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Treatment & ongoing care

Treatment & ongoing care

Everyone with MS will need some degree of care, intervention & support throughout life.1 Receiving the right treatment & care as early as possible is critical. In the UK people with MS still face challenges accessing specialist care.2,3,4,5

There is currently no cure for MS, but it is possible to treat the symptoms with medications and other types of treatments. The treatment required will depend on the specific symptoms and difficulties experienced.6

There are ways of managing primary progressive MS (PPMS), including symptom management, prevention of complications and promoting general health and wellbeing. 7

With regards to treatments, a number of drugs are in development (for PPMS) testing to see if they can prevent disability progression.7

The treatment regime in MS may focus on:

  • Treating specific MS symptoms. Many symptoms can be helped by seeing a therapist or receiving medication. 6
  • Treating relapses of MS symptoms (with steroid medication). Although steroids won't prevent further relapses or stop MS getting worse over time, they can help to speed up recovery from a relapse. 6
  • Treatment to address the number of relapses and rate of disease progression (disease-modifying therapies).6

As part of the care programme, a multidisciplinary team will be available; these may include a neurologist (specialist in treating conditions of the nervous system), a physiotherapist and a speech and language therapist.6

DISEASE MODIFYING TREATMENTS (DMTS)

Disease Modifying Treatments (DMTs) are the first and only medical treatment for RRMS.1

Only 21% of people in the UK receive DMTs, one of the lowest rates in Europe.8 This is despite the benefits of taking DMT:

  • They can reduce the frequency of relapses.1,8
  • Newer DMTs have been proven to delay the onset of disability.1,8

With an increasing number of DMTs becoming available, it is more important than ever that people talk to an MS specialist as soon as possible after diagnosis about the treatment option that would best suit them.

MEASURING PROGRESSION

In order to ensure the right treatment at the right time, monitoring disease progression is an important aspect of ongoing care for people with MS.

  • Currently MS progression is measured by the number of lesions on the brain and a physical exam using the Expanded Disability Status Scale (EDSS).
  • EDSS is the most commonly used tool by HCPs but less than a quarter use it at every consultation.9
  • Many HCPs rely on assessing disability progression simply via visual observation: 96% of MS nurses use ‘visual appearance’ the most to assess disability.9
Abigail Budd

My MS symptoms are all physical and obvious to everyone. The MS lead in my area has been fantastic, and I'm able to email my MS nurse to discuss my condition.

Abigail Budd, MS Blogger

TREATMENT GOALS

Relapse, a distinct attack of symptoms which then fade away or disappear, is the primary focus for measuring progression.

Research suggests that delaying disability is the main concern for people with MS.9

Experiencing symptoms does not necessarily equate to long-term disability.

Symptoms that come and go are related to inflammation and damage to the myelin sheath, but progressive long-term disability is more linked to nerve loss.

It is important to not only reduce the frequency of relapse but have the prevention of disability as a key treatment goal.

Research suggests 38% of people with MS ranked the ‘impact of MS symptoms on everyday life’ as their biggest concern, versus only 4% who said relapses were the most important. 9

PROVIDING SUPPORT

MS is a complex disease, hence each person requires access to multiple healthcare professionals (HCPs): MS Nurses, occupational therapists, physiotherapists, neuro-psychologists and sometimes MS specialist neurologists.

  • It is the MS nurse and neurologist who play the central roles in the patient support team.
     
  • The unpredictability of when a relapse might happen means it can be difficult for people with MS to access the right care at the right time.
  • They have to try to navigate their way through various different HCPs and systems to get to the appropriate care.
Trishna Bharadia

It wasn’t until a couple of years after my diagnosis that I even knew there was such a thing as a specialist MS neurologist … I’d have liked to have had the choice from diagnosis to transfer to a specialist MS centre.

Trishna Bharadia, MS Campaigner and Blogger
    1. 1. Missing Pieces Report. Sanofi Genzyme Job Code: GZUK.MS.17.04.0189 Date of Preparation: December 2017.
    2. 2. MS Society. MS treatment in England. Available at: https://www.mssociety.org.uk/sites/default/files/MS%20treatment%20in%20England_0.pdf. Accessed December 2017.
    3. 3. MS Society. MS treatment in Wales: is access still a lottery? Available at: https://www.mssociety.org.uk/sites/default/files/MS%20treatment%20in%20Wales%20WALES%20FINAL.pdf. Accessed December 2017.
    4. 4. MS Society. MS treatment in Scotland: is access still a lottery? Available at: https://www.yumpu.com/en/document/view/55847146/ms-treatment-in-scotland-is-access-still-a-lottery. Accessed December 2017.
    5. 5. MS Society - MS treatment in Northern Ireland: is access still a lottery? Available at: https://www.mssociety.org.uk/sites/default/files/MS%20treatment%20in%20Northern%20Ireland.pdf. Accessed December 2017.
    6. 6. NHS Choices – Multiple Sclerosis. Available: https://www.nhs.uk/conditions/multiple-sclerosis/treatment/. Accessed December 2017.
    7. 7. MS Trust – Primary Progressive MS. Available: https://www.mstrust.org.uk/a-z/primary-progressive-ms. Accessed December 2017.
    8. 8. European Multiple Sclerosis Platform. Multiple Sclerosis in Europe. Available at: http://www.emsp.org/wp-content/uploads/2015/08/MS-in-EU-access.pdf. Accessed December 2017.
    9. 9. Sanofi Genzyme data on file, December 2017.

The missing pieces report

Download the "Missing Pieces" report which aims to identify the gaps or ‘missing pieces’ in knowledge, awareness, treatment pathways and care plans, which are preventing people with MS from accessing the right treatment. It has explored the attitudes of people with MS and their healthcare providers towards treatment in the UK and underlines the need to challenge our thinking around treatment goals and end-points.

report