An excellent afternoon with students

Recently I was asked by Jon Marsden at Plymouth uni if I would talk with a group of physiotherapy students and occupational therapy students about HSP.

I was very pleased to do this, and I had a very enjoyable hour chatting with the students. We covered some of the symptoms and variation in symptoms for those affected by HSP, and a quick overview of the treatments for the more common symptoms.

I also gave my story, how my HSP is progressing, the types of appointments I've had with physiotherapists, and my general HSP timeline.

We also covered some of the barriers and problems that people with HSP often face when dealing with healthcare assessments, and I included mentioning that people often have to repeat their stories time after time, and in the focus on HSP specifics general questions on how people are is often missed.

I got asked a few good questions at the end, and it felt like a really useful session.

Driving with HSP

With my support group hat on, an interesting question came up recently. This is aimed at UK readers. The question was about if people with HSP need to declare their HSP to the DVLA. (international readers note that DVLA is the body which issues and controls driving licenses in the UK).

This is a question which I'd not really thought about, so I went to look up details on their website.

The overall headline is that of you have a disability or a 'notifiable' condition then you must tell the DVLA about this. HSP is not a notifiable condition, so the answer is around if you consider your HSP to make you disabled. If it does, then you ought to tell the DVLA. https://www.gov.uk/driving-medical-conditions

Now, deciding if you are disabled or not is a very personal decision, and many people have different interpretations on this. So, for the purposes of considering informing the DVLA it may be beneficial to use the definition of a disability in the Equality Act 2010, section 6.

https://www.legislation.gov.uk/ukpga/2010/15/section/6

This says that a person has a disability if they have a physical or mental impairment, and the impairment has a substantial and long-term adverse effect on their ability to carry out normal day-to-day activities.

So - if your HSP does not have a significant impact on your day-to-day activities, then you dont need to declare, otherwise you should.

You must also tell DVLA if your condition or disability has got worse since you got your licence, and I assume if it has got worse since you previously told them.

There is plenty of information on the DVLA website about if you need to tell the DVLA about certain medical conditions: https://www.gov.uk/health-conditions-and-driving/find-condition-online with the list here: https://www.driving-medical-condition.service.gov.uk/conditions/listing

HSP does not appear in this list, but many of the conditions that are similar to HSP (and are often misdiagnosed for HSP) are: Ataxia, Amyotrophic Lateral Sclerosis (ALS), Multiple Sclerosis (MS) , Cerebral Palsy (CP), Parkinson's. These similar conditions all say that you must tell, so the safe route for people with HSP would be to declare this to the DVLA.