The Walton Centre NHS Foundation Trust

6. Mr X complains about the care and treatment provided by the Walton Centre between 7 January 2021 and 2 November 2023. He complains the Walton Centre:

• failed to provide a rehabilitation programme • failed to organise an IFR for private neuro physiotherapy.

7. As a result, Mr X says he has lost many years of independence and quality of life. He says he remains housebound and in pain as a consequence of not being offered treatment or rehabilitation.

8. Mr X is seeking an apology, acknowledgement of failings, and a financial remedy as an outcome to the complaint.

9. What follows is a brief summary to give the complaint context. We do not include every detail as both parties to the complaint are aware of these.

10. Mr X is a 25 year old man with a history of neurological problems since August 2020. He was aged between 21 and 24 during the events.

11. According to the records, Mr X was treated by a number of NHS Trusts between January 2021 and November 2023. Specifically, Northern Care Alliance NHS Foundation Trust (Northern Care) referred him for physiotherapy at the Walton Centre on two occasions in March 2022 and March 2023.

12. On 7 January 2021, St Helens and Knowsley Teaching Hospitals NHS Trust (St Helens) diagnosed Mr X with functional neurological disorder (FND). St Helens became part of Mersey and West Lancashire Teaching Hospitals NHS Trust on 1 July 2023.

13. On 11 February, Mr X attended the neurology outpatient clinic at St Helens. The clinic reviewed him again on 21 August.

Failure to provide a rehabilitation programme

18. Mr X says the Walton Centre failed to provide a rehabilitation programme between 7 January 2021 and 3 November 2023. In his correspondence with us, Mr X has told us he was studying, travelling and working regularly prior to becoming ill. He says he has lost his independence and quality of life due to the lack of rehabilitation. He says he has remained housebound and in pain since.

19. We were sorry to hear Mr X has suffered a reduction in his quality of life and independence. We understood from his correspondence that he was an active individual prior to these events. We recognise this undoubtedly has been a difficult period of time for him.

What should have happened

20. To address Mr X’s concerns on this matter, we reviewed the complaint file and his relevant medical records. We discussed the records with our adviser, who told us Studies A and B were most relevant. Both guidelines recommend physiotherapy for patients with FND.

21. Study A says physiotherapy has a key role in the multidisciplinary management of patients with functional motor disorders (FMD). It says treatment should address beliefs, self-directed attention and abnormal habitual movement patterns through education, movement retraining and self-management strategies with a positive and non-judgemental context. FMDs are complex. Patients with FMD are heterogeneous (diverse and with many factors of consideration) and treatment needs to reflect this.

22. Study B says careful assessment is needed to triage patients towards the most suitable treatment based on available options. This includes physiotherapy, skills-based psychotherapy and/or multidisciplinary interventions. Study B also notes a heterogeneous approach is needed for patients with FND.

23. During our investigation, the Walton Centre provided us with a copy of its current FND guidelines. The Walton Centre explained these guidelines do not specifically address the unique symptoms presented by Mr X. It told us these guidelines emphasise treatment recommendations and guidance should be provided by clinicians with relevant expertise.

24. The NNAG guidelines also recognise the symptoms, disability, and comorbidities of people with FND are highly heterogenous. A successful pathway needs a range of services available into which people can be referred depending on need and complexity. Clinicians have a responsibility to refer to the most appropriate services, depending on need, avoiding a ‘one size fits all’ approach.

25. According to the pathway map, the secondary care neurological service (which is responsible for diagnosing the patient with FND) should:

• refer the patient onto relevant secondary care services, such as pain/fatigue management services or hospital-based neurotherapy services • refer the patient onto a specialised FND service if there is unacceptable symptom control or high severity, such as specialised physiotherapy/OT • or refer the patient to community care, such as community neurotherapy (OT/PT).

26. Under ‘multidisciplinary FND treatment’, the NHSS guidelines recommends ‘people with FND have access to evidence-based rehabilitation therapies tailored to their symptoms from health professionals who are knowledgeable about FND.’ Regarding physiotherapy specifically, these guidelines say, ‘there is good evidence and strong consensus that therapies need to be FND specific, e.g., physiotherapy.’

27. In summary, the guidelines relied upon by our adviser and the Walton Centre recognise the heterogeneity of FND. Study B recognises treatment is based on what available options there are.

Commissioning

28. In its letter to us dated 23 September 2024, the Walton Centre explained it is not a service commissioned for physiotherapy or rehabilitation services for FND. We then reviewed the Walton Centre’s commissioning contract to confirm this is the case and better understand their position.

29. Under section 3.4, the contract excludes patients who are not registered with a GP/CCG as per its commissioning arrangements. The contract says the Walton Centre is commissioned to provide spoke specialist (Level 2) rehabilitation for patients with Warrington GPs/Clinical Commissioning Groups (CCGs – dissolved in July 2022 and replaced by Integrated Care Systems). It is commissioned to provide community specialist rehabilitation services for patients with Liverpool, South Sefton, Southport, and Formby GPs/CCGs.

30. A spoke specialist is a person in the NHS who works in a ‘hub and spoke’ model of care.

31. In this case, Mr X was registered with a Knowsley GP/CCG between January 2021 and May 2023. He told us he changed GPs in May 2023. His current GP is in the St Helens locality. Based on the commissioning contract, the Walton Centre is not commissioned to provide Mr X with rehabilitation.

32. In consideration of this commissioning arrangement, we cannot expect an organisation to provide a service it is not commissioned or funded for. Based on the commissioning contract, Mr X would be ineligible for specialist rehabilitation at the Walton Centre due to his catchment area. Declining his physiotherapy referrals on this basis is in line with the contract.

33. Our adviser told us the NHSE guidelines are also relevant. The NHSE guidelines outline the scope of specialist rehabilitation for patients with highly complex needs. Our adviser told us, whilst they do not exclude non-neurological conditions, local commissioning arrangements may not be as comprehensive.

34. In this case, the Walton Centre has a spoke specialist (Level 2) rehabilitation unit. Level 2 units predominantly take patients with Category B rehabilitation needs. According to NHSE guidelines, Category B patients have moderate to severe physical, cognitive and/or communicative disabilities.

35. Patient goals may include improved function in activities in and around the home, participation in societal roles, disability management, and improved quality of life. Rehabilitation usually includes at least one of: intervention from between two and four disciplines, a programme typically lasting between one and three months, and specialist facilities and equipment.

36. Our adviser also directed us to the rehabilitation medicine curriculum. Rehabilitation medicine provides specialist medical input to patients with complex rehabilitation needs. The training programme includes both neurological and non-neurological rehabilitation.

37. Section 2.2 outlines the skills expected of consultants in rehabilitation. Specifically, consultants are expected to be ‘able to formulate a full rehabilitation analysis of any clinical problem presented, to include both disease-related and disability-related factors’. Consultants are also expected to be ‘able to set out a rehabilitation plan for any new patient seen with any disability, this plan extending beyond the consultant’s own specific service’.

What did happen

38. The Walton Centre completed a physiotherapy referral at Whiston Hospital for Mr X on 26 August 2021. This action is in line with the NNAG guidelines pathway map.

39. On 2 September, Whiston Hospital then rejected the referral as it did not accept neurological complaints. It recommended Mr X be referred to physiotherapy at the Walton Centre for specialist input.

40. On 6 September, the Walton Centre wrote to Mr X’s GP to explain the referral had been rejected. It requested his GP refer him for community physiotherapy instead. This is in line with NNAG guidelines, which says clinicians have a responsibility to refer to the most appropriate services.

41. In this case, the Walton Centre felt Mr X should be referred to community physiotherapy. As per its commissioning contract, the Walton Centre was unable to provide this service itself.

42. On 9 November, St Helens referred Mr X to the Walton Centre’s FND clinic. The clinic letter indicates there was a 17 to 18 month waiting list for the clinic at that time. We understand this is not an unusual waiting time for patients with functional disorders.

43. On 9 March 2022, Northern Care requested the Trust consider Mr X for rehabilitation. The Walton Centre rejected the referral.

44. On 6 April, Mr X’s GP wrote to the Walton Centre to chase up a physiotherapy appointment. The Walton Centre explained it had declined the referral as it had no inpatient rehabilitation or treatment for patients with functional disorders. This is in line with its commissioning contract.

45. The Walton Centre explained Mr X had several other problems which would not come under the umbrella of FND. Instead, he required outpatient physiotherapy services which were not provided by the Walton Centre. It directed Mr X’s GP to Aintree Hospital’s physiotherapy department.

46. We have seen that the Walton Centre acted in line and compliant with relevant clinical guidelines. It recognised the heterogeneity of Mr X’s symptoms and signposted his GP to an appropriate outpatient physiotherapy service.

47. On 14 July, the Walton Centre declined Mr X’s physiotherapy referral on the basis he had an unclear diagnosis with ongoing investigations. It explained he presented with other problems which did not come under the umbrella of FND. It recommended his GP refer him to an access to exercise programme.

48. On 8 March 2023, a consultant neurologist at Northern Care referred Mr X for neuro rehabilitation at the Walton Centre. The Walton Centre reviewed Mr X. This review is in line with the clinical guidelines. Study B says careful assessment is needed to triage patients towards the most suitable treatment based on available options.

49. Following the review, a consultant neurologist sought advice as to whether Mr X benefitted for structured rehabilitation under the rehabilitation or pain management service. This is in line with Study B.

50. On 12 May, the Walton Centre advised it could not offer Mr X treatment as an inpatient. This is in line with NHSE guidelines. It advised it felt physiotherapy and psychological input could be used in the home environment to try to help Mr X’s symptoms. This is in line with NNAG guidelines.

51. On 9 October, a consultant neurologist reviewed Mr X in the Walton Centre’s specialist regional FND clinic. In their clinic letter, they noted physical therapy could be helpful. They outlined a clear management plan including a recommendation for physiotherapy. This is in line with Studies A and B.

52. The consultant noted the Walton Centre did not have a physiotherapist in the FND service or access to psychology at the time. Mr X’s rehabilitation needs could not be met by the commissioned service at the Trust. This is also documented in the Walton Centre’s complaint response, which notes ‘holistic rehabilitation is not a service we provide’.

53. On 2 November, a consultant in neurological rehabilitation reviewed Mr X with a physiotherapist. The Walton Centre told us this consultant has experience in working with patients with motor disorders. From the clinical advice sought, we understand the most appropriate medical speciality in Mr X’s case would be rehabilitation medicine.

54. The consultant assessed Mr X. They noted he had the underlying physical ability to walk and undertake daily activities. His symptoms, fatigue and deconditioning are listed as barriers. Our adviser told us the assessment is comprehensive.

55. The consultant explained the local rehabilitation network did not have the expertise to treat his symptoms. They offered to explore a suitable chronic fatigue team and request a review for general psychology support. The Walton Centre told us neither of these falls under its commissioned services. On review of the commissioning contract, we note this is the case.

56. On review of these two appointments, our adviser told us there is considerable variation in whether patients with functional disorders are accepted by inpatient or community neuro rehabilitation. It comes down to what is considered specialist rehabilitation and different services have developed their own specific criteria to address who is entitled to it.

57. Ultimately, in this case, the Walton Centre is not commissioned to provide rehabilitation to Mr X. To support this, the Walton Centre told us its rehabilitation team have established experience and expertise in managing patients with functional motor symptoms.

58. For example, persistent impairments of or deficit in motor or cognitive function, communication, and/or swallowing. On the other hand, Mr X presented with mixed functional symptoms, which were variable and dependent on the severity of his dizziness and fatigue.

59. Our adviser stated there is a lack of a clear ‘whole pathway’ commissioning strategy in the area. There is therefore nothing within national guidelines for us to say the Walton Centre’s actions fell so far short to be maladministration. It acted in line with its commissioning contract by declining referrals for it to provide physiotherapy in March, April and July 2022, and May 2023.

60. We acknowledge this is a difficult situation. Ultimately, there is no one in Mr X’s area commissioned to provide the specialist rehabilitation in line with his needs. We truly empathise with Mr X in this regard. We cannot go so far as to say this commissioning issue is due to any maladministration or service failures by the Walton Centre.

IFR for private neuro physiotherapy

61. Mr X says the Walton Centre failed to organise to organise a private funding request for neuro physiotherapy.

62. In its response to the complaint, the Walton Centre says this is not a service it can provide. It signposted Mr X to contact his GP for assistance.

What should have happened

63. We identified and reviewed the relevant clinical letters and discussed them with our adviser. Our understanding is Mr X requested the Walton Centre’s assistance with the IFR between May and November 2023.

64. On the NHS Cheshire and Merseyside ICB’s IFR application form, it says ‘it is the responsibility of the referring clinician to ensure all the appropriate required clinical information is provided’.

65. The form also says ‘it may be appropriate for information to complete those sections of the application coloured ‘Green’ to be completed by the patient’s referring GP. The partially completed form should then accompany any referral to secondary care, or similar, for further completion as relevant’.

66. NHS Cheshire and Merseyside ICB’s website acknowledges funding applications can be made in either primary or secondary care. It also says, ‘applications for funding should ideally be made by the clinician who has the most knowledge of the condition and intervention the request relates to’.

67. NHSE guidelines define specialist rehabilitation more broadly than neurological rehabilitation. Further, they also consider specialty skill expectations to be relevant. This indicates a responsibility to set out a rehabilitation plan which goes beyond that provided by a consultant’s own service.

68. Our adviser stated FND patients are often complex with comorbidities which fall outside purely motor impairments. When specialist FND rehabilitation services are only required to provide rehabilitation for motor impairments, many needs will be unmet. This is the case for Mr X.

69. Our adviser told us other neuroscience subspecialities have responded to complex cross-specialty patient needs by developing the networks needed to ensure comprehensive coverage. Our adviser noted this is a developing area of practice, where rehabilitation medicine consultant involvement in patients with FND varies widely across the country.

What did happen

70. The Walton Centre wrote to Mr X’s GP on 12 May 2023 to advise it could not offer him treatment as an inpatient. This is in line with its commissioning contract as Mr X does not reside in its community specialist rehabilitation service area. The Walton Centre recommended physiotherapy and psychological input in the home environment to help his symptoms. This is in line with Studies A and B, and the NNAG guidelines.

71. On 6 June, Mr X’s GP queried why the Walton Centre felt Mr X would not qualify for rehabilitation on the NHS. They advised they felt the application to secure private funding would be best arranged by Mr X’s specialists. They explained they were unsure which rehabilitation he would benefit from and what was currently being offered.

72. On 16 November, Mr X’s GP wrote to the Walton Centre to request assistance in competing an IFR for a private neurological therapist.

73. We note the IFR application form says it ‘may’ be appropriate for the GP to only complete the ‘green’ sections and that applications should ‘ideally’ be made by those with the most knowledge of the condition. This does not constitute a clear policy for secondary care providers to complete the forms as a requirement.

74. The Walton Centre advised Mr X had undergone detailed assessments by neurology, neurological rehabilitation, and neurosurgery. Based on the assessments, the Walton Centre advised there was no indication for private neuro rehabilitation.

75. The Walton Centre recommended a referral to an NHS chronic fatigue or vestibular rehabilitation service. This is in line with the NNAG guidelines. Clinicians have a responsibility to refer to the most appropriate services.

76. Additionally, the Walton Centre told us Mr X’s barriers were identified as dizziness, autonomic symptoms and fatigue. It therefore felt a neuro physiotherapist would not have the specific skills to help him with symptom management. It told us it completes IFRs when its experts identify any rehabilitation needs for a patient but note the absence of provision for such commissioned services. For outpatient care, the IFR is completed by the primary physician who provides ongoing care in the community.

77. When reviewing this information, our adviser told us there was an opportunity to support primary care when it advised it needed help. However, our adviser noted there are no national guidelines for us to say the Walton Centre should have assisted Mr X’s GP in this circumstance.

78. Owing to the lack of a specific guideline or policy stating a secondary care provider should assist a primary care provider in completing an IFR, we cannot go so far as to say there is a failing.

79. From our adviser’s clinical reasoning, we understand the Walton Centre is able to maintain a position that it does not need to assist the GP in completing the IFR. In this case, the consultants have provided sufficient reasoning to explain why they have declined to assist. This does not constitute a failing in care.

Conclusion

80. We have carefully considered Mr X’s medical records, the information he provided about his care, relevant clinical standards, and advice from our adviser. Having assessed this, we have not seen failings in the Walton Centre’s handling of his physiotherapy referrals and IFR. It acted in line with its own commissioning contract.

81. We appreciate this must be a very challenging and upsetting decision for Mr X. He told us he has lost many years of independence and feels his quality of life has suffered. Mr X also told us he lost his job due to his symptoms. This has understandably impacted his mental health.

82. Since January 2023, Mr X has undergone private neuro physiotherapy sessions. We understand he has seen improvement in his symptoms and outdoor mobility. We are very pleased this is the case. We recognise he was in an unfortunate position due to the commissioning constraints in his local area. We hope our investigation can bring some closure for Mr X and wish him all the best with his future healthcare.

1. We are very sorry to hear of the circumstances of Mr X’s complaint. He has told us this experience has been distressing for him. He has lost his independence as a result of the lack of appropriate rehabilitation. We sincerely hope our final report addresses his concerns about what happened.

2. We have carefully considered Mr X’s complaint about The Walton Centre NHS Foundation Trust (the Walton Centre).

3. Our review has found there are commissioning constraints in place. This has affected the Walton Centre’s ability to provide Mr X rehabilitation in line with relevant clinical guidelines between August 2021 and November 2023. For this reason, we have found no failings in the lack of rehabilitation provided by the Walton Centre. We would not expect an organisation to provide a service it is not commissioned for.

4. We have also found no failings in the Walton Centre’s consideration of Mr X’s individual funding request (IFR) for private neuro physiotherapy. The Walton Centre was not obligated to assist Mr X’s GP in the IFR, as per its commissioning.

5. In careful consideration of all the evidence we have seen, our final report decision is to not uphold Mr X’s complaint. This report fully explains the reasons for our view.