Spinal Muscular Atrophy
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At the Atkinson Morley Neuromuscular Centre at St George’s Hospital we run a specialist clinic for the diagnosis and treatment of Spinal Muscular Atrophy (SMA) in adults. We treat patients holistically working with a multi-disciplinary team of clinicians and allied health professionals in neurology, neurorehabilitation and respiratory medicine.
Please see our general neuromuscular page for exercise and fatigue management advice.
Treatments
We are an NHS England treatment centre for Nusinersen (trade name Spinraza™), a genetic therapy for SMA and also are able to prescribe Risdiplam (trade name Evrysdi ™), under the managed access agreement with NICE and NHS England that is currently running until 2024.
Adults referred to the clinic with SMA will have a multi-disciplinary assessment from a Consultant Neurologist, Specialist Neuromuscular Physiotherapist and Occupational Therapist to determine if Nusinersen or Risdiplam is the right treatment for them.
If treatment with Nusinersen is planned you will be admitted to the neurosciences day unit or neurology ward (Kent Ward) for pre-treatment assessments. The treatment will be delivered the next day with support from consultant colleagues in Interventional Radiology who used X ray and CT guidance if needed. The first dose is the start of treatment (called day 0) and doses are then repeated at day 14, day 28 and day 63. Maintenance doses are then required every 4 months with clinical assessments every 6 months to determine the benefit of the treatment for you.
If treatment with Risdiplam is planned you will need to attend the clinic for a morning for medical and physiotherapy assessment, blood tests and ECG (heart tracing). The medication is delivered via homecare but you are required to attend clinic face to face every 6 months for clinical assessments to determine the benefit of the treatment for you.
We are part of the Adult SMA Reach Network (Adult SMA Reach – Adult Spinal Muscular Atrophy data collection study) and encourage patients to register for the SMA Registry (Home – UK SMA Patient Registry (sma-registry.org.uk))
See our Frequently Asked Questions (FAQs) below regarding treatment with Nusinersen or Risdiplam.
Key staff
Who you might meet
Neurology team members of the SMA multi-disciplinary team include:
Dr. Clare Galtrey, Consultant Neurologist
Dr Emma Matthews, Consultant Neurologist
Dr Niran Nirmalananthan, Consultant Neurologist
Dr Catherine Dalton, Consultant in Neurorehabilitation
Ms Pamela Appleton, Neuromuscular Care Advisor
Ms Alana Mossop, Neuromuscular Care Advisor
Ms Sherryl Chatfield, Neuromuscular Physiotherapist
Mr Derek Weidner Neuroscience Pharmacist
Interventional Neuroradiology
Dr Declan Johnson, Consultant Neuroradiologist
Dr Sahil Chhabda, Consultant Neuroradiologist
Respiratory team members include:
Dr Nicola Walters, Consultant in Respiratory and General medicine
Dr Susannah Leaver, Consultant Intensive Care and Respiratory Medicine
Ms Sara Parsons, Consultant Clinical Scientist
Referrals
We are happy to receive referrals from both GPs (via ERS) and secondary care. Please address new referrals to Dr Clare Galtrey.
For any queries please contact the Neuromuscular Co-ordinator on 0208 725 3291 or via email at nervemuscle@stgeorges.nhs.uk
- FAQs about Treatment
- I wish to be considered for nusinersen or risdiplam treatment at St George’s – what should I do?
If you are already under the care of a Consultant Neurologist at St George’s please contact that consultant and ask to be referred to Dr Clare Galtrey for consideration of treatment.
If you are under a different neuromuscular centre or not currently attending a neuromuscular centre please ask your GP to refer you to Dr Clare Galtrey at St George’s including your contact details and location of previous neuromuscular care centre or place of diagnosis.
We will then contact you to arrange a consultation that may be via the telephone or video initially. Then you will need to attend a face to face appointment for full medical and physiotherapy assessment to determine if treatment is right for you.
We aim to make initial contact with you within 6 weeks.
- How is COVID affecting assessments and treatment?
- We are making initial consultations via the telephone or video to assess the next steps and avoid unnecessary visits to hospital.
- During face to face appointments staff will wear appropriate PPE
- We can arrange patient transport for patients in our local catchment area of South West London and Surrey.
- Where can I go for more information?
SMA UK (Spinal Muscular Atrophy UK – SMA Charity (smauk.org.uk))
Living with SMA (Adults – Living With SMA)
Treat SMA (TreatSMA – Campaign for Access to Treatments for Spinal Muscular Atrophy)
Muscular Dystrophy UK (Spinal muscular atrophy (SMA) – Overview | Muscular Dystrophy UK)
Pathfinders Alliance (Pathfinders Neuromuscular Alliance – Supporting adults with muscle-weakening conditions (pathfindersalliance.org.uk))
- NICE Guidance for treatment with Nusinersen and Risdiplam via the Manged Access Agreement
- Nusinersen for treating spinal muscular atrophyTechnology appraisal guidance [TA588]Published: 24 July 2019 (Overview | Nusinersen for treating spinal muscular atrophy | Guidance | NICE)
- Risdiplam for treating spinal muscular atrophy Technology appraisal guidance [TA755]Published: 16 December 2021 (Overview | Risdiplam for treating spinal muscular atrophy | Guidance | NICE)
Charity Links