A worried mum is battling to get a number of medical therapies for her daughter who suffers from a range of complex health conditions.
Lucinda Ritchie, 25, suffers from Ehlers-Danlos Syndrome - a disorder which causes her joints to dislocate easily and affects many of her organs.
She also has a neurological movement disorder and frequently suffers seizures, along with asthma, gastrointestinal problems and recently-developed speech problems. She receives 24 hour NHS nursing care at her home in Billingshurst.
But her mum Christine says that she has been trying unsuccessfully for nearly a year to get therapies to help improve Lucinda’s quality of life. “She has not been given access to services she urgently requires.”
She said Lucinda needs urgent neurological physiotherapy, occupational therapy, chest physio, trauma therapy and speech therapy.
Lucinda has had difficulty with her speech since a seizure last October and often cannot speak for most of the day. “She has to communicate with her eyes. She has no other means of communication at this time when she is in a post-seizure stage,” said Christine.
Lucinda has recently received an ‘Eye Gaze’ computer system - a way of accessing a communication aid using a mouse controlled by her eyes - but is unable to use it straight after recovering from a seizure.
Meanwhile, said Christine, Lucinda is “frustrated when her nurses, family and other people can’t understand her. Speech therapy would help her use the muscles she needs to speak.”
But Christine said it was not just speech therapy that Lucinda had not received - she said she had received no therapies since April 2017, despite repeated medical requests.
Lucinda, whom her mum describes as ‘intelligent’ has an IQ of 140 and a first class honours BSc degree in geography with environmental studies. Her dream now is to study for a masters.
Christine said that Lucinda had an excellent care package from the NHS and that both Horsham District Council and West Sussex County Council had been ‘fantastic’ in helping organise care and housing for Lucinda.
But she said delays in getting therapies had had ‘serious repercussions on Lucinda’s physical and mental health.’ She has now complained to NHS England and is waiting to hear back from them.