Jenna Neale’s six-year-old son Ralphy, who has high functioning autism, is awaiting a diagnosis to see if he also has ADHD
The 30-year-old mum says her little boy desperately needs an assessment, but fears he could be waiting years to get the right support.
She said she wants to ‘shine a light’ on her family’s case to raise awareness of the lack of support they and other families in similar situations are facing.
Jenna said: ‘It’s heartbreaking to watch him struggle every single day, not being able to get him the help he needs.’
Ralphy had a lot of behavioural issues during the first lockdown, and the family’s GP referred them to Child and Adolescent Mental Health Services (CAMHS).
After a phone consultation, Ralphy was added to a lengthy waiting list for an ADHD assessment.
Jenna said: ‘Since then, our son’s behaviour has progressed and got a lot worse.
‘He actually tried to set alight to my kitchen and pulled my hair whilst I was driving, almost causing me to crash.’
To help speed up Ralphy’s wait for an assessment, his school sent more evidence to CAMHS.
Jenna said: ‘They scored the forms we sent back, and Ralphy scored 93, 70 being severe.’
She was told that CAMHS was confident that it now had enough evidence to get Ralphy seen as quickly as possible.
However, after several phone calls to chase up the service, Jenna received a letter stating that her son’s case is not seen as being urgent.
She said: ‘I’d like to ask - what do CAMHS class as urgent? How bad does it have to be?
‘There’s the pressure of trying to contain his behaviour, which is very spontaneous.’
Jenna lives with husband Gary, 31, who is dad to Ralphy and the couple’s other son, Teddy, three.
She said: ‘It’s not that Ralphy is naughty, it’s just not the case.
‘We’re not talking a little bit hyperactive, it’s on a much bigger scale.
‘We’re experiencing this extreme behaviour about once a week.
‘Ralphy can’t be left on his own, he needs 24 hour watch.’
The waiting list the family is now on is two years long.
Jenna added: ‘They advised both me and his dad to sign up for a course until we can be seen. We have already done this.
‘I’ll do whatever I need to to help our son, I’ll sit on any course as long as it benefits Ralphy, but because of the extreme behaviours, it isn’t enough - we feel like we’re being fobbed off.’
Jenna feels that young people in need of mental health support are not being given the help they need, and parents and carers are also left struggling.
She said: ‘I just want to shine a light on the mental health service for young children and the lack of support us as parents/carers get and the children themselves.
‘A lot of people are facing the same troubles. It’s truly terrible.’
Tony Lloyd, CEO of the ADHD Foundation, says that Ralphy’s situation is sadly the norm for families waiting for an ADHD diagnosis for their child.
He said: ‘Unfortunately this is a normal waiting list time, and it’s actually even longer in some other parts of the country, even before the pandemic.
‘This is typical, and it’s really quite sad. There’s just not the capacity in the NHS to meet demand.’
Tony said that children with ADHD experience greater levels of anxiety, and the conditions of lockdown have only made things worse for youngsters and their families.
He added: ‘Such a long wait is really not helpful – two years is not acceptable.
‘As it stands, the situation is dire for families with children with ADHD.’
Despite the NHS constitution’s statement that no patient should wait more than 18 weeks for any treatment, and guidelines from National Institute for Health and Care Excellence (NICE) regarding support for children with an ADHD diagnosis, Tony says that children and their families are just not receiving the support they need.
He said: ‘Medication is incredibly effective in improving cognitive function, helping brains with processing information which makes learning more successful, but there should also be training and support for parents, and cognitive behavioural therapy should be made available.
‘However, there’s often very little support or guidance available even though we know this is of significant benefit to families.
‘It was hard even before Covid – the quality of care and non-adherence to NICE guidelines was the subject of thousands of complaints written by parents to their local MP.’
A representative of Sussex Partnership NHS Foundation Trust said: ‘Our specialist child and adolescent mental health services are working hard to address waiting times.
‘We have recently received additional investment which will enable the service to increase the support we can offer to young people and their families who require specialist mental healthcare.
‘One of the priority areas for this investment is in relation to ADHD assessments.
‘We continue to work with our partners to identify ways we can meet the growing need for clinical and community services and our website, www.hampshirecamhs.nhs.uk, has a variety of useful resources, self-help tools and signposting to other local services.’