Welcome

New UK Charity for Peripheral Neuropathy

The BPNS wish to facilitate setup of a new charity for peripheral neuropathy in the UK.  There is no charity or association in the UK which supports people with all the many causes of peripheral neuropathy.  Only a few specific causes of neuropathy have a UK charity, such as CMT-UK, GAIN and Diabetes UK.  There is no UK charity to support idiopathic neuropathy, painful small fibre neuropathy (except general pain charities), brachial neuritis, carpal tunnel and entrapment neuropathies, chemotherapy neuropathy (except cancer charities), etc.

The chief executives of several related charities have kindly offered to give infomral advice and support: GAIN, CMT-UK and the (USA based) International Foundation for Peripheral Neuropathy.  The next step is we need a small number of keen UK patients with neuropathy to do the work, ideally with relevant skills such as running a business/company/charity, accountancy, fundraising, website programming or public relations.  Volunteers would need some spare time and to be sensible organised people.  We need quality not quantity.  Interested individuals can make contact by email: info@neuropathy.org.uk.  BPNS members have been emailed with the link to the poster so they can print and put up in neurology and neurophysiology outpatient departments: https://www.bpns.org.uk/data/files/Public/NeuropathyOrgPoster.pdf. 

New NHSE commissioning policies for rituximab and IVIg

• We are pleased to announce that, largely due to the efforts of our president Prof Lunn, rituximab is now approved for treatment of IgM paraproteinaemic demyelinating peripheral neuropathy (anti-MAG phenotype, with or without anti-MAG antibodies): 1910-rituximab-for-treatment-of-PDPN-policy-v2.pdf (england.nhs.uk).  Whilst we have hitherto been able to treat some patients with rituximab by sending them to a haematologist, this was not possible if the bone marrow showed insufficient evidence of underlying lymphoplasmacytic lymphoma.  These patients can now be treated, regardless of bone marrow result, either by you or by your friendly haematologist, under the new commissioning guidance. 
• Also thanks to Prof Lunn (alongside non-neurology colleagues), the updated IVIg commissioning policy is now available: Commissioning-Criteria-Policy-for-the-use-of-Ig-Version-Finala.pdf (mdsas.com).  Newly commissioned diagnoses of relevance to peripheral nerve now include acute autoimmune autonomic ganglionopathy, and neuromyotonia.
• Finally, with thanks largely to the efforts of Dr Rinaldi in Oxford, rituximab can now be used for the treatment of autoimmune nodopathies (with nodal/paranodal antibodies):  NHS England » Rituximab therapy for the treatment of nodal/paranodal antibody positive inflammatory/autoimmune neuropathy in adults and postpubescent children. 

GWAS study of CIDP

Members are encouraged to participate in a genome-wide association study of CIDP. Brief details can be found HERE

COVID Vaccination and GBS

Following on from the successful BPNS instigated study of GBS linked to COVID-19 infection - whhich found no evidence that COVID is a significant trigger for GBS, te society is now encouraging a similar collaborative study of GBS following COVID vaccination (any vaccine). Details can be found in the members pages - HERE (login to access)