Tjenesten og MEg | The health service and ME, Ongoing, Sintef FaFo

The newspaper Klassekampen had a great interview today with two of the researchers from this project. Summary in a thread here.

 

Thanks.

I hope I wasn't too bad in my post - I can be.

 

Two researchers from this project has written a thorough opinion piece about the planned Lightning Process study arguing why it's so problematic that the Norwegian Labour and Welfare Administration will be playing a role in requiting patients to the study. This has also been shared in the thread about the LP study

Det er ikke Lightning Process de ME-syke er redde for. Det er NAV
google translation: It's not the Lightning Process that ME patients are afraid of. It's The Norwegian Labour and Welfare Administration

 

This week there was an interpellation to Ingrid Kjerkol, the Norwegian Minister of Care and Health Services about what she will do to better the health care services for ME patients. The background for the interpellation was an article in the newspaper Klassekampen where researchers from this research project said that according to their study, 70% of ME patients deteriorate after a stay at a rehabilitation clinic and more than 90% of the patients deteriorate after work assessment.

As expected the answer from the Minister was rather disappointing and general.

So today the researchers have written an opinion piece in Klasskampen titled "What are you waiting for, Kjerkol?".

Some quotes:

"ME sufferers shall be met with respect, dignity and trust - and with updated knowledge", said the Minister of Health in the Parliament this week. The problem is that on her watch this patient group often feel that's not how they're met.

...

It doesn't appear as well considered to continue with today's practice while we wait for more knowledge and effective treatments. Today's measures are expensive, create waiting lists and they do not work. The process of intervention for ME patients instead appears as a bureaucratic exercise of exhaustion towards a fragile and traumatised patient group.

...

"It's important that we act on the basis of knowledge" the Minister said, but when will she have sufficient knowledge to act? Such political statements are increasingly appearing as an excuse to push problems ahead. Politicians should no longer do that when it comes to ME.

The situation we are researching now is problematic for a welfare state, and there is little indication that it will go away with further procrastination. If there's something obviously lacking in many meetings between the services and the patients, it's the feeling of respect and dignity that the Minister emphasised the importance of".

Opinion piece here (paywalled)

 

The newspaper Dagsavisen has an interview today with researcher Anne Kielland.

A letter from the Directorate of Labor and Welfare emphasises that patients with ME or with drug addiction "require particularly in-depth assessments" when the Norwegian Labour and Welfare Administration (NAV) is assessing disability benefits.

Anne Kielland calls this a formalisation of the stigmatisation of ME patients.

A person from the Directorate of Labor and Welfare says the letter was prepared in collaboration with the Norwegian Directorate of Health and the National Competence Service for CFS/ME.

The article has also included some results from Anne Kielland et al's research project:
(google translated)

• 660 people with CFS / ME and other fatigue diseases participated in the survey from Fafo / Sintef.
  
  
• It is estimated that 474 of them met the strictest diagnostic criteria for CFS / ME. 186 had other fatigue diagnoses.
  
  
• Seven out of ten ME patients answered that they experienced worsening of symptoms after a rehabilitation stay (- despite the fact that most said they were well during the stay and appreciated the social aspect).
  
  
• Among the ME patients, just over nine out of ten stated that they became ill after a Nav-imposed work trial / clarification.
  
  
• Among the entire sample, only seven percent had had a psychiatric diagnosis at some point before they developed a fatigue disease. (Five percent anxiety and depression, others were stress and PTSD.)
  
  
• On the other hand, a total of almost six out of ten had experienced shorter, longer or lasting symptoms of anxiety or depression - as a consequence of the diagnosis. (39 per cent for shorter periods, 14 per cent for longer periods and six per cent had permanent symptoms. Slightly more people with ME had more permanent symptoms, while slightly more of the others experienced more short-term symptoms.)
  
  
• Of the 357 ME patients, who were in a relationship with Nav, up to half were fairly or very dissatisfied with the caseworker's level of knowledge about the disease. Just under a third were fairly or very satisfied with the level of knowledge.
  
  
• From register data, the researchers have calculated that an average of 1,852 Norwegians are diagnosed with CFS / ME per year. This is more than ten years ago and indicates that previous estimates, that between 10,000 and 20,000 people in Norway have ME, are too low.

NAV-ansatte bes om å forskjellsbehandle ME-syke: - Symbolsk brennmerking

google translation: NAV employees are asked to discriminate against ME patients: Symbolic stigmatisation

 

Yesterday's seminar was very interesting and thorough. The researchers presented their research project and findings. Then there were two debates with two politicians, a doctor from the Norwegian Labour and Welfare Administration, the general secretary of The Norwegian Federation of Organisations of Disabled People, the Norwegian ME Association and two of the researchers.

Apart from the doctor from the Labour and Welfare Administration, everyone else seemed to understand the severity of the situation for this patient group and one of the politicians even addressed the elephant in the room, which is the doctors with a biopsychosocial approach.

The research project published a short report with key findings yesterday. It's a PDF in Norwegian, so not possible to auto translate, but here's a summary (my translation). More research articles with these findings are on their way.

Report from a project about ME sufferers meeting with the Norwegian welfare state

The findings are based on a survey with 660 participants and on interviews with 24 families.

They found that people with diagnostic code G93.3 have higher education than average. They believe that might be due to less resourceful people are probably under-represented among those with a diagnose.

Key findings

- Less than half of CCC participants (patients meeting the Canadian Consensus Criteria) had any use of the most common measures/treatments for ME patients in Norway. For rehabilitation stays it's down to 20% and for CBT, 16%

- For most of the approaches the average score for usefulness is negative

- 94% of the CCC participants deteriorated from measures by the Norwegian Labour and Welfare Administration

- The difference between the Canada- and Fukuda participants who benefited from CBT and rehabilitation was statistically significant. The two groups have different experiences of the treatments.

- The participants more often experience recognition, than usefulness, of measures and services. There is also a significant group who don't feel seen and understood.

- The degree of PEM has a clear connection with feeling usefulness and recognition when it comes to most measures and services, and the connection to PEM is mostly statistically significant.

Are the services answering to ME-sufferers' needs?

All the people who were interviewed, spoke of good encounters with the services. But it was not the dominating story.
The bad experiences were about:

1. No treatment
2. No individualised services
3. Help received too late
4. Wrong services.

The Labour and Welfare Administration

9 of 10 in the survey said obligatory work assessment led to deterioration.

Child protection services

1 of 10 of the respondents had been in contact with the Child Protection Services. 70% said the contact made the disease worse.

Children with ME's meeting with the services

10 of the interviewed families had children with ME. Four mechanisms seem typical: non-acceptance of the patient and the disease, lack of relevant services, arrogance, and decisions lacking grounds in knowledge and rules.

The public health care's attitude to the patients seems to be reflected in the way the society, the media, the local community and families are treating the group, and may for some lead to self destructive attempts to hide the illness.

During the interviews they have seen stories where children, despite having been diagnosed with ME, being met with measures that belongs to other diagnoses, or explanatory models for ME that is not recognisable for the children's everyday life.

The report presents 3 cases and says these meetings with the public health care can be described as a form of institutional violence. The meeting with the public health services has partly made the illness worse and partly weakened the ability to better one's own situation.

The carers and family's health and working life

The researchers have looked into fathers, mothers, female and male spouses separately.

- All four groups use their GP more, but for the men it's not statistically significantly more
- All receive more sick pay. Women more than men, and most for mothers of people with G93.3
- Male carers have lower probability for not being unemployed and higher probability for working full time. Female spouses have lower probability for working full time. Female carers/family receive more benefits, male less.

The most severe and their carers

To be carer to someone with severe ME is heavy. They carry a huge responsibility. Their lives become limited. In addition many experience resistance and stigma from the health care.

Summary

Increase of people being diagnosed with ME, dissatisfaction with the services and lack of recognition of the disease.

The findings support previous statements from patient representatives and carers that the services in little degree are fitted to the needs of ME patients.

There is little to support that the measures the services offers today lead to improved quality of life or increased work ability, and sometimes they make the lives worse for patients and for carers.

 

Yes, even harder words could have been used, but it was nice to have a debate where all participants actually are trying to find some solutions or at least better the situation, instead of someone from the psychosomatic side making everything about their beliefs.

And all agreed that it's probably not ideal that a patient group deteriorate from the health services. So that's a start.