Hull University Teaching Hospitals NHS Trust

3. Mr A complains about the diagnosis and treatment he received from the Trust. He says: • the Trust misdiagnosed him with Parkinson’s disease in November 2017 • between November 2017 and March 2019, he was taking medication which he did not need and suffered life changing side effects from.

4. Mr A says he was being treated unnecessarily for a condition he did not have. He says having to tell his family was very distressing.

5. Mr A says the medication he was taking, including antidepressants, caused a number of side effects. This included back pain, anxiety, depression, difficulty sleeping, memory loss, hallucinations, and suicidal thoughts.

6. Mr A says his house had to be redesigned to include a toilet frame, shower handles, a bed frame and he was house bound for nearly two years. Mr A also lost his driving licence.

7. Mr A is seeking compensation.

8. In 2014 the Trust diagnosed Mr A with a tremor (a neurological disorder that causes rhythmic shaking).

9. A doctor at the Trust documented that on 6 November 2017, Mr A reported worsening symptoms of tremors, slow thinking and seeing shadows. It was also documented that Mr A had mild cogwheel rigidity (stiff muscles in the limbs) and slight bradykinesia (slow movements).

10. The doctor said Mr A was showing signs of early Parkinson’s disease and advised him to start taking Sinemet and Madopar (medications to treat Parkinson’s disease). It was also documented his symptoms could be Lewy body dementia (a common type of dementia, caused by protein forming inside the brain cells).

11. A neurologist reported Mr A’s condition was progressively worse during an appointment at the Trust on 16 April 2018. It was documented he had increased anxiety and depression with difficulty getting to sleep. Mr A also reported having hallucinations.

12. The neurologist considered if Mr A had Parkinson’s disease with dementia or Lewy body dementia. The neurologist referred Mr A to a Parkinson’s physiotherapist and a Parkinson’s specialist nurse and prescribed amitriptyline (an antidepressant).

13. The Parkinson’s specialist nurse prescribed mirtazapine and venlafaxine (both antidepressants) as Mr A was not able to take amitriptyline. On examination, Mr A reported minimal slow movements and slow thoughts.

14. During an appointment with a Parkinson’s specialist nurse on 10 October, Mr A reported he was experiencing hallucinations at night. The nurse documented Mr A was taking a sleeping tablet and this was helping. The nurse prescribed an extra dose of Madopar for when Mr A was uncomfortable at night and his medications had worn off.

15. On 29 October, the doctor had a phone discussion with Mr A. Mr A said his symptoms were getting worse and his memory was deteriorating. The doctor arranged for a DAT scan (a diagnostic test which screens how much dopamine is in the brain) to confirm his diagnosis. This was done on 27 November.

16. On 17 December Mr A reported worsening of his tremor and trouble with his short-term memory. The doctor discussed the results of the DAT scan with him. The doctor explained due to his clinical symptoms they expected the DAT scan to have shown some issues, but this was not the case.

17. The doctor arranged a PET scan (this examines the function of the brain) and MRI head scan. Mr A was told to decrease his madopar medication until the Trust had a clearer picture of what was happening.

18. In February 2019 the nurse documented that Mr A had stopped taking his medication and had not noticed a change.

19. A neurologist saw Mr A on 20 March and he reported feeling better than he did three to four months ago. The neurologist told Mr A the results of his DAT scan, MRI and PET scan were normal, and he did not have Parkinson’s disease or dementia. The neurologist explained that fluctuating mood and anxiety levels can look like Parkinson’s and dementia.

Claimed misdiagnosis

23. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the Trust has got something wrong. We do this by comparing what should have happened with what did happen. We have done this and have not seen any indications that something has gone wrong.

24. Mr A said that during his appointment on 6 November 2017, he was asked to do a few exercises and after this, was diagnosed with Parkinson’s disease. Mr A is unhappy with the way he was diagnosed.

25. Mr A was diagnosed based on his clinical presentation and history. The Trust agreed an MRI and a DAT scan can help to diagnose, but these are not routinely offered to patients at the diagnosis stage. The Trust explained, in the early stages of disease development, the changes would have been subtle and performing the scans at that time would not have given the Trust a definitive answer.

26. The Trust said if Mr A had these investigations at the time of diagnosis they would have continued to treat him for Parkinson’s disease, as the diagnosis rests on the clinical presentation.

27. The UK Parkinson’s Disease Society Brain Bank Clinical Diagnostic Criteria guidance says to diagnose Parkinson’s disease the patient must have bradykinesia and at least one other symptom. The symptoms included are muscular rigidity, a tremor measuring at a certain frequency, or poor balance that has not been caused by anything else.

28. Our adviser says Parkinson’s disease is a clinical diagnosis based on the clinical symptoms and story. There are three main symptoms you would expect to see to diagnose Parkinson’s disease. These are bradykinesia, tremor, and rigidity.

29. When the doctor examined Mr A they recorded he had three of the symptoms listed in the national criteria. These were bradykinesia, muscular rigidity and poor balance.

30. We can see from the medical records that Mr A had these symptoms. We think the Trust diagnosed him in line with the national criteria. We have seen no indication the Trust has not acted in line with this guidance.

31. NICE guidance says that the diagnosis of should be reviewed regularly and to reconsider if unusual clinical features develop.

32. We can see that between November 2016 and October 2017, the Trust saw Mr A for follow-up appointments three times, once with a neurologist. We can see the Trust queried the diagnosis and arranged a DAT scan. This showed no issues.

33. The Trust queried Mr A’s diagnosis within 12 months of the diagnosis. The Trust ordered a DAT scan when it assessed his condition was not progressing as it would expect, in line with NICE guidance.

34. Based on this, there is no indication that the Trust did not act in line with the relevant guidance when diagnosing Mr A. We appreciate the life changing effect this had on Mr A and we are not minimising how much this affected him. We understand how disappointing this will be and it is not our intention to cause Mr A any further distress.

Claimed incorrect medication

35. Mr A says the medication he was given had a serious effect on his physical and mental health.

36. In the Trust’s response, it said it was very unusual for patients to get the side effects Mr A described but agreed it was possible. The Trust said in April 2018 Mr A was showing significant symptoms of anxiety and depression and medications were needed to try and improve his clinical condition. This is when Mr A was prescribed amitriptyline and later mirtazapine and venlafaxine.

37. The GMC’s Good Medical Practice says doctors must adequately assess the patient’s condition, taking account of their history and should promptly provide suitable advice, investigation, or treatment where necessary.

38. We have seen no indication the Trust did not act in line with the GMC guidance by prescribing Mr A antidepressants.

39. NICE guidance says to offer levodopa as the first line treatment for Parkinson’s disease. Madopar and Sinemet are branded medications of levodopa.

40. Our adviser says that Madopar is also used for a trial diagnosis for Parkinson’s disease as this medication does not work on most other conditions. Our adviser explains if a patient is taking Madopar and it is working, this can help confirm the diagnosis. And, if a patient is prescribed Madopar and it is not reducing the symptoms, this is when further investigations may be done, as was in Mr A’s case.

41. We understand the effect taking these medications had on Mr A’s physical and mental health. We have not seen anything to suggest the Trust prescribed incorrect medication at the time.

1. We have carefully considered Mr A’s complaint about Hull University Teaching Hospitals NHS Trust (the Trust). We are sorry to learn of Mr A’s concerns about the treatment he received from the Trust, and the distress and ongoing impact his experience had on him.

2. We considered Mr A’s complaint and did not see indications that anything went wrong.