Plymouth University ResearchJon began by defining HSP into two parts, being the two main areas of research. The "H" - hereditary - is the genetics side of things, and research seeks to understand what causes HSP, what the different affected genes do, and that kind of thing, and seeking potential treatments.
The "SP" - spastic paraplegia - is about the effects, and this is what is concentrated on at Plymouth. This research seeks to understand what symptoms are seen, how these symptoms affect quality of life, and how the symptoms can be reduced.
Jon observed that there is a third element, which combines the two parts looking at overall service delivery and support, which would consider things like physiotherapy, mobility aids, and so on.
At Plymouth, over the years, the team has been looking at the impact of HSP, understanding what the effects are. They have undertaken research by asking people questions and undertaking examinations and measurements. Measurements might include stiffness or strength, or sensitivity to vibration, and these would be looked at in the context of the study being undertaken - for example, how does HSP affect people balance.
In this regard, HSP affects hip muscles, which limits sideways leg movements, and stiffness in ankle musckles affects back and forth movements, so the HSP gait involves swaying from side to side and a lot of dragging feet along the floor. But, some stiffness is needed for balance, and the contrast is that if you reduce the stiffness to increase mobility then you may decrease balance. A certain amount of stiffness is needed in our muscles to allow balance normally, and HSP adds to this stiffness. This element can be treated with stretching, and some of the work at Plymouth has been to target therapies to the symptoms.
Looking at the overall service delivery side of things, Jon reported a study that they have recently completed which examines this process, and concludes that "People with HSP require better self-management advice, information and support."
In Jons presentation later in the day described this research. One of their findings is that there is a poor evidence base out there on which to make decisions - either about providing treatments to people or about funding further research. Jon listed the common treatments which have been identified as providing a benefit by people with HSP:
- Genetic counselling,
- Anti-spasticity drugs,
- Occupational Therapy,
- FES (Functional Electrical Stimulation)
- Tai chi / Pilates / Acupuncture,
There are limited studies covering some of these, perhaps 50 papers in total covering all of these.
Jon reported that the key issues for people with HSP in the south west of the UK (Devon and Cornwall) were:
- Length of diagnosis
- Lack of publicity/knowledge
- The need to travel to get acces to specialist knowledge (e.g. travel to London)
- Allocation of services (i.e. availability of funding for investigations/treatments)
- Co-ordination of care (healthcare professionals talking with each other)
- Lack of evidence for treatments/interventions