Families across South Yorkshire say autism and ADHD referrals are being blocked by rule they did not know about
Families across South Yorkshire are facing unexpected obstacles in accessing NHS-funded autism and ADHD assessments due to local policy rules, leaving parents seeking answers and children waiting for crucial support.
Imagine finally finding somewhere that can assess your child for autism or ADHD, only to be told the referral cannot go ahead because of a rule you knew nothing about. That is the situation families are describing to us across South Yorkshire. Some say they discovered the problem through a rejection letter. Others heard from another parent. They are worried about losing their chosen service and having to start searching again.
An assessment helps establish whether someone is autistic, has ADHD, or needs a different explanation for their difficulties. It can help families and professionals understand a child better and plan appropriate support. Children should receive help according to their needs while waiting but parents tell us they are already struggling to get those needs understood at school and elsewhere. More uncertainty about assessment adds to that pressure.
The organisation responsible for planning and funding much of our local NHS care is South Yorkshire Integrated Care Board. I will call it the health board. Its decisions affect families in Sheffield, Barnsley, Doncaster and Rotherham.
The dispute concerns services available through “Right to Choose”. This allows eligible patients in England, following an appropriate referral, to choose a service with a qualifying NHS contract, including some independent providers. The assessment is NHS funded. Families may explore this option when local waits are long or another service better meets their needs. They still need a suitable service, qualified professionals and reliable care.
The health board’s policy requires providers to be registered with the Care Quality Commission, usually called the CQC. This is the regulator that checks many health and care services in England. Safety and quality matter enormously. Parents want confidence that assessments are thorough and carried out by appropriately qualified professionals. However, there is a problem with making registration a blanket requirement. The CQC says services providing only autism or ADHD diagnosis, without treatment, currently fall outside its regulatory powers. On October 9, it announced plans to regulate these services once new regulations are in place. Families therefore deserve a straightforward explanation. Why should an assessment service be excluded for lacking registration when the regulator says it cannot currently regulate that type of service?
The health board also has a separate rule against funding ADHD providers that assess people but cannot provide treatment afterwards when needed. Families need to know which rule has affected their referral and what suitable alternative is available. The board says its policy aims to improve quality, access and consistency. Those are worthwhile aims. It should explain how they are being achieved for families whose referrals have been refused or interrupted. NHS England’s guidance says advance approval from the organisation funding care is unnecessary where the legal right to choose applies. The health board must explain clearly how its arrangements fit that guidance.
There is another difficulty after an ADHD diagnosis. Some families report being unable to obtain medication because their GP will not take over prescribing. This arrangement, called shared care, involves a specialist and GP sharing responsibilities. The local policy says the assessment and treatment provider must continue prescribing and monitoring where shared care is unavailable. Families need to know how that promise will work for them.
Parents should be told before referral who will provide any treatment, who will monitor it and whom to contact if arrangements break down. Families also deserve a voice in decisions that affect them. Some disabled people, parents and local organisations tell us they were neither consulted about these restrictions nor warned before encountering them.
The health board says patient involvement informed its policy. It should explain who was involved, what they were asked and how concerns about losing access to assessment were considered. It should publish how many referrals have been rejected or disrupted, explain the reasons in ordinary language and give every affected family a clear next step. Where a different provider is needed, families should receive practical help with the transfer and an explanation of how their previous waiting time will be considered. The board should meet affected families and advocacy organisations, review the disputed registration requirement and explain what will happen while national regulation changes.
For families already exhausted by appointments, forms and uncertainty, clear answers can make an enormous difference to their daily lives. These are children trying to understand themselves and parents trying to help them. They need clear information, timely assessment and dependable support.
A family should never be left carrying the consequences of a disagreement between the organisations responsible for arranging care.