At the MS Variance meeting, Rachel Dorsey-Campbell, neuroscience pharmacist at the Imperial NHS Trust, presented her team’s latest research project examining the real cost of effective and safe monitoring for disease-modifying treatments (DMTs).

Rachel, graduate of the MS MasterClass, winner of the MS 3 MasterClass Project Award 2018 and one of eight pharmacists in attendance at the Variance meeting, presented the room with astounding statistics and costs associated with optimal DMT monitoring both in terms of professional time and NHS funds.

Monitoring people with MS on DMTs is essential given the danger, even possible fatality, of the side effects that can be associated with them, but it is not currently commissioned. The activity and administration around monitoring, from scheduling and taking blood tests to interpreting the results and transferring the information to databases, is ‘done at the goodwill of the professionals providing the service – usually the specialist nurse’, Rachel noted when she addressed the room on 2nd November.

Rachel Dorsey-Campbell at ‘Service Provision in the UK; the Way Forward’, Birmingham November 2018

At present there are 11 DMTs in use around the country all with different monitoring schedules. The variety is increasing choice for patients and clinicians and enabling a better match of individual with treatment. However, this increased effectiveness carries increased risk as safely administering a range of DMTs within any given centre becomes more complex.

The challenges with DMT delivery are not only financial. Alongside the basic cost of the testing and the burden of professional time to carry it out, is the variation in both service models and the electronic systems they use to store their data which can in turn affect interpretation of information.

Rachel and her colleagues have already begun important work unpicking the monitoring elements essential to safe delivery of DMTs and calculating the associated – and as yet, unmet – costs.

Using 12 months of anonymised Blueteq cost data looking at total spend on each DMT and a conservative estimate of the number of patients treated, the team developed a five year DMT blood monitoring estimate. Their calculations allow for caveats such as a drug being stopped, or different monitoring regimes being used if blood results are abnormal. They also assume a 10% growth in prescriptions of all DMTs except interferons.

The initial results, which Rachel presented to the 100+ event earlier this month, were met with astonishment. The data shows that, with over 20,000 patients on a DMT, the cost in blood tests alone is in excess of £350,000 each year. The breakdown of monitoring itself was calculated to cause a burden in staff time of over 26 hours per month and whilst this time is occasionally supported through an administrative role (a cost calculation which has also been carried out), it is usually provided entirely by an MS specialist nurse or pharmacist.

Taking this into account, the annual – currently uncommissioned – cost in staff time could be as much as £1.2 million.

The project team have developed a simple online calculator as a means of working out the time and cost for monitoring which is available as a free resource to any healthcare professionals who wish to use it. Simple to use, it can be downloaded to calculate the relevant costs associated with your local service. To access the free online tool visit our website.

Professor Gavin Giovannoni, Academic Director, said, ‘I was surprised that these costs were not captured by the NICE technology appraisals that primarily assess the drug costs in relation to NHS England. The costs of monitoring DMTs, which currently fall on NHS Trusts and CCGs, should really be included in costing models. Clearly, the burden of monitoring should be included in business cases when setting-up and running MS specialist services.’

DMT monitoring

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In mapping the national picture, the scale of variation in service availability, delivery, provision and safety is clear, and Rachel ended her presentation by noting: ‘We’ve highlighted the variation, now is this an issue for GIRFT?’. The GIRFT – or Getting it Right First Time – programme is specifically designed to improve clinical quality and efficiency within the NHS by reducing unwarranted variation, and the team’s recommendation is for their input into this workstream.

The scale of the challenge to reduce variation in the design and delivery of DMT services, and to ensure that effective patient monitoring is both planned and funded to ensure patient safety, is a huge one. However, this significant piece of work has already made huge headway in understanding the problem, and begun developing solutions to reduce variation.

The MS Academy will be closely following this project’s progress, with the scope covering a commissioning toolkit, optimal service models and business cases as well as the national overview and Burden calculation tool already developed. We will keep you up to date on the work of Rachel and her team.

 

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