Spina Bifida, Hydrocephalus and the other associated conditions (like Encephalocele, Normal Pressure Hydrocephalus, Idiopathic Intracranial Hypotension etc.) can seem very complicated to manage, with a lot to take in and think about.
Whether your own health is affected or the health of someone you love, there can be a variety of different things to juggle to keep as well and active as possible. Sometimes you just need to speak to people who are qualified in different health disciplines, know all about the conditions, but can also speak to you using language and terminology which make sense to you and who can give you the time to answer all of the questions, which you thought of after you walked away from an appointment with a Health Professional.
In addition to health advice and information, our health team also:
Once we became aware of the delays associated with members getting access to NHS OT and Physio support for their babies and toddlers following the onset of Covid 19, we set up the 0-2 Touchpoint Service. This allows our Physio and OT to proactively contact each of our parents of 0–2-year-olds at 4 key developmental stages to offer OT and Physio sessions to support them with their child’s physical and cognitive development. We know that there are certain essential milestones which pave the way to enhancing mobility, sensory processing, muscle strength and coordination and this allows our specialist team to give parents the skills to work with their children at home to give them the best possible chance of meeting these key milestones.
If you have a child under 2 years old, this is why we have been trying to contact you – if you have not heard from us and would like this service then please contact us on 01733 555988 to book an appointment.
This year we will also be using the information we gained from the 1000 voices survey to inform the establishment of virtual health hubs for adults of all ages with spina bifida and/or hydrocephalus to help you to maximise your physical and mental wellbeing, and equip you with age-specific knowledge, information, and support to enable more preventative approaches to condition management.
Please call First Contact on 01733 555988 or email firstcontact@shinecharity.org.uk, to request an appointment, and we’ll get back to you to arrange this.
Shine Health Direct which is exclusive to Shine members, offering discreet and efficient delivery of urology and stoma products, as well as your prescription medications. Our hassle-free service lets you choose from either delivery to your doorstep or, if you’re out and about, somewhere else that’s convenient for you.
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