Imperial College Healthcare NHS Trust

3. Miss A complains about the following aspects of her care and treatment at Imperial College Healthcare (the Trust) between January and August 2023. She complains the Trust:

• in January 2023 incorrectly told her to stop taking her medication (methotrexate) for her rheumatoid arthritis (RA).

• failed to realise this was incorrect sooner and provide treatment (both restarting treatment of methotrexate and or/recommending a timely steroid intervention to control the flare) and delayed telling her when it realised it should not have stopped treatment.

• recommended steroid bridging treatment wrongly without a bone density (DEXA) scan. She says it should have done this due to her osteopenia (low bone density) and chronic anaemia (iron deficiency) • wrongly removed osteopenia and anaemia from her medical records • is unnecessarily reviewing the finding from the August 2023 multi-disciplinary meeting (MDT) which confirmed she had experienced a RA flare and has not provided notes of the review MDT.

4. Miss A says that by stopping her medication her RA has flared up and she has had to take steroids to control it, when it was previously under control. She now suffers from joint pains in her wrist and lost the effectiveness of her methotrexate mono therapy.

5. She says that had treatment restarted sooner the effects would have been reduced and she would not have to take steroids.

6. She says if the Trust had done a DEXA scan prior to prescribing steroids, it may have chosen to not prescribe them due to her increased low bone density. She says the steroids have led to a further increase in low bone density.

7. Removing her osteopenia and anaemia from her records has caused her concern as has reviewing the MDT finding and not providing her with the notes.

8. Miss A would like the Trust to acknowledge its failings, make service improvements to stop this happening again, and provide her with financial remedy of between £3,750 and £12,450.

9. The Trust stopped Miss A's medication in response to a concern about her slightly raised alanine transaminase level (ALT) levels (a liver enzyme). It accepts it should not have stopped this treatment. She was previously on methotrexate 25mg weekly.

Incorrectly told her to suspend disease treatment and failed to restart it sooner

13. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the event(s) complained about had a negative effect which the organisation has not put right. Having done so we have not found any indication that these issues had a negative impact on Miss A.

14. In January 2023 the Trust told Miss A to stop taking the methotrexate, an immune-suppressing medication used to treat RA. The Trust said this was due to her having raised ALT.

15. The Trust has acknowledged that it should not have stopped this treatment as the ALT levels were not high enough to warrant this. As the Trust has already acknowledged the mistake we have not considered the stopping and restarting of the medication further. We have gone on to consider whether that had an impact on Miss A.

16. Miss A says that the stopping this medication for three weeks resulted in her RA worsening. We have discussed this with our adviser and considered the journal article to see if this would have caused the worsening of her condition.

17. The journal article says that a three-week interruption in medication is a short period and that the effect of the drug can persist for between two and four weeks. It is not possible to determine exactly whether this cessation of the medication did cause her condition to worsen. We can say it is unlikely to be the reason based on the case study. Our adviser confirmed it is unlikely the three-week cessation of medication contributed to a significant worsening of Miss A’s condition, and this was just as likely to be coincidence.

18. Whilst we know the Trust stopped the medication unnecessarily, we cannot say it caused her RA to worsen. Whether the Trust should have restarted the medication sooner, we have seen no indication this would have changed the outcome. As we are unable to say that there was an impact from stopping the medication, or not starting it sooner, we will not proceed further with this aspect of the complaint.

Steroid – DEXA scan

19. Miss A says if the Trust had done a DEXA scan prior to prescribing steroids in January 2023, it may have chosen to not prescribe them due to her increased low bone density. She says the steroids have led to a decrease in bone density. This means she has a higher risk of fracture and needs further medications (bisphosphonates) to treat this.

20. We reviewed the NICE guidelines on whether a DEXA scan would have been needed. The guidance says such a scan is not necessarily needed prior to starting short term or “bridging” steroid treatment. It would delay the treatment of arthritis with steroids which tends to be needed for short term benefit and rapid improvement of acute disease symptoms and signs of inflammation.

21. Miss A says her RA was under control prior to January 2023, and the symptoms had just come on so it would be considered acute. The indications for a DEXA in patients are guided by a risk stratification approach. This would involve calculation of a fracture risk assessment tool (FRAX) score to assess if a DEXA scan is necessary.

22. It would be dependent on age, previous fractures and other medical comorbidities. Low bone density can be treated with medical treatment and does not prevent the short-term use of steroids at low dose.

23. High dose steroids are suggested to be doses more than 7.5mg a day for 3 months or longer. The patient had a steroid injection of 120mg depomedrone which was a one off and not repeated so the impact of this on bone health would be negligible.

24. In this instance we cannot see that the Trust acted outside of guidelines by not performing a DEXA scan prior to giving steroid treatment. We will therefore not proceed further with this aspect of the complaint.

Removed osteopenia and anaemia from her records

25. Miss A says the Trust incorrectly removed previous diagnoses of osteopenia (low bone density less serious that osteoporosis) and anaemia (iron deficiency) from her records.

26. Miss A was diagnosed with osteoporosis in August 2024 following a DEXA scan. Our adviser explained the reference to osteopenia is taken from an X-ray report that suggests periarticular osteopenia (localized loss of bone density around a joint, often signalling inflammation and early stages of inflammatory arthritis). This is not a specific diagnosis but a radiological description of X-ray findings. It does not warrant any specific treatment and is often seen in patients with rheumatoid arthritis, which Miss A has.

27. As it is not an actual diagnosis it we have seen no indication of failings in the Trust not referring to it as a diagnosis.

28. Miss A’s haemoglobin (protein in red blood cells that carries oxygen) level has been slightly reduced and she has had low iron levels, iron deficiency anaemia. It was noted in her records in 2021, and it is acknowledged at other times in the clinical notes. It is useful to have it as a previous diagnosis but if not present at the time of writing, would not be needed to be mentioned as an ongoing active diagnosis needing treatment. The indications were that this was a resolved issue for Miss A.

29. Considering her records and the discussion with our adviser, there are no indication that the Trust should mention these conditions as active diagnoses. We will therefore not proceed further with this.

Further review of MDT from August 2023

30. Miss A says the Trust decided to review the results of an MDT meeting from August 2023. She says this this was not needed and caused her concern.

31. GMC Guidelines say:

‘You must provide a good standard of practice and care. If you assess, diagnose or treat patients, you must:

a - adequately assess the patient’s conditions, taking account of their history (including the symptoms and psychological, spiritual, social and cultural factors), their views and values; where necessary, examine the patient’

32. The MDT meeting covered the radiology findings. Our adviser said it is reasonable to review MDT findings and summaries when disease remains active or medication does not appear to be effective requiring a change of treatment. That would be part of adequately assessing the patient’s condition.

33. We have not seen any indication it was incorrect for the Trust to review previous MDT notes and we will not proceed further with this aspect of the complaint.

34. Our decision does not diminish the difficulty Miss A had following her medication being stopped in January 2023. It is clear to us that this has been a difficult time for Miss A, and we recognise the concern she has about the effect on her health and the frustration of not having clear answers about why her condition worsened.

1. We have carefully considered Miss A’s complaint about Imperial College Healthcare NHS Trust (the Trust). We have decided to take no further action on her complaint as we can see no indication that the Trust actions have caused her condition to deteriorate.

2. We recognise that this has been a difficult time for Miss A, and we hope she is able to continue to get the treatment needed to manage her condition effectively.