Useful organisations and links for further information

The organisations are listed alphabetically under each pain category; unless stated otherwise, all the organisations are registered charities.
Please note: The British Pain Society is not responsible for the content of external websites.

If you would like your organisation added to this list please fill, click here to download and complete a permission request form. 

Contents

  1. General / Self-Management
  2. Ankylosing Spondylitis
  3. Arthritis
  4. Back Pain
  5. Cancer
  6. Complex Regional Pain Syndrome
  7. Cystitis
  8. Disability
  9. Dystonia
  10. Endometriosis
  11. Fibromyalgia
  12. Gout
  13. Herpes
  14. Intestinal Disorders
  15. Kidney
  16. Lichen Planus
  17. Lupus
  18. Meningitis
  19. ME (Myalgic Encephalomyelitis)
  20. Migraine
  21. Motor Neurone
  22. MS (Multiple Sclerosis)
  23. Osteoporosis
  24. Paget's Disease
  25. Pain
  26. Parkinson's
  27. Pelvic Pain
  28. Polio
  29. Shingles
  30. Skin/Dermatological Ailments
  31. Stroke
  32. Trigeminal Neuralgia
  33. Veterans
  34. Vulval Pain

General / Self-Management

CenterWatch (Database of clinical trials) *
http://www.centerwatch.com/clinical-trials/pns/

* CentreWatch is not a registered charity

DIPEx (Database of patient experiences)
Email: info@healthtalkonline.org
Web: www.healthtalk.org


European Pain Federation (EFIC)
E-mail: secretary@efic.org
Web: www.efic.org

International Association for the Study of Pain (IASP)
Secretariat
1510 H St. NW, Suite 600
Washington, DC 20005-1020
Tel: +1-202-524-5300
Fax: +1-202-524-5301
Email: ISAPdesk@iasp-pain.org
Web: www.iasp-pain.org

My Living Well with Pain
Web: 
http://my.livewellwithpain.co.uk/?

NHS - 10 ways to reduce pain
Web: https://www.nhs.uk/live-well/healthy-body/10-ways-to-ease-pain/

Neurological Alliance
Dana Centre
165 Queen's Gate
London
SW7 5HD
Tel: 0207 584 6457
Email: arlene.wilkie@neural.org.uk
Web: www.neural.org.uk

Pain Tooklit
Web:
www.paintoolkit.org

Patients' Association
PO Box 935
Harrow
Middlesex
HA1 3YJ
Tel: 020 8423 9111
Helpline: 020 8423 8999
Email: helpline@patients-association.com
Web: www.patients-association.org.uk

Physiotherapy Pain Association - Links for People in Pain
Web: https://ppa.csp.org.uk/content/links-people-pain

Practical Pain Management - Self-Management of Chronic Pain in Primary Care
https://www.practicalpainmanagement.com/treatments/complementary/self-management-chronic-pain-primary-care

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Ankylosing Spondylitis

National Ankylosing Spondylitis Society (NASS)
4 Albion Court
Hammersmith
London
W6 0QT
Tel: 0208 741 1515
Email: admin@nass.co.uk
Web: www.nass.co.uk

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Arthritis

Versus Arthritis
Copeman House
St Mary's Gate
Chesterfield
Derbyshire
S41 7TD
Tel: +44 (0) 300 790 0400
Helpline: 0800 5200 520
Email: enquiries@versusarthritis.org
Web: https://www.versusarthritis.org/

Arthritis & Musculoskeletal Alliance (ARMA)
Bride House
18-20 Bride Lane
London
EC4Y 8EE
Tel: +44 (0)20 7842 0910/11
Fax: +44 (0)20 7842 0901
Web: www.arma.uk.net

National Rheumatoid Arthritis Society (NRAS)
Ground Floor
Gardner Road
Maidenhead
Berkshire
SL6 7RJ
Tel: 0162 882 3524 / 0845 458 3969
Fax: 0845 458 3971
Helpline (Free): 0800 298 7650
Email: helpline@nras.org.uk
Web: www.nras.org.uk

 

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Back Pain

BackCare
16 Elmtree Road
Teddington
Middlesex
TW11 8ST
Tel: 0208 977 5474
Email: info@backcare.org.uk
Web: www.backcare.org.uk

Brain and Spine Foundation
3.36 Canterbury Court
Kennington Park
1-3 Brixton Road
London
SW9 6DE
Tel: 0207 793 5900
Email: info@brainandspine.org.uk
Web: www.brainandspine.org.uk

Spinal Injuries Association
SIA House
2 Trueman Place
Oldbrook
Milton Keynes
MK6 2HH
Tel: 0845 678 6633
Fax: 0845 070 6911
Helpline: 0800 980 051
Email: sia@spinal.co.uk
Web: www.spinal.co.uk

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Cancer

Breast Cancer Care
5-13 Great Suffolk Street
London
SE1 0NS
Tel: 0845 077 1895
Helpline: 0808 800 6000
Email: info@breastcancercare.org.uk
Web: www.breastcancercare.org.uk

Leukaemia Care Society
1 Birch Court
Blackpole East
Worcester
WR3 8SG
Tel: 0190 5755 977
Helpline: 0800 8010 444
Email: care@leukaemiacare.org.uk
Web: www.leukaemiacare.org.uk

Lymphoma Association
PO Box 386
Aylesbury
HP20 2GA
Tel: 0129 6619 400
Helpline: 0808 808 5555
Email: information@lymphomas.org.uk
Web: www.lymphomas.org.uk

Macmillan Cancer Relief
Macmillan Cancer Support
89 Albert Embankment
London
SE1 7UQ
Tel: 020 7840 7840
Helpline: 0808 808 0000
Web: www.macmillan.org.uk

Mesothelioma UK
Mesothelioma UK Charitable Trust
c/o Glenfield Hospital
Groby Road
Leicester
LE3 9QP
Freephone: 0800 169 2409
Email: mesothelioma.uk@uhl-tr.nhs.net
Web: www.mesothelioma.uk.com

Mesothelioma Group
http://www.mesotheliomagroup.com/

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Complex Regional Pain Syndrome

Burning Nights CRPS
Burning nights CRPS can be contacted via the contact form on their website: http://www.burningnightscrps.org/contact/

Phone: 01663 795 055
Email: support@burningnightscrps.org 
Website: http://www.burningnightscrps.org/

CRPS UK Clinical & Research Network
RNHRD & Brownsword Therapies Centre
Website: https://www.crpsnetworkuk.org 
Tel: 01225 473479

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Cystitis

Cystitis and Overactive Bladder Foundation
Kings Court
17 School Road
Hall Green
Birmingham
B28 8JG
Advice Line: 0121 702 0820
Email: info@cobfoundation.org
Webwww.cobfoundation.org

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Disability

Scope
6 Market Road
London
N7 9PW
Helpline: 0808 800 3333
Email: helpline@scope.org.uk
Web: www.scope.org.uk

Limbless Association
Unit 10
Waterhouse Business Centre
2 Cromar Way
Chelmsford
Essex
CM1 2QE
Tel: 0124 5216 670
Helpline: 0800 644 0185
Limb Loss Legal Panel: 0800 644 0186
Email: enquiries@limbless-association.org
Web: www.limbless-association.org

Disability Rights UK
Ground Floor
CAN Messanine
49-51 East Road
London
N1 6AH
Tel: 0207 250 8181
Email: enquiries@disabilityrightsuk.org
Web: https://www.disabilityrightsuk.org/

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Dystonia

The Dystonia Society
2nd Floor 89 Albert Embankment
Vauxhall
London
SE1 7TP
Tel: 0207 793 3651
Helpline: 0207 793 3651
Email: info@dystonia.org.uk
Web: www.dystonia.org.uk
 

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Endometriosis

Endometriosis UK
Suite 1&2
46 Manchester Street
London
W1U 7LS
Tel: 020 7222 2781
Helpline: 0808 808 2227
Web: www.endometriosis-uk.org

 

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Fibromyalgia

Fibromyalgia Association UK
Studio 3007
Mile End Mill
12 Seedhill Road
Paisley
PA1 1JS
Tel: 0844 826 9022
Fax: 0844 826 9033
Helpline: 0844 887 2444
Email: charity@fmauk.org
Web: www.fmauk.org

 

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Gout

UK Gout Society
Secretariat
PO Box 90
Hindhead
GU27 9FW
Email: info@ukgoutsociety.org
Web: www.ukgoutsociety.org

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Herpes

Herpes Viruses Association
41 North Road
London
N7 9DP
Tel: 0845 123 2305
Email: info@herpes.org.uk
Web: www.herpes.org.uk

See also Shingles

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Intestinal Disorders

Colostomy UK
Enterprise House
95 London Street
Reading
RG1 5QA
Tel: +44 (0)118 939 1537
Helpline: 0800 328 4257
Web: www.colostomyassociation.org.uk

Crohn’s & Colitis UK
1 Bishops Square (Helios Court)
Hatfield Business Park
Hatfield
AL10 9NE
Tel: 01727 830038
Helpline: 0300 222 5700
Emailenquiries@crohnsandcolitis.org.uk
Web: https://crohnsandcolitis.org.uk/

Irritable Bowel Syndrome (IBS) Network
Unit 1.12 SOAR Works
14 Knutton Road
Sheffield
S5 9NU
Tel: 0114 272 3253
Email: info@theibsnetwork.org
Web: www.theibsnetwork.org

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Kidney

Kidney Care UK
3 The Windmills
St Mary's Close
Turk Street
Alton
GU34 1EF
Tel: 0142 054 1424
Web: https://www.kidneycareuk.org/

 

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Lichen Planus

Lichen Planus
Village Farmhouse
3 Donside Road
Alford
Aberdeenshire
AB33 8QB
Tel: 07581 674274 (answerphone service only)
Web: www.uklp.org.uk
 

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Lupus

Lupus UK
St James House
Eastern Road
Romford
Essex
RM1 3NH
Tel: 01708 731 251
Email: headoffice@lupusuk.org.uk
Web: www.lupusuk.org.uk

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Meningitis

Meningitis Research Foundation
Midland Way
Thornbury
Bristol
BS35 2BS
Tel: 0145 428 1811
Fax: 0145 428 1094
Helpline: 0808 800 3344
Email: info@meningitis.org
Web: www.meningitis.org

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ME (Myalgic Encephalomyelitis)

ME Association
7 Apollo Office Court
Radclive Road
Gawcott
Buckinghamshire
MK18 4DF
Tel: 01280 818 964
Email: admin@meassociation.org.uk
Web: www.meassociation.org.uk

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Migraine

Migraine Trust
55-56 Russell Square
London
WC1 4HP
Tel: 0207 631 6970
Fax: 0207 436 2886
Email: info@migrainetrust.org
Web: www.migrainetrust.org

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Motor Neurone

Motor Neurone Disease Association
PO Box 246
Northampton
NN1 2PR
Tel: 0160 425 0505
Fax: 0160 462 4726 / 0160 463 8289
Helpline: 0845 762 6262
Email: enquiries@mndassociation.org
Web: www.mndassociation.org

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MS (Multiple Sclerosis)

MS Society of GB & NI
MS Society
MS National Centre (MSNC)
372 Edgware Road
London
NW2 6ND
Tel: 0208 438 0700
Fax: 0208 438 0701
Helpline: 0808 800 8000
Email: governance@mssociety.org.uk
Web: www.mssociety.org.uk

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Osteoporosis

Royal Osteoporosis Society
St James House
The Square
Lower Bristol Road
Bath
BA2 3BH
Tel: 0176 147 1771
Helpline: 0808 800 0035
Email: info@theros.org.uk  
Web: https://theros.org.uk/  

 

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Paget's Disease

The Paget's Association
Suite 5
Moorfield House
Moorside Road
Swinton
Manchester
M27 0EW
Tel: +44 (0) 161 799 4646
Helpline: 077135 68197
Email: helpline@paget.org.uk
Web: www.paget.org.uk

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Pain

Action on Pain
15 Blackthorn Drive
Scarning
Norfolk
NR19 2UJ

Helpline "Pain Line": 0345 603 1593 
Email: aopisat@btinternet.com
Web: www.action-on-pain.co.uk

Pain Concern
Edinburgh Office
62-66 Newcraighall Road
Edinburgh
EH15 3HS
Tel: 0300 102 0162
Helpline: 0300 123 0789 / help@painconcern.org.uk
Email: info@painconcern.org.uk
Web: www.painconcern.org.uk

Pain Association of Scotland
Suite D
Moncrieffe Business Centre
Friarton Road
Perth
PH2 8DG
Helpline: 0800 783 6059
Email: info@painassociation.com
Web: www.painassociation.com

The Pain Relief Foundation
Clinical Sciences Centre
University Hospital Aintree
Lower Lane
Liverpool
L9 7AL
Tel: 0151 529 5820
Web: www.painrelieffoundation.org.uk

Pain UK
68 Brighton Cottages,
Copyhold Lane
Lindfield
Haywards Heath
RH16 1XT
Email: info@painuk.org
Twitter: @pain_uk
Web: www.painuk.org

DIPEx
See General
Has excellent chronic pain module

SMILE Liverpool
Room 4
Christchurch Youth and Community Centre
8 Oxford Road
Bootle
Liverpool
L20 9HW
Tel: 07958528776
Web: www.smileliverpool.co.uk

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Parkinson's

Parkinson's UK
UK Office:
215 Vauxhall Bridge Road
London
SW1V 1EJ
Helpline: 0800 800 0303
Email: hello@parkinsons.org.uk
Web: www.parkinsons.org.uk

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Pelvic Pain

Pelvic Pain Support Network
Email: info@pelvicpain.org.uk
Web: www.pelvicpain.org.uk

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Polio

The British Polio Fellowship
CP House
Otterspool Way
Watford
WD25 8HR
Helpline: 0800 043 1935
Email: info@britishpolio.org.uk
Web: www.britishpolio.org.uk

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Shingles

Shingles Support Society
41 North Rd
London
N7 9DP
Tel: 0845 123 2305
Email: info@herpes.org.uk  
Web: www.shinglessupport.org
See also, www.herpes.org.uk/shingles

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Skin/Dermatological Ailments

The British Skin Foundation
A UK charity that funds research into all types of skin disease including skin cancer 
Phone: 020 7391 6341
Email: admin@britishskinfoundation.org.uk
WebThe British Skin Foundation is a UK charity that funds research into all types of skin disease including skin cancer
 

National Eczema Society 
Helpline:
0800 448 0818
Phone: 020 7281 3553
Email: info@eczema.org 
Web: National Eczema Society

 
The Psoriasis Association 
Helpline:
01604 251 620 /  or WhatsApp 07387 716 439
Email: mail@psoriasis-association.org.uk
Web: The Psoriasis Association (psoriasis-association.org.uk)
 

British Association of Dermatologists
Phone: 020 7383 0266
Email: admin@bad.org.uk
Web: https://www.bad.org.uk

 
BAD Patient Hub 
Phone: 020 7383 0266
Email:admin@bad.org.uk
WebHome - BAD Patient Hub (skinhealthinfo.org.uk)
 
Lymphoma Action
Helpline: 0808 808 5555 (press Option 1 for helpline)
Phone: 01296 619400
Email: enquiries@lymphoma-action.org.uk 
WebLymphoma Action | Skin lymphoma (lymphoma-action.org.uk)

 

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Stroke

Stroke Association
Due to office closures, please email wherever possible. 
Stroke Helpline: 0303 3300 100 / helpline@stroke.org.uk
Supporter Care: 0300 3300 740 / supportercare@stroke.org.uk
Web: www.stroke.org.uk

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Trigeminal Neuralgia

Trigeminal Neuralgia Association UK
PO Box 10973
Nottingham
NG16 9GN
Tel: 0800 999 1899
Email: admin@tna.org.uk
Webwww.tna.org.uk

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Veterans

The following services are available to military veterans.  Many of the support services are provided by clinicians with previous military experience, being either veterans or professionals with close links to the armed forces. At least two of these courses are well established having delivered multiple programmes.

Veteran Specific Services 

These services are provided by both the third sector, private healthcare (but free to veterans) and the wider NHS, and it is worth noting over 2 million men and women resident in the UK attract veteran status.  While very many of these men and women easily transition from the Armed Forces into civilian life, this is not always the case when having to deal with complex health conditions related to military service. 

Veteran Specific Pain Management and Pain Resilience Courses – There at least three organisations providing this support as follows:


The Veterans Trauma Network – This is a NHS England organisation that enables those with physical health issues related to their service to access appropriate specialist treatment.  Access to this is via GP referral. Contactengland.veteranstraumanetwork@nhs.net


Op Courage – Mental Health Support for Veterans Service Leavers and Reservists. https://www.nhs.uk/nhs-services/armed-forces-community/mental-health/veterans-reservists/ 


Other Support/Resources:

BLESMA (The Mititary Charity for Limbless Veterans).

BLESMA has a well-established support network and has a long history working with the veteran community.  While there is a qualification criteria to become a member of the organisation, thereafter these members can access appropriate support across a wide range of health and social care issues.  

Help for Heroes also have a “Veterans Clinical Services Team”, who if the intervention is appropriate, can assist military veterans who reach out to H4H when dealing with the wider providers of health and social care.

Improving Veterans MSK Rehabilitation Final Report - June 2022

  

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Vulval Pain

Vulval Pain Society 
PO Box 7804
Nottingham
NG3 5ZQ
Email: info@vulvalpainsociety.org 
Web: www.vulvalpainsociety.org

 

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