A practice in the Blackpool area

5. Mrs L complains about aspects of the care and treatment provided by the Practice between July 2023 and December 2024.

6. Specifically, Mrs L complains the Practice has not supported her in gaining a diagnosis of lupus and has not accurately recorded symptoms on her records. Lupus is a long-term autoimmune condition which often flares up and has a lot of possible symptoms including joint and muscle pain, skin rashes and extreme tiredness.

7. Mrs L says the Practice instead manipulated and gaslit her and purposefully undermined her symptoms.

8. Mrs L says the Practice’s actions have affected her health and wellbeing and have caused her to lose faith in the NHS.

9. Mrs L seeks an acknowledgement of the Practice’s failings towards her and for the Practice to ‘put their hands up and admit gaslighting and manipulation and apologise.’ Mrs L is also seeking service improvements and a financial remedy.

10. Mrs L has had health difficulties for several years including pain, fatigue, brain fog, bruises, swellings and photosensitivity. This has impacted on her quality of life and earnings, and she relies on day-to-day family support.

11. Mrs L has been reviewed by several different medical specialities. She has been diagnosed with a number of medical conditions including fibromyalgia. Fibromyalgia is a long-term condition that causes widespread pain all over the body.

12. Mrs L says she has been seeking a diagnosis of lupus through the NHS and has also had privately funded specialist referrals, appointments and tests in relation to this.

13. There is not one specific test that can say for certain if a person has lupus or not. Anti-nuclear antibody (ANA) blood tests can help diagnose lupus. This is a blood marker that is present in most patients with lupus. A rheumatologist would then consider the test results (blood, urine and other tests), symptoms and medical history to make a diagnosis of lupus. A rheumatologist is a specialist who considers inflammatory conditions and body framework conditions that affect joints, muscles, tendons, ligaments and bones.

14. Mrs L had an ANA blood test in 2020, prior to the events considered in this complaint. This test was negative and the rheumatologist at this time felt Mrs L did not have lupus. A diagnosis of fibromyalgia was instead made. Fibromyalgia is a long-term condition that causes widespread pain all over the body. Other symptoms include increased sensitivity to pain, muscle stiffness, fatigue, low mood and difficulty concentrating.

15. Mrs L reattended the Practice in 2023. She felt her symptoms, which included general aches and pains, numbness in her arms, knees and elbows, and a new skin rash, may indicate possible lupus rather than fibromyalgia, as there can be crossover between the two conditions. The Practice referred Mrs L to rheumatology and dermatology to consider her symptoms further. The outcome of these referrals did not result in a diagnosis of lupus.

16. Mrs L was also referred to a private rheumatologist in June 2024. The private rheumatologist arranged a further ANA blood test, which was negative. The private rheumatologist felt Mrs L’s symptoms did not indicate lupus and were instead in keeping with ongoing fibromyalgia.

17. Mrs L complained to the Practice as she felt it had not appropriately considered her symptoms and made appropriate referrals. She remained unhappy with the Practice’s response and therefore brought her complaint to us.

21. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the organisation 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.

GP appointment on 17 July 2023

22. The Practice appointment records show Mrs L reported general aches and pains, and numbness in her arms, knees and elbows. During the appointment, Mrs L requested NHS referrals to rheumatology, for a consideration of possible lupus, and dermatology, in relation to new symptoms of skin rashes, change in colour and bald patches. It was noted that Mrs L had also been seen privately at the dermatology clinic for photosensitivity.

23. We have considered the GP’s assessment and actions in line with the GMC guidance ‘Good medical practice.’ This says doctors 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

b. promptly provide or arrange suitable advice, investigations or treatment where necessary

c. refer a patient to another practitioner when this serves the patient’s needs.’

24. We can see the GP took a history of Mrs L’s symptoms and noted her view of a suspicion of lupus. Our adviser explains Mrs L’s recorded symptoms at this GP appointment appeared to be related to her diagnosed fibromyalgia. Nevertheless, the Practice listened to Mrs L’s view and took her concerns into account.

25. We consider the Practice’s actions were appropriate, in line with the Lupus UK guidance ‘Lupus and associated conditions.’ This notes that some symptoms of lupus, such as joint pain, fatigue and hair loss, are also commonly seen in other diseases including fibromyalgia.

26. On 24 July 2023, the Practice made three referrals to relevant specialists, based on the symptoms Mrs L reported. These included:

• a referral to rheumatology to consider a possible diagnosis of lupus • a referral to dermatology to consider Mrs L’s new skin related symptoms • a referral to a pain management service as Mrs L was experiencing widespread pain.

27. We therefore see indications to suggest the Practice took Mrs L’s concerns seriously and appropriately referred her onto relevant specialists for further consideration, in line with the GMC guidance.

Rheumatology referral

28. The Practice’s referral was considered by a consultant rheumatologist, who reviewed Mrs L’s history and immunology blood test results. They considered there was nothing concerning for lupus.

29. The consultant rheumatologist contacted the Practice on 12 September 2023 to advise they did not consider Mrs L needed an appointment at the rheumatology clinic. They also explained they did not review patients with fibromyalgia at their clinic.

30. The decision of the consultant rheumatologist is outside of the Practice’s role and responsibilities. We have therefore considered what action the Practice took after it received this information.

31. The GMC guidance ‘Good medical practice’ says doctors must give patients the information they want or need to know in a way they can understand.

32. We can see the Practice telephoned Mrs L on 18 September 2023 to let her know about the consultant rheumatologist’s response. During the call, the Practice supported Mrs L and discussed the way forward and the possibility of her seeking private medical advice.

33. We consider the above actions were in line with the GMC guidance, as the Practice considered Mrs L’s symptoms and views, made appropriate specialist referrals and promptly telephoned Mrs L to update her. We therefore do not see indications of failings in relation to this concern.

Private rheumatology referral

34. Mrs L attended the Practice on 17 June 2024 and discussed her concerns at the waiting times for an NHS endocrinology referral, which had been made in August 2023. This referral had been made to consider Mrs L’s symptoms of aches, pains, and increased urinary output. The referral noted Mrs L had been seen previously by rheumatology, haematology and dermatology.

35. In the appointment of 17 June 2024, Mrs L raised concerns that the NHS waiting list was 60 weeks. She explained she had private health insurance and asked the GP to refer her privately, to a rheumatologist rather than an endocrinologist.

36. The Practice sent a referral to the private rheumatologist on 19 June 2024. This noted the referral was for consideration of possible lupus, and that Mrs L was experiencing numb feet in the mornings, and aches and pains in her knees, arms and elbows.

37. Mrs L was seen by the private rheumatologist on 10 September and a copy of the clinic letter was sent to the Practice. This explained an ANA blood test had been completed and was negative. The private consultant explained to Mrs L that her test results were not in keeping with a diagnosis of lupus and they did not think lupus explained her symptoms.

38. The private consultant discussed Mrs L’s continuing diagnosis of fibromyalgia with her and advised this was still applicable. The private rheumatologist discharged her back to the care of her GP. We do not comment on the private care or diagnosis, as we are considering the role and responsibility of the Practice, and we also only consider NHS funded care.

39. We consider the Practice acted appropriately in line with the GMC guidance ‘Good medical practice’. This says in providing clinical care, doctors must respect the patient’s right to seek a second opinion. We can see the Practice assessed Mrs L’s condition and at her request made a referral for a second opinion to a private consultant.

40. We therefore do not see indications of failings in relation to this concern.

Undermining of symptoms

41. Mrs L says the Practice manipulated and gaslit her and purposefully undermined her symptoms. She raised these concerns with the Practice during the formal complaint process.

42. Mrs L complained to the Practice on 4 July 2024. The Practice responded following a full investigation on 18 November 2024 and 13 December 2024.

43. We can see the Practice apologised to Mrs L for the time it took to investigate every aspect of her complaint and recognised the upset and distress this may have caused.

44. Our ‘Complaint standards’ says complaints should be responded to at the earliest opportunity and issues identified and resolved quickly. In line with our standards, we consider it was appropriate the Practice apologised for the delay.

45. We can see the Practice tried to reassure Mrs L it had listened to her concerns and taken them seriously.

46. The Practice said that it had been attentive to Mrs L, including providing information when requested and dealing with questions and concerns in a timely manner. The Practice expressed empathy to Mrs L about her concerns relating to her past medical treatment.

47. Our ‘Complaint standards’ says people should be listened to and treated with empathy, courtesy and respect.

48. We are unlikely to be able to reach a view about whether the Practice manipulated and gaslit Mrs L, as we were not present. We recognise Mrs L’s perception of the manner of the communication and appreciate how difficult this will have been for her, as she felt the Practice were not supporting her in being diagnosed with lupus.

49. We are reassured to see the Practice took Mrs L’s concerns seriously. We consider this is also demonstrated in the Practice’s actions when Mrs L reported symptoms, and in the referrals made to consider these further. We therefore do not see indications to suggest further action is needed.

Record keeping by the Practice

50. Mrs L says the Practice did not accurately record her symptoms in her records and she feels this contributed to a diagnosis of lupus not being made.

51. The GMC guidance ‘Good medical practice’ says clinical records should include:

• ‘relevant clinical findings • the decisions made and actions agreed, and who is making the decisions and agreeing the actions • the information given to patients • any drugs prescribed or other investigation or treatment • who is making the record and when.’

52. Whilst we are unlikely to be able to say exactly what was discussed in Mrs L’s appointments, our adviser says Mrs L’s Practice records contain appropriate detail and there is no indication information may be missing. The records we have seen are in line with the above GMC guidance.

53. We have also not seen specific examples from Mrs L as to what was not accurately recorded in Mrs L’s records. The records we have seen reflect Mrs L’s account of her symptoms and her concern that she may have lupus. These symptoms and concerns also led to appropriate referrals. Therefore, on the balance of probabilities, we have not seen indications to suggest the records are incorrect.

Summary

54. Mrs L is understandably disappointed not to have the lupus diagnosis she is seeking. This must be especially frustrating while she continues to experience multiple health issues.

55. We recognise how difficult it is for Mrs L to manage her health, medical appointments and tests while continuing to work part-time. This must be especially overwhelming when she is experiencing severe pain and fatigue.

56. We consider the Practice supported Mrs L in seeking a lupus diagnosis through the referrals to NHS rheumatology and dermatology and private rheumatology clinics. The conclusions of these specialists are outside of the role and responsibilities of the Practice.

57. We therefore have not seen indications to suggest failings in the Practice’s care, and we can see the decisions made were in line with the relevant guidance.

Conclusion

58. We recognise the difficult time Mrs L had with her health and how this impacted her and her family. We do not underestimate the impact this has had on all of them.

59. We hope this statement clearly explains our reasoning and we wish Mrs L all the very best for the future.

1. Mrs L complains about the care she received from a GP Practice in the Blackpool area (the Practice). She raises concerns about the lack of support, poor record keeping, and specialist referrals.

2. We are very sorry to hear of the health issues Mrs L has experienced over the past few years and appreciate this will have been very difficult for her.

3. We would like to reassure Mrs L we have not seen indications of failings in the care and support the Practice has provided.

4. We hope our explanation below reassures Mrs L and explains why we consider the Practice followed appropriate guidelines.