Damian and Henry,
What frustration and despair you must be feeling -- here in the states we always think of the UK as an industrialized nation, as our equals in Europe, but the description of your experiences really spurs my sympathy and prayers that the outlook for Narcolepsy treatment in Britain will improve.
In the meantime, I found a website for the European Sleep Research Society
http://www.esrs.eu/c...ont_content.php . I did find the contact information for someone in the UK that is on their board.
Assistant Secretary
Prof. Debra Skene
School of Biomedical and Molecular Sciences
University of Surrey
Guilford, GU2 7XH, UK
phone: +44 1483 686401
fax: +44 8701 99175
email:
d.skene@surrey.ac.uk Perhaps this woman will have connections or referrals for you to medical practitioners that have a better understanding of Narcolepsy. There is also a member of their scientific committee -- without contact information:
There's also an excel file with a list of sleep research centers and there are a number listed in the UK :
http://www.esrs.eu/c...labs_070401.xlsContact information for some members can be found in their most recent newsletters. I don't know if they're doctors or just researchers, but if any of them are in your area you might want to reach out to them to see if they could refer you to a medical practitioner that is more understanding about Narcolepsy:
Gillian Twigg, PhD
Imperial College Healthcare, Sleep Cenre, Charing Cross Hospital, Fulham Palace Road, W6 8RF London, United Kingdom
phone: +44 208 846 7188, fax: +44 208 846 7172
e-mail: gillian.twigg(a)imperial.nhs.uk
Steven Thomas
Sleep Medicine, The James Cook University Hospital, Marton Road, Middlesbrough, TS4 3BW Cleveland, United Kingdom
phone: +44 1642 282 533, fax: +44 1642 854 246
e-mail: stephen.thomas(a)stees.nhs.uk
Alex Dregan, Mc
Sociology, University of Surrey, , GU2 7XH Guildford, United Kingdom
phone: +44 1483 6639 66, fax:
e-mail: a.dregan(a)surrey.ac.uk
Allen Davey, MA
British Snoring & Sleep Apnoe Association, Castle Court, 41 London Road, Reigate, RH2 9RJ Surrey, United Kingdom
phone: +44 1737 245638, fax: +44 870 052 9212
e-mail: allen(a)britishsnoring.co.uk
Marianne Davey, MSc
British Snoring & Sleep Apnoe Association, Castle Court, 41 London Road, Reigate, RH2 9RJ Surrey, United Kingdom
phone: +44 1737 245638, fax: +44 870 052 9212
e-mail: marianne(a)britishsnoring.co.uk
Jacqueline Bennett
Sleep Medicine, The James Cook University Hospital, Marton Road, Middlesbrough, TS5 8SU Cleveland, United Kingdom
phone: +44 1642 282 533, fax: +44 1642 854 246
e-mail: jacqueline.bennett(a)stees.nhs.uk
Katrin Ackermann, Dr.
Chronobiology Research Group, University of Surrey, EHMS, A4 Boulding, GU2 7XH Guildford, United Kingdom
phone: +44 1483 683341, fax:
e-mail: k.ackermann(a)surrey.ac.uk
Chris Alford, PhD
Psychology, Faculty of applied Sciences, University of West of England, Frenchay Campus, Coloharbour Lane, BS16 1QY Bristol, United Kingdom
phone: 44 117 328 2191, fax: +44 117 328 2904
e-mail: chris.alford(at)uwe.ac.uk
Simon Archer, Dr. PhD
Biomedical + Molecular Sciences, University of Surrey, , GU2 7XH Guildford, United Kingdom
phone: +44 1483 686408, fax: +44 8701 320528
e-mail: simon.archer(at)surrey.ac.uk
Ramesh Ghiassi, MSc
West London Sleep Centre, Imperial College London and Hammershmith Hospitals NHS Trust, Fulham Palace Rd., Hammersmith, W6 8RF London, United Kingdom
phone: +44 208 846 1356, fax: +44 208 846 7999
e-mail: r.ghiassi(at)imperial.ac.uk
Alexandra Holmes, PhD
Clockwork Research Ltd., 21 Southwick Mews, W2 1JG London, United Kingdom
phone: +44 20300 86486,
e-mail: alex(at)clockworkconsultants.com
Osman Ebrahim Irshaad, MD
The London Sleep Centre, , 137 Harley Street, W1G 6BF London, United Kingdom
phone: +44 20 772 50523,
e-mail: isrhaad.ebrahim(at)londonsleepcentre.com
Marc Lefevre, DDS
2, Harley Street, W1A 9PG London, United Kingdom
phone: +44 207 436 6196,
e-mail: dlefevre(at)club-internet.fr
Abubacker Siddiq Pulakal, MRCP
Regional Sleep Service, Wythenshawe Hospital, Southmoor Road, Wythenshawe, M23 9LT Manchester, United Kingdom
phone: +44 161 291 2569, fax: +44 161 291 4961
e-mail: aspulakal(at)hotmail.com
Helen Clare Thorne
Neuroendocrinology Group, SBMS University of Surrey, , GU2 7XM Guildford, United Kingdom
phone: +44 1483 68 33 41,
e-mail: h.thorne(at)surrey.ac.uk
Sophie Wehrens, MSc
Neuroendocrinology, School of Biomedica. & Molecular Sciences, University of Surrey, GU2 7XM Guildford, United Kingdom
phone: +44 1483 683341,
e-mail: sophie.wehrens(at)surrey.ac.uk
Yvonne Gabriele Winkler, Dr. rer.soc.
21 The Boltons, SW10 9S4 London, United Kingdom
phone: +44 207 244 1810, fax: +44 207 244 1811
e-mail: yvonne(at)winkler.org.uk
Marcos Bote, Dr.
Sociology, University of Surrey, , GU2 7XH Guildford, Surrey, United Kingdom
phone: +44 1483 683763, fax: +44 1483 689551
e-mail: m.bote(at)surrey.ac.uk
Jason Ellis, PhD
Department of Psychology, University of Surrey, , GU2 7XH Guildford, United Kingodm
phone: +44 1 48368, fax: +44 1 483689553
e-mail: j.ellis(at)surrey.ac.uk
Prof. Jim Horne
Dept. of Human Sciences
Univ. of Technology
Loughborough University
Loughborough Ceics, LE 11 3TU, UK
phone: +441509223004
fax: +441509223940
email: j.a.horne@lboro.ac.uk
There is also a British Sleep Society -
http://www.sleeping....nts/homefrm.htm . I couldn't find any contact information, but it could be a helpful source as well.
I am so glad that you found this site and that we can exchange support "across the pond" but I know how important it is to have doctors that understand your condition that you can see on a regular basis as well.
Hope this helps!
Kimberly
I experienced this first hand in the past month. when I turned up at local GP asking for some time of HELP, the dreams and paralysis were getting to much to handle I was IMMEDIATLY REFERRED FOR PHYSC EVALUATION at Tameside, accident and emergency, to where I wa assessed then sent away after 2 hours, with a 24 hour support number.
