

   Riluzole where indicated, symptom-control prescriptions, NIV and PEG timing, and named contacts for the specialist nurse and hospice team.

7. 07

   After

   MDT follow-up every 8 to 12 weeks

   Same team, same afternoon. Progression is tracked with ALSFRS-R, FVC and weight, and the plan is escalated ahead of need rather than in crisis.

• Progressive limb weakness with wasting

  Foot drop, hand weakness or grip loss with visible wasting and fasciculations that has advanced over months, not years.

• Bulbar onset - speech and swallow

  Slurring, a wet or nasal voice, tongue fasciculations and choking on fluids. Early SLT, dietitian and PEG planning matter most here.

• Mixed upper and lower motor neurone signs

  Brisk reflexes in a wasted, weak limb - the classic pattern that meets Gold Coast criteria for a firm ALS diagnosis.

• Suspected primary lateral sclerosis

  Pure upper motor neurone disease with spasticity and no denervation on EMG. Slower course, different prognosis, same MDT.

• Progressive muscular atrophy

  Pure lower motor neurone weakness with denervation on EMG and no UMN signs. A distinct MND phenotype, not CIDP or MMN.

• Known SOD1 or C9orf72 family history

  A first-degree relative with MND and new symptoms. Genetics counselling, and a route to tofersen assessment for SOD1 carriers.

• Frontotemporal cognitive change

  Behavioural change or executive dysfunction alongside motor weakness. Around 15% of MND has overt FTD. ECAS screening at every review.

• Red flag: rapid respiratory decline

  Orthopnoea, morning headache, daytime somnolence or a falling FVC. Urgent respiratory review and NIV discussion, not a routine follow-up.

• Riluzole - blood monitoring

  Riluzole 50 mg twice daily under NICE TA20 gives a modest survival benefit. LFTs and FBC at baseline, monthly for 3 months then quarterly. Stop for ALT above 5x upper limit.

• Tofersen for SOD1 mutation carriers

  Approved by NICE (TA894, 2024) for confirmed SOD1 MND. Intrathecal every 4 weeks in a designated NHS centre. Access is via the NHS pathway, not private.

• Sialorrhoea and drooling

  Glycopyrronium tablets or bromide drops, hyoscine patches, sublingual atropine 1% eye drops off-label, and botulinum toxin to parotids where medications fail.

• Spasticity and cramps

  Baclofen or tizanidine titrated to effect for spasticity. Quinine sulphate 200 to 300 mg nightly for cramps. Physiotherapy remains the backbone.

• Dyspnoea and air hunger

  Low-dose oral morphine (2.5 to 5 mg) and lorazepam titrated to breathlessness. Not a hastening of death - a proven, humane symptom control.

• NIV - when to start

  Home BiPAP when FVC falls below 80% with orthopnoea, or SNIP below 40 cm H2O, or symptomatic hypoventilation. Starting late loses the benefit.

• PEG or RIG - timing matters

  Gastrostomy before FVC drops below 50% is safer and better tolerated. RIG (radiologically inserted) is often preferred when respiratory reserve is already low.

• Advance care planning

  A written plan covering NIV escalation, tracheostomy preferences, resuscitation, and preferred place of death. Reviewed at every MDT follow-up.

• Red flags between visits

  Sudden respiratory deterioration, chest infection, aspiration, uncontrolled secretions or a fall - contact the MND nurse the same day, not the next MDT slot.

• What does a private MND MDT clinic actually give me?

  A co-located half-day clinic where a consultant neurologist, specialist MND nurse, respiratory team, SLT, dietitian, physio, OT, neuropsychology and palliative care all see you in one afternoon. You leave with a written plan, prescriptions in hand, and a named nurse contact. The alternative - separate appointments across weeks - is exhausting and lets problems drift.

• How is motor neurone disease diagnosed?

  Diagnosis rests on the revised El Escorial and, more recently, Gold Coast criteria: progressive motor impairment with a mix of upper and lower motor neurone signs, EMG evidence of denervation in at least two body regions, and exclusion of mimics on MRI and blood tests. A specialist neurologist should give a firm answer within weeks, not months.

• Does riluzole actually work, and what does it cost privately?

  Riluzole 50 mg twice daily is recommended by NICE (TA20) and extends survival by around 2 to 3 months on average, with some patients gaining more. It is not a cure. A private prescription costs from around £150 per month. LFTs and FBC are monitored monthly for the first three months, then quarterly.

• Is tofersen available in the UK?

  Yes, for the small group with a confirmed SOD1 gene mutation. NICE approved tofersen in 2024 (TA894) for SOD1-MND. It is given as an intrathecal injection every four weeks in a designated NHS centre. Access is via the NHS pathway, not private practice. Edaravone is not routinely available in the UK.

• When should I start non-invasive ventilation (NIV)?

  NIV via home BiPAP is offered when your forced vital capacity falls below 80% predicted with orthopnoea, when your sniff nasal inspiratory pressure (SNIP) is below 40 cm H2O, or when you have symptomatic hypoventilation such as morning headaches or disturbed sleep. Starting NIV in good time improves both quality of life and survival - starting late loses much of that benefit.

• When should PEG or RIG be considered?

  A gastrostomy for feeding is safer when placed before your FVC drops below 50% predicted. Waiting until swallowing has completely failed makes the procedure riskier. RIG (radiologically inserted) is often preferred when respiratory reserve is already reduced. This is one of the most important timing decisions in MND care, and one your MDT will raise early.