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Multiple sclerosis Disability Snapshot

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Multiple sclerosis Disability

Snapshot

SGP KP Publishing

Exported on 2024-10-18 03:13:06

Page 182 of 308

Table of Contents

  • Peak body consulted …4
  • What is multiple sclerosis? …5
  • Important things to note …6
  • Common symptoms …7
  • How is multiple sclerosis diagnosed? …8
  • Types of multiple sclerosis …9
  • Common experiences and impacts of multiple sclerosis …10
  • Enabling social and economic participation …11
  • How can I tailor a meeting to suit a participant with multiple sclerosis? …12
  • What people with multiple sclerosis want you to remember …13
  • Answers to common questions …14
  • Helpful links …15

FOI 24/25-0367 - DISCLOSURE LOG - DOCUMENTS

SGP KP Publishing – Multiple sclerosis Disability Snapshot

This Disability Snapshot provides general information about multiple sclerosis to assist you in communicating effectively and supporting the participant to develop their goals in a planning meeting. Each person is an individual and will have their own needs, preferences and experiences that will impact on the planning process. This information has been prepared for NDIA staff and partners and is not intended for external distribution.

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SGP KP Publishing – Multiple sclerosis Disability Snapshot

Peak body consulted

In developing this resource we consulted with Multiple Sclerosis Australia.

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2 What is multiple sclerosis?

Multiple sclerosis (MS) is the most common degenerative neurological condition diagnosed in young adults. It is an incurable and chronic, long-term condition. MS affects the central nervous system. It affects the brain, spinal cord and/or optic nerve and interferes with the normal conduction of nerve impulses around the body. It is characterised by scarring of the fatty insulating myelin sheath which protects the nerve fibres. This happens when the body’s own immune system attacks the myelin sheath, causing inflammation.

These attacks happen early in the disease process and cause a gradual loss of function due to nerve damage. The attacks result in brain atrophy, creating both cognitive issues and functional impairments.

Depending on where in the body these attacks and the resulting damage occur, a diverse range of symptoms, both sensory (sensation) and/or motor (movement) may develop.

3 Important things to note

  • The condition course is unpredictable and differs from person to person.
  • For some people, it is a disease that fluctuates in severity with periods of unpredictable relapse and remission. For others, it is a progressive decline over time. For all, it is life changing.
  • Symptoms interact and cannot be assessed in isolation.
  • Symptoms interact with other co-occurring conditions causing a compounding effect.
  • Symptoms can be unpredictable and may vary on any given day.
  • Invisible symptoms can be debilitating and result in a range of functional impairments.

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4 Common symptoms

MS symptoms can be any combination of the five major functional impairments, including:

  • motor control – lack of muscle control or coordination of movements (ataxia), muscular spasms and tremors, muscle weakness, impaired style or manner of walking (gait), coordination problems, speech and communication difficulties (such as dysarthria and dysphonia), abnormal tone, hyper-tonicity, swallowing difficulties (dysphagia), breathing difficulties, heart problems, imbalance and impaired upper and lower limb function
  • fatigue – debilitating fatigue often in combination with heat sensitivity. Fatigue may impact other active symptoms, for example, the ability to walk distances, concentrate or complete daily tasks and work
  • other neurological symptoms – including dizziness (vertigo), pins and needles, nerve pain (neuralgia), ongoing pain, discomfort, and visual disturbances including impaired vision (diplopia) and depth perception, involuntary eye movement (nystagmus) or partial or complete sight loss
  • bladder and bowel dysfunction – including incontinence, failure to store or empty, urgency, waking up more than usual to urinate at night (nocturia), faecal impaction and constipation, diarrhoea and sexual problems
  • neuropsychological symptoms – including ‘brain fog’, impaired memory and concentration, changes in processing speed and ability, impaired executive function (for example reasoning and problem solving), personality changes, emotional changes, anxiety, depression, suicidal thoughts, cognitive impairment, and difficulties sleeping.

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5 How is multiple sclerosis diagnosed?

To help identify MS symptoms earlier, more awareness of MS is needed. Some people may delay seeking treatment for their symptoms and some GPs and health professionals can miss early symptoms.

Patients usually experience a first neurological episode caused by inflammation of the nerve tissue. This can be significant, especially if it is inflammation of the optic nerve in the eye (optic neuritis) and there is impaired vision.

Generally, a patient might present to a GP, hospital or specialist with unexplained symptoms. For example, visual disturbances or loss of physical function in their hands, arms or legs.

MS is usually diagnosed by a specialist MS neurologist following at least one episode of neurological symptoms and MRI scan results showing new and old lesions in the brain and spinal cord.

For an accurate diagnosis and effective management, best practice suggests a diagnosis and ongoing support should be provided by a team of health professionals specialising in MS.

6 Types of multiple sclerosis

  • Relapsing-Remitting MS (RRMS): characterised by unpredictable attacks followed by partial or total recovery (also called exacerbations, relapses, or flares). This is the most common form of MS. 70 to 75% of people with MS begin with a relapsing-remitting course. Treatments aim to reduce attacks to improve long-term outcomes.
  • Secondary-Progressive MS (SPMS): a relapsing-remitting course which later becomes steadily progressive. Some attacks and partial recoveries may continue to occur. Of the 70-75% who start with relapsing-remitting disease, more than 50% will develop SPMS within 10 years; 90% within 25 years.
  • Primary-Progressive MS (PPMS): a progressive course from onset. Symptoms generally do not remit. 15% of people with MS are diagnosed with PPMS, although the diagnosis usually needs to be made later on, when the person has been living for a period of time with progressive disability and no acute attacks.

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7 Common experiences and impacts of multiple sclerosis

People living with MS are more likely to be under-employed or unemployed and experience financial hardship as a result. Some patients might try to hide their symptoms, have persistent denial of diagnosis or don’t disclose their diagnosis, perhaps for fear of losing their job.

There are also a number of indirect and direct costs (out of pocket expenses) associated with MS.

Due to the condition’s complexity, people living with MS may struggle to navigate the health and disability sectors.

Some invisible symptoms such as cognitive and visual disturbances, muscle weakness, spasms or decreased motor control can impact day-to-day activities and the ability to:

  • engage in long conversations or follow long sentences
  • concentrate for lengthy periods
  • understand abstract concepts
  • complete forms
  • use a computer.

Slurred, slow or impaired speech can be misinterpreted as the person being intoxicated or of lower intelligence. Psychosocial impacts may include reduced self-esteem, social isolation and/or interpersonal and relationship difficulties.

Furthermore, carers of people with MS can experience significant carer burden and this has the potential to lead to relationship difficulties and breakdown.

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8 Enabling social and economic participation

It is important to explore how a person with MS can be supported to continue their participation in current activities, education and employment, taking into consideration their interests, level of function and fatigue.

It may be appropriate for some participants with MS to explore ways to maintain their current career/profession with supports in place. Peer support from other people with MS can also help support social and economic participation.

Employment supports that might be considered through the NDIS include, personal care in the workplace, assistance with travel, assistive technology and funding for specialist disability or employment related assessment services. Employment retention and support initiatives can be accessed through Work Assist, the Disability Employment Services (DES) program.

How can I tailor a meeting to suit a participant with multiple sclerosis?

These are some accessibility or support requirements to consider:

  • face to face meetings are recommended. Phone conversations are often hard to manage
  • check individual preference for best time of day due to possible brain fog or fatigue.
  • check accessibility requirements. Advise participant of location and availability of accessible parking
  • check if there is a need to break up a face-to-face meeting into two parts or provide a break
  • schedule a reminder for appointments
  • encourage a person with MS to bring a support person along to provide reminders, assist with reading and provide general support
  • check comfort levels and ensure adjustable air conditioning is available during a meeting
  • ensure the person knows the location of the nearest restrooms/toilets. Allow for breaks
  • consider that coordination of supports is often required. MS Australia members have found that plans are often not activated or progressed and can become too complex to manage when coordination of supports is not included in a person’s plan
  • treat someone with the progressive form of MS with urgency, as achieving optimal functioning in the progressive stage is important to maintain quality of life
  • ensure the person knows to notify the NDIA of any changes in circumstances and how to do so. Consider building flexibility into their plan.

10 What people with multiple sclerosis want you to remember

  • MS can be challenging, complex and frustrating. Listen with sensitivity.
  • Be flexible and prepared to ‘think outside the box’.
  • Quite often a person living with MS ‘presents well’ and it is only after more in-depth questioning that their needs become apparent.
  • While some symptoms are relatively easy to discuss, others can cause discomfort or embarrassment. For example, cognitive symptoms, bladder and bowel dysfunction, sexual dysfunction and even depression.
  • People living with MS may have symptoms that fluctuate greatly from one day to another. It’s important to ask about hidden (invisible) symptoms and how the person functions on a ‘bad’ day.
  • Good questions to ask are “what makes your symptoms worse?” and “what makes them better?”
  • Ask about other co-occurring conditions/disabilities and how these and various medications compound the person’s ability to perform daily tasks.
  • Fluctuations in mood and mental health are common and greatly impact on functioning and quality of life. Someone living with mood changes and mental illness may find goal setting and evaluation difficult.
  • For many people living with MS, impaired cognition can be a major issue and they may not be fully aware of the full effects of their condition. A person with MS may have prepared a checklist ahead of the planning meeting to help prompt their memory. It is important that you adhere to any agreed follow up, for example, by phone or email. Lack of timely communication is very stressful for people with MS and their carers.
  • Consider each person’s support and social network, stability, vocational and family history, and circumstances. Be mindful of carer burden, relationship breakdown, social isolation, children with special needs, child protection and family violence issues.

11 Answers to common questions

  • Does everyone’s MS follow the same path? No. Because of the epidemiology of MS, each person’s disease course and the resulting functional impairments are unique to them.
  • Is there a particular age group susceptible to MS? No, MS can be diagnosed at any age – even in children. The majority of people diagnosed are in their early 30’s.
  • Is there a cure for MS? No, there is no cure for MS. There are treatments, but only for relapsing-remitting MS. Treatments aim to reduce inflammation and relapses in order to slow disease progression and resulting disability. Each person responds differently to treatment.

FOI 24/25-0367 - DISCLOSURE LOG - DOCUMENTS

SGP KP Publishing – Multiple sclerosis Disability Snapshot

  • Multiple Sclerosis Australia

Helpful links – 15 Page 196 of 308