Birmingham Community Healthcare NHS Foundation Trust

8. Mrs L complains about aspects of the care and treatment the Trust provided to her son, D, following his diagnosis of MLD in December 2019. She specifically complains D was: • only reviewed on a few occasions by a consultant between his diagnosis and sad death in July 2020 • not appropriately referred to the palliative care team and when he was the referral was rejected • not given an advance care plan.

9. Mrs L says D required care and support and without this, his condition deteriorated and led to his sad death in July 2020. She says because the palliative care referral was not completed, she did not get any respite support to help her care for D. She has told us knowing her son was not cared for appropriately is deeply distressing and the lack of support she and D received caused immense stress and anxiety.

10. Mrs L has requested an acknowledgement of failings, service improvements and a financial remedy as the outcome of her complaint.

11. This very brief background is only intended to place the key events in context, not provide a full account of everything that happened.

12. In December 2019, D and his twin sister were diagnosed with MLD.

13. He was under the joint care of the Inherited Metabolic Disorders (IMD) and neurology teams. Between January and June 2020, he progressed to have feeding difficulties and poor weight gain.

14. D very sadly died on 24 July.

Consultant review

18. Mrs L is concerned D did not receive enough consultant reviews between his diagnosis and his death.

19. We have seen from D’s medical records that his parents met with the IMD and neurology consultants in January 2020, shortly after his diagnosis. In this appointment, staff shared information and discussed treatments. They noted D had symptoms of choking and arranged a Speech and Language Therapy (SALT) referral.

20. In February 2020, the IMD Clinical nurse specialist (CNS) saw D. A metabolic nurse, dietician and SALT therapist were also present.

21. In May 2020, the CNS spoke to Mrs L over the phone, due to COVID-19. They discussed D’s weight and feeding.

22. In June 2020, the Trust arranged a clinic attendance with the metabolic registrar and consultant due to concerns about D’s feeding and weight. In this clinic, they discussed options around tube feeding.

23. We asked the Trust to explain consultant input to D between the clinic attendances in January and June. It told us the multi-disciplinary team (MDT) meeting discussed D before and after each clinic review. It confirmed the neurology and IMD consultants were present at these meetings.

24. Our adviser explained there is no specific guidance on how often a consultant should review a child with D’s condition. They signposted us to GMC guidance which says clinicians must adequately assess the patient, promptly provide or arrange suitable advice or treatment, and refer to other practitioners when needed.

25. Between consultant reviews in January and June, the CNS, dietician and SALT all saw D. The consultants were aware of his condition through discussions at MDT meetings.

26. As soon as the team raised concerns about his weight loss and possible deterioration, the Trust arranged a clinic review with a consultant in June. Our adviser considered this was in line with GMC guidance.

27. We have considered D’s medical records, GMC guidance and our adviser’s comments. We find D was seen enough times by a consultant. The Trust adequately assessed him in line with the GMC guidance. We have found no failing here.

Palliative care

28. Mrs L complains the Trust did not refer D to palliative care, and when a referral was received, the Trust rejected it.

29. In February 2020, the CNS referred D to a hospice. They noted this would help D’s parents access relevant services. Unfortunately, the hospice did not receive this referral, and the Trust is unable to identify why this happened.

30. In June, the community paediatric team referred D to the community palliative care team. They spoke to the IMD team at the Trust who advised them D did not require palliative care input. It said this was because it was providing the required support. The referral was therefore rejected.

31. In July, SALT also referred D to palliative care but unfortunately D had already died when the appointment was arranged.

32. The Trust said its paediatric palliative care is a highly specialist area. It said it accepts referrals for children with life-limiting conditions, who have a need for specialist palliative care such as difficult symptom control. It explained its specialist nurses, such as the IMD CNS, can provide emotional, psychological and social support to patients and families.

33. The Trust explained that as it did not expect D to die imminently, and he did not have complex symptoms, he did not meet criteria for specialist palliative care input.

34. Together for short lives guidance says palliative care for children and young people with life-limiting conditions is an active and total approach to care. It says this begins from the point of diagnosis or recognition, and continues throughout the child’s life to their death.

35. Our adviser explained while D was not at the end of his life in December 2019, a palliative care referral would still have been appropriate. This is because, in line with the guidance above, palliative care should start at the point of diagnosis in children with life-limiting conditions. In this case, we find the Trust should have referred D to palliative care in December 2019.

36. In June, the community team felt D would benefit from palliative care. The Trust rejected this referral.

37. The Trust said it felt D was clinically stable. Our adviser said D was not stable in June. They explained the records show he had lost weight, had difficulty swallowing and SALT had reported he was having difficulty eating. Our adviser explained that together these are signs of deterioration.

38. We have found, in line with the same guidance, that the palliative care team should have seen D in June 2020.

39. We have also considered the fact the Trust did intend to refer D to a hospice in February, and that community paediatrics and SALT also felt palliative care referrals were warranted in June and July.

40. Taking all this into consideration, we find the Trust’s actions were not in line with guidance and it should have referred D to palliative care from the point of diagnosis. It should not have rejected the referral that was made in June.

41. Mrs L has told us how without palliative care input, she and D did not get the help and support they needed and should have received. We are sorry to hear how this contributed to her feeling of being alone at a very difficult time for her and her family. She said that knowing her son did not receive the care he had the right to receive has caused her great distress. We are truly sorry to hear of the upset this has caused Mrs L.

42. We note the Trust said it felt it provided the support Mrs L needed through the IMD team. It did recognise in its complaint response that Mrs L had not received the palliative care support she should have.

43. Our adviser explained the importance of palliative care support delivery being separate to the main medical team. This allows more space for families to process the emotional and social difficulties of a life-limiting illness, away from the appointments focussed on providing treatment and managing medical issues.

44. If the palliative care team had been involved, it is likely that the missing hospice referral would have been recognised, and Mrs L would have received the intended support at an earlier point.

45. We considered how this failing affected Mrs L. Since D’s death, palliative care and hospice referrals were made for his twin sister. Mrs L told us how well supported she has felt. She receives advice and care at home, respite stays, and support networks from other families. She has been able to provide this support to other parents.

46. We find the impact of this failing was Mrs L did not have adequate emotional or social support. This added to her distress of D’s death and impacted her ability to grieve. Since receiving this care with her other child, she says it has been clear how much she missed out on with D’s care. We have made recommendations for the Trust to take actions to put this right later in this report.

Advance care plan

47. Mrs L complains the Trust did not give D an advance care plan (ACP). On the day he died, paramedics asked her about the plan, and she did not have anything to share. An advance care plan is a formal care plan that includes details about the child’s condition and decisions that have been made.

48. The Trust explained it uses the ACP to help document wishes around symptom control, and the use of life-sustaining treatments should deterioration in health or cardiac arrest occur. It explained it usually provides these to children who appear to be in the last year of their life or have complex symptoms. It felt it was not indicated for D.

49. NICE guidance says at section 1.2.14 ‘be aware that all children and young people with life-limiting conditions should have an Advance Care Plan in their medical record, and that this should not be confused with a do-not-attempt-resuscitation order’.

50. We know D had a life-limiting condition and so we find an ACP should have been made in line with this guidance.

51. We cannot say what the ACP would have said at the time, or if it would have changed anything when D died. Our adviser explained the lack of an ACP led to a missed opportunity for the family to consider what they wanted to happen, in a calm and non-time sensitive scenario.

52. The presence of an ACP would have allowed Mrs L to think about and be prepared for what may happen to D. We find this added to the distress Mrs L experienced due to the lack of palliative care support.

53. We are truly sorry to hear of D’s death and of what Mrs L has been through. She tells us how difficult this period was for her and her family and how questioning the care her son received has meant she has not been able to grieve. We hope our work goes in some way to answering her outstanding concerns.

1. We thank Mrs L for bringing her complaint to us. We appreciate this has been an incredibly difficult journey for her and we extend our sincere condolences on the loss of her son, D.

2. Mrs L complains about the care her two-year-old son, D, received after he was diagnosed with metachromatic leukodystrophy (MLD). This is a rare disorder affecting the white matter of the brain, causing progressive loss of physical and mental skills. It is a life-limiting condition.

3. We partly uphold this complaint. We have found the Trust arranged sufficient consultant reviews of D. We have found it failed to refer him to, or facilitate, palliative care. We have also found it failed to arrange an advance care plan for him.

4. This left Mrs L without adequate social, psychological and wellbeing support. There was a missed opportunity for her to be prepared for D’s deterioration and death.

5. We are recommending the Trust write to Mrs L to acknowledge the failings and create an action plan detailing the actions it will take to prevent similar occurrences in the future. We recommend the Trust pay Mrs L £1200 in recognition of the impact the failings have had on her.

6. We cannot begin to understand how difficult it has been for Mrs L and her family since D’s diagnosis and his sad death. Mrs L has told us how worrying this period was for her and she had no support to help her care for a terminally ill child.

7. She has told us of the stress and anxiety she faced caring for her son, and we are truly sorry to hear what she has been through. We hope our work and recommendations help assure her that other families will not have the same experience.

54. We make recommendations in line with our Principles for Remedy which say public bodies should acknowledge failures, apologise, make amends, and use the opportunity to improve their services. The Principles say we aim to ensure the public body puts the complainant back in the position they would have been in had nothing gone wrong. If that is not possible, the public body should compensate them appropriately.

55. Our Principles for Remedy are reflected in the NHS Complaints Standards which say organisations should offer fair remedies to put things right and identify learning and use it to improve services.

What we found 56. Through investigating this complaint, we found: • The Trust failed to refer to palliative care or arrange an advance care plan. This led to a lack of support for Mrs L and D.

What the Trust should do 57. Our Principles for Remedy say organisations should acknowledge poor service and take steps to put things right when this leads to an injustice or hardship.

58. The Trust should write to Mrs L to: • acknowledge the failings we have identified and apologise for the impact • send a copy of this letter to us by 26 March 2026.

59. Our Principles for Remedy say organisations should compensate people appropriately if they cannot return the person affected to the position they would have been in if the poor service had not occurred.

60. To decide on a level of financial remedy, we review similar cases where the person has experienced a similar injustice, along with our severity of injustice scale.

61. Following this review, we recommend the Trust: • pay Mrs L £1200 in recognition of the lack of support she experienced.

• send us evidence it has done this by 26 March 2026.

62. Our Principles for Remedy also say organisations should look for continuous improvement and learn lessons from complaints to make sure poor service is not repeated.

63. We recommend the Trust: • produces an action plan to address the failings relating to palliative care referrals and advance care plans for children with life-limiting conditions • identify the reason(s) for the failing (where possible) • explain the learning taken and set out what it will do differently in the future (or does differently now) • for each action it should state who is/was responsible, timescale for completion, and how it will be/was monitored • share the action plan with us, Mrs L, the Care Quality Commission and NHS England by 21 May 2026.