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Labour MSP slams Scottish Government over autism support

Labour MSP slams Scottish Government over autism support

Mr Johnson, who has ADHD, said it feels as though the Scottish Government "want us to disappear" through their response to the report and what he described as a lack of urgency to act on problems highlighted.
His comments come after Scotland's Autism organisations published a major survey report on Wednesday which found that some individuals are waiting over seven years for an autism diagnosis.
It also found that half of respondents (50.65%) said it was hard or very hard to get a referral for an autism assessment, with just over a fifth (21%) saying they had been refused a referral at some point.
Responding to the report, Mr Johnson said: 'This is a really chilling read.
'When people seek a diagnosis that is normally because of crisis, whether that is family crisis. For young people, school refusal. For adults, that could be relationships or work.
'So through these waits, you are prolonging that crisis. I am very concerned about all of this."
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Mr Johnson also said the focus on privatisation in the report was an important point.
Just over a fifth (21%) of survey respondents had sought a private diagnosis, with long waiting times and the absence of a local adult assessment pathway cited as key factors.
The average cost of a private diagnosis reported was £1,540 with the highest reported cost being £4,500.
A total of 39% of those who had sought a private diagnosis reported that this had caused them financial hardship.
Mr Johnson said: 'You are essentially saying that neurodevelopmental conditions are now not within the scope of the NHS and it is in essence privatising the provision of that healthcare for those people for whom it is an absolutely essential lifeline and that is unacceptable.'
The Scottish Government has since said long waits for support are "unacceptable" and they are "working to improve access to the best possible care".
In his response to the report, newly-appointed Wellbeing Minister Tom Arthur said accusations that the Scottish Government has 'removed' children from CAMHS waiting lists are false.
However, Mr Johnson has since hit back saying that CAMHS specific waiting lists were not referred to in the report as being the place where children were 'removed' from and people have been removed from waiting lists for referral.
"They have been removed.
"CAMHS may not be the right service, but they haven't specified what is the right service," Mr Johnson told The Herald. "Right now it is impossible, either as a matter of policy or a matter of fact, to get an assessment for autism or ADHD as a child or adult.
"Health boards have either stopped taking referrals or have such long waits they might as well have.
'It is Orwellian [from the Government]. To say it is false, just on a strict measurement, it is a fact."
Last month, John Swinney told parliament that assessment referrals would not be accepted without a co-occurring mental health condition.
Mr Johnson believes his own condition and autism have been neglected by the government.
The MSP told The Herald: 'These conditions very often get described as invisible disabilities.
"Right now it feels like the Scottish Government wants us to disappear because I don't see where we are in their plans at all."
He added: 'Alternative pathways for a diagnosis of autism or ADHD have not been created.
'For new referrals like in big parts of Scotland such as Tayside there is not presently a route to an assessment or diagnosis on the NHS and there are other parts of Scotland where they are not accepting new referrals, such as in Lothian.
'In most of Scotland, the wait time is being measured in decades. I have got constituents who are already on waiting lists who have been told they will be for 17 years.
'That just means it is de facto not available.'
The National Neurodevelopmental Specification for children and young people sets out the standards all children's services should follow to ensure those with neurodevelopmental support needs receive the support they need.
The Scottish Government has said this makes clear that support should be put in place to meet the child or young person's requirements when they need it, rather than be dependent on a formal diagnosis.
However, Mr Johnson argues this does not help those who are unsure about their condition.
The Scottish Labour MSP said: 'The line recently that the government has been using about not needing a diagnosis to access help is again Orwellian.
'You need a diagnosis to know what help you need. You're actually asking people to guess and stumble upon what their condition is.
'It is also wrong.'
The MSP said a broad range of local authority guidelines on additional help access often stipulates a diagnosis is required.
The government's handling of ADHD is also a concern for Mr Johnson.
A Holyrood committee has just launched an inquiry into treatment pathways and support for both ADHD and Autism Spectrum Disorder (ASD).
'For ADHD, medication is a key line of therapy," Mr Johnson said, "That's what the NICE guidelines state. You cannot get medication without a diagnosis and currently on the NHS that requires specialist, secondary care diagnosis from a psychiatrist.
'To say you don't need a diagnosis to access help is just factually incorrect.
'By not providing the therapy or assessment, you are going to cause those comorbid mental health conditions. Unassessed autism and ADHD is a massive cause of mental health problems.
'The Scottish Government are wishing away a problem and pretending they are not causing more issues and I worry about what this means for the mental health of our young people in Scotland.'
The Labour MSP said the Scottish Government must recognise the 'crisis' in support and act urgently.
'They need to recognise the crisis. We need a pathway to assessment and diagnosis for those that need it.
'There's an urgency that's lacking here and that's just going to compound the crisis that so many people will be facing.'
The 'Experiences of Autism Assessment and Diagnosis in Scotland' report was undertaken by Autism Rights Group Highland (ARGH), Autistic Mutual Aid Society Edinburgh (AMASE) and Scottish Ethnic Minority Autistics (SEMA) in partnership with Scottish Autism.
These organisations are calling for a nationwide guarantee regarding timely access to assessments, an improved experience for people going through the process, and better provision of post-diagnostic support.
They also want the government to introduce a national neurodevelopmental assessment guarantee, meaning any adult in Scotland can access an assessment pathway should they need to.

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Ozempic-like fat jabs taken by millions linked to 181 cases of killer side effect and 5 deaths, health officials warn
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Ozempic-like fat jabs taken by millions linked to 181 cases of killer side effect and 5 deaths, health officials warn

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As an NHS GP, I can now prescribe weight-loss jabs – but a quick fix for obesity is not what we need
As an NHS GP, I can now prescribe weight-loss jabs – but a quick fix for obesity is not what we need

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As an NHS GP, I can now prescribe weight-loss jabs – but a quick fix for obesity is not what we need

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Poor sleep and no routine – the seven things that make ADHD worse
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Poor sleep also worsens ADHD symptoms like focus, anxiety and impulsivity. ADHD is often called a 'dopamine disorder'. Lower levels of this neurotransmitter drive people to seek stimulation, like scrolling social media or watching TV late, which keeps the mind switched on. What to do: Dr Coiffat recommends a pre-sleep routine to relax the mind and body. 'Put down your devices, dim the lighting, and do calm activities like a bath, reading or gentle stretches.' She also suggests exercise to counter restlessness. 'If you don't burn off energy during the day, it can make you restless at night – including hyperactivity of the mind,' she adds. Journaling can help. 'Get your thoughts down on paper, but limit it to 10 minutes, so you don't start to get anxious,' she says. Meditation may also help quieten and slow down the mind. A negative mindset From comments like 'you're lazy', 'disorganised' and 'unmotivated', people with ADHD have often had a lifetime of absorbing negative messages and as a result often struggle with shame and lack of self-confidence. 'This can lead to withdrawal, people might think nobody likes them, or they'll say the wrong thing, or that they don't fit in or can't manage a task. But social interaction with trusted friends, family and colleagues can help with these negative thoughts,' says Dr Coiffat. Emotional dysregulation is often a key marker of ADHD, and many experts talk about 'rejection sensitivity dysphoria', where people are extremely sensitive to criticism and perceived rejection. What to do: 'Communication is important, it might be as simple as asking someone to adjust how they give feedback, or how they respond to emails,' says Dr Coiffat. Dr Kustow advises nurturing a growth, rather than a fixed, mindset. 'When faced with a setback, think about what you can learn from it, and how adversity makes you stronger. Also, it's important to address the self-esteem challenges of ADHD with support scaffolds – spiritual, social, family and therapeutic,' he adds. Poor diet leading to blood sugar crashes Many ADHD-ers reach for sugar, caffeine and energy drinks as well as processed foods to give them a short-term hit. This can lead to issues like overeating or skipping meals, which is why they have higher rates of obesity and binge-eating disorder. 'Reaching for sugar hits can be addictive, and get you into a vicious cycle. If your blood sugar levels are spiking, that will heighten issues with attention, focus and restlessness. A lot of people with ADHD, and I do this myself, are often so focused on something or using all their brain capacity just to get through the day that they forget to eat, which also leads to a crash,' says Dr Coiffat. What to do: Keep blood sugar consistent by eating regularly and healthily. Try to keep simple snacks like a handful of nuts on hand. Avoid sugar and simple carbohydrates like white flour and rice, and include sufficient protein in every meal, as protein helps stabilise blood sugar. Get 'hits' from other sources like live music, exercise, and cold water swimming. An over-stimulating environment People with ADHD can thrive on a certain degree of novelty and stimulation, as monotonous tasks can cause shutdown, zoning out or restlessness. However, it's a fine balance as chronic stress and anxiety can also intensify ADHD symptoms, leading to potential increased impulsivity, difficulty concentrating, problems with emotional regulation, performance at work and burnout. People can vary quite widely here. Many might struggle with a 9-5, desk-based job in an open plan office with a lot of potential for noise and distractibility. However, for others, the noise and routine could be helpful. 'There can be a struggle to get in for 9am because of their sleep rhythms, then there is the sensory overload of a journey on public transport in rush hour. The monotony of a desk job that involves little interaction can exacerbate physical and mental restlessness,' says Dr Kustow. However, many with ADHD are also on the autistic spectrum. 'I have a patient who loves archiving, because it's just bringing order into things, but that would be extremely boring for someone who doesn't have that combination,' he adds. Social media and excessive screen use are often a problem as ADHD-ers crave stimulation and the dopamine hits of excessive scrolling, but this can also exacerbate problems with concentration. What to do: In the workplace, it's important to limit screen time and schedule regular screen and meal breaks, as well as time to move around and get outside. 'Jobs that involve creativity, project work, variety and problem solving can be more suitable', says Dr Kustow. But take time to understand your individual needs. Toxins and environmental stressors This is an emerging area, but people with ADHD may be more likely to have allergies, autoimmunity and inflammation, says Dr Kustow. 'Some have more sensitive immune systems, with hypermobility, allergies or chronic illness.' He highlights mould. 'If you're in a mouldy home and struggling with brain function, they may be connected. Some evidence is anecdotal, but toxins may trigger inflammation in sensitive individuals,' he adds. What to do: If you are someone with ADHD who suffers from allergies and has poor immunity, it might be worth trying to reduce toxins in the areas that you have control over. You can gradually buy less toxic versions of cleaning products, both for your body and home, makeup, and natural, pesticide-free foods. Hormonal shifts like perimenopause and menopause Hormonal shifts can make ADHD worse, and also 'unmask' previously undiagnosed ADHD. Perimenopausal women are now one of the largest groups seeking diagnosis. 'During perimenopause, oestrogen levels become dysregulated and start going down, which also reduces dopamine. A woman with ADHD in their 40s may notice that their ADHD might worsen, and they might need higher doses of medication or HRT. Then there are the people who never got a diagnosis because they just about managed, but then suddenly it gets worse because of hormonal shifts and their ADHD is unmasked,' says Dr Kustow. What to do: Adjusting ADHD medication can be helpful, as can HRT. Some doctors might prescribe an antidepressant. Does ADHD get worse with age? ADHD is a neurodevelopmental condition, so it doesn't fundamentally change with age, although the way it manifests can evolve as a response to life events and physical changes. Children are more likely to be hyperactive than adults, and adults may have more issues with time management and organisation. 'In a minority, it can improve and resolve, but most will be stable but find that symptoms may get aggravated at different points in life, as demands change over time, including increasing life responsibilities, hormonal shifts, accumulated stress and physical decline. The demands of retirement are quite different from sitting at a desk doing complex calculations, for example, and symptoms may respond accordingly,' explains Dr Kustow. Dr James Kustow is the author of How to Thrive with Adult ADHD: 7 Pillars for Focus, Productivity and Balance. How to Thrive with Adult ADHD by Dr James Kustow is out now. All artwork by Nicholas Stevenson.

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