Minutes of the Meeting held in the Television Interview Room, House of Lords, Tuesday 10 June 2014, 2pm
Present: Countess of Mar (Chairman); Dr Charles Shepherd (MEA); Dr Nigel Speight (Paediatrician); Bill Kent (reMEmber); Jane Colby and Keith Harley (Tymes Trust); Christine Harrison (BRAME); Mary-Jane Willows (AYME) and Dr Paul Worthley (ME Trust)
1. Apologies had been received from Sonya Chowdhury, Sue Waddle, Hannah Clifton, Janice Kent and Arlene Wilkie.
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.
3.1. 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.
4. Minutes of last meeting (12 February 2014) were agreed to be a true record. There were no matters arising, but Christine Harrison pointed out that the Minister, Edward Timpson, had said he would write to the Department of Health. Had he done so, and if so what was the outcome? The Chairman said she would enquire.
5.1. The Chairman said Professor Peter White had been asked by K Geraghty for raw data from the PACE trial and that Prof White had complained to the enquirer’s university about “harassment”. Should we do anything about this? Dr Charles Shepherd said that we had not seen the exchange of e-mails so it was difficult to comment. The Chairman proposed that she would ask to see the e-mails. If necessary we could then take the matter further. This was agreed.
5.2. Dr Charles Shepherd said he had been to the IACFS/ME Conference in San Francisco. 400 researchers and patients were there. It lasted five days and was totally biomedical. “Quite wonderful”. The UK Research Collaborative Conference would be held in Bristol on 1 and 2 September. Charities were welcome but must pay before a date in June shown on the website. The MEA had raised nearly £3,000 to bring over Professor Ian Lipkin (the virus hunter) to speak at the conference.
5.3. Dr Shepherd added that AFME and the MEA were jointly funding a new immune function study with Prof Julia Newton and Professor Stephen Todryk at the University of Northumbria. There was news of a neuro-inflammation study from Japan. He had discussed this with Prof Hugh Perry who thought it was sound. The Biobank project had come to the end of phase 2. There were over 200 samples now stored at the Royal Free Hospital. In phase 3 the samples would be released to researchers who want them. Rituximab; he had been to the Invest in ME Conference. Dr Amolak Bansal and Professor Jonathan Edwards who are involved in the planned clinical trial were there. A preliminary study on immune function is now in progress; when the results are known they will decide what sort of clinical trial is feasible, so the actual trial may not start until 2015. Funding should not be a problem.
5.4. The Chairman asked about the Van Ness exercise study. Dr Shepherd said the results had been replicated. It looked very sound and might eventually be used as a diagnostic tool. It helped to overturn the GET theory.
The Chairman expressed great dissatisfaction with the new guidelines. Christine Harrison said they had been produced without consulting her, in spite of saying that they would. Dr Charles Shepherd said some disturbing things had crept in since he had last been consulted, some months ago. There were several inaccuracies. He and Sonya Chowdhury had been in touch with Annette Brooke about it, and a meeting was to be arranged with the doctor who had sent it. Chapters 2 and 4 were particularly bad. The Chairman said she would write to Lord Freud on behalf of the group expressing our strong disappointment. She asked Charles Shepherd to send her some bullet points. Christine Harrison said she would send some too.
7. Any other business
Dr Charles Shepherd said they were trying to get something out of the Evidence-Based Review, but there was not likely to be much improvement. He saw no point in asking Dr Paul Lichfield to come and speak. The Chairman said the next speaker would be Prof Baker on the NICE Guidelines. Let her have questions by the end of the coming weekend.
There being no further business the meeting ended at 3.30pm