Patient Information

 

 

Action on Pain is a national charity established in 1998 by Ian Semmons.

 

Apparelyzed is a free spinal cord injury peer support website run by individuals with spinal cord injuries

 

 

Promotes the health, wellbeing and independence of people with arthritis.

 

Produces a range of booklets and factsheets to help people understand their conditions.

 

Through its projects and programmes, Aspire offers practical support to the 40,000 people living with a spinal cord injury in the UK so that they can lead fulfilled and independent lives in their homes, with their families, in work places and in leisure time.

 

Creates awareness, with valuable input from people living with chronic pain, professionals, and those affected by chronic pain.

 

Back Up is for everyone affected by spinal cord injury, regardless of age, level of injury, or background. We are here for family members too.

 

BackCare aims to significantly reduce the burden of back pain by providing information and education to all people and organisations affected by back pain and to fund scientific research into the causes, prevention and management of back pain.

 

Make better health decisions, with Best Health information from BMJ Group. Best Health gives you reliable, easy-to-understand information, to help you make the best decisions about your healthcare.

 

For the past 27 years BASIC has been providing counselling, information and support services for patients and their families following a brain or spinal injury. Although a relatively small charity BASIC supports patients in a number of ways nationally, regionally and locally. We have significantly raised awareness of conditions affecting the brain and led the way in raising funding for research projects and life saving new technology.

 

The Brain and Spine Foundation is a registered charity providing support and information to people affected by neurological conditions, their families and carers all over the UK. The helpline is staffed by neuroscience nurses and a range of publications is available through the website.

 

The Cauda Equina Syndrome UK Charity promotes and provides the much needed support to CES sufferers, and also their close family members and their carers. Plus health care professionals through the provision of support, education and also practical advice. The support we give to our members is in a safe environment, which has reliable accurate information given. All information is given to us by reliable professionals who are experts in their field.

Chris Yeates Spinal Cord Injury Trust

www.cy-sci.co.uk

info@cy-sci.co.uk

 

The Chris Yeates Spinal Cord Injury trust was set up to offer advice and support to people that have suffered a spinal cord injury as well as their families and partners.

Colin Javens Spinal Injury Trust

www.colinjavens.com

valjavens@hotmail.com

 

Spinal cord injury could happen to anyone! In July 2000, aged 20, it happened to Colin Javens when he dived into sea that was too shallow. He broke his neck, and is now paralysed from the shoulders down. He retains limited arm movement but unless there is a miraculous scientific breakthrough he won't walk again - a devastating accident! Colin, however, has refused to be beaten by paralysis.

Disabled Living Foundation

www.dlf.org.uk

info@dlf.org.uk

 

DLF is a national charity providing impartial advice, information and training on independent living since 1969. It is a founder member of the Information Standard, a certification scheme for health and social care information.

 

DISCS works hard to raise funds to sponsor medical research workers and spinal surgeons who are conducting research to into the fundamental causes of back pain and working towards  developing new and innovative approaches to transform the treatment of pack pain.  There is a growing need for this research, as debilitating back pain can affect up to 80% of the UK population at some point in their lives.

 

Mentoring, education and inspiration for people who are adjusting to life after a spinal cord injury or stroke.


 

INSPIRE recognises that a cure will be found to repair the damaged spinal cord but in the meantime, it funds research projects which are designed to lead to an improvement in the quality of life.


International Spinal Cord Society

www.iscos.org.uk

admin@iscos.org.uk

 

The Spinal Unit at Stoke Mandeville Hospital was founded in February 1944 by Dr Ludwig Guttmann (later Sir Ludwig Guttmann). It was a Ministry of Pensions Hospital for the treatment of injured servicemen and ex-servicemen. In 1952 it became the National Spinal Injuries Centre, part of the British National Health Service.

 

The James Lind Alliance (JLA) is a non-profit making initiative which was established in 2004. It brings patients, carers and clinicians together to identify and prioritise the top 10 uncertainties, or "unanswered questions", about the effects of treatments that they agree are most important.

 

Welcome to the Matt Hampson Foundation website. The Foundation provides help, advice and financial support for young people seriously injured through sport. Please take time to view our short video presentation above to get an insight to the work that Matt and his team at the Foundation do.

Multidisciplinary Association of Spinal Cord Injury Professionals

www.mascip.co.uk

mascipsecretary@hotmail.co.uk

 

The Association's prime objective is to provide a national professional forum to promote standards in clinical practice, foster research and encourage the development of health and social care services for people with spinal cord injuries. MASCIP exists to enable all professions and grades of staff associated with the care and welfare of people with Spinal Cord injuries, both within and outside of Spinal Cord Injury Centres, to articulate professional issues and concerns. On behalf of its membership, MASCIP will also lobby service commissioners, healthcare providers and the Department of Health on issues of significant professional concern.

 

National Voices brings the voices of patients, service users and carers to bear on national health and social care policy in England. We work with our large and varied membership to influence government ministers and departments, professional bodies, and other organisations, seeking always to ensure that policy focuses on delivering what matters most to patients and service users, their families and carers.

 

The Neurological Alliance is a campaigning organisation – the collective voice of over 70 brain and spine charities and other key stakeholders in England.

Nicholls Spinal Injury Foundation

nichollsfoundation.org.uk

info@nichollsfoundation.org.uk

 

The Nicholls Spinal Injury Foundation (NSIF) was founded by chef David Nicholls following an accident in which his son, Daniel, was left paralysed from the arms down. Daniel had been standing in water between the safety flags on Bondi Beach, when he dived into an oncoming wave, hit an unseen sandbank and broke his neck.

 

From the very beginning Pain Concern has brought together people living with pain and healthcare professionals specialising in this area to provide support and information and to campaign and advocate for better awareness, understanding, treatment and management of pain.

 

Information on chronic pain conditions.

 

 

Pain Support

www.painsupport.co.uk

 

Information on pain management techniques, message boards and a support club.

 

 

In 1944 the life expectancy for someone who sustained a spinal cord injury (SCI) was just 3 months. No treatment existed and people were left to die. This situation completely changed because of the founding of spinal cord injury treatment by Professor Sir Ludwig “Poppa” Guttmann.

 

REGAIN is the only charitable organisation dedicated solely to improving the independence of all British men and women who have became tetraplegic as a result of a  sports or leisure injury.

RFU Injured Players Foundation

www.rfuipf.org.uk

davephillips@rfu.com

 

The IPF provides support and information to those who sustain a catastrophic injury as a result participating in rugby union, to empower them to lead as full and independent life as they are able to. We also work with all stakeholders to reduce the risk of these and other injuries in the game.

 

Helping those affected by spinal injury.



Scoliosis Association of the United Kingdom

www.sauk.org.uk

info@sauk.org.uk

 

The Scoliosis Association (UK) (SAUK) aims to provide advice, support and information to people with scoliosis and other spinal conditions, including kyphosis and lordosis.

Southern Spinal Injuries Trust

www.ssit.org.uk

info@ssit.org.uk

 

The Southern Spinal Injuries Trust is a regional charity set up to support the Duke of Cornwall Spinal Treatment Centre and people with spinal cord injury in the South and South West of England.

 

The Spinal Injuries Association (SIA) is the leading national charity for spinal cord injured people. We are unique in that we are a user led organisation; our elected Trustees are all spinal cord injured and are voted for by the spinal cord injured membership.

Spinal Injuries Scotland

www.sisonline.org

info@sisonline.org

 

Spinal Injuries Scotland is the national voluntary organisation concerned with new and long-term spinal cord injured people, their relatives and friends, along with those involved in the management, care and rehabilitation of the injury.

Spinal Injury Northern Ireland

www.spini.co.uk

info@spini.co.uk

 

Sp.I.N.I. (Spinal Injury Northern Ireland) is a new and exciting charity which specialises in “post hospitalisation” rehabilitation for all ages. Our aim is to provide individuals with support in social care and use of equipment for spinal injuries in their own area.

 

Spinal Research is the UK’s leading charity funding medical research around the world to develop reliable treatments for paralysis caused by a broken back or neck.

Spinal Unit Action Group

www.suag.co.uk

suag.suag@tesco.net

 

SUAG (Spinal Unit Action Group) is a UK based charitable organisation working for past and present patients of the North West Regional Spinal Injuries Centre based in Southport.

Spine Patient Society

www.spinepatientsociety.org

 

The Spine Patient Society™ supports & advocates on behalf of patients who have suffered spine injuries or disorders. Patients with spine disorders often feel overwhelmed and alone in their pain and often feel like there is no place to turn for support. The great majority of Spine Patients are confused about their medical condition(s) and are truly uncertain what this means in regard to their future health and well-being. The Spine Patient Society™ has been created to help demystify the “medical jargon,” diagnoses and treatments that surround the lives of Spine Patients in an effort to help educate these patients about their disorders while providing much needed social support.

 

SPIRIT is an international charity whose aim is to improve the treatment and care of people with spinal cord injury.

 

Sportability, a registered charity, provides sport and challenging pursuits for people with paralysis around the UK. People with conditions such as spinal cord injury, stroke, MS and others, are able to participate in a whole range of sports - scuba diving, sailing, archery, angling, abseiling, quad-biking, gliding, canoeing, clay pigeon shooting, go-karting, land-yachting, wheelchair tennis and many more.

Stoke Mandeville Spinal Foundation

www.smsf.org.uk

charlotte.minoprio@smsf.org.uk

 

To improve the quality of life of people with spinal cord injury through research. To promote excellence and sustainability in applied clinical research into spinal cord injury.

 

We are a small UK based charity with over 1000 members whose main aim is to offer support to those who may have, or know someone with, Transverse Myelitis and its associated conditions such as ADEM, Neuro Myelitis Optica (NMO) and others. We are manned by an entirely unpaid voluntary group of people who mostly have TM themselves.

 

To improve the quality of life and life expectancy of people with spinal cord injures and their family members through peer taught carer training in developing nations.

 

Walkoncemore was set up at the end of 2006 to help those currently living with the after-effects of SCI, as well as those yet to be injured. With a great interest in the promise of a cure for this devastating condition, a small group of Trustees came together with a view to doing all they could.

 

Transforming lives through sport.


Wings for Life Spinal Cord Research Foundation

www.wingsforlife.com

nikki.wilson@wingsforlife.com

 

The driving forces behind Wings for Life are the two-time motocross world champion Heinz Kinigadner and the founder of Red Bull, Dietrich Mateschitz. In 2003, Kinigadner's son Hannes had a tragic accident which left him tetraplegic.