A register for people with MS at St Richard’s Hospital

For some clinicians, it’s as much as we can do to keep our patients safe within a system both deficient in resources and beset with obstacles. Back in September 2016 therefore, when charged to undertake a project which might improve our MS service, I was filled with a mixture of enthusiasm and dread; but chiefly the latter. Not only did I wonder when I would find time to do it, but what project might it be possible for me to do?

Despite the promise of keeping us “Fit for the Future,” working in what has become the shiny conglomerate of Western Sussex Hospitals NHS Foundation Trust presents many challenges; not the least of which is that the trust operates across 2 main sites, 20 miles distant from one another. Managers travel with facility along the A27, as at home in one site as they are in its neighbour, but the clinicians are, in the main, stoutly rooted within their own hospital and oblivious to their counterparts further along the road.

So it is with neurology. There are 3 consultants at Worthing, 2 consultants and an associate specialist at St Richard’s, and a scattering of neurology nurses, each of them firmly wedded to their respective hospital. There is no cross-site working between the 2 departments, and rare opportunities for contact. There are 2 community MS nurses, employed by the PCTs and based at yet other geographically separate sites. At the beginning of the project the MS nurse specialist who looks after St Richard’s patients was on long term leave and the post for her Worthing colleague was vacant. Inpatient neurology beds, where our patients receive their DMTs, are even further afield, (at the Wessex Neurological Centre in Southampton for St Richard’s patients and at the Hurstwood Park Neurological Centre in Hayward’s Heath for our colleagues to the east.)

The exception to this parochialism is our solitary neurorehabilitation consultant, based at St Richard’s, and without senior specialty colleagues at either hospital, he looks after patients from any part of the trust.

Even had I had a project ready to be launched, with such a fragmented service as ours, there was no database of people with MS (pwMS) available to access. NICE quality standard recommendations highlight the need for a caseload database in order to measure the impact of services and interventions. What was needed was a register accessible to us all. How might we know the burden of disease in our population, organise services prospectively or audit our work without one? I decided therefore that the creation of a register would be a pre-requisite task.

Any register would need to be available to all who might require it across the trust, with the data held securely and fulfilling all legal requirements. It would need to be easy to use and to update, accessible to multiple users and deliver real time information. Given the time constraints of the challenge, and with little prospect of being able to secure funding, what ever tool was to be used must be available immediately and free of charge.

Our trust uses the SemaHelix patient administration system. Clinical alerts can be flagged up with patient information. For example an alert to the fact that a patient has a drug allergy, or that one of the community teams is involved with their care may be added as clinical alerts to a patient’s details. It is possible to access and print off patient lists with any particular alert. The system naturally fulfills all the criteria discussed above.

I requested the creation of 4 alerts with which patients might be flagged: 2 for Worthing patients and 2 for St Richard’s patients. In that way the register might be used to access lists of pwMS and those on DMTs at either site, or at both. The alerts are worded as follows:

• Patient has MS, St Richard’s
• Patient has MS, Worthing
• MS patient on DMT, St Richard’s
• MS patient on DMT, Worthing

One of my patients on DMT would therefore be alerted twice: “Patient has MS, St Richard’s,” and “MS patient on DMT, St Richard’s.”

I notified all interested parties across both sites. Willingness to add alerts was expressed by one of the St Richard’s neurology consultants and the neurorehabilitation consultant, who shared with me his personal database of MS patients. On her return to work earlier this year, the community MS nurse specialist who looks after St Richard’s patients, also agreed to participate, and helpfully provided her own database.

We started adding alerts as we encountered patients back in November 2016, but it wasn’t until the MS nurse returned to work in February, and I took annual leave specifically for the purpose, that we had the chance to populate the register from the databases.

According to the MS Trust website, the prevalence of MS is 164 per 10,000 population. The catchment area of our trust is 450,000, so we might expect to have 750 pwMS across both sites, with half of this number being within the catchment of either site. It came as some surprise therefore to find that by March 2017, at the time of the project presentation, we had 479 patients with the alert “Patient has MS, St Richard’s” of whom 83 were on DMTs.

It is predictable that overworked colleagues did not welcome any extra demands upon their time and that I have therefore been unable to recruit help to populate the register from all but 3 of them. However, at least we now have the beginnings of a pwMS register. We are shortly to utilise this in order to undertake an audit of the content of MS outpatient clinic reviews at St Richard’s. This would not have been possible 6 months ago, prior to the existence of the register, and I am indebted to the Neurology Academy for their inspiration and support.