Are people with multiple sclerosis receiving 'second class' treatment?
With no cure available, many sufferers feel 'abandoned' by the health service, says a report.
Of the 100,000 people affected by multiple sclerosis in the UK, too many feel they are receiving a "second class service" through the NHS, according to a recent report.
In conjunction with MS Awareness Week, the MS Trust released a report analysing the experiences of those living with the condition.
The report, based on a survey of 2000 people, found that those who suffer constantly from the condition (progressive MS) are seeing their GP much less often than people whose symptoms relapse (relapsing remitting MS). Findings showed people with progressive MS often feel "abandoned" by the health service.
The MS Trust has called for an "urgent need for new thinking on ensuring equity in MS services".
Rebecca Duff from MS Society Scotland spoke to STV News about some of the difficulties Scots with MS currently face.
There are no treatments for primary and secondary MS at the moment but there are symptom management treatments which are licensed but not approved.
Having an appropriate multi-disciplinary team such as an MS specialist nurse and a physiotherapist is important.
Some people may need a speech and language specialist, some people need to see a dietician. There is a whole range of different kind of inputs that people can have that can really help them live well with their condition.
No two people will experience MS in the same way. Symptoms can really vary from issues with mobility or cognitive functions. Also, with fluctuating conditions, no two days are the same.
There may be one day where you are having a good day and actually you feel okay. You can manage your fatigue and you're walking okay and then the next day you feel like you can't even get out of bed.
The issue for people with progressive MS is that at the moment there are no treatments. So, if you are given this diagnosis there's very little from a drug treatment point of view that you can do. People with progressive MS are given this diagnosis , which can be the last time they have any kind of contact with a neurologist.
Even if you have progressive MS and you can't take a treatment, you do still need that multi disciplinary team around you. People do need specialist care and access to an MS specialist nurse. They need to be sign-posted to different MS services.
If you are not on a treatment, accessing specialist services can be really challenging. But everyone with MS should have an annual review with a specialist where they should have an MRI done and any changes with their conditions recorded and discussed.
If you are using a disease-modifying drug, like people with relapsing remitting MS, you do need to be monitored because these drugs are quite potent and can have side effects.
Another big issue around access can be how far people are expected to travel to be able to access services. That could be accessing a rehab service where you'd be fitted with the best walking aid or the best wheelchair.
If you've got mobility issues, and if you live relatively rural and you have fatigue, making a round trip is really unmanageable so services do need to be local and reactive to people so they can get what they need.