The Trajectories of Outcome in Neurological Conditions (TONiC)
study is a multicentre longitudinal study on the quality of life (QoL) of patients with neurological conditions. It aims to identify factors that affect quality of life in conditions such as Multiple Sclerosis (MS) and Motor Neurone Disease (MND) with particular emphasis on those which clinical services may be able to influence. These factors will be modelled to help us improve the QoL of future patients. The study has been adopted by CLRN and DeNDRoN.
TONiC is one of the largest studies on quality of life in disabling neurological conditions ever conducted, recruiting 2000 patients with MS of any subtype and at any stage of the illness. As an advocate of patients with Multiple Sclerosis (MS) and a healthcare professional, you have unique insight into the QoL of those under your care. TONIC is asking for less than 5 minutes of your time per week for 8 weeks to improve QoL for your patients and contribute to data which will shape future service provision.
How can I be involved?
The Professionals’ Forum is an online question-based tool. It utilises the expertise of healthcare professionals to identify disease-specific physical and psychosocial aspects of QoL in neurological conditions. The feedback obtained from professionals, alongside the input received from more than 2500 patients over 30 sites throughout the UK, will be used to produce disease-specific models of QoL. MS Specialist Nurse’s expertise is essential in ensuring the models produced have face validity, applicability and value in clinical practice. Please log on to the TONIC website and complete 8 short questionnaires – one per week for 8 weeks (each lasting less than 5 minutes) – to influence the development of these models and future clinical practice.
What is the role of the Professionals’ Forum?
The Professionals’ Forum is crucial. For example, we have identified potential factors through interviews and focus groups with patients and will now use input from the Professionals’ Forum to ensure all relevant factors are included in the questionnaire pack and to design the model to be tested.
Who can join?
Any clinician with experience in the care of people with MS, whatever their level of expertise and irrespective of whether or not they are also recruiting for TONiC. You may also forward this e-mail to any UK clinician, but please restrict only to the UK as the model is developed for UK patients.
What would I have to do if I join?
If you do agree to take part in the study, you will first be asked to read an information leaflet and sign an online consent form. We will then e-mail you weekly to complete brief surveys online via computer, smart phone or tablet. We are aware of how busy clinicians are so the time commitment will be less than 5 minutes per week for 8 weeks and study progress can be tracked online. The online surveys may be filled in as they are released, or at any time until the forum has closed.
What happens to my responses? How are they used?
Your results are analysed anonymously and it will never be possible for an outside party to know how you responded.
We will use the professionals’ answers to shortlist factors that professionals think matter, and we will also ask your opinion about the model, because our method tests a model which arises from clinical expertise rather than statistical derivation. When we disseminate the tested model, we want it to have face validity to clinicians in the field.
People with MS or MND at any stage of their illness are also welcome to participate.
The results from TONiC will be used to tailor services, to focus therapies and to identify aspects of these conditions that are important to patients, but might be underestimated by current service provision. As a patient, you can inform your neurological team that you wish to take part, by doing questionnaires at home by post or on the internet.
To access the forum please go to: www.tonicstudy.org If you require any further information, please do not hesitate to contact Nadia Rose.
Vote for your top research questions
Last year the MS Society launched a partnership to find the top 10 unanswered research questions in MS - giving people affected by MS and healthcare professionals a voice in setting priorities for MS research.
After canvassing the views of the MS community we have developed an impressive list of research questions that need prioritising. Tell us which questions you think should be prioritised for research. The most voted for questions will go forward to a workshop and narrowed down to the top 10.
If you have MS, are personally affected by MS or are an MS healthcare professional – please have your say and vote!
You can vote online – just follow the on screen instructions. If you would like to vote by post please contact Mital Patel on firstname.lastname@example.org. The survey will remain open until Friday 24 May 2013.
This partnership is supported by the MS Society, James Lind Alliance, UK MS Specialist Nurses Association, MS National Therapy Centres and Association of British Neurologists.
Link to survey: https://www.surveymonkey.com/s/K9JZSV3
Link to JLA page: http://www.mssociety.org.uk/JLA
MS Trust call for research proposals
Transition from relapsing remitting to secondary progressive MS
The MS Trust is inviting proposals for a qualitative research project on the transition from relapsing remitting to secondary progressive MS. Project funding is available up to £50,000. Please follow the link to the call for proposals where you can also download the application form. The closing date for applications is 31st May 2013.
If you have any questions or wish to chat informally about the project, please contact Mercy Jeyasingham, Research Project Manager at email@example.com.
MS Activity Weekend
Friday 24th - Monday 27th May 2013
For people with MS, their families and friends
Choose from a variety of activities or relax in the tranquil setting of the beautiful
Kielder Water & Forest Park.
3 Nights £317
- Some places still available - NOW REDUCED TO £250 Includes accommodation, activities and all meals. Respite Care Package (over 18)
is now FULLY BOOKED for this weekend.
To book call 01434 250232 or
email firstname.lastname@example.org For more information: www.calvert-trust.org.uk
Calvert Trust Kielder, Kielder Water & Forest Park, Hexham, Northumberland, NE48 1BS
Telephone: 01434 250232
Registered Charity No. 511851 company limited by guarantee. Registered in England No.1596913
QIPP – Quality, Innovation, Productivity and Prevention – is a large scale transformational programme for the NHS, involving all NHS staff, clinicians, patients and the voluntary sector. It will improve the quality of care the NHS delivers while making up to £20billion of efficiency savings by 2014-15, which will be reinvested in frontline care.
CCGs implementing all three drivers of the LTC QIPP workstream: risk stratification, systemising self care and the creation of local integrated health and social care teams, are beginning to see an impact from all their hard work. Better still the majority of teams engaged are meeting their milestones to implement the three drivers, which will mean even more patients will benefit - a great achievement. The LTC QIPP national coaches have played an integral role in supporting local delivery through the creation of local multidisciplinary teams to embed large scale change and service improvements. For more information on QIPP go to http://www.dh.gov.uk/health/category/policy-areas/nhs/quality/qipp/
MS Today - a magazine for MS Nurses and Therapists
The magazine is intended as an educational tool and also a way for nurses to share best practice. Regular content will include clinical news updates, features on hot topics such as audit and interviews with nurses, as a way of sharing best practice - stories such as setting up new services / methods to helping patients self-manage etc, forthcoming events.
There is also an online Clinical Communities resource for MS Specialists which provides e-learning, news, networking and other resources.
Full members of the UKMSSNA will automatically receive a free copy. Any other MS specialist can register to receive the magazine
Download registration form
The MS Society has produced a document to help explain the changes in various benefits. Download it here. For more information visit the MS Society website
MS Society Information Services
The newsletter from the MS National Centre (MSNC) Information Services
team is a simple way to keep up to date with new resources, information events and examples
of good practice from around the country.
The info team is there to support people affected by MS to access up-to-date evidence based
information and to signpost to other sources of expertise. Through working with colleagues at
MS National Centre and locally we can together meet the information needs of everyone affected by MS.
Contact the MS Society Information Team at or phone 020 8438 0799.
The MS Trust Information Service
Whatever your question about MS, the MS Trust’s Information Team is there to help you try and find the information you need. Using their collection of medical papers, textbooks and other resources, they will find information to match your particular questions, whether it be symptoms or treatments or literature searches to help with service development.
Contact the MS Trust Information Team or phone 01462 476700