Strategy Statement and Policies
The Trigeminal Neuralgia Association UK exists to:
- Provide support, encouragement and a forum for Trigeminal Neuralgia (TN) patients and their supporters.
- Collate and share information and research material about TN and treatment options.
- Promote awareness and understanding of TN amongst the general public and healthcare professionals.
The Trigeminal Neuralgia Association UK (TNA UK) was founded in 1999 by a TN patient and a medical consultant to help sufferers throughout the UK. TN was previously thought to affect some 6,000 people, mostly women over 50. However, recent research indicates prevalence to be considerably higher at 0.1% of the population (ie, 63,000 people) and to include a greater number of younger men and women.
TN is an excruciatingly painful and debilitating condition, known as “the suicide disease”. It is a disorder of the trigeminal nerve in the face which results in its overreaction to everyday stimuli, such as talking, eating and light touch. TN triggers a violent, electric shock-like pain which can last for a few seconds to a few minutes and repeat in episodes lasting weeks and months. It causes sufferers to become isolated and withdrawn. Normal painkillers, even morphine, have no effect and it is initially treated with anti-convulsant drugs which can have very unpleasant side-effects. When these medications cease to be effective, or the side-effects become intolerable, various types of ablative and invasive surgical procedures are carried out but to date there is no known cure.
TNA UK will continue to give support and reassurance to TN sufferers, their families and friends. Run predominantly by sufferers, TNA UK understands the needs of patients and gives advice on where they can get professional help, the available treatments and pain management techniques, and help to find a pathway through to the specialist treatment they need and deserve.
In general, healthcare professionals (HCPs) currently have limited knowledge of how to recognise TN and how to treat it. The Association will promote the understanding of this condition amongst HCPs and the wider public, and seek to facilitate further research into its causes and treatment.
TNA UK aims to do everything possible to influence health policy and NHS commissioning to ensure early diagnosis and effective treatment in specialist centres.
The Association aims to establish a vital Patient Registry to extend the bounds of knowledge about TN, the circumstances in which it arises, the impact of treatments on the sufferer, their effectiveness and the long-term outcomes.
The Association will continue its fundraising activities to create a more sustainable organisation in order to make real advances in communication about TN, using new media to reach patients, carers and HCPs.
The ways in which TNA UK will continue to support members and non-members include:
Website: The newly developed website will contain a popular forum for members, online payment facilities for membership, renewals and purchases, together with a valuable resource and reference library of information and technical articles for healthcare professionals. It will be continually updated with the latest news, downloadable leaflets, references to articles and links to other useful organisations. Via the website, the Association will improve its outreach to sufferers and increase membership, as well as advise and update HCPs, particularly via the use of modern media such as Facebook, Twitter, YouTube, etc.
Helplines: TNA UK will continue to develop its Telephone and Email Helpline services that receive a regular influx of queries from the general public, often those newly diagnosed, as well as HCPs seeking advice. The Association will pursue the aim of answering all queries within 24 hours.
Publications: The Association currently has 15 separate information leaflets that are sent to new members on joining and distributed at medical conferences. Some of these are being re-written and other new ones being designed. These will be updated every three years, as is required by regulation. TNA UK’s aim is to seek Information Standard accreditation for these, together with the website.
Membership: Current membership stands at 1,200. By introducing online payment facilities, this should increase substantially and the Association aims to attract new members by other means, particularly via a publicity campaign, once the resources are in place to be able to handle this.
Local Support Groups: The Association funds a small network of Local Support Groups (LSGs) set up by volunteer members, giving Local Support Group Leaders (LSGLs) initial guidance and continuing help to run them effectively.
Raising Awareness - Educating and Working with Professionals
The Association will continue to look for innovative ways to educate primary healthcare professionals about TN, its diagnosis and treatments in order to overcome the all too common incidences and consequences of misdiagnosis. Wherever possible, the Association will ensure that medical conferences have workshops on the topic of TN with speakers knowledgeable in the field. The TNA UK’s stand will continue to be exhibited at the Society of British Neurological Surgeons, Association of British Neurologists, British Pain Society, British Dental Association, British Association of Oral & Maxillofacial Surgeons Annual Scientific conferences, plus meetings held by the Multiple Sclerosis Society, Primary-Care Neurology Society and University College London Hospitals Headache Masterclasses, wherever possible giving talks and presentations to HCPs when requested to do so.
The Association will continue to run biennial parallel conferences for patients and HCPs with joint sessions between these groups, the latter being accredited for Continuing Professional Development by the major Royal Colleges. These patient conferences are evaluated and documented internationally and the findings are published to make HCPs more aware of TNA UK as a key patient support group.
Collaboration and Influencing
The Association will continue to work with influential umbrella groups to which it belongs, such as the Neurological Alliance (NA), to guide governmental reforms of the NHS to take proper account of long-term neurological and pain conditions including TN. As one of the founder members of Pain Alliance Europe and Pain UK, TNA UK will support member charities to increase concern for the suffering and address the stigmatisation of people with pain. The Association will also collaborate with Pfizer as a designated supporter of their ‘Can You Feel My Pain?’ Campaign.
As part of Headache UK - comprising the Migraine Trust, Migraine Action, the British Association for the Study of Headache (BASH) and the Organisation for the Understanding of Cluster Headache (OUCH UK) – the Association will make representations in Parliament for better treatment of headache and facial pain sufferers. Further political pressure will no doubt result from the Pain Summit held in November 2011 at which TNA UK was represented, and via the Chronic Pain Policy Coalition.
Working with the NHS
TNA UK regularly provides NHS Direct with material on TN for their libraries / website, and will continue to deal with the queries that are directed by their call centre staff who accept that the Association’s knowledge is superior to their own regarding this relatively rare condition.
TNA UK monitors developments announced by NICE and the Medical Advisory Board will participate in any stakeholder programmes connected with TN and facial pain generally. The Association will continue to contribute comments to NICE guidelines.
Together with Oxford University Health Services Research Unit, TNA UK has developed and piloted a Carers’ Survey, the results of which will be used in future research.
The Association will continue to advertise through newsletters for the recruitment of patients for pharmaceutical trials. Executive Committee members regularly advise on research projects and are co-investigators on grant applications.
However, the major project will be the Patient Registry for TN and Chronic Idiopathic Facial Pain.
TN remains a condition for which there are still relatively few studies describing its characteristics, progression and management. To do this more efficiently, very large numbers of patients are needed. No single HCP, even with a special interest in TN, has enough patients to contribute to such studies. This is where the strength of patient groups lie. The old US patient registry collected 10,000 patient details. However, the details were not scientifically robust and only some 6,000 entries could be used. Therefore, the Association now aims to produce an improved registry through careful piloting so that details can be collected annually.
Two joint HCP/Patient conferences have resulted in the development of a patient research survey, the first of which was piloted in the USA in 2010 by the Medical Advisor and Chairman. The survey will ultimately be used worldwide, in collaboration with other TNA organisations. This work will lead to the development of an international Patient Registry which can then be analysed by experts to give an improved understanding of this disorder. Thus, TNA UK will play a crucial role in this major research project. Given the ethical and practical limitations of randomised control trials, the Patient Registry will represent a major step forward in research into the condition.
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Page last updated on 11 Jul 2016