The MS Trust are delighted to announce that together with Tayside NHS Trust we have recruited the first Advanced MS Champion in Scotland. Rachel has been recruited as part of the Advanced MS Champions programme which is funded and run by the Multiple Sclerosis Trust. The role gives the team a dedicated resource to focus on the needs of people living with advanced MS who no longer benefit from disease modifying drugs. We chatted to Rachel about her new role and why she’s looking forward to the new challenge.
I’ve worked as a nurse for the past 33 years and have enjoyed every position that I’ve held over that time. I’ve worked in nursing homes, acute wards, community nursing, practice nursing, as a Marie Curie nurse and also an MS specialist nurse (for the last 12 years). In my previous role as an MS nurse, I was lucky enough to be able to support the full range of people with MS in my region. This was because the patient numbers in the area were manageable, but I was always so aware that this was not the case in other health boards.
The role of the Advanced MS Champion is different to an MS Nurse as I’ll be supporting people living with advanced MS who no longer qualify for DMTs (disease modifying treatments). These people may no longer be seen by their service as the team are at capacity due to the heavy workload involved in monitoring DMTs and the associated risks with them.
Having been an MS Specialist Nurse for the past 12 years I’ve been privileged to care for many people living with MS in all stages of their journey. During that time, I was very aware of the ever changing landscape in MS care. The increase in range and efficacy of DMTs has meant that over time those not on a DMT have received reduced or no access to their MS service. This along with the restraints the pandemic put on home visits has meant that there is a group of patients who are not receiving regular reviews.
In this role, I will support people living with advanced multiple sclerosis by providing them with regular contact in their own homes and clinics if appropriate.
By working closely alongside people with MS and planning their care with them, I’ll aim to promote a sense of empowerment and in turn, increase their overall wellbeing. By closely monitoring symptoms and conducting regular reviews, I will be able to intervene early and ultimately reduce the need for unnecessary hospital admissions. I find it very rewarding to be able to meet with patients who have complex issues and make a joint care plan with them.
At Tayside, I’m looking forward to joining a well-established team that already provides such a high level of care to a large number of patients both in Tayside and across North East Fife. The MS service in Tayside is staffed by a dedicated team who are very aware of the need for a dedicated nurse to look after people living with advanced MS. Christine Whately first identified the need for this role, she was aware of the patient caseload and that the rurality of the area was making it difficult for those patients with advanced MS to be reviewed regularly.
Christine campaigned tirelessly for a dedicated nurse for this cohort of patients. She was aware that the reduced contact with these patients may have led to unnecessary hospital admissions and unsupported patients.
I’m looking forward to establishing and watching the MS Champion role in Tayside flourish. I like the fact that this is a new role as it gives the opportunity to identify what the service needs and also perhaps what is missing. I want to create a service that truly meets the needs and supports those living with advanced MS in a holistic way.
I live with a long term condition myself, so I understand the journey that people living with MS are on. Having a personal insight into both the physical and emotional impact that this can have has allowed me to support those on the unpredictable MS journey and help them to plan and therefore live their life to the full.
I’m looking forward to meeting and getting to know people with advanced MS and their families.
I’m excited to have the opportunity to take on the challenge of being an Advanced MS Champion in Tayside. I want to build a good rapport which will enable us to work together, to ensure that they are fully supported and receive the most appropriate care.
