MSA Specialist nurses
Because MSA is not common some health professionals may meet somebody with MSA only once or twice in their whole career. A vital part of the Trust’s information and support service is, therefore, its nursing service provided by our two MSA specialist nurses, Katie Rigg and Samantha Pavey.
Together they support people affected by MSA across the UK and Ireland, dividing responsibility loosely around north of the Midlands and south of it.
Katie Rigg (North)
Samantha Pavey (South)
0203 371 0003
Their work includes:
- A telephone helpline available across the week from Monday to Friday from 9.30-4.30. Should the nurses be away from their desks, they will reply to messages left on their answerphones as quickly as possible. They receive calls about many different aspects of living with MSA, from people with the disease and also from carers and family members. Sometimes calls are about the physical issues of MSA, helping people to think through the practical changes that might make life easier, such as how to adapt the functional rooms at home, and sometimes calls can be more about helping people with any emotional concerns they may have.
- An email service as many people prefer to have their questions answered in this way, perhaps because it means they can get in touch at any time of the day or night and answers can be read when it is most convenient to them. The nurses try to get back to people within a few days.
- A virtual support service through our website’s Blog and Forum which offer a chance to see how others are dealing with situations arising from life with MSA. This service can help reduce the isolation people may sometimes feel as a result of having a rare disease where there may not be another similarly affected person living nearby with whom to share ideas and feelings
- Liaising with your healthcare professionals to help them have a better understanding of your needs. Both nurses are happy for you to pass on their contact details to the professionals involved in your care.
- Assistance with continuing healthcare funding can be offered by our nurses who are happy to write a letter of support
- Visits to our volunteer support groups to look at any MSA topics of interest to people attending the meetings and to provide updates on current thinking on treatments and research
Education and awareness
A role the Trust considers to be very important is that of improving education and awareness of MSA amongst health professionals: as MSA is not common these professionals may not have met an MSA patient very often in their careers. A key goal for our nurses is to keep abreast of new information, research and improved practice that may be beneficial to people with MSA, and to share this with the professionals working alongside patients and their families.
The nurses provide teaching sessions and awareness events at hospitals, hospices and care homes supporting somebody living with MSA, and are building their attendance at specialist MSA clinics.