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 mpatel@mssociety.org.uk. 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 research@mstrust.org.uk.

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 enquiries@calvert-kielder.com  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 BRIEFING

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

 

 

 

Benefits FAQ  MS Society

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

What Members say about the UKMSSNA:

• "I feel the UKMSSNA is the voice of MS Specialists.  There is a huge amount of knowledge and experience invested.  I take a great deal of reassurance from knowing that there is an easily accessible responsive forum that I can tap into when I am struggling."
  
  
• "The UKMSSNA provides an excellent service as it is.  The website provides a very valuable source of information.  Our profession is constantly being challenged with new government strategies and it is good to know that the UKMSSNA is constantly working on projects to assist us in these challenging times.  Thank you!!"
  
  
• "I feel that the UKMSSNA offers support and advice in an easy and quick way.  It is especially useful to those nurses who work alone and do not have the support of other MSSNs available at their workplace."
  
  
• "I find the UKMSSNA really supportive and well worth the subscription!  Thank you."

For more information and to download application forms go to the Membership page.

What patients say about MS Nurses:

• "The MS nurses have made me aware of all that is available for me. ...It is reassuring to know they are there."

• "My MS Nurse is nothing short of a lifeline for my husband and me."

• She organises meetings for patients and invites guest speakers to cover different subjects of concern.  She gladly seeks out any information I require."

• "She has a greater understanding of MY condition than any other healthcare professional.  Her years of experience mean that she can always answer my questions when others cannot."

• I do not think that anyone has the understanding and empathy that the MS nurses have. GPs do not have the understanding as they have to deal with so many other illnesses.  Who else do you phone for advice or help when you are concerned or worried?"

• I cannot thank the MS nurses enough for the care and support they have given me.  It is so reassuring to be seen and to speak to specialists.  I have read a lot about MS and have a very supportive family, but the support I get from the MS Nurses cannot be found anywhere else.  Thank you."

• The MS Nurse is always approachable and talks to you as an individual yet draws on experience she has gained with similar patients.  I can talk to an MS nurse more easily than a neurologist."

The Role of the MS Specialist Nurse

MS Specialist Nurses are experts in nursing and the specialist requirements of patients with complex health problems. Patients want specialist nurses to meet their special health needs and MS nurses are able to provide regular and ongoing assessment and support that is not provided traditionally within the medical model.   They promote a "wellness" approach and coach patients to live healthily throughout the disease trajectory. 

In 2001 the role of the MS Specialist Nurse was identified as

"[to] Empower those affected by MS by providing information, support and advice about the condition from time of diagnosis and throughout the disease spectrum.  The MS specialist nurse is pivotal in providing a greater understanding of the condition, and by adopting an holistic, collaborative and co-ordinated approach can help those individuals, where possible, reach their goals of self management.   The role also involves acting as a consultant and educational resource for staff striving towards greater awareness and knowledge of MS in the health and social arena."

(MS Trust, UKMSSNA, RCN. Specialist nursing in MS – the way forward: the key elements for developing MS specialist nurse services in the UK. MS Trust, April 2001.[out of print])

Education is an important part of MS Nursing and includes providing information to:

• Patients and their families
• Carers
• Health and Social Care professionals
• Student nurses
• Employers

There are now around 300 MS Nurses throughout the UK and there is a more strategic approach to new posts and an acceptance of the MS Specialist Nurse as a mainstay of MS management together with the emergence of models within MS Nursing with a clearer definition of the role.

MS Nurses now support thousands of people with MS, including those on treatments.  The responsiveness and accessibility of MS Nursing Services are highly valued and the role has expanded to include MS nursing research, publication, and service development.  The evolution of the role has enabled those with MS to enjoy a higher quality of life.  

MS Specialist Nurses provide:

• "Newly diagnosed" courses which gives an introduction to MS, with speakers discussing various aspects of living with MS
• Nurse-led clinics problem-solving, assessment, lifestyle advice, support.
• Symptom management
• Initiation and monitoring of Disease Modifying treatments (where appropriate)
• Home visits (as appropriate)
• Lifestyle advice
• Telephone advice line
• Referral to other disciplines/ agencies, e.g. physiotherapy, speech therapy, occupational therapy
• Education to health professionals study days, link interest group for professionals with an interest in MS
• Drop-in sessions held at local venues, e.g. health centres, community hospitals, MSS branch meetings
• They are also present at consultant and multi-disciplinary clinics.

The MS Specialist Nurse should be contacted:

• If you have a question about your MS or treatment options
• If you are concerned by any symptoms you are experiencing
• If you think you may be having a relapse
• If you are finding it difficult to cope with any aspect of your MS
• If you need advice about medication
• If you want any information about MS

MS Nurses generally work Monday to Friday 9.00-5.00 excluding bank holidays. They are often out of the office in clinic or on home visits and but it is generally possible to leave a message and they will ring you back when they are free. They may not be able to respond for a couple of days because of other commitments.

Map of MS Services

If you want to find out if there is an MS Nurse near you, go to the MS Trust online Map of Services or the MS Society Map of MS Centres

UKMSSNA Publication: Multiple Sclerosis Specialist Nurses: Adding value and delivering NHS targets

Written at a time of great change within the NHS, this document is targeted at commissioners, PCT fund holders, Directors of Nursing, service managers and others involved in the provision of health services.  The document identifies the value and benefits of employing MSSNs in terms of cost effectiveness as well as clinical efficiency.

Adding value and delivering NHS targets

MS Nursing International Certification Examination

Registered Nurses with at least two year's experience (recommended) in MS Nursing can take the MS Nursing International Certification Examination.  The examination consists of 150 multiple-choice questions and it normally takes place in the UK on the morning of the first day of the MS Trust Conference in November. 

MS Nurses who wish to take the exam can apply through the UKMSSNA, in which case they must be a member of the Association.   Candidates can also apply to the IOMSN for a bursary towards the cost of the exam fee ($300).   Candidates may have to pay part of the fee themselves, normally a nominal amount.   Members of the UKMSSNA currently do not have to make any contribution as the balance of the fee is covered by the Association. 

Please Note:  You MUST apply through the UKMSSNA if you wish to apply for a bursary towards the exam fee.  Contact the Administrator for more information and an application form.

For more information and to download an Exam Handbook, go to the Professional Testing Corporation website.

MS Specialists International Examination

MS Specialists who are not nurses might wish to consider sitting the Specialists Exam.  We need to point out that the exam is based on North American practice and so the content may have specific meaning to practice standards for the USA and Canada.  However, if the demand is sufficient the CMSC may investigate the possibility of designing an exam with a global focus.  Although the exam is computerised in North America, it will be a paper and pencil exam in the UK (i.e. same as the Nurses' exam - a multiple-choice exam).

For more information about the MS Specialists Exam and to download an Exam handbook, go to the Professional Testing Corporation website (please note this is a different link from the one above - please make sure you have the correct exam for your discipline).

Re-certification

Exam Certification lasts five years and then you must re-certify through Learning Activities or by re-sitting the exam.  In 2012 the people who passed the exam in 2007 will be due for re-certification.

Details of re-certification can be found on the MSCNIB/PTCNY website.

For details of candidates who have passed the examination go to the MSNICB website