“It’s really frightening. You think ‘is she going to be ok or do I have to phone for an ambulance again?’.
“What’s she going to be like when she comes round? It’s a daily struggle”.
Kiley Lay’s daughter Katie suffers from epilepsy. The 17-year-old from Essex has had the condition since she was two-years-old. but recently her illness has taken a turn for the worse.
“The seizures have got more frequent and more violent. She’ll try and scratch herself and pull her hair. She’s had 124 seizures since April.”
‘Not good enough’
Katie was having daily seizures in the summer, so her family turned to their GP for help.
They were told their daughter could be referred to a neurologist – but there was a waiting list.
The earliest she could see a neurologist would be February next year.
Kiley says: “We need the appointment brought forward because Katie’s seizures were getting more prolonged”.
Following a recent visit to A&E, a request for an urgent referral was made for Katie and she is due to see a consultant who specialises in epilepsy in early December.
But she will still have to wait until February to see a neurologist.
Katie said: “It made me angry because I can’t really wait that long. I would love to be a free spirit and live my life.”
A spokesperson for Basildon and Thurrock University Hospitals NHS Foundation Trust told the programme: “There is a national shortage of neurology consultants and the trust has been proactively working to recruit specialist doctors.”
It added one consultant was due to start in March 2018 and the trust was advertising for another.
Earlier this year, a report published by the Neurological Alliance found that that services to diagnose, treat and provide on-going care are failing patients across the spectrum of neurological disorders.
It surveyed 7,000 neurology patients in England about their experience of getting access to care and treatment.
It found that 23% waited more than 12 months to see a neurological specialist after their first visit to a GP.
Suzanne Dobson, chair of the alliance, said: “The impact is huge. For a few, it will mean that they didn’t get treatment earlier enough and so bits of their conditions that many have been reversible, manageable, get worse during the period and they can’t get that back.”
Meanwhile, a separate report published in March by the Association of British Neurologists (ABN) found that the likelihood of a patient with a neurological problem being seen by a neurologist varies dramatically depending on where they are admitted.
It found one in five UK hospitals have access to neurologists on three days a week or less.
Another area of concern highlighted within the Neurological Alliance’s research was the length of time it took to patients to get a diagnosis.
It found that 42% of patients saw a GP five or more times before seeing a neurological specialist.
The National Institute for Health and Care Excellence (NICE) has recognised this as an issue and in January is due to publish new guidance for the health professionals like GPs to help them to better recognise neurological conditions.
The draft guidance says “a lack of support” to help non-specialists identify when a referral is needed, has led to “delays in referral for people with treatable or potentially serious neurological conditions”.
Two years ago a Public Accounts Committee report criticised the wide variations in neurology care in England.
The committee’s chair, Meg Hillier, MP said despite their warnings the situation had not improved.
“Evidence shows from our committee that in 2012 the system wasn’t fit for purpose, that in 2015 it wasn’t and from the evidence 5 live Investigates has shown me, and the Neurological Alliance have been reporting, it’s not got any better. In fact it looks like its going backwards”.
An NHS England spokesperson said a national advisory group on neurology was formed last year, bringing together patient groups within the Neurological Alliance, NHS England and other organisations.
She said: “Its aim is to direct the development of national work to improve outcomes for people living with neurological conditions”.
A Department of Health spokesperson added: “We spend over £3 billion every year on neurological services and the number of neurologists in the NHS has increased by 37% since 2010.
“However, local services must also ensure patients with neurological disorders receive timely care and support and have access to specialists when they need it.”
5 live Investigates is broadcast on Sunday 26th November 2017 at 11am GMT. If you’ve missed it you can catch up on the iPlayer.