Multiple Sclerosis Andrew Kemp Service Development Officer MS

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 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 268 mph 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 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". • • • 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. (cont …)

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. (cont …)

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 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 also other conditions with similar symptoms to MS. • • • Balance, walking and dizziness Bladder Bowel Eyes and sight Fatigue Memory and thinking • • Mental health Pain Sexual problems Spasms and stiffness Speech Swallowing Tremor

Symptoms of MS: Fatigue

Treatments & therapies Disease Modifying Drugs (DMDs) • • 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 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 akemp@mssociety. org. uk