News
 ISSCR Guidelines for the Clinical Translation of Stem Cells
The International Society for Stem Cell Research (ISSCR) has released Guidelines for the Clinical Translation of Stem Cells that examine the scientific, clinical, regulatory, ethical and societal issues that must be addressed to ensure that basic stem cell research is responsibly transitioned into appropriate clinical applications.
The guidelines call for rigorous standards in the development of stem cell therapies including stringent evaluation and oversight, a thorough informed consent process and transparency in operations and reporting. The ISSCR acknowledges the evolving state of scientific and clinical knowledge of stem cell-based products, and places responsibility on clinical investigators to work alongside regulators in refining standards of pre-clinical and clinical evaluation. The Guidelines will be reviewed and revised as needed to incorporate new scientific advances and to address specific translational research issues.
The ISSCR also recognizes an urgent need to address the problem of unproven stem cell therapies being marketed directly to patients. While stem cell research holds tremendous promise for the development of new treatments for many serious diseases, nearly all stem cell therapies are new and highly experimental.
The ISSCR has also published a Patient Handbook on Stem Cell Therapies
World Atlas of MS 
The Multiple Sclerosis International Federation (MSIF) and the World Health Organisation (WHO) have published a World Atlas of MS, which is the most comprehensive study ever undertaken of the occurrence of MS around the world and the availability of resources to provide services and support to people with MS.
The Atlas is the result of three years of research coordinated by the WHO and MSIF. More than 100 countries participated in the study, replacing impressions and opinions with facts and figures. Topics covered by the Atlas include:
- Epidemiology – prevalence, incidence and total numbers
- Epidemiology – average age of onset and male/female ratio
- MS organisations
- Diagnosis
- Information
- Support and services
- Drugs and treatment
- Human resources
- Disability entitlements, legislation and social insurance
- Major issues
For more information and to download the Atlas Report go to the MSIF website here
Free Audio Book Service
Calibre Audio Library brings the pleasure of reading to people who have a sight problem, dyslexia or physical disabilities, through a free nationwide postal service of recorded books. They offer a choice of over 8,000 titles fiction and non-fiction, recorded unabridged by professional actors and broadcasters.
The Calibre website, www.calibre.org.uk provides details of all their services including on-line access to their complete catalogue of audio books.
Calibre Audio Library, Aylesbury, Bucks HP22 5XQ
Registered Charity Number 286614
MS Society Information Services Newsletter
The 30th edition of 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 here to support you and people affected by MS to access up-to-date evidence based
information and to signpost to other sources of expertise. Through working with our colleagues at
MSNC and locally we can together meet the information needs of everyone affected by MS.
In this issue:
National Centre Info News
Focus on Exercise - the current Awareness Talk is on balance and gait. Coming up in December is an online
Q&A with a conductive education expert. Also up to date resources on exercise
(books, DVDs, latest articles and online content) available at the MS Society library for loan and via their website.
Giving information locally
See where the newest MS Society Information Points have been installed.
Check out the local focus on the recently established Info Points in county Durham
Your update on good practice experiences and news in local areas
Diary and guide to quality information provision
Contact the Info Team at infoteam@mssociety.org.uk or call 020 8438 0799.
You can download the latest Information Services Newsletter here.
Communication Skills Project survey
The MS Society has joined forces with the Brain and Spine Foundation on an exciting project exploring the training needs of professionals working with people with neurological conditions who have communication difficulties. To make sure this work is of greatest value, they need to hear from health professionals about the challenges they face when communicating with individuals with MS as part of their work.
The project is also looking at a wide range of neurological conditions from Parkinson’s, stroke and dementia. The aim is to use the findings to develop a training course and toolkit to help you address the challenges you face. To this end, they have developed an online questionnaire which takes just a few minutes to complete and will contribute to this much needed research. The questionnaire will be online until 18 December 2008. Click here for the survey.
To find out more about the research project, click here
Thinking Differently
Some of you may be using copies of the Thinking Differently Guide published by the NHS Institute for Innovation and Improvement. They would like to gather case studies and hear stories from people who have used the tools in the Guide. Please contact Helen Baxter (Helen.baxter@institute.nhs.uk ) if you have used any of the tools and what the outcome was.
MS Society Awards 2009
The MS Society has launched an Award scheme to recognise the Stars of the MS Community. Amongst this year’s categories are: Best MS Research, Young MS Researcher, MS Professional and MS Campaign. A full list of categories is available on the MS Society website.
The Society welcomes self nominations and nominations for projects or people not associated with the MS Society. If something or someone has made a positive difference to the lives of those affected by MS then nominate it or them for an award which will be presented at a prestigious event during MS Week 2009. Nominating is simple, just download a form from the website or contact Katie Smith on 020 8438 0752 or mssawards@mssociety.org.uk.
Royal College of Physicians & MS Trust Audit of MS Services
The RCP and MS Trust published their audit of MS services against the NICE Guideline on 9th July. The audit shows that the NHS is still failing to meet the NICE standards.
The audit, carried out in the first two months of 2008, asked people with MS, Hospital Trusts, Primary Care Trusts and the Strategic Health Authorities a series of questions based on the six key recommendations and one quality marker of the NICE guidelines.
The survey shows that access to neurological rehabilitation services remains wholly inadequate - only 36% of people with MS had access to such services. For people with MS, it is the inadequacy of symptom management which causes distress, and may worsen disability. If neurological rehabilitation were readily available, the severity of disability would be reduced.
Although access to specialist neurological services has improved, there are still long delays from GP referral to diagnosis, with 50% of all patients waiting over 20 weeks.
The survey also reports that 6% of people surveyed had developed a skin pressure ulcer during the previous 12 months. Occurrence of pressure sores was NICE's identified "quality marker" for MS services - and for good reason. A grade 4 pressure ulcer costs the NHS an estimated £10,551, with total costs in the UK at £1.4-£2.1 billion - about 4% of the total NHS expenditure. Service quality is still low.
Go to the RCP website to download the full audit report.
Randomising now: The MS-STAT Trial in Secondary Progressive Multiple Sclerosis
Imperial College Healthcare NHS Trust & National Hospital for Neurology and Neurosurgery
Simvastatin is widely used as a cholesterol-lowering drug, but evidence suggests that it may also be useful in MS:
1) It appears to reduce the number of areas of inflammation on the MRI scans of people with early MS, and we will be looking to see if can help the brain scans of people with secondary progressive MS.
2) It might improve the immune system in MS.
3) It may help to protect the nervous system.
These are a lot of ‘mights’ so we are now starting an initial phase 2 trial in secondary progressive multiple sclerosis.
In order to find out, we will look at the MRI brain scans of people taking Simvastatin and those not taking it. We will also look at how people are doing in terms of their day- to-day living, immune function and some tests of memory and concentration.
Simvastatin is considered to be very safe with the most common side-effect being muscle ache (though expected to be less than 1 in 100 people).
Whilst we have started randomising into the trial, we are still looking for more people to take part. We need 140 people to commit to a two year trial, having three MRI scans during that time.
To take part, you need to be:
• Between 18-65 years old
• Have worsening secondary progressive MS (NOT primary progressive)
• At best, able to walk 500 metres; at worst 20 metres (frame allowed)
• Not on disease-modifying drugs (eg beta interferon)
• Be able to travel to the MRI centres in Sussex or Bucks; and undertake the initial screening visits at Charing Cross Hospital, West London.
If you are interested, please call Teresita Beeston telephone: 020 8383 0675 or email: t.beeston@imperial.ac.uk and we’ll send you a patient information sheet.
Patients are advised to discuss this trial with their MS Specialist Nurse first.
Long Term Neurological Conditions
A good practice guide to the development of the multidisciplinary team and the value of the specialist nurse
This is a new publication by the Department of Health in collaboration with the RCN, Epilepsy Action, the MS Society, Parkinson's Disease Society and NHS National Workforce Projects. It is aimed at commissioners and providers of services for people with long term neurological conditions to help them offer the right service, delivered by an appropriate workforce, to meet the needs of a vulnerable group of patients. It outlines why services for neurological conditions are important, demonstrates the value of the MDT and clarifies the contribution of specialist nurses.
Link to NHS National Workforce Projects website to download the document
Information Guidance Toolkit
Following queries from UKMSSNA members about patient records and the use of electronic records we recommend having a look at the Connecting for Health website which gives guidance on this.
https://www.igt.connectingforhealth.nhs.uk/
Greater Manchester MS Nurse website
The MS Specialist Nurses in Greater Manchester have set up a website which describes the service they offer, lists local contacts, Frequently Asked Questions and a great deal more. It is a user-friendly site, well worth looking at. Go to www.msingreatermanchester.nhs.uk or go to the Links page of this website. Is anyone else doing anything similar?
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Multiple Sclerosis Specialist Nurses: Adding value and delivering NHS
targets
The UKMSSNA launched this new publication, initiated by the NW Region of MS
Specialist Nurses, at the Annual General Meeting held in Leeds at the MS Trust
Conference last November.
Written at a time of great change within the NHS, it 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.
Contact the Administrator to receive your free copy. Available to members and non-members alike.
Adding value and delivering NHS targets 
Medical Fitness to Drive
In 2000,
the Department for Transport set up a new research programme into "Medical
Fitness to Drive". A number of important studies are now underway including
those on insulin treated diabetes, on visual fields, and on the attitudes of
healthcare professionals towards giving advice on fitness to drive.
It is key
that healthcare personnel, and doctors in particular, are aware of the medical
conditions that could affect a patient's ability to drive safely. Areas of
concern include effects or side effects of medication for example, as well as
reliability in following a prescribed treatment programme. Responsibility for
deciding whether a person is fit to drive and applying specific medical
standards rests with the Medical Advisers at the Driver and Vehicle Licensing
Agency (DVLA).
Driving Assessments.
When a full
driving assessment is required, DVLA only refers drivers to a centre accredited
by the Forum of Mobility Centres. These centres offer a multidisciplinary
approach and are able to advise about suitable vehicle adaptations to overcome
limb or movement disorders. They are also able to assess the effects of
cognitive and certain other medical impairments on safe driving.
Forum
centres are happy to accept referrals from a wide range of sources including
directly from drivers and from health professionals. Their help line number is
6800 559 3636 and addresses of the accredited centres can be found on the Forum
website: www.mobility-centre.org.uk
The
September 2007 edition of the "At a Glance Guide to the Current Medical
Standards of Fitness to Drive" is now available. This guidance is revised and
updated twice yearly, in Spring and Autumn. The booklet represents the
recommendations of the Secretary of State's six expert Honorary Medical Advisory
Panels on the medical standards for licensing as applied throughout Great
Britain by DVLA's medical advisers.
The
standards aim to reflect current clinical practice including advances in
technology, coupled with an understanding of relevant risk factors for safe
driving. Medical advice given to patients by their doctors based on out of date
medical licensing standards may disadvantage patients and could jeopardise
public road safety.
The
publication can be downloaded in PDF format at www.dvla.gov.uk/medical/ataglance.aspx and, more specifically, through
EMIS, INPS secure GP Medical Information Systems and nhspurchasing.co.uk.
Hard copies
of the booklet are available on request for £4.50 (cheques made payable to DVLA
Swansea) from Drivers Medical Group, DMSDG, DVLA, Swansea SA99 1DF Tel: 01792
766770.
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Debate on Specialist Nurses in the House of Lords
Download the report from Hansard of the Debate
on 1st May 2007 in the House of Lords
Modernising Nursing Careers - setting the direction
This Department of Health report sets the direction for modern nursing
careers. It includes actions that are intended to prepare nursing for the
future in the context of the government's reform programme
Download the Report here
MS Trust Business Case Toolkit
This practical tool has been developed by Alice Hamilton and Vicki Matthews
(formerly Gutteridge). It is available on the MS Trust website, but can
also be downloaded here as a Word document. You can then adapt it to your own
service and insert local information. Thanks to the MS Trust for
permission to put this document on our website.
Download the Toolkit here
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Supporting the case for MS Specialist Nurses
The UKMSSNA is
very concerned about any threat to MS Specialist Nurse posts as a consequence of
any NHS cost-reduction
measures. Whilst accepting that cost effectiveness is a shared responsibility,
we feel that it is counter-productive to cut any
post that will have a severe impact on already unacceptable waiting lists for
patients with MS. These posts
are instrumental and essential to implementing the Risk Sharing Scheme for
disease modifying therapies and the loss of posts will have significant cost
implications for future drug therapies. We understand that the Department of
Health (DoH) expects NHS Trusts to honour their
existing contractual responsibilities and continue funding MS Nursing posts that
were pump primed. The DoH also anticipates that there will be a continued
growth in MS Nursing posts to meet the demand.
MS Specialist
Nurses are the first point of contact when a person with MS needs help, thus
supporting the DoH document “Our health, our say, our care” (2006) by being
responsive to the needs of the patient at a time when they need it, particularly
by providing support and information following diagnosis, but also identifying
relapses, organising early treatment and discussing changes in symptoms, thereby
improving quality of life for the patient and their carers and family. It is
critical for patients to have quick and easy access to this advice and
helpline.
MS Specialist
Nurses reduce the need for hospital admissions, outpatient appointments and GP
consultations. They improve clinical outcomes and patient well being. They
have a direct impact on medical consultation time, thereby reducing waiting
times for patients. As leaders of the MS service they are responsible for case
management, assessment of carers needs, facilitating, and co-ordinating the
liaison between a wide range of health and social care professionals. This
brings about a mixed economy of care at the least
cost to NHS Trusts. This cohesive approach
results in improved quality of life for all people affected by MS and is good
use of resources. In 2002 MS nurses were shown to have saved the NHS £64,611.45 in a one year period
(Johnson 2002).
The GP, who
would be the traditional first port of call for people affected by MS, often has
limited knowledge of the management of this unpredictable and variable condition and they frequently seek
advice from their local MS
Specialist Nurse. It is not expected that the
Community Matron will be taking on the care and on-going
management of such a large group of patients with complex needs, and their relatives and carers.
The MS Nurse plays the pivotal role in both the implementation of NICE Guideline
for the Diagnosis and Management of MS in Primary and Secondary care (2004) and
the NSF for Long Term Conditions (2005). They are instrumental in
promoting self-management amongst people with MS and in reducing
the burden of disease - both
for the patient and healthcare commissioners.
It is
essential for
the future of healthcare that hard-working,
skilled nurses are not forced out of their jobs. It should be noted that
these posts are banded at 8a within the new Agenda for Change salary scale.
This validates the significance and value of the post to the Trust. It is well
documented that there is a national
shortage of nurses,
especially of this high calibre,
and we strongly recommend that any Trust finds cost savings in other
areas.
Patients with
MS have grown to expect a certain level of support from the MS Nursing service
and the anxiety that loss of these posts will produce will be immeasurable to
them. If MS Specialist Nurse posts are
cut, this will inevitably lead to a decline in care - who will take
responsibility for the consequences of this lack of care
to patients with MS?
The UKMSSNA have published a statement on Agenda for Change for its members,
which can be found in the Member's Section
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