An overwhelming

Hydrocephalus Awareness

week 2023 was our most successful ever!

During the week, we launched new resources (see pg 3 for details), reminded you about hydrocephalus advice and information that is available via our staff and on our website, and ran loads of online learning and information sessions, and held virtual social sessions for members to connect and engage with one another.

We also delivered presentations to Royal College Paediatrics Child Health Wales’ St David’s Day conference, Cardiff and the British Paediatric Neurosurgery Group annual meeting in Birmingham, and put a focus on the importance of measuring head circumference in new babies in partnership with Harry’s Hat – all fantastic opportunities for us to raise awareness and let professionals know what Shine

71NEWMEMBERS with Hydrocephalus, Spina Bifida and Hydrocephalus or Normal Pressure Hydrocephalus signed up

392 GP PACKS SENT OUT 84 does, and how our work can complement the statutory services they offer.

The best bit – having so many Shine members get involved. We couldn’t believe the number of stories and pictures that came in for #livingwithhydrocephalus and our fundraising campaign #hatsonforhydrocephalus. It was wonderful! With huge thanks once again to Codman for sponsoring and supporting us throughout the week.

You can find information and resources for Hydrocephalus here https://www.shinecharity.org.uk/ hydrocephalus/hydrocephalus

49 NEW professional members Requests for printed information

120 members took part in online events

500 information downloads from our website

Spotlight on a Funder – The Hospital Saturday Fund

The Hospital Saturday Fund has donated regularly to Shine since 2001. Founded in 1873, it was created to help improve hospitals at a time when lack of nutrition, over-crowding, poverty and ill-health were common.

The Fund was built from those in employment paying a regular weekly amount. Pay day was a Saturday and it’s from this that the Hospital Saturday Fund takes its name. Now funded by a trading company, all profits are directed to The Hospital Saturday Fund, which gives grants to charities like Shine.

The Hospital Saturday Fund has an interest in health and medical charities, and over the last 20 years has supported Shine with projects in Wales, Little Stars, our COVID-19 appeal and Health work.

The Fund is currently supporting Shine’s Health team with a grant towards their work, and says, “We are proud to have been able to support Shine over many years, and most recently with their specialist advice and support health services to improve the quality of life for people with Spina Bifida and Hydrocephalus. It brings the Trustees of the Hospital Saturday Fund immense satisfaction knowing our grant makes this possible.” story...

You can find out more about The Hospital Saturday Fund at www.hospitalsaturdayfund.org, on Twitter (@HSFCharity), Instagram (hsfcharity) and Facebook (The Hospital Saturday Fund).

Three weeks after Logan was born in 2009, a strawberry mark appeared on the base of his spine. Despite being referred to a paediatrician, Logan’s spine wasn’t scanned.

When he started to walk, his left foot turned in and when he was 3.5 years old, he started wetting himself even though he’d been previously potty trained. At age 5, Logan was diagnosed with a tethered spinal cord with a lipoma and had surgery the year after. Logan is now doubly incontinent and has had numerous operations on his foot.

The family contacted a solicitor through the Shine's Legal Service in 2020 to see if their worries around the failure to scan Logan’s spine in 2009 were valid.

Logan’s claim is still being investigated but four experts in neurosurgery, orthopaedics, and paediatrics are all agreed that Logan should have been scanned.

Had he been diagnosed in 2009, he would have been closely observed and surgery would have taken place much sooner avoiding the incontinence and his foot problems.

Even though Logan’s case is ongoing, the family already have a better understanding of what happened. It is a relief for them to know that they weren’t being difficult when they kept going back to the doctors – they were right to be worried.

Even though no one can turn back time, the aim now is to make Logan's future more comfortable for him and he now has a team fighting for him to get the treatment and care he will need for the rest of his life.

Shine’s Legal Service is delivered in partnership with

If you would like to find out more about our Shine Legal Service scan this QR code to find your local expert www.shinecharity.org.uk/legal-service/shine-legal-service