A practice in the City of Brighton and Hove area

6. Ms R complains that ​South London and Maudsley NHS Foundation Trust (the Trust) ​removed her from the ADHD medication titration waiting list without warning or a valid reason and have failed to provide the medication or care needed for her ADHD.

7. Ms R states she has been left with no treatment for her ADHD and this has negatively affected her mental, and physical health. She also states it has affected her ability to perform daily tasks both in the home and at work and caused her financial hardship.

8. Ms R is seeking an acknowledgement of, and apology for, failings, a reconsideration of her removal from the Trust waiting list for medication titration, and a financial remedy for the anxiety, distress and financial loss suffered.

9. In January 2020 Ms R was referred by a GP to the Trust regarding possible diagnosis of ADHD. She had previously received a private ADHD diagnosis and treatment with a private prescription of lisdexamfetamine (ADHD medication) up to 70mg, which she tolerated poorly and discontinued in September 2021.

10. In April 2022 Ms R was diagnosed by a consultant at the Trust with ADHD. It was recommended she should be prescribed Concerta XL. She was referred for medication titration and advised of the 12-month waiting list for this. Medication titration is the process of gradually adjusting a drug's dosage to achieve the maximum therapeutic benefit (symptom relief) while minimising adverse side effects. The goal is to find the optimal, individualised dose for each patient.

11. Her GP prescribed Concerta XL 18mg once a day, from 29 June, and escitalopram (an antidepressant) 10mg once a day from 30 August 2022.

12. In June Ms R moved address to another Integrated Care Board (ICB) area. This meant she required re-referral to the Trust by her new GP practice. She joined a new GP practice on 5 October 2022.

13. On 9 November she had a telephone consultation with the new GP practice. Ms R explained she had been seen by an NHS provider (the Trust) in April for her ADHD after being seen by a private doctor who prescribed Concerta XL 18mg (an ADHD medication on the amber list) from mid 2020 to mid 2022.

14. The amber list is a list of medicines, as recommended in NICE guideline NG87, that is initially prescribed by a specialist hospital prescriber but with the potential to transfer to primary care.

15. The GP practice agreed to continue to prescribe Concerta XL and escitalopram until Psychiatry UK had assessed her. It also confirmed she required referral for further review as the Trust had failed to provide a shared care agreement for her. Her previous practice did have a shared care agreement with the Trust but this was stopped before Ms R left that practice.

16. On 11 November a pharmacist spoke with the new practice regarding Ms R’s prescription of the controlled drug Concerta XL for her ADHD, and, after speaking to Ms R about the correct dosage, a new prescription was issued.

17. On 13 December her new GP practice referred Ms R to the Trust again.

18. Later in December Ms R contacted the Trust and asked it to confirm it received the new GP practice referral and that she was still on the waitlist for titration. It confirmed the referral was received and she was still on the waitlist.

19. The GP practice contacted Ms R, by email and letter, on 2 and 15 February and 17 March 2023 about monitoring of her ADHD medication. It said in order for her to continue to be prescribed the medication safely, a review of her blood pressure, weight and pulse was needed and asked her to attend the surgery before her next prescription was due. She attended the GP practice on 22 March 2023.

20. In July 2023 Ms R called the Trust and enquired where she was on the waitlist as it was over 12 months since her initial referral for titration. The person at the Trust could not provide and answer and said they would contact the titration team to get the information.

21. She called the Trust over a month later as she had not heard back. The person who answered said they were not sure why she had not heard back. They also said it looked like she was on a waitlist for review and not titration. They said they would ask the titration team to contact her.

22. She contacted the Trust again in September as she had not heard anything. Again, she was told they were unsure of her status and would follow up. She then received an appointment for 9 October.

23. On 9 October she was seen at the Trust. She was told by the consultant the appointment was for review and not titration and so they would not prescribe her medication and titrate it but would make a recommendation. They recommended she should be prescribed methylphenidate (a medication which is available under many brand names, including Concerta) to be prescribed by her GP. The Trust sent a letter to her GP practice following detailing this after the appointment.

24. Ms R attended the GP practice on the 2 February 2024. She discussed the difficulties that she had been having accessing services to titrate her medication and her ongoing frustration with the ‘system’. The record of this appointment indicates Ms R was started on Concerta by her previous GP practice, and this was continued at her new GP practice, although she advised it did not ‘work for her’.

25. It is documented on this occasion, ‘she has been playing around with old medication, and finding that Lisdexamphetamine (Elvanse) works for her when she halves the 50mg tablets- so keen to try a lower dose. Also requesting IR Dexamphetamine to take in the afternoon (she has also tried this before).’

26. She informed the GP that she had found when she halved her long-acting ADHD medication (Concerta XL) dosage taken in the morning and took a low dose short acting medication (escitalopram) in the afternoon as needed, that she felt that it suited her better. The GP prescribed the medications in the doses as requested as these were a lower dose than those prescribed by specialists. The Trust emailed the GP practice on 21 November 2024 for an update on Ms R’s current ADHD treatment and were advised on 3 December 2024 that she was now under the care of Psychiatry UK.

30. Ms R complains the Trust refused to provide her with medication for her ADHD, instead writing to her GP with a recommendation for the medication the GP should prescribe. She states this left her without medication, as her GP did not feel able to prescribe the recommended medication.

31. The Trust said the referral from Ms R’s new GP, received on 14 December 2022, was only for a review of medication and not for initiation and titration of medication.

32. NG87, section 1.7.2, states that all medication for ADHD should only be initiated by a healthcare professional with training and expertise in diagnosing and managing ADHD.

33. Section 1.7.29 further states, ‘After titration and dose stabilisation, prescribing and monitoring of ADHD medication should be carried out under Shared Care Protocol arrangements with primary care.’

34. Shared Care Protocols are structured agreements that facilitate the safe transition of patient care between healthcare providers, typically from specialists to general practitioners. They are clinically focussed and provide the information required to support safe and effective shared care for the specified medicines.

35. Sussex Integrated Care Board (SICB) told us in Sussex, all titration of medication is completed at the acute/consultant level, and any shared care agreement with the GP begins after titration is completed. Therefore, a GP would not be expected to adjust the dose of a medicine for ADHD without a shared care protocol being in place, and direction from the specialist the shared care is with.

36. Records show a consultant at the Trust reviewed Ms R in April 2022 and October 2023. Trust records show during the initial assessment in April 2022, standardised assessment tools were used, and pre-treatment examination and standard monitoring requested. This was in line with NG87, section 1.3, which states:

37. ‘ADHD should only be diagnosed by a specialist psychiatrist, paediatrician or other appropriately qualified healthcare professional with training and expertise in diagnosing ADHD, on the basis of:

• a full clinical and psychosocial assessment of the person; this should include discussion about behaviour and symptoms in the different domains and settings of the person's everyday life and • a full developmental and psychiatric history and • observer reports and assessment of the person's mental state’

38. Section 1.7.11 also states clinicians should, ‘Offer lisdexamfetamine or methylphenidate as first-line pharmacological treatment for adults with ADHD’.

39. Records indicate the consultant acted in accordance with NG87, recommending methylphenidate (Concerta XL) as a first-line treatment, in April 2022.

40. During the subsequent review on 9 October 2023, records show the consultant recommended immediate-release methylphenidate 5mg (Concerta XL) three times daily. Our psychiatric adviser informs us this review was correctly identified as a medication review, rather than initiation and follow up appointments were offered. Our adviser also inform us the clinical recommendations made by the Trust were appropriate and in line with NG87.

41. It is our view both these clinical appointments follow NG87 and no failings have been identified.

42. We note the Trust’s chief pharmacist, on 3 October 2023, advised staff in an internal memo of a supply problem with ADHD medications, including Concerta XL. This advised this was caused by a combination of manufacturing issues and increased global demand, and that other ADHD products remain available, but stocks were not sufficient to meet the increased demand caused by other shortage.

43. It was advised that ‘no new patients may be initiated on products affected by this shortage until the supply issues resolve, (and) patients calling for advice should be informed of current stock situation, and a management plan should be agreed with the patient and prescriber’. The Trust did not advise Ms R or her GP practice of this issue.

44. The Trust told us in response to sustained and unprecedented demand for ADHD and autism services over several years, the National Adult ADHD and Autism Service made the necessary decision to close to new national referrals as of January 2023.

45. The Trust told us the removal of Ms R from the waiting list for titration of medication was determined by policy. It said when a service user moves out of area, their care naturally falls under the jurisdiction of their new ICB. This typically necessitates a new referral from their new GP and a fresh funding application to ensure continuity of care which is provided within the boundaries of the patient's new locality and funding policy.

46. It said as Ms R moved from South West London to Brighton in June 2022, the ICB and GP changed and Ms R would have been discharged from the waiting list and the screening process, as the second referral determined the most appropriate pathway and a review was arranged.

47. The December 2022 referral shows an apparent confusion between ‘titration’ and ‘review’. It is our view the Trust should have clarified this with the referring GP rather than automatically categorising as follow-up only, especially since Ms R already had an established diagnosis of ADHD. Records indicate Ms R was not adequately informed about the change in her referral status until July 2023. It is our view this is a failing.

48. It is noted the Trust complaint response acknowledges and apologies for the failure to send her a letter updating her on whether she had been accepted onto the waiting list.

49. We are aware there are high levels of referrals from GP’s nationwide for ADHD assessment and treatment, and shortages of ADHD medications. We acknowledge this can make individual case reviews challenging, as can the fact there are currently 42 Integrated Care Boards (ICB’s) across the country. We also note ADHD services in different areas of the country can operate differently, which can also cause confusion (Ms R moved from London to Sussex).

50. We acknowledge the Trust cannot correspond with every ICB individually or fully tailor its processes to each distinct set of criteria.

51. The Trust told us it regularly reviews its service and clinical criteria in accordance with NICE guidelines and established professional standards, to ensure consistency, equity, and a high standard of care for all patients, regardless of their location or ICB jurisdiction.

52. The NHS Constitution requires clear communication about treatment decisions and NG87 emphasises continuity of care for ADHD patients.

53. As the GP referral did not explicitly request titration, and ICB funding arrangements required confirmation for out-of-area patients, our psychiatric adviser informs us good practice should have involved direct communication with referring clinicians when the referral intent is unclear.

54. It is our view the Trust should have maintained Ms R's position in the queue for titration of medication, pending clarification of the referral intent, particularly given her previous confirmed diagnosis and assessment. This is a failing.

55. The Trust told us the decision not to prescribe Ms R medication was made by a senior clinical nurse specialist (SCNS). It said it reviewed the latest referral for the medication review pathway. This pathway reviews the existing medication and makes treatment recommendations. This pathway does not prescribe medication.

56. The Trust said it was noted from the latest referral information Ms R was on medication therefore the decision to review and not initiate/titrate medication was based the clinician's evaluation of the referral and supporting information (which included new information about the patient being prescribed ADHD medication) and policy (pathway selection).

57. Practice records indicate Ms R was prescribed (Concerta XL 18mg once a day, from

29 June 2022, and escitalopram 10mg once a day from 30 August 2022). The medication review pathway enables changes of dose and/or medication to be recommended, where clinically appropriate. Recommendations to change existing dosage or medication are made to the referrer to prescribe, whilst the patient remains open and under the supervision of the specialist team.

58. The ICB told us in Sussex, all titration is completed at acute/consultant level and the shared care agreement with the GP surgery begins after titration is completed.

59. The ICB further stated the initiation of medicines used in the management of ADHD needs to be undertaken by a specialist, and the specialist is responsible for titrating the dose to the optimal dose for a patient prior to requesting a GP take over prescribing under the relevant Sussex Shared Care Protocol.

60. The GP referral to the Trust includes the information that Ms R is no longer under the care of the private specialist.

61. The ICB told us GP prescribing should only occur when a Shared Care Protocol is in place with a specialist, be it via private or NHS routes of specialist care. It also informs us a GP would not be expected to adjust the dose of a medicine for ADHD without a Shared Care Protocol being in place and direction from the specialist with whom the Shared Care has been agreed.

62. As shared care agreement was not possible with the private specialist, a referral to an NHS specialist was appropriately made by the GP Practice. Both the ICB and our psychiatric adviser agree this is still the case even when a patient was initiated on ADHD medication by a private specialist previously, as Ms R was.

63. The Sussex Care Board Shared Care Protocol document states:

• ‘Once treatment is optimised, (specialists) complete the shared care documentation and send to patient’s GP practice detailing the diagnosis, current and ongoing dose, any relevant test results and when the next monitoring is required. Include contact information (section 13).

• Prescribe sufficient medication to enable transfer to primary care, including where there are unforeseen delays to transfer of care.

• Conduct the required monitoring in section 8 and communicate the results to primary care. This monitoring, and other responsibilities below, may be carried out by a healthcare professional in primary or secondary care with expertise and training in ADHD, depending on local arrangements.

• Determine the duration of treatment and frequency of review. After each review, advise primary care whether treatment should be continued, confirm the ongoing dose, and whether the ongoing monitoring outlined in section 9 remains appropriate. Trial discontinuations should be managed by the specialist.

• Provide advice to primary care on the management of adverse effects if required’.

64. We acknowledge the Trust’s position Ms R had several different prescribers across different organisations and ICB’s overtime, and given methylphenidate and lisdexamfetamine are controlled drugs, it would not have been clinically safe or appropriate for the Trust to issue a further prescription or to ‘take over’ titration without clear confirmation that other prescribers had stopped.

65. We understand how important it is for someone to be on the right medication to manage their symptoms and that medication is monitored and reviewed appropriately and safely. We also recognise it is important for patients to be clearly informed about treatment decisions, and their rationale, as this not only helps manage any anxiety or frustration but also aids them in making decisions about their care.

66. It is our view the Trust specialist did not meet the standard detailed in the area’s Shared Care Protocol, as detailed above nor The NHS Constitution which requires clear communication about treatment decisions and emphasises continuity of care for ADHD patients. This is because it did not inform Ms R of the shortage of ADHD medication, and the instruction received not to prescribe to new patients. This caused her unnecessary anxiety and frustration.

67. We also find the Trust did meet the standard expected in line with NICE guideline NG87 regarding clinical decision making.

68. It is our view the Trust should not have removed Ms R from the titration waiting list. Removing her from the list delayed her appointment by approximately six months as she should have been seen around April 2023 and she was not seen until the October. As new patients could not be started on ADHD medications it should have informed Ms R and her GP, and liaised with the GP as to the best way forward for Ms R.

69. It is our view this would also have provided the Trust with the opportunity to clarify who was prescribing what and informed its decisions. We consider there was a failing in the provision and monitoring of Ms R’s ADHD medication and there was a missed opportunity to have her ADHD medication fully monitored and titrated by a specialist.

Impact

70. Ms R states that due to the lack of cohesion and clarity as to the proper procedures for the treatment of ADHD she has ‘been left with no treatment’. This has negatively affected her mental, and physical health, her ability to perform daily tasks both in the home and at work and caused her financial hardship.

71. Ms R states she struggles with daily tasks, in her home and work life and has needed to take many days off due to the lack of proper treatment. She further states she has tried to help herself as best she can with ADHD coaching, therapy and other treatments.

72. Ms R states as she is self-employed, any time off she has had to take to deal with her struggles impacts her finances immensely. She states she has lost a lot of money paying for private services.

73. We have seen there was a delay of approximately six months in Ms R having an appointment at the Trust about her ADHD medication likely caused by the removal from the waiting list. We have seen there was a missed opportunity to have her ADHD medication monitored fully by a specialist and instead medication was prescribed by a GP. She was also not clearly informed about the reasoning for decisions taken by the Trust regarding her treatment.

74. As Ms R was receiving ADHD medication from her GP during this period, we are not able to fully link the impact and failings she claims. We understand Ms R herself tried different dosages to find what worked for her symptoms and informed the GP what worked for her. We note Ms R is now receiving care from Psychiatry UK.

75. Having to work out your own medication dosage without support and monitoring from a specialist would have been frustrating for Ms R. We also recognise this may have meant at times her symptoms were not fully managed, and this could affect her ability to carry out some daily tasks and caused anxiety. This could also have been the case if medication had been titrated by a specialist as it can take time to find the correct dosage.

76. We recognise for someone who is self-employed that any time off would have a financial impact on them. We consider the missed opportunity to have appropriately monitored care from a specialist would have been frustrating for Ms R. We can link that the delay of six months may have affected her ADHD symptoms and her ability to complete daily tasks at times causing frustration and distress. We cannot say it was the sole cause for her having time off work.

77. We understand Ms R has sought out her own private treatments while waiting for NHS care. We acknowledge it can be really frustrating when there are long waiting lists when you need the help and support as soon as possible. Unfortunately, it is well known there are long waiting lists of ADHD treatment and care on the NHS. We cannot say Ms R had no other option than to seek private treatment and would not expect the NHS to refund this.

78.   It is our view the decision to remove Ms R from the waiting list for medication initiation and titration and the lack of information provided regarding the reasoning behind this (the shortage of ADHD medications), likely caused her frustration and anxiety.

79. NHS Complaint standards say organisations should look for continuous improvement and learn lessons from complaints to make sure poor service is not repeated.

80. We have seen the Trust has taken steps to learn from Ms R’s complaint and improve its services going forward by making the following service improvements.

• The Trust conducted a comprehensive review of ADHD waiting list procedures, addressing scenarios where patients relocate while on the list and ensuring effective communication with patients and GP services.

• The Trust now has ADHD patient information materials, including ‘Frequently Asked Questions’ and letters to patients and referrers when a patient has moved to a new ICB area have been updated.

• The Trust has updated its operational policy to provide increased clarity.

81. Following the decision by the National Adult ADHD and Autism Service to close to new national referrals as of January 2023 the Trust has also:

• Conducted a comprehensive review and update of the service specification, which now clearly describes that the service is tailored to deliver short to medium-term interventions exclusively for individuals with complex needs.

• Enhanced operational processes to more effectively accommodate the significant volume of referrals currently being managed.

• Patient information also now undergoes review on an annual basis, or earlier if required.

82. The Trust has also informed us its ADHD resources and Supporters guide was reviewed and updated in July 2025, the service specification was formally reviewed in March 2025, and the clinic’s operational policy is presently undergoing review as per their annual cycle.

83. All of these service improvements demonstrate the Trust has taken steps to put things right to prevent similar instances in the future. This is really positive action to take in line with NHS Complaint Standards.

84. We think the service improvement do go some way to put things right. We make recommendations below.

Our recommendations

85. 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.

86. 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.

87. We recommend the Trust should write to Ms R to acknowledge and apologise for the failings identified in this report and the impact on her, within four working weeks of the date of our final report and provide us with evidence of this.

88. To decide on a level of financial remedy, we review similar cases where the person has experienced similar injustice, along with our severity of injustice scale. We recommend within four weeks of our final report the Trust pay Ms R £400 within four working weeks of the date of this final report in recognition of the distress and frustration caused by of the lack of clear communication about the reasoning behind why she was not offered medication.

89. This ends our report

1. Ms R complains that South London and Maudsley NHS Foundation Trust have not provided her with support for her ADHD medication. We understand how challenging it can be to manage ADHD symptoms and the huge impact they can have on someone’s day to day life.

2. We have found failings in the Trust’s removal of Ms R from the waiting list for titration of medication and in the communication with Ms R and her GP. We consider the failings identified caused Ms R frustration and distress and likely had an effect on her management of ADHD symptoms. We understand how Ms R felt the communication received was lacking in detail and certainty.

3. We have seen the Trust has made service improvements and conducted a comprehensive review of the waiting list procedures and produced appropriate patient material.

4. We therefore partly uphold this complaint.

5. We recommend the Trust provide Ms R with a letter which acknowledges, and apologies for, the failings identified in our report and pay Ms R £400 to recognise of the distress and frustration she has experienced.