Shine news

Shine's statement on the outcome of the serious case review into the death of Kaylea Titford, a young person with spina bifida

18th March 2024


We were absolutely horrified and appalled by the reports in the serious case review this week of the awful conditions and neglect that Kaylea Titford was subjected to in the final months of her life.  
How terribly sad that this young girl, once with her life ahead of her, received only apathy, neglect and so little love from the two people (her parents) who should have protected her and cared for her.

The complications that Kaylea died of are not uncommon to people with spina bifida - mobility is poor; most have double incontinence, and many have difficulty in keeping clean and dry; they are very susceptible to pressure sores and weight management is a problem as lack of mobility presents challenges in maintaining a comfortable weight.  
The review highlights the role statutory services played in her death, stating that “although multiple health professionals participated in the delivery of her complex health care, this was not coordinated by a single agency or practitioner who had a holistic understanding of her complex health and care needs.” Again, lack of access to services is not uncommon for people living with spina bifida. We see it time and time again. Many of Shine’s members who live with the condition are continually having to fight to get access to the right services at the right time.

Shine’s CEO, Kate Steele, says   
‘Whilst spina bifida is very complex, with the right management and on-going care, people with the condition can lead happy, healthy and independent lives, have families and successful careers.   
As the only charity that works across England, Wales and Northern Ireland that supports people with spina bifida and hydrocephalus, Shine has the expertise, specialist knowledge and reach to work with local authorities and other statutory services to help develop and deliver a co-ordinated service for people with spina bifida and/or hydrocephalus.  
I contacted Powys County Council in 2023 to offer such support but I have yet to have any follow up from them. Working with Shine might just avoid someone else losing their life due to the lack of joined up services so we are hoping that Powys will make contact soon’.

Shine would also welcome contact from local authorities, health services and other statutory services across the country to start these conversations and introduce a system that ensures on-going, life-long access to the right statutory services when needed. Shine can be contacted at or by calling 01733 555988.

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