The situation of patients with ME/CFS
The case
In February 2023, the Health and Medical Care Board (HSN) decided to discontinue the care choice specialised rehabilitation for long-term pain and fatigue syndrome and the additional assignment regarding the care of patients with ME/CFS with expiry in 2025 (Appendix 1). The decision stated, among other things, that the care of the patient groups concerned would be secured. Bragée Clinics, the only healthcare provider providing care under the supplementary contract, chose to terminate the contract and operations ended on 15 December 2023.
Care for patients with ME/CFS in Region Stockholm is now offered at the post-infectious clinic at Karolinska University Hospital (KS) and through care in primary care. Patients can be referred to the clinic at KS for investigation of a suspected diagnosis of post-covid and ME/CFS or other post-infectious diseases. The clinic should also, after referral, be able to receive patients with a confirmed diagnosis where there is need, for example, consultation on the design of care or reassessment of care needs. After diagnosis, primary care should have the main responsibility for contact with the patient.1
During the period 15 October 2023 to 15 April 2024, the Patient Board's administration received 57 notifications concerning the situation of patients with ME/CFS (Supplement 2).
In the reports to the administration, patients describe, among other things, a lack of knowledge in primary care, rejection of referrals to specialised care and lack of access to necessary medicines.
Investigation
The investigation in this case consists of complaints received during the period from 15 October 2023 to 15 April 2024 (57 cases in total). The cases deal almost exclusively with the consequences experienced by patients as a result of the reorganisation of care for patients with ME/CFS. It can be noted that throughout 2023, the administration received a total of 16 complaints, and in 2024, up to 15 April, a total of 47 complaints have been received.
The following are three of the cases handled by the administration.
Case 1
A woman with severe ME, who had previously been a patient at the now closed specialist clinic Bragée, described that she had been informed that she and other patients with ME/CFS would be received by the new post-infectious clinic at KS. When she was referred by her GP to the new clinic, the referral was refused on the grounds that the organisation's remit was only to investigate undiagnosed patients. She had therefore been referred back to her health centre, which, according to the woman, did not have sufficient knowledge of the disease.
The woman, who had previously been prescribed symptom-relieving medication, was now unable to access it as the health centre refused to prescribe it, citing the Stockholm Regional Pharmaceutical Committee's statements that there was no evidence for the drug treatment in question.
The woman questioned the political decisions that led to a worsening situation for patients with ME/CFS who are now completely without specialist care and considered that the region had not kept its promise of continued good care for the patient group.
In the statement from the post-infectious clinic at KS, the head of operations confirmed the patient's description of the political decisions made regarding the care of patients with ME/CFS and that these decisions did not correspond to previously conveyed information. The head of operations further described in his response that according to HSN's service statement dated 8 October 2023, KS should run an investigation unit with the task of diagnosing post-infectious diseases and offering consultation to primary care and in some cases initiating treatment. After diagnosis, primary care will have the main responsibility for contact with the patient. This is the decision the clinic has to follow.
The practice manager said that this means that long-term prescription of medicines and extension of previously prescribed medicines and assessment of the appropriateness of such treatment measures based on evidence and proven experience is the responsibility of primary care, but that the practice can act in a consultative capacity towards primary care doctors.
Case 2
In her complaint to the Patient Complaints Board, a woman diagnosed with ME/CFS commented on the fact that the region had closed down specialist care for this patient group and that she had been referred to primary care, where she had been met with poor understanding and treatment. She described that the new clinic at KS for patients with ME/CFS only had a mandate to investigate and that she, who already had a diagnosis, was forced to seek care from her family doctor.
The GP denied her the medication she had previously been prescribed for several years by the closed specialist clinic. This was despite the fact that the health centre had received a referral and personal recommendation from the previous clinic. According to the woman, the doctor had not read the medical records and clearly showed that he was sceptical about the diagnosis. He wrote a certificate for sick leave, but laughed with an intern at previously issued certificates at the specialist clinic. The doctor neither asked how the woman was feeling nor examined her. The woman questioned why care should be provided in primary care, where there is no knowledge of the diagnosis, no time to learn and no opportunity for research, and felt that this way of organising care was an abandonment of a large patient group.
In the statement from the health centre, the director of operations described that it was
unfortunate how patients with ME/CFS were shuffled around in primary care, most recently with the abolition of the choice of care. He hoped that the state of knowledge would improve so that primary care could eventually have clearer guidelines and treatments to follow.
He regretted that the patient was not satisfied with the way the doctor had handled the patient's case, but said that there was currently no evidence for treatment of ME/CFS and that is what primary care has to deal with. The practice manager concluded by saying that it was obviously very sad to hear that the doctor's behaviour made the patient feel worse and that he had spoken to the doctor about it.
Case 3
A woman with ME who had been a patient at the Bragée specialised clinic described how the clinic and the region had referred her to primary care. At the health centre, she was denied help because they thought she should belong to a specialist clinic. However, the health centre could not explain which one. The woman asked her family doctor to communicate with the specialised clinic, which he refused to do as he did not consider it part of his duties. The woman criticised the lack of care and the poor treatment at the health centre.
In a statement obtained from the health centre concerned, the head of the centre regretted the difficulties described by the patient regarding her meetings with the health centre. Unfortunately, the patient was not alone in her experience that collaboration and handover between specialist care and primary care had failed when the clinic at the time was to be closed down. The health centre had drawn attention to this in several cases and raised the issue with the health administration, the Social Insurance Agency and the specialist clinic's management. The operations manager agreed that the handover should have worked much better. Patients who are already frail and ill should not risk being caught in the middle and having to coordinate their own care.
The head of operations also said that the health centre, which has the overall responsibility for coordinating care, must be given better conditions to be able to care for patients with ME, which is a very complex condition about which there is still a lack of knowledge. Primary care still lacks both the resources and the expertise that a specialist clinic can offer. The health centre worked on improving collaboration and after they raised the issue, they could see that it had become much better.
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The administration's comments
The administration cannot draw any conclusions or express any views on how care for patients with ME/CFS should be organised from the investigation in this case.
However, the administration finds it serious and worrying that so many patients with ME/CFS, as far as the administration can judge from the investigation that appears in the case, are not offered the necessary care and treatment for their illness.
In their complaints, the patients express great resignation and frustration about their situation and describe that they are denied care at specialist clinic at KS, are not given access to the necessary symptom-relieving drugs and that primary care does not have sufficient and adequate knowledge to be able to meet the large and complex care needs of the patient group.
The patients' descriptions of their difficult situation are confirmed in the responses received from the primary care, which in a statement to the administration stated, among other things, that primary care lacks sufficient resources and expertise to meet the need for care.
The investigation in the case also indicates that there were shortcomings in how the organisational changes have been communicated to the patients concerned. In previous cases, the Patient Complaints Board has emphasised the importance of patients being informed of organisational changes, and a lack of communication between the healthcare system and patients is associated with risks to patient safety.6
In the light of the patients' descriptions of their serious care situation and taking into account what has emerged in the responses received from the health authorities and primary care, the administration considers it very important that the situation for patients with ME/CFS is recognised and investigated further by the region.
The matter should therefore be handled as a matter of principle.
The administration therefore finds it urgent that HSN submits aN account of how care should be organised in the short and long term to be able to meet the large and complex care needs of this patient group.
In particular, the administration wants a response to what improvement measures
the Board intends to take to ensure that patients in need of specialised care are not referred to primary care.
Impact on patient safety
The proposed measures can be expected to contribute to an improved care situation for patients with ME/CFS and thus have a positive impact on patient safety.
Impacts on gender equality and equity of care
The proposed measures can be expected to contribute to positive impacts on gender equality and equity in care.
Proposal for a decision
The administration of the Patients' Board proposes that the Patients' Board decides the following.
1. The official statement of the case is sent to the Health Board and the Patient Board requests written feedback on measures to ensure that patients with ME/CFS are provided with good and safe care as well as any implemented and planned improvement measures and their impact by 30 September 2024 at the latest.
2. The official statement on the case is sent for information to the Primary Care Board.
3. The official statement on the matter is sent for information to the Board of Karolinska University Hospital.
Pia Bornevi
Head of Administration
