ADULTS desperate for an assessment to diagnose whether they have autism or ADHD feel ‘abandoned’ by a new system which means they can’t even get a referral, a damning report by Healthwatch York says.
Under the ‘pilot’ system introduced by the Humber and North Yorkshire integrated care board (ICB) earlier this year, everyone seeking an assessment for autism or ADHD is now referred to an online ‘Do-It Profiler’ which they must fill in themselves.
Only those who meet specific criteria are then referred for further assessment – which means no adults except those facing ‘immediate and life threatening health or family breakdown issues’ are currently able to get assessed.
The system was initially piloted in March this year and was due to end on June 27 – but has now been extended for a further nine months.
The ICB says ADHD and autism assessments ‘had been growing faster than we could see patients’ – with waiting times in years rather than months.
The aim of the pilot was to try to ‘prioritise those people with the greatest need’, it said.
But, as reported by The Press last month, the York Disability Rights Forum (YDRF) says the pilot programme amounts to ‘systemic exclusion’, with the absence of assessments meaning people are not getting the support they need.
The YDRF has launched an 'Access Denied' crowdfunding bid to raise money for a legal challenge.
Now Healthwatch York has published a critical report highlighting the effect the new system has on adults desperate for a diagnosis.
The report, which took into account feedback from 245 people, says the system is ‘inaccessible for people who are not online or need help to fill in forms’, and adds: ‘Many people who did not meet the criteria felt abandoned.’
One person who provided feedback wrote: “I have been in tears for the last four hours. My GP sent me the link to the Do-It Profiler …which shows I have many traits of autism.
“However, I now understand ... I can't have a full assessment … as (the ICB) only select certain people.”
Emily Douse, Deputy Manager at Healthwatch York, said: “We heard from people who are extremely distressed and feel abandoned by the system as a result of the pilot.
“Their experiences must be heard as part of the pilot evaluation and factored into future plans.”
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Hilary Conroy of the York Disability Rights Forum added: "NHS leaders are making decisions behind closed doors without the input of the people affected. Our community deserves better than this."
In a response, the ICB said the Healthwatch report would ‘become part of the body of evidence that helps us improve our approach to adult autism and ADHD assessment’.
It said its pilot programme aimed to ‘identify those most at risk’.
“Previously, all referrals were assessed in chronological date order and there was no system for identifying those people who needed help more urgently,” it said.
“The changes are in the context of growing demand for adult autism and ADHD assessments.”
The ICB said since the start of the pilot in March, some ‘adjustments’ had been identified following feedback. In future, it said, everyone registered on the ‘Do-It Profiler’ platform ‘will be offered the opportunity to remain on a triage waiting list’.
But the York Disability Rights Forum said the ‘triage waiting list’ was simply an online register, not a true waiting list, and that the eligibility criteria for assessment referrals had not changed.
It has now raised £5,000 through its 'Access Denied' crowdfunder and hopes to start its legal challenge to the assessment system soon.
Read the full Healthwatch report here
'I've been in tears for four hours': what they say about autism and ADHD referrals
The healthwatch report on adult autism and ADHD referrals contains first-hand testimony from people who say they feel let down by the system.
One person who gave feedback said: “There is no other part of the NHS where you are not allowed to at least be put on a waiting list if you are displaying symptoms of a condition.
"I have worked for the last 30 years and contributed fully to tax and National Insurance so why am I being told I can't access the NHS for further investigation?”
Another added: “I have been in tears for the last four hours. My GP sent me the link to the Do-It Profiler which I completed today which shows I have many traits of autism.
"However, I now understand that's it, I can't have a full assessment so can't get a diagnosis under (the) new system as you (the care board) only select certain people for further assessment.”
A third person who gave feedback said: "I am 48 years old, have a child with autism, another on an ADHD assessment pathway and my traits are seriously impacting my life on a daily basis.
"I was quite prepared to go on a waiting list and expected it to be at least a two year wait (it took five years for my son to get his diagnosis), but to be told I can't even go on a waiting list is devastating and I feel a waste of resources (my GP has spent time sending me the link, I spent time completing it and I'm not on a waiting list so will no doubt have to go through all this again at some point to get onto a waiting list).”
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