Imagine you're 28, developing your career, relationships, trying to get on the property ladder and starting to make your way in the world. Then you're diagnosed with Multiple Sclerosis, the most widespread disabling neurological condition for young people around the world , for which there is currently no cure . That was me in 2008.
MS is an autoimmune disease of the central nervous system. The immune system becomes faulty and attacks healthy tissue in the brain and spine, eroding the protective covering of nerves and leaving them exposed and damaged. Nerve signals that enable the body to function are interrupted, causing a myriad of symptoms that can include vision loss, pain, muscle spasms, bladder/bowel issues, fatigue and mobility problems. People with MS have to live with a whole range of different symptoms. People are commonly diagnosed in their 20s and 30s, and around 100,000 people in the UK have the condition. I have the most common type of MS - the relapsing form, which is characterised by a relapse or "flare ups" that can last from a few days to several months. My symptoms have included loss of strength in my hands, numbness, muscle spasms and fatigue. You don't know when a relapse will occur, how long it will last, how severe it will be, what bodily function it will affect and if there will be lasting damage. MS is a constant life of uncertainty.
But nine years from diagnosis I've turned MS into a positive life change. I'm a campaigner and advocate for people with the condition and have done some amazing things as a result.
However, it hasn't always been easy and much of my advocacy and awareness-raising has been borne out of seeing gaps in services and support, something echoed by Sanofi Genzyme's recent Missing Pieces report. The report shows that there's still a serious lack of access to information and treatment for people with MS, even though the landscape has changed tremendously in the past decade, with more licensed therapies available and more services being developed. What is clear is that availability doesn't necessarily mean accessibility.
A key finding in the report is that people with MS are very concerned about potentially becoming disabled. Of people with MS surveyed as part of the report, 54% say they are worried and 45% say they are scared about future disability - this is something that really resonates with me. Despite this, the survey also revealed that 24% said that they were unaware that treatments which can reduce relapses and disability, exist. Plus, just half surveyed said that disability was discussed with their healthcare professional (HCP) at diagnosis. If these conversations aren't happening, how can treatment plans be established to meet patients' goals? Most HCPs surveyed said they were reluctant to discuss disability because they didn't want to make the patient uncomfortable. If we can't have that conversation with our HCP, who can we have it with? It's their responsibility to ensure that we're aware of what might lie ahead, so that we're able to plan for the future, whether that's to do with treatment choices, financial planning or anything else that may be necessary if disability was to develop. At the very least, HCPs should be signposting patients to information and support from other organisations.
Even more concerning is that about 75% of HCPs surveyed believe people with MS encounter delays in starting DMTs, with the main reason being lack of access to MS specialist neurologists. Therefore, even if patients have treatment goals, the UK care system does not necessarily enable them to be fulfilled. I believe that all people with MS should be given the choice to take any DMT they're eligible for, from the point of diagnosis. That choice shouldn't be limited by where they live, who their neurologist happens to be or which hospital they're seen at. Timely intervention and reducing the chance of developing long term disability not only allows for better quality of everyday living but also has a social, mental and financial impact on people's lives longer term.
Finally, the report calls for access to a multidisciplinary healthcare team, personalised care plans and regular reviews, in line with NICE Quality Standards for MS. I count myself lucky that I've had access to treatment, I'm regularly monitored and I have a proactive healthcare team that is approachable and easily accessible. This should be the case for everyone but, as at the moment, 36% of people in the Missing Pieces survey hadn't seen a neurologist in the past 12 months. Support, effective treatment plans and information is crucial for living a positive life with this condition and if there are gaps they need to be addressed, whether that's through education, policy change, or further training. I truly hope that this report prompts action to bring about these changes so that people with MS can live disability-free for as long as possible.
For more information and support about living with MS go to:
MS Society UK: www.mssociety.org.uk
MS Trust: www.mstrust.org.uk
Shift.MS (an online community for people with MS): www.shift.ms
MS Brain Health (for tips on keeping your brain healthy): www.msbrainhealth.org
Bart's MS Research Blog (for the latest commentary on MS research by the specialist MS team at Bart's & the London hospital group): www.multiple-sclerosis-research.blogspot.com
HuffPost UK Lifestyle has launched EveryBody, a new section calling for better equality and inclusivity for people living with disability and invisible illness. The aim is to empower those whose voices are not always heard and redefine attitudes to identity, lifestyle and ability in 2017. We'll be covering all manner of lifestyle topics - from health and fitness to dating, sex and relationships.
We'd love to hear your stories. To blog for the section, please email firstname.lastname@example.org with the subject line 'EveryBody'. To flag any issues that are close to your heart, please email email@example.com, again with the subject line 'EveryBody'.
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