14th January 2026
Meeting report by Hilary Croydon
We have a separate meeting occasionally for these types of HSP because, although they are very similar to each other, they are very different, in some ways, from other types of Hereditary Spastic Paraplegia, most (but not all) of those affected being young adults dependent upon their parents and other close family.
These two types of complex Hereditary Spastic Paraplegia are particularly rare and the few affected families are scattered across the country so Zoom gatherings work very well for us.
A group of us met on Zoom for a couple of hours for mutual support and to share experiences and tips for tackling various aspects of these HSPs. We were very aware that SPG11 and SPG 15 can affect people in varied ways and also that families will be at different stages of their journey. However, there is much overlap and all share the emotional and physical stresses associated with caring for loved ones with complex HSPs especially as we parents get older!
We discussed some spasticity medications and experiences with the baclofen pump. We also explored the support received by families from a variety of different medical professionals including GPs, neurologists, rehabilitation consultants, neurophysiotherapists, neuropsychologists, orthotists, occupational therapists, speech and language therapists and community teams such as district nurses and neurology nurses. All these can make a valuable contribution to the care of someone with SPG 11 or SPG 15. One family had been fortunate enough to have benefited from psychological support for the affected person which often seems to be an area where much needed help is lacking.
The support available from the Local Authority via a Care Plan was another important aspect and had included: support to access the community; personal care in the home; respite and holiday provision; supported living and other alternatives to support when parents are no longer able to care on a daily basis. https://www.carersuk.org/help-and-advice/practical-support/ We discussed applications for NHS Continuing Healthcare provision to cover nursing and care costs; the bar seems very high and only a handful of families appear to have been successful with this. https://www.nhs.uk/social-care-and-support/money-work-and-benefits/nhs-continuing-healthcare/
It became clear that, when selecting a wheelchair accessible vehicle, it’s worth bearing in mind that care workers may not be comfortable driving a large vehicle and, indeed, may not have a driving licence which allows them to drive a car with a manual gear box at all.
We talked about NHS genetic testing for the extended family which seems to have become more restricted over recent years but we hoped that, as costs come down, it may become more widely available, enabling people to plan for the future.
On the administrative side we covered CamRare’s Rare Patient Passport which can be useful to show to medical professionals or care staff who are unfamiliar with a particular rare condition. It provides a summary of key information and can be updated and could be helpful to anyone with any type of HSP. https://www.camraredisease.org/rare-patient-passport/
We also agreed on the value of Lasting Powers of Attorney for both Finance and Property and for Health and Welfare. If a person loses the mental capacity to make their own decisions, these enable someone they trust to speak and act for them. (England and Wales: https://www.gov.uk/power-of-attorney )
The law is a bit different in Scotland and Northern Ireland. (Scotland: https://www.mygov.scot/power-of-attorney) (Northern Ireland: https://www.nidirect.gov.uk/articles/managing-your-affairs-and-enduring-power-attorney )
The alternative is for someone to be appointed as a Deputy which is expensive, time consuming and cumbersome. England and Wales: https://www.gov.uk/become-deputy
Again the law is different in (Scotland: https://www.mygov.scot/guardianship ) and (Northern Ireland: https://www.justice-ni.gov.uk/articles/how-apply-become-controller)
There is a Facebook group for those living with or supporting someone with SPG 11 or SPG 15; if you are in this situation, you are very welcome to join us. https://www.facebook.com/groups/1868645340055659
We’re looking forward to meeting on Zoom again so, if you would like to meet up, please get in touch with me via the HSP Support Group; I’d love to hear from you.