Poor information and understanding about patient choice affects access to assessment and care
Our complaints show there are barriers to accessing ADHD and autism pathways, including a lack of information about options and entitlements, referral delays, and long waiting lists. We also see gaps in communication, signposting and needs-led support for people waiting for an assessment.
Patient case study: exercising the Right to Choose
The complaint
Mr L complained that his GP practice incorrectly insisted that he be referred to a locally commissioned ADHD service rather than allowing him to choose an alternative NHS-funded provider under Right to Choose (patients’ legal right to choose which provider carries out their NHS-funded care). He believed this delayed his access to assessment and treatment, forcing him to fund his own private assessment.
He also complained that NHS South East London ICB failed to tell him or his GP about his right to choose an ADHD service. Mr L said the lack of timely care affected his mental health and made him lose confidence in the NHS.
‘It has been extremely distressing to be denied healthcare needlessly… The GP and commissioners attributed significant problems to myself instead of appropriately considering system failings.’ Mr L
The outcome
We found that the GP practice failed to refer Mr L to his chosen provider and the ICB failed to facilitate his care under patient choice arrangements. The ICB did not make sure that the GP practice was aware of alternative ADHD service options, wrongly refused Mr L access to NHS-funded care through his chosen provider and subsequently delayed his treatment.
We recognised that the GP practice had already apologised to Mr L and had made changes to its process to help prevent similar mistakes happening again.
We recommended the ICB make a financial payment to Mr L to recognise the distress caused and reimburse the costs of his private ADHD assessment and treatment.
Patient case study: coordination and communication of prescribing
The complaint
Ms R complained that South London and Maudsley NHS Foundation Trust removed her from the ADHD medication titration waiting list without warning or valid reason and left her without the support she needed for around six months. Titration is the process of adjusting medication to find the right balance between improving symptoms and minimal side effects. She said this affected her ability to perform daily tasks at home and at work and caused her financial hardship.
‘After almost four years of waiting lists, I am back at square one, with no treatment or titration for ADHD… The NHS has a duty to treat my condition, and my medication is currently not working well for me, which means I struggle with daily tasks, my work and employment.’ Ms R
The outcome
We found service and pathway failings around communication, coordination and continuity of care. This included failure to communicate with the GP about the purpose of a referral to its services, Ms R’s removal from the waiting list, medication shortages and the decision not to prescribe to new patients. There was also a missed opportunity for safe monitoring and titration by a specialist.
The Trust had already started to review waiting list procedures, referral and communication processes, patient information and operational policies in response to wider pressures on ADHD services.
We recommended an apology, a payment of £400 to Ms R to recognise the distress and frustration caused, and for the Trust to continue the service improvements it had started making.