Suffolk and North East Essex Integrated Care Board

7. Mr L complains about the advice the CCG (now replaced by the ICB) gave about whether his GP could enter into a shared care agreement with his private gender specialist to provide hormone treatment and monitor blood test results. The CCG told Mr L’s GP that that he should not consider entering into a shared care agreement because it did not support ‘split pathways’ or ‘queue jumping’ by mixing NHS/private care.

8. Mr L says he felt completely crushed by the decision the GP made to decline shared care based on the CCG’s advice, as he realised there would be no further help available to him locally and he was now on his own. He also had to continue paying privately for hormone medications which cost him £97 per month.

9. Mr L wants the ICB to reconsider the local position on entering into shared care agreements with private providers, and to consider the advice it provides to the GP Practice. Mr L also seeks reimbursement of the monthly costs he has paid for hormone treatment from the ICB as well as financial compensation for the distress and inconvenience he has suffered because of the CCG’s decision and advice.

10. Mr L is a 25-year-old transgender man who has gender dysphoria (a sense of unease or dissatisfaction because of a mismatch between a person’s gender identity and their biological sex) since childhood. His GP referred him to an NHS gender identity clinic several years ago and he was placed on the waiting list for a first consultation. Because of the long wait to be seen, Mr L paid to see a gender specialist at a private gender identity clinic, where he was diagnosed with gender dysphoria and began hormone replacement therapy.

11. On 24 May 2021, the private gender specialist asked Mr L’s GP to enter into a shared care agreement to prescribe hormones and carry out regular blood tests. Under shared care, a patient’s GP voluntarily agrees to provide certain ongoing treatment under the advice of their specialist. The specialist sets up a ‘shared care agreement’ with the GP that describes what parts of the patient’s care they are each responsible for, and the ‘route of return’ for the GP to access specialist help and advice, if needed.

12. On 22 June 2021, the GP contacted the CCG for advice about whether they could enter into a shared care agreement with a private provider. On 25 June, the CCG’s chief pharmacist provided their advice.

13. Mr L’s GP declined to agree shared care with his private gender specialist after receiving this advice.

Shared Care advice provided to the GP by the CCG

17. By law, the former CCGs and current ICBs decide how local services are commissioned and funded and set policies determining how those services operate. It is not our role to challenge the CCG’s or ICB’s discretion or to replace its decision-making with our own. Our role is to investigate whether there are any failings in the decision-making process.

18. Mr L’s private specialist asked his GP to agree shared care to prescribe him hormones and to carry out blood tests. Mr L complains his GP declined the request based on advice he took from the CCG.

19. Mr L’s GP emailed the CCG’s deputy chief pharmacist in June 2021 to ask, among other things, whether the CCG allowed shared care with private providers.

20. Four days later, the CCG’s chief pharmacist responded to say that the CCG did ‘not support split pathways or queue jumping by mixing and matching private/NHS pathways’. He explained that it would therefore not be appropriate for Mr L’s GP to agree NHS shared care with a private provider.

21. The CCG’s chief pharmacist said Mr L would need to choose either the NHS or private pathway. If he chose the NHS pathway, he would have to wait the same time as an NHS patient. The CCG’s chief pharmacist said this was to avoid health inequalities, so that those who had privately funded parts of their care did not have an advantage over NHS patients that had not.

22. In a complaint made on Mr L’s behalf, his mother, Mrs A, told the CCG that given the long waiting time for patients to be seen in an NHS gender identity clinic she was ‘disgusted’ at the suggestion that its policy position aimed to prevent ‘health disadvantages’, or that Mr L was ‘queue jumping’ and may get an ‘undue advantage’. Mrs A shared with the CCG a copy of the First NHSE Guidance, which allows shared care.

23. The ICB has not sent us the policy statement or local policy from June 2021 upon which the CCG’s advice was based. It told us that the advice was in line with the 2009 DHSC Guidance and the First NHSE Guidance.

24. We have considered whether the CCG’s advice to Mr L’s GP, based on its policy position on shared care, was in line with relevant clinical standards about shared care, and, if not, whether the CCG has evidenced why its position diverged from the relevant standards.

25. Our Principles say, in order to ‘get it right’, public bodies should have regard to relevant legislation in their decision-making. They must act in accordance with recognised quality standards, established good practice or both. Where they decide to depart from their own guidance, recognised quality standards or established good practice, they should record why.

26. The 2004 DHSC Guidance is a code of conduct for NHS doctors providing private care. It allows patients to change from private to NHS status. It says: ‘patients referred for an NHS service following a private consultation or private treatment should join any NHS waiting list at the same point as if the consultation were an NHS service’.

27. The 2009 DHSC Guidance gives advice on what should happen if patients pay privately for additional services the NHS does not fund. It says, ‘Private and NHS care should be kept as separate as possible’. It also says, ‘Patients should not be unnecessarily subjected to two sets of tests and interventions’. The 2009 DHSC Guidance says private patients:

‘should not be put at any advantage or disadvantage in relation to the NHS care they receive. They are entitled to NHS services on exactly the same basis of clinical need as any other patient’.

28. In addition to the guidance above, The First NHSE Guidance gives advice on prescribing across primary, secondary and tertiary care. It includes principles allowing GPs to prescribe medicines that require oversight from a specialist under a shared care agreement. It says specialist services ‘… may include Mental Health, Tertiary care, Community providers, Private providers, GPs with a specialist interest’.

29. This Guidance says local commissioners (including Area Prescribing Committees and Local Medical Committees) need to agree what specialist treatments and/or medicines may be suitable for shared care. It also says any specialist proposing shared care should ensure an agreement includes advice for the GP about which medicines to prescribe, what monitoring needs to take place, how often medicines should be reviewed, and what actions to take in the event of difficulties.

30. The Second NHSE Guidance, published the same month and year as the First, provides specific advice to GPs on how to respond to requests from online private gender identity clinics to prescribe hormones. The principles set out can be read across to any private gender identity clinic. The Second 2018 Guidance says:

‘Regulatory guidance and NHS England’s current commissioning protocol supports a decision by a GP to accept a request made by a private on-line medical service to assume responsibility for prescribing and for monitoring and testing, in cases where the GP is assured that the recommendation is made by an expert gender specialist working for a provider that offers a safe and effective service.’

31. The First and Second NHSE Guidance both clearly state that GPs must feel competent to take on clinical responsibility for prescribing any specialist medicine under a shared care agreement. This means, even in circumstances where shared care is allowed, a decision about whether to agree shared care is for an individual GP to make on a case-by-case basis.

32. The First NHSE Guidance therefore allows for NHS GPs to agree shared care with private specialists. The Second NHS England Guidance specifically allows for NHS GPs to prescribe hormones and carry out blood tests based on advice from specialists from private gender identity clinics. The CCG’s advice to Mr L’s GP was not in keeping with the relevant clinical standards set out above.

33. The CCG advised Mr L’s GP it did not allow split private and NHS pathways or queue jumping. The rationale it gave in support of its advice at the time is that NHS patients that have received elements of private care should not have any advantage over those that have not. It went on to explain Mr L would need to choose either the NHS or private pathway. If he chose the NHS pathway, he would have to wait the same time as an NHS patient. The CCG said this was to avoid health inequalities, so those who had privately funded parts of their care did not have an advantage over NHS patients that had not.

34. Mr L had already obtained a private diagnosis of gender dysphoria. He was not technically ‘jumping’ an NHS queue or disadvantaging an NHS patient. His private specialist was asking his NHS GP to consider agreeing shared care to provide parts of his ongoing treatment. Expecting Mr L to wait for an NHS appointment when he already had a private diagnosis had the potential of disadvantaging both him and also NHS patients waiting to be seen behind him on the NHS list.

35. Clinical guidance permits circumstances where care may be split between the private and NHS pathways. The 2004 DHSC Guidance allows patients to move from private to NHS care. It says, ‘any patient changing their status after having been provided with private services should not be treated on a different basis to other NHS patients as a result of having previously held private status’.

36. The 2009 DHSC Guidance also says patients should not be unnecessarily subject to two sets of tests or interventions. The ICB told us this only applies to patients that are already on an NHS pathway. The evidence does not support the ICB’s interpretation.

37. The 2009 DHSC Guidance states it should be read in conjunction with the 2004 DHSC Guidance meaning patients moving from private service to NHS should not be treated differently to other NHS patients or unnecessarily subject to two sets of tests or interventions.

38. Further to this, the Second NHS Guidance directly refers to this principle in the 2009 DHSC Guidance when allowing NHS GPs to accept prescribing responsibilities for patients, like Mr L, who are on a private pathway.

39. The 2009 DHSC Guidance is open to interpretation. While this ambiguity has not impacted the outcome on this case, we recognise there is a potential it could lead to inconsistent or flawed decision making in practice. The Second NHS Guidance appears to provide more clarity about how the 2009 DHSC Guidance should be read.

40. The CCG’s advice that Mr L needed to either choose the NHS or private pathway was therefore not in keeping with relevant clinical standards. The CCG does not seem to have provided an appropriate explanation at the time for diverging from that guidance. The evidence suggests Mr L’s private diagnosis could, in principle, have been recognised as valid. He could also, in principle, have moved from private to NHS care.

41. In saying this, we note the Second NHSE Guidance acknowledges, under the commissioning protocol in place at the time, NHS gender identity clinics would not always prescribe until they had assessed and diagnosed a patient themselves. This would have made any move from private to NHS care more complex.

42. Recognising this, the Second NHSE Guidance permits NHS GPs to accept private diagnoses of gender dysphoria in the interim and to prescribe ‘bridging hormones’ under a shared care agreement with private specialists until the patient is seen in the NHS gender identity clinic.

43. In such circumstances, the Second NHS Guidance says GPs need to assure themselves the private specialist is a suitable expert that offers a safe and effective service before agreeing to prescribe. In Mrs A’s complaint to the ICB, she noted that Mr L’s private consultant also worked as the endocrinology lead (hormone specialist) at an NHS-funded gender identity clinic. She considered he had the relevant knowledge and competence to have overseen shared care.

44. The ICB told us the Second 2018 NHSE Guidance only applies to GPs assuming clinical responsibility for prescribing from a private specialist, not those agreeing shared care. We consider it is intended to apply to both scenarios. The guidance refers to GPs ‘passing the results of the monitoring and testing to the private … service’, which implies shared care may be in place. And GPs take on the clinical responsibility for prescribing both when they assume that role and when they agree shared care.

45. Our consideration is also based on the definition of shared care in NHSE first guidance which says, ‘Shared care is a particular form of the transfer of clinical responsibility from a hospital or specialist service to general practice in which prescribing by the GP, or other primary care prescriber, is supported by a shared care agreement.’

46. So, taken together, we find the CCG did not give due regard to the 2004 and 2009 DHSC Guidance or the First and Second NHSE Guidance when it told Mr L’s GP, they could not agree shared care with a private provider. It also did not appropriately explain its decision to diverge from those clinical standards as its reasons for doing so are not supported by what the guidance says. The CCG’s advice was therefore flawed. It is likely Mr L’s GP reached their decision about shared care based on the flawed advice provided by the CCG.

47. In reaching our view, we are aware the decision about whether to enter shared care is a discretionary one for the GP to make. However, we still consider the CCG failed to ‘get it right’ because its blanket policy disallowing shared care with private providers, and consequently, the advice it gave did not give due regard to relevant clinical standards. The CCG also did not provide an appropriate rationale for diverging from those standards at the time. Were it not for those failings, Mr L’s GP would have been equipped with the advice he needed to know whether the CCG accepted shared care, and if it did, whether he felt competent to agree shared care in Mr L’s case.

Impact

48. Mr L says as a result of the CCG’s actions, his mental and physical health were negatively affected whilst waiting for treatment. He felt as though he was unable to continue with his life. Mr L also tells us he considered there was no further help or support for him and he felt on his own. He says he had to continue paying privately for hormone medications which cost him £97 per month.

49. We have found the CCG gave flawed advice to Mr L’s GP that was based on a blanket policy which diverged from guidance with no appropriate explanation. The flawed advice from the CCG resulted in a missed opportunity for the GP to make an informed decision about Mr L’s care provision.

50. We cannot know now what the CCG would have decided had it given due regard to the relevant guidance. Even if it had decided to allow shared care agreements with private providers, and advised Mr L’s GP accordingly, the decision about whether to enter into shared care would still have been a voluntary one for the GP to take.

51. It is therefore not possible to determine the GP’s decision is likely to have been different had they been provided with appropriate advice from the CCG. So, we cannot say it is likely Mr L would not have had to pay privately for hormone medications.

52. That being said, we understand how isolating it must be to feel you can no longer continue with your life because you feel there is no support available. We recognise that the failings and missed opportunity likely compounded the impact on Mr L’s physical and mental health at an already challenging time for him. That is the apparent impact to Mr L.

53. Because we have found failings leading to some, but not all, of the impact Mr L put to us, we partly uphold his complaint about the ICB (which replaced the CCG). We make recommendations below.

1. We have carefully considered Mr L’s complaint about Suffolk and North East Essex Integrated Care board (the ICB). The ICB replaced West Suffolk Clinical Commissioning Group (the CCG) as the organisation responsible for the commissioning of NHS health services in the local area in July 2022.

2. We understand how important it is for patients and their healthcare providers to receive the right information for their individual healthcare. We understand how challenging the events have been for Mr L.

3. We consider the CCG’s advice to Mr L’s GP in June 2021 was based on a blanket policy disallowing shared care with private providers. The CCG’s advice did not give due regard to, or adequately explain the divergence from, relevant clinical standards. This is a failing.

4. In our findings below, we discuss the guidance around shared care, the principles allowing GPs to prescribe medicine that requires oversight from a specialist under a shared care agreement, and how the decision about whether to agree shared care is for an individual GP to make on a case-by-case basis. Although we discuss the guidance and principles on shared care, we should clarify the complaint and findings in this report relate directly to the advice originally given to Mr L’s GP.

5. We consider the CCG’s flawed advice likely impacted the GP’s decision to decline shared care with Mr L’s private provider. We cannot say it is more likely than not Mr L’s GP would have agreed shared care even if the CCG advice had fully considered all relevant information. However, we consider the CCG’s flawed advice compounded Mr L’s uncertainty and distress at an already difficult time for him. We partly uphold Mr L’s complaint about the ICB.

6. We recognise that matters have moved on since Mr L first brought his complaint to us. He now has a GP who has agreed shared care to provide his ongoing support and NHS prescriptions. Based on this, we recommend the ICB writes to Mr L to acknowledge the failings we have identified and to apologise for the impact to him, reviews its policy position, and makes relevant service improvements.

54. We make recommendations in line with our Principles for Remedy, which say public bodies should acknowledge failings, apologise, make amends, and use the opportunity to improve their services. Our Principles say that public bodies should look for continuous improvement, and use lessons learned from complaints to make sure the failings are not repeated.

55. In considering our recommendations, we have also referred to the NHS Complaint Standards. The Complaint Standards support organisations to provide a quicker, simpler and more streamlined complaint handling service. They have a strong focus on: • early resolution by empowered and well-trained people • all staff, particularly senior staff, regularly reviewing what learning can be taken from complaints • how all staff, particularly senior staff, should use this learning to improve services.

56. In line with this we recommend that: • within four weeks of the date of this report, the ICB writes to Mr L (copying us) to acknowledge the failings and to apologise for the impact they had on Mr L • within eight weeks of this report, the ICB reconsiders its policy position based on the guidance we have referred to in our report, and reflects on what it will do to ensure it provides clear explanations for any decisions it makes in future. The ICB should share evidence of this consideration and any service improvements to Mr L and us.

57. The ICB should also send a copy of our final report and the information provided to Mr  to NHS England (england.phso@nhs.net) and the Care Quality Commission (safeguarding@cqc.org.uk).

58. This ends our report.