Transcript MS Society - Somerset Neurological Alliance

Multiple Sclerosis
Andrew Kemp
Service Development Officer
MS Society, South West
The MS Society
One aim: to beat MS
38,000 members
9,000 volunteers
260 staff members
The UK’s leading MS charity, providing
information and support, funding
research and fighting for change for 60
years.
Since 1956, the Society has invested
over £148 million of today’s money in
research.
The Society is a democratic
organisation: one member, one vote
MS in the South West
Approximately how many people have MS?
Somerset:
900
Cornwall:
Devon:
UK:
World:
900
1,200
100,000
2,500,000
MSS membership in Somerset
The Service Development Team
20 service development officers across the UK
We work with people affected by MS, health,
social care & allied professionals and partner
organisations e.g.
The Somerset Neurological Alliance:
www.somersetneuroalliance.org.uk
The South West Alliance of Neurological
Organisations (SWANO): www.swano.org
Our role is to support the development of new
and existing services for people affected by MS
Dan Swano
Edge of Sanity
Bloodbath
Katatonia
Ribspreader
Maceration
Incision
Obliterhate
Some MS facts
MS is one of the most common diseases of the central
nervous system
Approximately 100,000 people have MS in the UK
Roughly three times as many women have MS as men.
It’s usually diagnosed in early adulthood
Roughly 2,500 people are diagnosed every year
There are around 2,500,000 people with MS worldwide
MS is more common in people who live farther from the
equator
Some MS facts
What happens in MS?
The CNS consists of the brain and spinal
cord
It’s enclosed in the skull and back bone
The CNS receives, processes and stores
information
It initiates instructions for bodily activities
What happens in MS?
T cells are highly specialised
defender cells. They mistake myelin
for a foreign body
The immune system attacks cells
This process of stripping and
damaging myelin is known as
demyelination
The process causes inflammation
How does this affect people?
The axon is surrounded by myelin, which
provides a protective sheath of fatty protein.
Messages are conducted along the axon at
speeds of up to 268mph
Impulses zip from the brain to parts of the
body and then back again
The greater the diameter of myelin, the faster
the impulse
Damaged myelin causes delays to
or blocks messages.
How does this affect people?
How does this affect people?
Multiple sclerosis
Types of MS
Symptoms of MS
Treatments and therapies
MS support
Types of MS
Relapsing Remitting MS (RRMS)
• Distinct attacks of symptoms
• They then then fade away either partially or completely
• Around 85 per cent of people with MS are diagnosed with
this type.
For most people with MS, this is the way their MS begins,
except for the small group of people who have primary
progressive MS (about 15 per cent of all people with MS).
Types of MS
Relapsing Remitting MS
Relapse: "the appearance of new symptoms, or the return of
old symptoms, for a period of 24 hours or more – in the
absence of a change in core body temperature or infection".
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Come on over hours or days
Stay for usually 4 to 6 weeks
Mild to severe
Can require hospitalisation
Many manage at home, with the support of the GP, MS
specialist nurse, and other care professionals.
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Types of MS
Relapsing Remitting MS (RRMS)
• Often complete recovery
• Approx half relapses leave lingering problems
• If myelin damage severe some symptoms remain ……
……. but can still improve over following months.
Causes
• Stress: although evidence not totally clear
• Infections: encouraged to beat bacterial infections early
• Pregnancy: increased risk in months immediately after
birth (many women with MS find that they have fewer
relapses during pregnancy.)
Types of MS
Secondary Progressive MS (SPMS)
• A stage of MS that comes after RRMS in many cases.
• Neurologists generally agree that SPMS is a:
"sustained build up of disability, independent of any
relapses".
• Most people with RRMS will eventually develop SPMS.
• Varies widely but, on average, around 65 per cent of
people with RRMS will develop SPMS 15 years after being
diagnosed.
• Characterised by a worsening of disability, rather than by
relapses followed by recovery.
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Types of MS
Secondary Progressive MS (SPMS)
• Some people will continue to have relapses with
secondary progressive MS. It can make it harder to work
out whether your MS is relapsing remitting or secondary
progressive.
• Recovery can take some time. It can be hard to tell
whether symptoms are due to progression (therefore may
remain) or the lingering effect of a relapse (and will go).
Types of MS
Primary Progressive MS (PPMS)
• Affects about 10 to 15 per cent of people diagnosed with MS.
• So called because from the first (primary) symptoms it’s
progressive.
• Symptoms gradually get worse over time, rather than
appearing as sudden attacks (relapses).
• Usually diagnosed in people in their forties or fifties – older
than the average age for relapsing remitting MS – but it can
be diagnosed earlier or later than this.
• People with PPMS can experience many of the same
symptoms for RRMS.
Symptoms of MS
MS is complex, and has many symptoms.
Most people won't experience them all & certainly not at the same
time. There are also other conditions with similar symptoms to MS.
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Balance, walking and dizziness
Bladder
Bowel
Eyes and sight
Fatigue
Memory and thinking
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Mental health
Pain
Sexual problems
Spasms and stiffness
Speech
Swallowing
Tremor
Symptoms of MS: Fatigue
Treatments & therapies
Disease Modifying Drugs (DMDs)
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DMDs aren’t a cure for MS
They can reduce the frequency and severity of relapses
They're not effective for primary progressive MS
Clinical trials have shown that DMDs reduce the number of MS
relapses by around a third over two years.
• DMDs cause some side effects – access criteria
• Not yet known if any DMDs might slow the rate of disability long term
• The most common drugs are injected
From last Wednesday NHS in England & Wales able to
prescribe Aubagio (previously known as teriflunomide)
to people with relapsing remitting MS. First oral
treatment. In trials found to reduce relapse rates by
30% and reduce risk of progression by 30%.
Treatments & therapies
Therapies
Some treatments aren't suitable or don't work well & many people
with MS find it useful to actively manage their health through:
Complementary and alternative therapies
Exercise
Physiotherapy
Diet
MS support
Emotional support
support groups
dealing with a diagnosis
telling people you have MS
getting help
Practical and financial support
work and money (CAB partnerships)
care
insurance
driving
short breaks and respite
home adaptations
wheelchairs and scooters
Support for professionals
Publications
The MS Academy
Thank you
Andrew Kemp
Service Development Officer
MS Society, South West
020 8438 0767
[email protected]