Your Opinion Matters
Who should participate?
→ People whose main problems relate to movement – walking, balance and using their arms for everyday activities. If they have other existing problems, that is ok as long as they can comment on movement and physio. The trial is not about seizures.
→ UK residents are a primary focus, but they want to hear from other nationalities, as well.
Researchers Ask Questions
Glenn Nielsen is part of a team of doctors and therapists who work with people that have FND. Glenn and his team are applying for money to run a research trial of physiotherapy for people with functional movement disorder symptoms. Theses symptoms may include weakness, paralysis, tremor and problems with walking and balance.
Glenn’s team is not only doing important work, but also asking important questions to the most significant people in the FND equation.
They want you to help them plan their research by asking you “the FND expert” a few questions starting with this one:
“What do you think is important for us to consider with our treatment and research?”
We at FND Hope are helping Glenn because we think his research is vital to the health and lives of FND patients. Please consider participating in Glenn’s quick survey.
Members of FND internet discussion forums were asked about their priorities for treatment.
Here are the results of the 139 people who responded
85% were female
13 family members of people with FND contributed72% of people were from the United Kingdom, there were also people from The USA, Australia, New Zealand, Ireland, the Netherlands, Belgium, Portugal and India
The most common motor symptoms that people experienced were
- Walking and balance problems
- Weakness or paralysis
- Spasms or jerks
- Arm tremor
People also reported other problems and difficulties in the comments section. This included (not a complete list):
- Pins and needles
- Speech problems
- Confusion and memory problems
The most common top priority for treatment was imporvement in walking and balance.
Other priorities for treatment were (in order of most commonly picked):
- The ability to go to work or to study
- Reduced pain
- Understanding what is wrong
- Reduced fatigueReduced pain and fatigue were common second priorities for treatment
The people who need to know more were (in order of most commonly picked):
- GP (personal doctor)
- the patient
Lots of people commented on their experiences with doctors, physiotherapists, occupational therapists (OTs) and other health care professionals:
- Some people had positive experiences and found treatment helpful.
- It was common for people to report very negative experiences, such as being treated without respect and not being believed.
- Often people had difficulty finding someone who understood FND.
- Some people had to wait a long time for treatment, while others were unable to access any treatment at all.
- Different treatments suited different people. Several people commented that not everybody will respond to the same type of treatment.
Things that people said about physiotherapy:
- Physiotherapy is probably more helpful when it is specialized (e.g. neuro-physio) and delivered by someone who understands FND or at least is interested in FND.
- Treatments need to be flexible in order to suit the person and their problem, because everyone is a bit different.
- There are problems getting access to physiotherapy. Sometimes physiotherapy sessions are too spaced out or there are not enough sessions.
- Physiotherapy may not work for everyone. Sometimes it is hard to know if more specialist physiotherapy or a different physiotherapist could help in this case.
- Physiotherapy needs to consider fatigue, which was a very common problem for the people who answered the survey.
- The people who responded to this survey had significant problems affecting their movement.
- Some had been able to access treatment which had helped them, while others had been unable to access helpful treatment.
- The most common goal for treatment was to improve walking and balance.
- Common barriers to helpful treatment reported by people taking the survey were:
- attitudes of health care professionals, a lack of understanding from health care professionals, and a lack of service availability.
- In general people were very positive about the need for physiotherapy research.
- A lot of people made the point that there needs to be greater awareness of FND amongst health care professionals including GPs, neurologists and physiotherapists.
This is only a summary of all the very helpful suggestions and comments made by the people who took the survey. The information that I have collected will be shared with the research team to help us understand the needs of our patients.
UCL Research Fellow and Physiotherapist