When I was a student nurse my knowledge about multiple sclerosis (MS) was non-existent.
It wasn't really a well-known or understood condition. The people we saw who had MS were few and far between but tended to have very high care needs. I remember wondering about MS and being sad and angry there were no treatments available.
In my training, I came across quite a lot of people who had the condition. Then a relative and a close friend were both diagnosed. That really fuelled my interest in working with people affected by MS.
In 1998 the first MS nurse post in Scotland was advertised in Greater Glasgow Health Board and I was fortunate to secure the job. The great need for the post quickly became evident. At the end of my first year in post we carried out a patient satisfaction survey. I remember one person saying that having an MS nurse meant there was light at the end of a long, dark tunnel. That was very humbling.
The demand for an MS specialist meant that by the end of my second year in post I had a caseload of 3000 people. I was covering a huge area, from the Borders to the Highlands. I occasionally travelled to the Isle of Lewis to visit patients and to give support to the local staff.
Around that time the first MS medicines had become available, which was a massive leap forward for people with MS. Suddenly people with MS were given hope. There was something they could try that might give them some control over their MS. But the cost meant that not everyone who might benefit could gain access to them.
The MS Society campaigned tirelessly to make sure those drugs were available to those who were eligible and wanted to try. With the MS Society's support, the medicines did eventually become widely available.
People with MS used to be written off as having a condition you couldn't do much for. The advent of new medicines played a big part in changing that. There are now MS specialists in every health board in Scotland and the range of treatments for MS has increased significantly with another four medicines on the way.
We've come a long way but a lot more still needs to be done. We need to find the cause and the cure, but in the meantime we need to ensure that people with MS are given all the support they need to take control of their lives. This may include treatments to help manage symptoms, home adaptations and equipment to help people remain in their homes and communities and access to emotional and psychological support. Sadly, statutory funding and provision mean that not everyone receives the support they need.
There are more than 10,000 people with MS in Scotland. It touches every community and the impact is felt by families and loved ones as much as those living with the condition.
Around 70% have help from family and friends to undertake daily activities. This amounts to an army of more than 7000 unpaid carers. These carers also need support but, unfortunately, only a minority know about and receive the support they are entitled to.
Awareness of MS has risen dramatically but many people still face their diagnosis alone. The uncertainty of living with an unpredictable, fluctuating and, at present, incurable condition can cause significant anxiety and stress for those affected.
I and others who work with people living with MS are witnessing the additional worry caused by the welfare and benefits changes brought in last year. People with MS face increasing numbers of unnecessary tests and hurdles.
My hope for the next 60 years is, ultimately, a cure for MS. In the meantime, I'd like to see an end to the postcode lottery and for everyone in Scotland to be able to access the support they need when they need it.
That's why the work of the MS Society continues to be so important and I'm delighted to continue my support as the society celebrates its sixtieth birthday.
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