Useful organisations and links for further information

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

* CentreWatch is not a registered charity

DIPEx (Database of patient experiences)
Email: [email protected]
Web: www.healthtalk.org

European Pain Federation (EFIC)
E-mail: [email protected]
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: [email protected]
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: [email protected]
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: [email protected]
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
Web: https://www.practicalpainmanagement.com/treatments/complementary/self-management-chronic-pain-primary-care

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

Versus Arthritis
Copeman House
St Mary's Gate
Chesterfield
Derbyshire
S41 7TD
Tel: +44 (0) 300 790 0400
Helpline: 0800 5200 520
Email: [email protected]
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: [email protected]
Web: www.nras.org.uk

BackCare
16 Elmtree Road
Teddington
Middlesex
TW11 8ST
Tel: 0208 977 5474
Email: [email protected]
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: [email protected]
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: [email protected]
Web: www.spinal.co.uk

Breast Cancer Care
5-13 Great Suffolk Street
London
SE1 0NS
Tel: 0845 077 1895
Helpline: 0808 800 6000
Email: [email protected]
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: [email protected]
Web: www.leukaemiacare.org.uk

Lymphoma Association
PO Box 386
Aylesbury
HP20 2GA
Tel: 0129 6619 400
Helpline: 0808 808 5555
Email: [email protected]
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: [email protected]
Web: www.mesothelioma.uk.com

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

Mesothelioma Center
Web: https://www.asbestos.com/mesothelioma/

Burning Nights CRPS
Burning nights CRPS can be contacted via the contact form on their website.
Phone: 01663 795 055
Email: [email protected] 
Web: http://www.burningnightscrps.org/

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

Cystitis and Overactive Bladder Foundation
Kings Court
17 School Road
Hall Green
Birmingham
B28 8JG
Advice Line: 0121 702 0820
Email: [email protected]
Web: www.cobfoundation.org

Scope
6 Market Road
London
N7 9PW
Helpline: 0808 800 3333
Email: [email protected]
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: [email protected]
Web: www.limbless-association.org

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

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

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

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: [email protected]
Web: www.fmauk.org

UK Gout Society
Secretariat
PO Box 90
Hindhead
GU27 9FW
Email: [email protected]
Web: www.ukgoutsociety.org

Herpes Viruses Association
41 North Road
London
N7 9DP
Tel: 0845 123 2305
Email: [email protected]
Web: www.herpes.org.uk

See also Shingles

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
Email: [email protected]
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: [email protected]
Web: www.theibsnetwork.org

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

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

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

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

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

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

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: [email protected]
Web: www.mndassociation.org

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: [email protected]
Web: www.mssociety.org.uk

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

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

Action on Pain
15 Blackthorn Drive
Scarning
Norfolk
NR19 2UJ
Helpline "Pain Line": 0345 603 1593 
Email: [email protected]
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 / [email protected]
Email: [email protected]
Web: www.painconcern.org.uk

Pain Association of Scotland
Suite D
Moncrieffe Business Centre
Friarton Road
Perth
PH2 8DG
Helpline: 0800 783 6059
Email: [email protected]
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: [email protected]
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

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

Pelvic Pain Support Network
Email: [email protected]
Web: www.pelvicpain.org.uk

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

Shingles Support Society
41 North Rd
London
N7 9DP
Tel: 0845 123 2305
Email: [email protected]  
Web: www.shinglessupport.org
See also: www.herpes.org.uk/shingles

The British Skin Foundation
A UK charity that funds research into all types of skin disease including skin cancer 
Phone: 020 7391 6341
Email: [email protected]
Web: www.britishskinfoundation.org.uk/

National Eczema Society 
Helpline: 0800 448 0818
Phone: 020 7281 3553
Email: [email protected] 
Web: eczema.org/

The Psoriasis Association 
Helpline: 01604 251 620 /  or WhatsApp 07387 716 439
Email: [email protected]
Web: www.psoriasis-association.org.uk/

British Association of Dermatologists
Phone: 020 7383 0266
Email: [email protected]
Web: https://www.bad.org.uk

BAD Patient Hub 
Phone: 020 7383 0266
Email: [email protected]
Web: www.skinhealthinfo.org.uk/
 
Lymphoma Action
Helpline: 0808 808 5555 (press Option 1 for helpline)
Phone: 01296 619400
Email: [email protected] 
Web: lymphoma-action.org.uk/types-lymphoma/skin-lymphoma

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

Trigeminal Neuralgia Association UK
PO Box 10973
Nottingham
NG16 9GN
Tel: 0800 999 1899
Email: [email protected]
Web: www.tna.org.uk

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.

NHS SUPPORT

Scope of the Issue within the Veteran Community

There are currently 2 million military Veterans in the United Kingdom[1].  On transition to civilian life these men and women rely upon provision of statutory NHS services for ongoing support - This is often very different to the medical care provided while serving, especially if they have previously accessed specialist military rehab programmes.

Background - The Veterans Charter

There are some provisions that look to ensure military personnel are not disadvantaged by their service when they leave the Armed Forces.  In particular, The Veteran’s charter exists to ensure those who have served are not disadvantaged on transition from military to civilian life. 

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/578212/20161215-The-Armed-Forces-Covenant.pdf

NHS SUPPORT

As a result of this, the NHS now provide bespoke support for Veteran’s with ongoing Mental and Physical Health issues as a result of Military Service

OP RESTORE

(Formally the Veterans Trauma Network – (VTN)

• A very useful service that allows veterans access the most appropriate NHS pathway when dealing with the ongoing effects of injuries/illness sustained in service once back in civilian life.  Referral is through GP as the VTN require current clinical information. (egg ongoing issues with prosthetics, orthotics and specialist pain management).   
• VTN assess if the patient is on the correct NHS Pathway for the condition/symptoms.  If so, they may provide advice to the treating clinicians.
• If it is felt following a multi-disciplinary meeting that a different referral pathway might be helpful, then that referral is made by the VTN and the GP is advised in writing to allow appropriate clinical intervention that best suits the needs of the veteran.

https://www.esneft.nhs.uk/armed-forces-veterans-group-afvg/the-veterans-trauma-network/

OP COURAGE

Op COURAGE can help Veterans and families with a range of support and treatment, including:

• Treating  early signs of mental health problems, as well as more advanced mental health conditions and psychological trauma
• Providing support and treatment for substance misuse and addictions
• Liaising with charities and local organisations to support your wider health and wellbeing needs, such as help with housing, relationships, finances and employment
• Supporting armed forces families affected by mental health problems, including helping them to access local services
• Support during transition from military to civilian life

https://www.nhs.uk/nhs-services/armed-forces-community/mental-health/veterans-reservists/

MILITARY VETERANS

CHRONIC PAIN MANAGEMENT & OTHER BESPOKE SERVICES

3rd SECTOR & OTHER SUPPORT

Veteran Specific Pain Management/Resilience Courses

Supporting Wounded Veterans (SWV)

• Supporting Wounded Veterans (SWV) – Virtual Pain Resilience Program - a 12 week long “Pain Resilience Course”.  Designed to be accessed outside working hours, with dedicated support workers and delivered virtually. 

This needs a GP referral via a templated letter and is delivered on zoom.  Led by a military veteran with input from clinical specialists in the first 5 weeks. The clinical lead is Dr Dominic Aldington (an ex-military pain specialist now in the NHS).  This is a Peer support program that also includes 5 x “information sessions” that cover pain, medical and other issues that affect the way individuals manage chronic pain and its long term effect. 

https://www.supportingwoundedveterans.com/painresilience 

POC: [email protected] or [email protected]

Veterans Opioid Reduction Service

• SWV also offer a pathway into an NHS “Veterans Opioid Reduction Service (Lead clinician - Dr Dominic Aldington at the Royal Hampshire county Hospital).
• This service accessed via short GP Referral via the Pain Clinic at the Royal Hampshire County Hospital in Winchester – (Proof of Service may be required as Veterans are fast-tracked)  - POC - [email protected]    

King Edward VII Hospital London – Centre for Veteran’s Health

• King Edward VII Hospital London – Pain Management Programme – A 10 day course, currently delivered virtually (Prior to the C19 Pandemic this was a residential program).  Available free of charge to veterans - accessed via a self-referral and GP endorsement. 

Running since 2015, 600+ veterans have accessed this specialist support during this time and is delivered by three clinicians. (A clinical psychologist, a specialist pain nurse and a specialist pain physio).   

https://www.kingedwardvii.co.uk/the-charity/veterans-pain-management-programme

Help for Heroes – Recovery College

• They provide free courses designed to give students knowledge and skills to manage their own physical and mental well-being, so that they can move forward in their lives with confidence. All courses are co-designed and co-delivered by veterans, family members, and recovery staff.

https://www.helpforheroes.org.uk/get-help/recovery-college/self-help-guides/

Help for Heroes – Recovery College - Living with and Beyond Your Pain

• A course designed to develop and Understanding what is happening when pain is experienced, and identifying your own responses to pain and coping strategies you can apply. - Current format - 6 x 3 hour Sessions delivered over zoom. 

https://www.helpforheroes.org.uk/get-help/ask-for-help/

Help for Heroes – Clinical Advisors  

• Help for Heroes also have a bespoke team of clinical advisors who may be able to support those navigating their way thru the NHS in order to get the most appropriate support for any issue related to their service. Theses nurses and occupational therapists have experience working with veterans, and many have served in the Armed Forces

https://www.helpforheroes.org.uk/get-help/physical-health/

MILITARY VETERANS

• The Veterans ID Card An HM Armed Forces Veteran Card is a way to prove that you served in the UK armed forces. The card can make it quicker and easier to apply for support as a veteran, and is often used to prove eligibility when accessing Veteran Specific services.  They can be applied for either online, or by completing a paper application.

https://www.gov.uk/veteran-card

OTHER GOVERNMENT ALLOWANCES AND BENEFITS

• Those with ongoing healthcare issues, and those who may care for them, may be able to claim on a number of Government Benefit Schemes. In addition to this a wide range of other Government initiatives are available, designed to support in a wide range of circumstances.
• It is also of note that certain disability benefits, (Including Personal Independence Payment), are not means tested, and can often act as “gateways” to addional support.  Given that everyone’s circumstances will be unique, there a number of benefits calculators that exist to allow you explore your own circumstances, before either making a claim or looking for further support.

https://www.gov.uk/benefits-calculators

Other Areas to Consider – Citizens Advice, Single Service Military Charities, Regimental and Squadron Associations

• Agencies such as Citizen’s Advice Bureaux, and other more targeted military charities, Regimental and Squadron Associations and other affiliated organisations may also be able to help.

OTHER SOURCES OF SUPPORT – GETTING OUT AND ABOUT

For those with mobility and other physical and mental health challenges a number of schemes exist that allow for easier access to a wide range of services.   While many require appropriate supporting medical evidence to be supplied with any application, (eg evidence of a DWP PIP award or a War Pension WPMS Allowance), they can provide for a great deal of increased independence. These include:

• The Blue Parking Badge Scheme

https://www.gov.uk/apply-blue-badge

• The Motability Scheme

https://www.motability.co.uk/c/everydayfreedom/?gad_source=1&gclid=CjwKCAiAt5euBhB9EiwAdkXWO8CX1PSjHOQG_bmP195PXjk9fd8Vw9Y7UE0pS4iYCRjtlZ1LlZ10hBoCmd4QAvD_BwE

• The CEA Card - A national card scheme developed for UK cinemas by the UK Cinema Association (UKCA).  This enables a disabled cinema guest to receive a complimentary ticket for someone to go with them when they visit a participating cinema.

https://www.ceacard.co.uk/

• The Nimbus Access Card - The physical card acts as a photo ID that can be used to easily communicate your access requirements to events and venues, so that the venues can provide accessibility to the needs of their visitors. It also works online with other platforms like ticketing systems, to unlock the access facilities you need.

This card is widely used in London (and will allow the holder to attend “accessible” performances of West end and other shows), and across various large venues (theme parks etc) in the UK. 

https://www.accesscard.online/

• Other Accessible Schemes – Museums Galleries and Professional Sports - Accessibility schemes are run by many professional football, rugby and other sporting teams, as well as by many national museums and galleries.  (Wembley and Twickenham Stadiums operate such schemes, as do the Imperial War Museums Group and the National Trust).  Most organisations have an “Accessibility” tab on their webpages, along with a dedicated telephone helpline or email address

[1] Veterans are defined as anyone who has served for at least one day in Her Majesty’s Armed Forces (Regular or Reserve) or Merchant Mariners who have seen duty on legally defined military operations, split 60% over 65 – 40% under 65.

Vulval Pain Society 
PO Box 7804
Nottingham
NG3 5ZQ
Email: [email protected] 
Web: www.vulvalpainsociety.org