East Suffolk and North Essex NHS Foundation Trust

3. Mrs E complains the Trust discharged her from its pain management clinic on 15 March 2023 even though she had an issue with another spinal disc bulge. She feels it discharged her because she made a complaint.

4. Mrs E has had chronic pain since 2016 after having spinal surgery, mainly on her left side. The recent disc bulge has caused more pain, this time on her right side into her right buttock and thigh, and caused more lower back pain. She says not being able to access the pain management clinic and pain relief is having a severe impact on her health and life.

5. Mrs E she would like the Trust to reconsider its decision to discharge her.

6. Mrs E has had chronic back pain for over ten years. She had spinal surgery (decompression which involves a cut into the affected area of the spine to release pressure) in 2016. She says this did not improve her pain.

7. Mrs E then had nerve root block injections (injections of a steroid and local anaesthetic around a spinal nerve to reduce pain and inflammation). She also had greater trochanteric (hip) injections to help relieve pain and inflammation in her hip. She was taking over-the-counter pain medication and pain relief gel. She also tried codeine (an opioid used for mild to moderate pain) and amitriptyline (an antidepressant that also treats pain) but stopped these due to side effects. She had long-term physiotherapy which she also says did not relieve the pain.

8. The Trust’s pain management clinic was treating Mrs E from 2018 after a GP referral and discussion at the Trust’s multidisciplinary team meeting (where a group of clinicians from different areas of medicine come together to discuss a case).

9. In 2018, the Trust noted that Mrs E was suitable for injections but decided to carry on with conservative management due to risks. A consultant had discussed the risks of multiple injections and too many steroids in 2017. In April 2018, the Trust directed Mrs E’s GP to start her on nortriptyline (an alternate to amitriptyline). It also directed the GP to consider a small dose of gabapentin or pregabalin (medications used to treat nerve pain).

10. In September 2018, the clinic notes report that Mrs E tried nortriptyline for a few weeks but this did not work. The Trust suggested she needed to try it again for a few weeks and increase the dose every few weeks until reaching an effective amount of around 50mg. It also directed the GP to start her on pregabalin.

11. In 2019, the Trust gave Mrs E another nerve root block injection. At this point she was taking over-the-counter pain medication and nortriptyline at 20mg. It also put her on the waiting list for a caudal epidural (injection of steroid and local anaesthetic at the base of the spine).

12. In 2020, the Trust noted that the injections had improved Mrs E’s pain over her right hip to a limited extent but not on her left-hand side.

13. In 2021, the Trust gave her a greater trochanteric injection to help with her hip pain. She reported that this made her pain worse.

14. In early 2022, Mrs E was taking 20mg of amitriptyline. She reported that pregabalin and gabapentin had not helped and she could not take these due to her work. The Trust again directed the GP to swap her amitriptyline for nortriptyline to see if the dose increase would be tolerated. It offered her in-person ‘understanding your pain’ sessions which she could not attend, so it sent her a YouTube link.

15. In mid-2022, Mrs E still reported considerable pain. She was now also taking 50mg of pregabalin at night but did not want to increase this dose as it made her sleepy. The Trust directed the GP to start her on 30mg of duloxetine (an antidepressant used to treat nerve pain).

16. In late 2022, the Trust wrote again to the GP asking it to start duloxetine as it had not done so already.

17. The Trust then did a magnetic resonance imaging (MRI) scan that showed a minor right-sided disc bulge just touching the right L5 nerve root at L4/L5 level. L4/L5 refers to the specific spinal disc.

18. The Trust discharged Mrs E from its pain clinic on 15 March 2023. It offered for her to go to a pain education course again. It advised the GP to start her on buprenorphine (an opioid used for moderate to severe chronic pain) and how to increase that if it helped her and she had no side effects. Mrs E did not want another greater trochanteric injection due to her experience last time and the Trust says it agreed with this decision. It said the GP could refer her back for another injection if she changed her mind.

22. Before we decide if we should do 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 signs that something has gone wrong.

23. When considering whether the Trust should have discharged Mrs E, we considered what care and treatment it had already given her.

24. Our adviser said the NICE guidelines for chronic primary pain apply here. This guidance recommends:

• offering advice on physical activity • psychological therapy • acupuncture • medication including antidepressants such as amitriptyline.

25. Our adviser explained that the NICE guidelines for sciatica (where the sciatic nerve, which runs from your lower back to your feet, is irritated or compressed) may also apply, although these do not specifically address continuing pain after spinal surgery. This guidance recommends:

• self-management (providing information about low back pain and sciatica and advise on physical activity) • physiotherapy • psychological therapy • non-steroidal anti-inflammatory drugs (NSAIDs) for a short period of time or weak opioids if NSAIDs are not tolerated or ineffective • epidural injections of local anaesthetic • spinal decompression.

26. Mrs E was receiving long-term physiotherapy when she was referred to the Trust. She told us she received back physiotherapy for months which did not help her.

27. Mrs E completed the Trust’s pain management sessions several times. Our adviser said these programmes are made and usually run by psychologists. Mrs E said she did not find these helpful. When it discharged her, the Trust said she could do it again if she wanted to. It also gave Mrs E self-management advice throughout the five years it was treating her.

28. The NICE general guidelines for chronic pain recommend acupuncture. But the NICE guidelines for sciatica and low back pain say to not offer acupuncture for low back pain with or without sciatica. The Trust acted in line with specific guidance by not offering this to Mrs E.

29. The clinical records show that before the Trust treated Mrs E she had tried codeine and amitriptyline but stopped these due to side effects.

30. The Trust also directed her GP to try nortriptyline several times to see if this would work better for Mrs E. Mrs E was also taking over-the-counter medications, such as ibuprofen, when needed. It also directed the GP to try a small dose of gabapentin or pregabalin to help treat nerve pain. Later it also directed the GP to try duloxetine. As we explained above, Mrs E tried these but still had issues with side effects.

31. Mrs E told us she felt she was on too much medication. She struggled with side effects and felt drowsy during the day which affected her work.

32. In her last appointment before the Trust discharged her, it told her GP she could try buprenorphine patches (buprenorphine is an opioid to treat chronic pain and the patches slowly release this) and gave instructions for how this could be increased if she found it helpful. Mrs E told us she was concerned to take opioids, due to side effects and the risk she may become addicted to them, so she did not want to do this.

33. From Mrs E’s account and the clinical records, it does not seem that any of this medication was particularly effective in helping Mrs E’s pain and she experienced side effects.

34. In terms of injections of local anaesthetic, the Trust gave Mrs E a nerve block injection, a greater trochanteric injection and listed her for an epidural. Mrs E reported that these had limited effectiveness. She reported that the greater trochanteric injection she had in September 2021 actually increased her pain, so she was hesitant to have another one. The Trust considered and offered Mrs E injections of local anaesthetic in line with the NICE sciatica guidance.

35. Mrs E had already had spinal decompression surgery in 2016. Sources (for instance, the NHS Inform and Cambridge University Hospitals information mentioned above) vary but generally suggest that between one in three and one in five patients experience continuing symptoms after surgery. We cannot see any suggestion that Mrs E was a candidate for further spinal surgery.

36. Our adviser explained that the treatment the Trust offered Mrs E followed the NICE guidance pathways. They could not see that there was anything else it could have offered. None of the treatments were effective at improving Mrs E’s pain and there were no surgical options for her.

37. The Trust explained there were no further treatment options and discharged her back to her GP in March 2023. The RCOA guidance explains that in this situation patients are discharged back to primary care (the GP).

38. Our adviser explained that once treatment options have been exhausted, discharge is appropriate. They explained that chronic pain is not a condition that needs long-term monitoring and the focus after exhausting treatment options is self-management.

39. Mrs E told us she had new pain in her lower back, right buttock and thigh caused by a disc bulge. She feels this means the Trust should not have discharged her despite what we have seen. She had an MRI scan that showed a minor right-sided disc bulge just touching the right L5 nerve root at L4/L5 level.

40. The NHS guidance on lumbar decompression explains it is surgery to treat pain caused by nerve compression. Our adviser explained that Mrs E’s MRI scan showed a bulge that touches the nerve, but not that the nerve is compressed.

41. They said for nerve compression to be needed at the L4/L5 level, her pain would need to be mainly in her right lower leg below knee level. They explained that this suggests her right-hand side pain is not caused by this new disc bulge.

42. We cannot see any sign that the Trust was wrong to discharge Mrs E at this time. We have seen signs that the Trust had exhausted all treatment options as recommended in guidance and they had not been effective for Mrs E. We also see nothing to say the new disc bulge is causing the additional pain, so this would not affect the Trust’s decision to discharge her.

43. Mrs E told us she is concerned the Trust discharged her because she complained about it and came to us. She complained to the Trust in September 2022 and complained to us about something else in January 2023. We have reviewed all the records the Trust has available and considered what Mrs E says. While she was discharged after she complained, we can see no sign that it was because of her complaint. We have only seen that she was discharged for clinical reasons.

44. We appreciate that Mrs E is in a high level of pain that affects her life greatly and we are sorry that we cannot help her any further.

1. We have carefully considered Mrs E’s complaint about East Suffolk and North Essex NHS Foundation Trust (the Trust). We are sorry Mrs E is in so much pain. We appreciate this pain affects every part of her life and it has been a difficult struggle trying to find ways to make it manageable.

2. We have looked at all the evidence from Mrs E and the Trust and taken advice from a pain management consultant. We have not seen any sign that the Trust was wrong to discharge Mrs E.