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 three MSA specialist nurses: Katie Rigg, Samantha Pavey and Jill Lyons.
Together they support people affected by MSA across the UK and Ireland, dividing responsibility loosely around three regions.
Katie Rigg (North of England, Scotland and Ireland)
01434 381 932
Samantha Pavey (East of England)
0203 371 0003
Jill Lyons (West of England and Wales)
01934 316 119
Their work includes:
- A telephone support line available across the week from Monday to Friday from 9.00-5.00. 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.
- Liaising with your healthcare professionals: The MSA Nurse Specialists offer advice and make suggestions based on their specialist knowledge of the condition but they do not manage the care of people with MSA. The Nurses are willing to liaise with any healthcare professionals who require specialist knowledge about MSA. For this to happen, the person with MSA needs to give their healthcare professional the contact details of the MSA Nurse Specialist; and ask the professional to contact the MSA Nurse.
- 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.
- Attending specialist MSA clinics around the country.
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.
You can download the MSA Nurse Specialist service guide below and hand it out to any of your health care team.
MSA Nurse Specialist Service (PDF file size 526KB)