Dr Charles Shepherd comments on the BBC 'File on 4' programme:
Having assisted Matthew Hill with background information on the history and causation of ME/CFS, and the controversies surrounding the PACE trial, I thought he did a really good job in explaining the complexities of the situation that faces far too many parents of children with ME/CFS who are not willing to comply with medical advice regarding the use of CBT and GET that they disagree with.
As a result the parents can easily end up being threatened with completely unwarranted child protection proceedings.
To listen to the programme again >>
http://www.bbc.co.uk/programmes/b08vyly5
Three instant comments posted on the Phoenix Rising internet discussion forum:
- Just listened to the radio 4 programme and sat here in tears. It's so sad how misunderstood this illness is. I thought the tone was really good and sounded hopeful that PACE was on its knees and NICE may be revised. Well done to all involved.
- Very moving. Pro and anti-PACE points of view were represented. But overall, the balance was towards anti. At some point, the mother of a young boy said that he improved thanks to CBT/GET. The journalist then said something like, maybe it could be the natural course of the illness, because children prognosis is better than adults.
- I thought it was a fair, in-depth report. Nice work by the BBC reporter. (And the NHS looks bad by offering no reaction or comment.)
And here are three links to information that was referred to in the programme:
1 Internal correspondence (obtained using an FoI) between NHS England and NICE in relation to a revision of the NICE guideline on ME/CFS:
http://www.meassociation.org.uk/201...eedom-of-information-request-24-october-2016/
2 Minutes of the 2014 meeting at the House of Lords with Mrs Isabelle Trowler - who declined to appear on the programme:
2.Ms Isabelle Trowler (DfE)
2.1 The Chairman welcomed Isabelle Trowler, Chief Social Worker for Families and Children at the Department for Education and Jonathan Bacon, Head of her office.
Ms Trowler explained she had been a children’s Social Worker, mainly in local government, for twenty-five years. Much of her work had been to do with child protection and she had been pressing for change in this area. She had come into her post at DfE recently. The post had been a recommendation of the Monro report (2011). Monro had said that a person with front-line experience was needed. In the event it had been decided there should be two Chief Social Workers, one for children (herself) and another for adults at the Department of Health, with whom she works closely. They spend a lot of time “out and about” talking to social workers and families too.
2.2 Ms Trowler said there had recently been two reviews to do with social work education and training, and she was currently working on the knowledge and skills needed for children’s social work. It appeared that some of those coming out of social work training hadn’t the necessary skills to be effective children’s social workers. A range of measures was being brought in to improve the delivery of statutory social work. The system needed improvement. You could have the most talented social workers but they would not be able to operate effectively in a dysfunctional system. She had spent the last few years leading a “change” programme in a local authority, working with families and CAMHS. She had concerns about “mission creep” and intrusion into families’ lives. She would now be very happy to answer questions.
3.Questions
3.1 Jane Colby asked about Section 47 action. In 1999 she had contributed to a Panorama programme dealing with suspected Munchausen’s Syndrome by proxy. It had become clear there was a skewed picture as far as children with ME were concerned. 120 supposedly were Munchausen’s victims but neither TYMES nor AYME had been able to find this. Something appeared to be going very wrong in leading to these families being suspected. Mary Jane Willows and Dr Nigel Speight agreed with this. The number of families who felt they were being threatened (not necessarily with Section 47 action) was increasing. For example, if a child had been unable to attend school the parents had been told that “proceedings” would be taken – even in cases where a consultant’s letter had been produced confirming the child’s condition. Dr Speight said he liked the term “mission creep” and said it was applicable in many areas – for example where parents were accused of not getting treatment for a child when in fact all they had done was to resist the child being subjected to psychiatric tests.
3.2 The Chairman suggested that every social worker should read the paragraphs in the NICE Guidelines and the CMO’s report which say that the parents of a child with ME have the right to refuse any particular form of treatment. It was agreed that right of refusal is spelled out in many communications but it seems to be ignored in many cases (by health, social work, education and other services). Christine Harrison pointed out that her severely affected daughter, Tanya, had fought hard to get the rights of patients included in the Guideline.
3.3 Ms Trowler said one of the problems was that there was no form of central intelligence in social work to pull together local information about child protection matters. She would like to see details of the 120 cases that had been mentioned. This was a matter which perhaps the College of Social Work should take up. The Chairman said that a few years ago she had written to a Minister supplying details of worried parents who were willing to be interviewed. That was not done, but she was informed the social workers had been interviewed! Could that exercise be completed now? Ms Trowler said that could be considered. It would be necessary to ensure the right methodology was employed.
3.4 Dr Charles Shepherd had brought a copy of the CMO report. He recommended the chapter on children to Ms Trowler. Social services should be aware that medical opinion in this area was divided. As far as he could see each social worker gets a report from just one doctor, and accepts the view of that doctor. He was not clear what education and training social workers received about controversial conditions like ME. Ms Trowler replied that this was a problematical area and that probably very little was said about specific medical conditions in the initial training of social workers. But that could be covered as they went through their careers and could be taken up with the college. Dr Shepherd, Dr Speight and Jane Colby suggested they could contribute to this. Ms Trowler added that she would not wish to see social workers accept just the view of a doctor – they needed to consult more widely than that. Mary Jane Willows pointed out, though, that many people would not overrule a doctor’s decision which often went unchallenged until the matter came to court. She and Jane Colby added that research done in the 1990s and since showed that ME was the biggest cause of sickness in school children. It had been shown that if these children have home tutoring or are taught in small groups they can do well. This had been dealt with during the passage of the Children and Families Bill, and the DofE had issued guidance about it.
3.5 Mary-Jane Willows and Jane Colby asked whether there was any way that social workers could find out how many children had ME/CFS and how many of them had been subject to Child Protection action. Ms Trowler said she doubted that any detailed information was held on this subject. Members asked whether the Dof E might conduct a survey, but Dr Speight suggested looking at a few cases rather than doing a mega-survey. Ms Trowler agreed that case review was the best mechanism; where would be the best place for her to start? The Chairman asked Ms Trowler to get in touch with her in the first place. Ms Trowler added that she would like to examine cases to see if there was evidence of decision-making bias and if so why. Dr Speight suggested that families where children had ME might be seen as easier targets than “tougher” families with multiple social problems. Ms Trowler agreed that social workers should not spend more time with families than was absolutely necessary. There was some evidence of procrastination.
3.6 The Chairman said that people who had been subject to child protection investigation were not allowed to work with children again. Ms Trowler said she was surprised if all child protection subjects were treated in this way although there were obviously some cases where it would be appropriate. Christine Harrison added that it was important that social workers were aware that there can be more than one person, including siblings, in a family with ME/CFS and that while one might show some health improvement, another might not – it was important for them to be judged as individuals. ME/CFS was the same as any other long-term condition.
3.7 At this point Ms Trowler had to leave. The Chairman thanked her and asked if she could come back. Ms Trowler said she would be happy to do so after she had been able to look into the subject further.
Full Minutes: http://www.forward-me.org.uk/10th%20June%202014.htm
3 Summary of the MEA report of patient evidence relating to CBT, GET and Pacing:
http://www.meassociation.org.uk/2015/05/23959/
Recommendation from the MEA that GET should be withdrawn by NICE as a recommended form of treatment for ME/CFS:
Graded Exercise Therapy (GET)
We conclude that GET should be withdrawn with immediate effect as a primary intervention for everyone with ME/CFS.
One of the main factors that led to patients reporting that GET was inappropriate was the very nature of GET itself, especially when it was used on the basis that there is no underlying physical cause for their symptoms, and that patients are basically ill because of inactivity and deconditioning.
A significant number of patients had been given advice on exercise and activity management that was judged harmful with symptoms having become worse or much worse and leading to relapse.
And it is worth noting that, despite current NICE recommendations, a significant number of severe-to-very severe patients were recommended GET by practitioners and/or had taken part in GET courses.
The other major factor contributing to poor outcomes was the incorrect belief held by some practitioners that ME/CFS is a psychological condition leading to erroneous advice that exercise could overcome the illness if only patients would ‘push through’ worsening symptoms.
We recognise that it is impossible for all treatments for a disease to be free from side-effects but, if GET was a licensed medication, we believe the number of people reporting significant adverse effects would lead to a review of its use by regulatory authorities.
As a physical exercise-based therapy, GET may be of benefit to a sub-group who come under the ME/CFS umbrella and are able to tolerate regular and progressive increases in some form of aerobic activity, irrespective of their symptoms. However, identifying a patient who could come within that sub-group is problematic and is not possible at present.
Some patients indicated that they had been on a course which had a gentle approach of graded activity rather than a more robust and structured approach of graded physical exercise. There were some reports that patients were told they should not exercise when they felt too unwell to do so. These led, for some, to an improvement in symptoms or to symptoms remaining unaffected.
However, we conclude that GET, as it is currently being delivered, cannot be regarded as a safe and effective form of treatment for the majority of people with ME/CFS. The fact that many people, including those who consider themselves severely affected, are being referred to specialist services for an intervention that makes them either worse or much worse is clearly unacceptable and in many cases dangerous.
GET should therefore be withdrawn by NICE and from NHS specialist services as a ‘one size fits all’ recommended treatment with immediate effect for everyone who has a diagnosis of ME/CFS. This advice should remain until there are reliable methods for determining which people who come under the ME/CFS umbrella are likely to find that GET is a safe and effective form of management.
Dr Charles Shepherd
Hon Medical Adviser, MEA
June 27th 2017
