An Aberdeenshire mother who is waiting for an ADHD and autism diagnosis for both her and her daughter says scrapping assessments will “drive people into really dark mental health spaces”.
A lifeline plea to keep Aberdeenshire ADHD and autism assessments alive was rejected by broke health bosses last week.
And the impact will be catastrophic, according to Zoe Mason-Reid of Finzean.
The 38-year-old, who is an environmental manager in the energy sector, has struggled with mental health issues her entire life.
These include “crippling” anxiety and battling an eating disorder during her 20s, when she was an outpatient at Cornhill.
It was only when she went through the process of getting her seven-year-old daughter a diagnosis as neurodivergent and ADHD – the family are currently waiting on an autism diagnosis – that Zoe’s GP told her she should consider getting a diagnosis for herself.
ADHD and autism assessments ‘life-changing’
Zoe said: “Going through all of that [her daughter’s diagnosis process], and being in a sort of ‘fight or flight’ state and managing what was going on with our hugely dysregulated child, the doctor said: ‘Wait a minute, actually Zoe, we’re not going to keep upping your anti-depressants, I think there’s something more at play, I think it’s time we sat down and discussed whether you might be neurodivergent as well.’
“That was last summer. I went private for an autism diagnosis at the end of last year, because I knew what the waiting times would be like. It cost about £650.
“Long story short, my GP said: ‘go private’.
“I have to give a shout out to the Aboyne GPs, they have been absolutely phenomenal. A phenomenal support for my daughter, for my family, and also for me. And I know we are not the only family that they have been advocating for.
“So I went to see this private chap in Aberdeen and it was life-changing for me.
“I had two appointments, and within the space of those two appointments – as well as providing various medical reports – I was diagnosed as being on the autistic spectrum.
“All of a sudden so many things made so much sense. It was hugely empowering.
“All of these things, I’ve been pulling my hair out since I was 13, my eating disorder, all of these things, at the grand old age of 38…”
‘Shock, anger, disbelief. All of these things could have been picked up on’
Zoe described the “grieving process” she went through when she realised how life might have been had she known at an earlier age.
But this soon gave way to a desire to drive change.
“I actually spent a few minutes in shock, in anger and disbelief, because all of these things could have been picked up on.
“I could have lived a life free of these things, I could have done better at university, I could have done better at school, my relationships could have been better.
“It’s a huge grievance process, but I chose not to dwell there because you can’t change the past.
“So I decided to channel my energy into driving change, because that’s what I can influence. I’m the chair of the parent council at Banchory Primary School, I’m a community councillor in Finzean, I’m part of advocacy groups through Autism and Neurodiversity North Scotland (A-ND).”
‘Three years we battled for that diagnosis. You have to fight for every ounce of support’
Zoe’s youngest daughter, who is seven, has an ADHD diagnosis through the NHS which Zoe said she had to “fight tooth and nail for.”
She added: “Three years we battled to get that diagnosis. And we’re still waiting on the autism diagnosis.
“You have to fight for any ounce of support.”
Zoe herself is currently waiting for an ADHD diagnosis through the NHS.
“That is critical for me. I need the meds to see if that works. I’ve jumped through lots of hoops.
“It’s impacting me hugely, in the sense that I cannot receive an appointment for a diagnosis, receive that medication, receive that support, until I get a diagnosis.”
Nearly 2,000 adults in north-east waiting for ADHD and autism assessments
The P&J revealed last week how cash-strapped health chiefs have refused desperate pleas to continue autism and ADHD assessments in Aberdeenshire for an extra six months.
There are currently about 1,800 adults across the north-east waiting to be tested.
During a crunch meeting on health cuts in February, campaigners pleaded for health bosses to find £80,000 to keep the department going for another six months until a replacement service is launched.
However, a fresh report laying bare the financial woes of the Aberdeenshire Health and Social Care Partnership (AHSCP) appears to have poured cold water on these ambitions.
The hope had been that cash could be secured to continue a “reduced service” for six months.
However, officials have now warned that the AHSCP would be “unable” to do this as things stand, without a damaging domino effect hammering other departments.
‘Social care are going to get absolutely hounded’
And Zoe said the impact could be catastrophic.
“It will drive people into really dark mental health spaces,” she said.
“There’s going to be additional pressure on other services, whether it be mental health services, general practitioners, the charities that are out there.
“It’s going to leave people in very, very vulnerable situations.
“Social care are going to get absolutely hounded.”
Zoe accused officials of lacking the real-life experience required to make such decisions on such crucial services.
A lack of lived experience was an accusation previously aimed at Aberdeenshire Council after last year’s cuts to speech and language therapy in schools.
“I watched the recording of the meeting and it was just like ‘computer says no’,” said Zoe.
“There was no emotion there, there was no real-life experience.
“In order to make those kinds of decisions you need to have lived experience within that decision-making process.
“You can’t just blindly make that decision and ignore the feedback that’s been fed to you.
“I personally don’t want to see anybody that’s not got experience, or not taken into account experience, making decisions on the Integration Joint Board.
“It’s not right. It’s immoral.
“Yes, there maybe wasn’t funding in the first place. But that needs to be sought – that’s their job.”
‘We’re the forgotten children… We deserve so much better’
Zoe thinks health bosses have been short-sighted in not protecting ADHD and autism assessments, as it will end up costing them more in the long run.
“The cuts will directly jeopardise the mental wellbeing of so many, and add additional strain on the already limited general practitioners,” she said.
“If it’s about the budget, be smart with it.
“Look at the bigger picture, when it comes to looking at early diagnosis.
“How much could you save on preventing people from ending up in eating disorder units, or spending years and years in mental health services?
“There’s a tide of us just now, the forgotten children.
“Deal with us, but at the same time focus on a holistic and engaging pathway because right now it is so fragmented.
“We have the lived experience, we’ve all been through it over the last decade plus. We can share what works, what hasn’t worked, where the gaps are.
“Listen to the people that have the information, let us help inform the creation of a new pathway, something that is going to be effective, but also cost-effective.
“Because that’s ultimately what they want, but it’s also what we need.
“Just because I have lived this heartache, it doesn’t mean others should have to endure it too.
“We deserve so much better.”
‘Lack of engagement with those who think differently’
Autism charity A-ND echoed much of Zoe’s ire.
CEO Billy Alexander said: “Early intervention has been proven to reduce the need for more expensive care interventions and mental health services, which average £10,000 per individual if conditions worsen due to late diagnosis.
“If we prevent this scenario in just 30% of cases, we can save about £3million over five years.
“However, a significant issue remains: Aberdeenshire Council’s lack of engagement with those who think differently is a missed opportunity for creativity and innovation that could potentially help fund the solutions we seek.
“It is crucial to include voices of lived experience at the heart of these discussions.
“They should have an equal and respected seat at the table to collaborate with the council to find a solution that works for everyone.”
The future of autism and ADHD assessments was due to be discussed at yesterday’s (Wednesday) meeting of the Integration Joint Board. However, the matter was deferred to a future meeting.
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