Many people may not realise that March is MS Awareness Month. It’s a time dedicated to raising awareness about Multiple Sclerosis and what it means to live with the condition. MS is a neurological condition that affects people in many different ways but symptoms are often described as cognitive impairments and/or mobility problems. Around the world, there are an estimated 1.5 million people with MS, and around 100,000 people are living with MS in the UK. One of those people is my sister who was recently diagnosed with the condition and as a family, we have watched her face her own struggles. We have also become increasingly aware of just how little understanding there really is about the condition. This is something that I really want to tackle when so many people are living with MS.
What is Multiple-Sclerosis (MS)?
MS is a non-fatal neurological disease. The symptoms – rather than the forms the condition takes – are often the most well known in society. The symptoms range from (but are not limited to) cognitive issues, problems with balance and/or vision, tingling, numbness, pain and/or spasms. There are four main types of MS:
- Relapsing-Remitting MS, where symptoms can flare up and then fade away partially or completely. Around 85% of people with MS have this type.
- Secondary Progressive MS, where people who have had RRMS no longer don’t have phases where they are symptom-free.
- Primary Progressive MS makes up between 10-15% of people with MS. PPMS is the experience of MS as a gradual build-up, and does not have sudden attacks as in the case of RRMS.
- Progressive-Relapsing MS is where people experience a worsening of the condition from diagnosis, but may also experience acute flare-ups which, in some cases, may have no recovery.
Why we need MS Awareness Month.
Currently, there is no cure for MS. The condition is not fatal but it can (particularly as it progresses) have a huge impact on a person’s life and it may become quite debilitating. For this reason, people with MS can sometimes end up needing extra support. Awareness too can also help build a society that is MS inclusive, such as making buildings more accessible and people being generally more aware of what needs a person with MS may have.
Because many of the symptoms around MS are often invisible, and the condition itself is still not universally understood, people with MS may be at risk of experiencing greater social isolation. There are charities and support groups in the UK for people with MS, and they do fantastic work.
In honour of MS Awareness Month, I have decided that the MS Society will be the charity that I will support throughout the year. The MS Society is a fantastic organisation that offers support to so many people, while breaking down the stigma around MS. In the summer, I will be competing in The Great North Run to raise money for the charity, and I’ll be doing different events and trying to raise money and awareness throughout the year.
MS and NHS Continuing Healthcare.
Many of my clients also have MS. It’s a condition that I hear about regularly, and most people don’t know that people with MS may be entitled to NHS Continuing Healthcare. People with MS may need extra support as their condition worsens, or during times of flare-ups. Sometimes this may be specifically relating to social care needs, but down the line, particularly towards the end of life, people with MS may need more specialist care. This is when needs tip from social care towards healthcare. Some people reach a point where social care simply isn’t enough. When a person has a primary health need then their healthcare could be fully paid for by NHS Continuing Healthcare (NHS CHC). An MS diagnosis in itself does not mean that you have‘a primary health need,’ but the condition can mean that your needs become more related to your healthcare and in turn, a ‘primary health need.’ For instance, primary health needs can be cognitive impairment or mobility issues, both of which people with MS are particularly at risk of experiencing.
If you or a relative has MS and would like advise around NHS CHC, then call us now on 0191 556 1078 or email us at [email protected]