Narcalepsy UK – Survey

Narcalepsy UK inted to produce a Narcolepsy Charter, detailsing the rights of people with Narcolepsy in the UK.

This survey with give them the data they will need to create the Narcolepsy Charter.

Please complete the survey here. 

Airing Pain 104: How Sleep and Chronic Pain Interact

More pain, less sleep. Less sleep, more pain. Their relationship is a complex one, but what are the mechanisms behind the link between sleep and pain?

Listen Here: 

BSS and BMJ Collaboration

It is a pleasure to announce the launch of our official BSS membership journal, BMJ Open Respiratory Research (BMJORR). BMJORR is a peer-reviewed, open access journal published by the BMJ group in partnership with the British Thoracic Society; it is the sister journal to Thorax. The journal focuses on
robustness of methodology and scientific rigour, operating a rapid review process, with continuous publication online, ensuring timely, up-to-date research is available worldwide.

After negotiations with the editorial board and the publishers the journal will expand its current focus from critical care and respiratory medicine to include sleep medicine as its third column, in line with other major professional organisations. The journal publishes review articles and research studies in
basic science, pilot studies or proof of concept, observational studies, protocols, registries, clinical trials and systematic reviews with meta-analyses.

BMJORR is a young and ambitious journal which started publishing in 2014 and is indexed in PubMed Central, Scopus and Web of Science (Emerging Sources Citation Index). The following points might be important for the BSS membership:

● The partnership with the BSS allows a wider publication, readership and it offers the chance to grow
● The BMJORR logo will be displayed on the BSS website and at future events, while the BSS will be
presented on the journal’s communications (“…an official journal of the BSS”).
● The BSS has been offered representation at editorial board level to supervise and advise future sleep related manuscript submissions and editorial comments.
● Monthly communications of the latest content will be forwarded to BSS members via email, if you have signed up for this with the BSS.
● Supplemental issues for future BSS conferences offer the chance to include the program and to reference abstracts.
● The journal invites members to consider future submission of original contributions and encourages the publication of official BSS statements, guidelines or reviews (all submissions are subject to the usual rigorous peer review.
● The open access article publishing charge is offered at a reduced rate for BSS members (25% discount on standard APC).

We hope that you will join us in welcoming this new arrangement which will start in June 2018 for a two year period before being reviewed.

BTS statement on driving and OSA

BTS has published an updated Position Statement: Driving and Obstructive Sleep Apnoea (OSA) 2018, in response to recent legislative changes in this area.

In January 2016, a European Commission Directive on Driving led to extensive changes to the “Excessive Sleepiness including OSA” section of the DVLA “Assessing Fitness to Drive – a guide for medical professionals” document of March 2016. Following consultations with professional and patient bodies, the DVLA guidance was subsequently updated in October 2017. See Related Links for the full current guidance. To keep up to date with any changes to the DVLA guidance, readers can sign up for email alerts.

The BTS Position Statement contains information on the roles and responsibilities of medical professionals, along with a series of real life scenarios and advice on how these should be approached.

Update on RCCP and AHCS

The Registration Council for Clinical Physiologists (RCCP) and the Academy for Healthcare Science (AHCS) have been discussing joint working for the last 2 years.

A number of options have been discussed and at the RCCP Council meeting on 19/6/17 it was agreed by a majority to continue discussions with the AHCS and to pursue an RCCP application to the Professional Standards Authority (PSA) to accredit its register.

For more information, please contact RCCP Chief Executive Paul Sharpe or RCCP Chair Trefor Watts

BSS Position on RCCP/ AHCS Merge

Current Position – BSS (proposed)

The impact of the proposed changes to the current registration procedures for Clinical Physiologists / Clinical Physiology in the UK is currently unclear and in dire need of clarification by the principal stakeholders in this process.

Given the changing political environment and moves towards statutory regulation of clinical physiology in the UK, makes the current impasse perplexing.  This helps no one and should not be used for any political gain.  This is further diluted when a primary objective of all governing bodies must be the effective validation of the skills of practicing physiologists together with patient safety.

To that end, the BSS is not beholden to any specific option and is prepared to support the majority opinion. However, we (The BSS) feel that the perceived agenda does not support the ongoing needs of current and future registrants.  Therefore, the BSS is in agreement with position of our colleagues in the ARTP, to assume a “watching brief”, in regard of any alternative proposals generated.

Judge Rules against NHS England to allow funding for controversial drug Sodium Oxybate

As many of you who manage narcolepsy patients will know, there have been increasing difficulties in persuading commissioning groups that the controversial drug sodium oxybate is a worthwhile and effective treatment for severe narcolepsy. The vast majority of requests are turned down, predominantly due to a perceived lack of cost effectiveness. A recent court ruling and an editorial letter in the British Medical Journal may be of interest. The former relates to an adolescent being refused the drug despite persuasive arguments from her paediatric neurologist, provoking an appeal in which the high court judge overturned the negative decision and ruled against NHS England. The link to the wording of the judge’s ruling can be found here.

The BMJ editorial outlines the inequities and confusion over the current processes for sanctioning prescribing of sodium oxybate. In particular, how “exceptionality” can or cannot be defined is addressed. A link to the article is

Paul Reading

Managing non-respiratory sleep Disturbance in children with neuro-disability: new review commissioned by NIHR

Non-respiratory sleep disturbance among children with neurodisabilities is common and a range of interventions, both pharmacological and non-pharmacological, have been developed to address these. Previous systematic reviews on the effectiveness of these interventions have typically focused either on particular interventions (e.g. melatonin) and/or specific sub-groups (e.g. autism).   NIHR’s HTA programme has recently commissioned a holistic systematic review to identify and evaluate evidence on the effectiveness of pharmacological and non-pharmacological interventions in the management of sleep disturbance across all children with neurodisabilities. Additional objectives are to synthesise evidence regarding the acceptability and feasibility of interventions, and to identify ‘promising interventions’. The review is being carried out by a team at the University of York with input from senior sleep practitioners based in paediatrics, CAMHS and the third sector.  It commenced in February 2015 will take 12 months to complete. For further information, see  or contact Gemma Spiers (