15. Ms M is understandably concerned the Trust delayed referring her son, G, for a specialist eating assessment. She told us that G’s diet is extremely restrictive, he does not eat food, and his only source of nutrition is from one flavour of supplement drinks which are often short in stock. She says the wait for G to be seen has had a long-term detrimental impact to his health as he could have been receiving support much sooner with an earlier referral.
16. We were sorry to hear Ms M’s concerns about how the Trust managed her son’s referral to see a feeding specialist and how this caused her and her family a great deal of distress. From what she told us, this was clearly a very difficult time for the family as they felt unsupported and Ms M’s concerns about the Trust’s actions continue to cause her ongoing distress.
17. When healthcare, treatments, drugs, or equipment are not routinely commissioned by the NHS, clinicians can make an individual funding request (IFR) for patients to access these specialist services. An IFR is an application to fund healthcare (including being assessed by a specialist). The NHS guidance on IFRs says clinicians are encouraged to submit IFRs in a timely manner and they should avoid waiting until a case becomes clinically urgent before submitting an IFR.
18. On 19 May 2022, the OT team at the Trust telephoned Ms M and discussed her son’s eating. It told her that it planned to discuss his case at a special educational needs and disabilities (SEND) meeting on 23 May to see if a specialist feeding assessment was available for her son. The outcome of this meeting was that he should be considered for specialist input, and this was explained to Ms M on the same day. The Trust told us it became clear at this point that there was an IFR process which it could complete for Ms M’s son to have an assessment by a specialist.
19. We can see the family contacted the Trust on 22 June for an update on the specialist feeding assessment and it explained that it was waiting for the funding for the assessment to be approved. It is not clear from the medical records if it had made an IFR for Ms M’s son to see a feeding specialist at this point.
20. On 23 March 2023 the family contacted the Trust for another update and on 20 April, it held a meeting to discuss Ms M’s son’s case and the possibility of a specialist assessment for his feeding difficulties. It decided to progress with a funding request, so her son could have an assessment with a feeding specialist, and it submitted this request on 22 May, one year after it initially told Ms M about it.
21. It is not clear from the medical records why the Trust told Ms M it was waiting for funding for the feeding assessment to be approved on 22 June 2022 but then rediscussed the possibility of a specialist feeding assessment on 20 April 2023 and submitted the request on 22 May. Therefore, we are unsure why there was a one-year gap between it originally discussing the assessment with her and then making the request.
22. However, based on the evidence we have seen, we consider the Trust did not follow NHS guidance on IFRs when it did not action Ms M’s son’s referral in a timely manner and delayed referring him for a special feeding assessment by one year. This is a failing.
23. In December, Ms M’s son was seen and assessed by the child and adolescent mental health service (CAMHS) at a local hospital who diagnosed him with avoidant/restrictive food intake disorder (ARFID). This condition is when someone avoids certain foods, limits how much they eat, or does both. Beliefs about body weight or body shape are not reasons why people develop ARFID and possible reasons for it include negative feelings over the smell, taste, or texture of certain foods, a response to a past experience with food that was upsetting or not feeling hungry or just a lack of interest in eating.
24. Having seen failings in the Trust’s actions, we have gone on to consider how this failing impacted G and his mother, Ms M. She told us the delay in the Trust referring her son to be seen by a feeding specialist has been distressing for him and the family. She says she felt the Trust failed to keep her updated on the progress of the referral and this meant she felt ignored.
25. She explained how the family have faced shortages of the supplement drink her son uses and this was extremely distressing for them as they struggled to get stock of the drink. The thought of future shortages also worries them. She says although the supplements are useful, they are not giving her son the full benefits he would have if he was eating food, and she is unsure how the delay in him receiving support for his restrictive eating will impact him.
26. Ms M said the support from the eating disorder team since her son’s diagnosis of ARFID, has been truly helpful and although progress is slow, it is still being made. However, she told us this progress could have been significantly further along if the Trust had not unnecessarily delayed the referral for her son to be seen. She explained the delay has caused a significant setback which has negatively impacted her son, and a prompt referral would have eased some of the stress and worry the family experienced.
27. Our adviser explained that ARFID is a relatively new eating disorder, and autistic children are more likely to experience it. They explained that when the eating disorder team first assessed Ms M’s son, his diet was extremely restrictive because he was reliant on one flavour of supplement drinks. They said this put him at high risk of malnutrition and dehydration if that drink was to stop for any reason or if the supplier of these drinks changed the recipe, bottle or straw design, and label design. This is because it is possible he may then reject the drink and then have no source of nutrition or hydration as his diet is so restrictive.
28. We can see evidence in the medical records that G already had signs of dehydration when the eating disorder team first assessed him as he had stopped drinking water in the past year and he had cracked, sore, bleeding lips, and he was agitated.
29. Our adviser explained that a year delay in Ms M’s son getting his diagnosis and support would have likely meant that his thinking and behaviour around food would have become more rigid. It is likely that his anxiety would have also increased, and he would have become more wary and rigid in trying new foods and drinks. This is because he was missing out on food and drink exposure treatment, and this can be challenging for most families without specialist support.
30. They explained that this support, treatment, and education around ARFID includes exposure to food, food chaining, which is a feeding method involving gradual changes to introduce new foods, managing anxiety around mealtimes, understanding sensory needs, and empowering parents with a no pressure approach. Therefore, if the Trust had made an earlier referral, it is likely this support would have been available to him and his family sooner.
31. In February, two months after the eating disorder team started working with him, Ms M’s son started accepting water and juice in a sports bottle (after refusing water for one year). In June, he also started to accept different flavours of the supplement drink rather than refusing them.
32. Our adviser said with ARFID any changes can take very long time (even years), so this is a huge, positive difference and progress, and this support has been missed for over a year because of a delayed referral.
33. The eating disorder team also referred Ms M to an eight-week online training course to learn more about the ARFID, how to manage anxiety around mealtimes, and food chaining and food exposure is also discussed. As this is a peer support group, it is likely that she will have the opportunity to meet other parents experiencing similar situations.
34. Our adviser explained that this is likely to help the family to feel less isolated and more supported which is positive. They explained that an earlier diagnosis of ARFID, and treatment would have led to Ms M and her son getting the additional support they needed much sooner.
35. Based on what we have seen and the clinical advice, we consider the Trust missed opportunities to refer Ms M’s son for a special eating assessment at an earlier opportunity in line with NHS guidance. We think this delay then caused the distress Ms M told us about and meant that both her and her son waited longer than necessary for the support and treatment they need. We consider her son could have made this progress sooner if the Trust had referred him promptly.
36. We imagine the delay is also likely to have prolonged the amount of time Ms M was concerned about shortages of the only flavour of supplement drink her son would accept. We can see he will now accept three flavours which must be a relief for her and alleviate the worry she previously experienced about future shortages of the drink.
37. Our Principles of Remedy say that to put things right, organisations should provide an apology, explanation, and an acknowledgement of responsibility.
38. The Trust told us the process to make a funding request was not as straight forward as it first expected, and it took some time to actually get it started. It explained that G was not actively under its OT service at the time. However, it acknowledged that there was a breakdown in communication and areas of Ms M’s son’s care fell below the standard it expects to deliver. It apologised for this and acknowledged it had not fully documented what happened in Ms M’s son’s medical records.
39. It identified that it needs to take learning from the complaint and has implemented service improvements to ensure it clearly agrees action during meetings and sets clear time frames for this. It also discussed the importance of documentation with the OT team and told us it completed these improvements in September 2024. This action is in line with our Principles and what Ms M wants to achieve. However, we do not consider the Trust has fully reflected on or remedied the distress the year long delay in it completing the funding request had on Ms M and her son.
40. Based on the evidence available and the clinical advice, we think the Trust’s actions fell short of relevant NHS guidance when it missed earlier opportunities to refer Ms M’s son for a specialist feeding assessment. Therefore, we partly uphold this complaint and make recommendations at the end of our report as we can see that something went wrong that has not been fully reflected on or remedied by the Trust.
41. It is understandable that this experience was extremely distressing and worrying for Ms M as she was already concerned about her son’s restrictive diet and shortages of his only nutritional source. The year long delay in the Trust referring her son for specialist help is likely to have added to this distress.
Conclusion 42. Overall, we partly uphold Ms M’s complaint about the Trust. We would like to thank her for taking the time to bring her complaint to us. We do not underestimate how difficult it has been for her to share her concerns with us as it is clear that her experience at the Trust continues to cause her ongoing worry and distress. We hope our findings help to clarify any information she was unsure about.