In 1999 NHS Tayside decided to appoint a neurologist with a specialist interest in MS. And at the same time they appointed a MS specialist nurse. I was appointed along with Shona Flucker, and that was when the MS unit as such developed.
Before then things were very different. We diagnosed patients. We looked after patients, but there wasn’t the array of medications to provide disease modifying therapy.
Things changed dramatically in 2003. That’s when the risk-sharing scheme for DMDs came into being. (See mstrust.org.uk/rss) We had to increase our specialist nurse pool so we had a dedicated nurse for Perth and Kinross as well as Dundee and Angus. It’s a big region so this was a great help!
By 2006/7 we thought we were providing pretty good treatment for relapsing remitting patients. But in the community we were somewhat deficient. We knew this was something we needed to build on, to maintain an equitable service.
So with help from some charity funding were able to trial a dedicated MS physiotherapist and also a dedicated MS social worker. This proved really successful, and now they are full members of our team. Around 2010, 2011 our nurses developed further expertise in management of symptoms. They developed expertise in acupuncture for pain relief. One of our nurses has also developed expertise in urinary tract problems.
So by 2014 we had a number of different clinic situations. We had nurse-led clinics. We had clinics for urinary tract problems. We had DMD clinics: by now we have around 450 people taking DMDs.
More recently we decided to look into how best to continue the service at an outpatient level. That’s when we appointed our GP with a special interest in MS, which has been a tremendous success. We already had a social worker, but we didn’t have someone with a knowledge and background of how general practice works. That has been a great addition to the service.
There was no particular vision around how our service developed: it evolved essentially from nothing. At each step in the evolution there were issues and gaps in the service which were probably identified by us, but also by patient groups.
I think it does make a good model. I think I’ve learned so much from everyone else. Sometimes health professionals can live in our own little bubble. What we think matters may well matter. But there are other issues which matter equally as much.
I think the service is better. I think it has improved. We have complementary services. We’re not just looking at single areas such as disease modifying therapies. They’re helpful for some patients but we’ve got 1,200 patients with MS in our area, and less than half them are on DMDs of some type. There are lots of other people with MS who need our help but in a different way – we’re determined to find ways to make sure our service continues to develop to meet the needs of everyone with MS.
How Dr O’Riordan helped me
Bob, diagnosed 2003
Once I was diagnosed I met Pauline the MS nurse. At that point I was put on Copaxone and Pauline helped me learn to take the injections. Now I’m on Tysabri. My Copaxone stopped working so me and my wife and Dr O’Riordan had a detailed discussion, and decided to try fingolimod. But that wasn’t working effectively either and I had a big relapse about four years ago. We had another discussion and decided I should go onto Tysabri. I see Dr O’Riordan every year for my review, but I also do some teaching with Dr O’Riordan – introducing medical students to MS. Dr O’Riordan has been great – he really helped me understand the different drugs. Without the team here I’d probably not have coped very well. I gave up work about four years ago and that was hard. But I was getting the right treatment, and the right help, and that’s made it a lot easier.