12 February 2014
Held in the Television Interview Room, House of Lords
2pm on 12th Feb 2014
Countess of Mar (Chairman)
Janice Kent (reMEmber)
Bill Kent (reMEmber)
Christine Harrison (BRAME)
Dr Charles Shepherd (ME Association)
Dr Nigel Speight (Paediatrician)
Sue Waddle (ME Research UK)
Mary-Jane Willows (AYME)
Hannah Clifton (Me Trust)
Jane Colby (TYMES Trust)
Keith Harley (TYMES Trust)
1. Apologies had been received from Arlene Wilkie, and Sonya Chowdhury.
(The Chairman was sorry to report the passing of Anne Faulkner of the CFS Research Foundation last November. She had written on behalf of Forward-ME and was pleased that the Trustees wished to continue CFS Research Foundation’s association with the group.)
2. Guest Speaker, Edward Timpson MP, Parliamentary Under Secretary of State for Children and Families
2.1 The Chairman welcomed the Minister who explained he had been a Family Law Practitioner. He outlined the Children and Families Bill. The Chairman expressed concern about the provision for parents to be assessed as “inadequate” and sought an assurance that parents would not be regarded as inadequate just because their children had ME. The Minister said that was certainly not the intention of the Bill and they could address that concern. He asked the Chairman to write to him about it.
2.2 Jane Colby referred to statutory guidance on education in the home and sought an assurance that where a child had been diagnosed with ME home education was permissible. Schools seemed to be unaware of this. The Minister said that the point of the guidance was to make schools aware of such provision and it was a matter of concern to him if they appeared not to be. He confirmed that the guidance was not just for Local Authorities; it was for the guidance of the schools themselves. He wondered whether there had been a breakdown of communication between some LAs and their schools. Jane Colby also pointed out that some schools seemed to be regarding children who were not at school because of ME as simply absent - not sick children who needed education at home. The Minister said he had heard of children with other illnesses to whom this had happened. Consultation was currently taking place around these matters and he invited Jane to take part in that. The Minister confirmed that where there is a clear diagnosis of ME/CFS the schools should accept that education at home was appropriate. He and colleagues would look into this at the DfE.
2.3 Dr Charles Shepherd referred to the need for guidance on the diagnosis and treatment of children with ME/CFS and to make the authorities aware that “child protection” action was not appropriate – as had been made clear in the CMO’s report. The Minister agreed and said that recent guidance had stressed the importance of early intervention rather than setting off on the path that led to child protection. He would speak to colleagues in the Department of Health. Mary-Jane Willows said that however good guidance might be it would not help if teachers did not recognise the condition from which the children were suffering. Jane Colby said that Tymes Trust had so far assisted 115 families of children with ME who had been referred to social services for 'child protection' and Mary-Jane Willows had 90 cases. Janice Kent said she had found teachers helpful but the Community Trusts and Local Authorities were less understanding about the illness and were not providing the services needed.
2.4 The Minister said that in law these people were required to liaise with voluntary organisations about the provision of services, and recommended we take this up with them.
2.5 Dr Nigel Speight confirmed that many parents of children with CFS/ME were being threatened with child protection proceedings and asked what the Minister would do about this. He added that in spite of WHO etc advice many GPs did still not regard ME/CFS as a genuine medical condition. On the first point the Minister requested details in writing. He also pointed out that the DfE now had a Chief Social Worker, one of whose roles was to encourage change of attitudes in Social Workers. On the second point he stressed the need for us to liaise with the Department of Health and the medical profession.
Christine Harrison suggested the Minister speak to Mr Norman Lamb MP at the DH. The Minister said he would.
2.6 The Chairman asked if we could invite the Chief Social Worker to speak to Forward ME, to which the Minister agreed.
2.7 Mary-Jane Willows referred to a child protection case currently under court consideration which could not wait. Urgent intervention was needed. She gave the Minister details. The Minister explained he could not intervene in individual cases but he would pass the details to officials for urgent investigation.
2.8 Sue Waddle said a lot of her working day was taken up with speaking to worried parents whose children were receiving inappropriate treatment and were in fear of child protection proceedings. Children were often required to undergo treatments which made them feel worse, and if they refused to do them child protection action would be started. Jane Colby added that in every case which the TYMES Trust had challenged it had been shown that child protection action was not appropriate. She commented that this was “a crazy statistic”.
2.9 At this point the Minister had to leave. The Chairman thanked him for his time and his attention to our concerns. The Minister asked Forward-ME to write to him on all these issues and confirmed he would speak to Mr Norman Lamb, the Health Minister. Before the Minister left Dr Speight gave him a written summary of the cases.
2.10 Christine Harrison asked whether it might be possible to get all the Ministers concerned together at a meeting. The Chairman said we could try. She would suggest it to Ms Annette Brooke, Chair of the APPG. It was agreed she would ask the Chief Social Worker to come and speak to us. There was some discussion about problems with social workers. The Chairman read from a letter she had received which indicated a number of erroneous ideas on the part of a paediatrician. Dr Speight said that social workers rely on the advice of paediatricians, and that is where the fault seemed to lie in this particular case. The doctors have to get it right in the first place. He suggested that before coming to speak to us the Chief Social Worker familiarise herself with the CMO’s report, particularly in relation to child protection. It had been suggested that child protection should not be considered until an independent medical opinion had been obtained.
3. Minutes of last meeting (15 October 2013) were agreed to be a true record.
4. Matters arising
4.1 Lightning Process. Bill Kent said he had been in contact with Dr Esther Crawley who had said they would not be in a position to make any announcement about the SMILE project until at least September of this year. However since then quite a bit of information had found its way on to the internet. It appeared the feasibility study had been completed and the researchers were now intending to go ahead with a full study.
4.2 Burrswood (item 3.3 of last meeting). The Chairman reported on her visit to Burrswood which she said was a lovely place – very healing and peaceful.Dr Shepherd concurred with this. Hannah Clifton, who is Patient Liaison at Burrswood, said a Kent University study on ME/CFS care at Burrswood would be published soon which she would share with members.
5. Research - UK CFS/ME ResearchCollaborative
5.1 Dr Charles Shepherd reported arrangements for the Collaborative Conference were going well. They wanted patients to take part actively. It would be on Monday and Tuesday of the first week in September and would be in Bristol. He hoped they would be able to invite representatives from all patient groups, and parliamentarians.
5.2 Jane Colby expressed concern about the Collaborative, and its members’ agreement not to criticise the work of other members, particularly in view of the SMILE trial. She stated that The Young ME Sufferers Trust does not approve of or support the SMILE trial, and asked other Forward-ME members about their own position on it. Several members indicated that their organisations did not support LP. Dr Charles Shepherd said his position remained as it had always been. He had successfully reported the LP people to the Trading Standards Authority on several occasions and he remained critical of them. There should be no constraint on people criticising any research (including LP) at the Collaborative Conference. Mary-Jane Willows said she had concerns about LP but research was necessary and the SMILE project had been given ethical approval. Christine Harrison said that when they had been invited to join the Collaborative they had put on their application that BRAME only supported biomedical research. She reminded members that they had previously agreed that professional critique was acceptable whilst personal attacks were not.
6. Research – ME Research UK
6.1 Sue Waddle reported on recent meetings in Belfast and Bristol which had raised awareness very successfully. She also reported that a 32-page overview for the general reader of research funded by MERUK was at the printer. It was a summary of 35 projects, 55 papers and £1million of research over 13 years.
6.2 Sue also reported that a paper had been published on MERUK’s project with Dr Claire Hutchinson at Leicester, bringing the total to three scientific reports from that project. There were some important findings including that ME/CFS patients perform worse than matched controls in visual processing speed and in ability to shift attention, and that eye movement dysfunction is a prominent feature. In the new paper Dr Hutchinson showed that “All patients reported having no history of eye disease, yet 92% had some degree of sensitivity to bright lights, 88% were unable to focus vision and/or attention and 86% experienced eye pain”.
6.3 Sue also mentioned that the first report on MERUK’s project with Dr Jonas Blomberg and colleagues at the University of Uppsala, Sweden, had been published. They had been looking for evidence of persistent or past infection in people with ME/CFS. MERUK had just agreed funding for two more projects – details would be announced later.
6.4 Dr Nigel Speight commented on the Bristol meeting where the guest speaker had been Professor Mark Van Ness from the USA who spoke on the role of exercise for people with ME/CFS. This had to be done cautiously, and it was found that patients could not do as well on day 2 as on day 1; this had potential to be a diagnostic marker. (see: http://www.meresearch.org.uk/news/watershed meeting in Bristol)
6.5 Janice Kent mentioned that one of reMEmber’s members was being treated with Rituximab under the care of Dr Amolak Bansal. She would keep members informed of developments.
7.1 PIP. Christine Harrison reported on the quarterly PIP meeting held on 5th February. She said it had been a long day and there was really little to report. The whole process was taking a much longer time than had been anticipated by all those involved. Claimants were finding it took a long time for forms to arrive, to hear about assessments and subsequent decisions. Basically the whole system appeared to be experiencing difficulties. The people who attended were very vocal and had given a lot of feedback to the DWP PIP team. She had contacted the Minister for the Disabled, Mr M Penning, and was hoping to have a meeting with him over these matters. She advised members to advise claimants to use their personal password when claiming PIP. Claimants should always ask the DWP to confirm the password in order to check that it is the DWP calling before they divulge personal and/or financial information. She had constantly raised the use of a password by claimants as a simple security question and to give reassurance that it was the DWP calling.
7.2 The Chairman referred to a report she had received that day which showed that over 80% of PIP claims received to date had not been processed. It was also claimed that the people making the assessments had been cautioned because they were giving too many favourable decisions. Christine Harrison asked members to let her have any feedback on PIP applications – claimants’ experience within the system; timelines; assessments; decisions, etc..
7.3 WCA. Dr Charles Shepherd referred to the APPG meeting the previous week when the guest speaker had been Mike Penning MP, Minister of State for the Disabled who seemed to have a good understanding of the problems. He had reported this back to the Fluctuating Conditions Group.
7.4 The Chairmen asked all members to write to her about seemingly intractable problems with DWP and she would take these up with Lord Freud.
Dr Charles Shepherd said there had been no response yet to Forward-ME’s letter to NICE. He suggested a PQ. The Chairman said that could be arranged. (NICE published on their website on 17 February 2014 their decision to reject the appeals from ME/CFS organisations and the condition would remain on the ‘static’ list.)
9. Legislation. The Chairman spoke briefly about the Children and Families Bill. Ministers and officials had been most helpful.
10. Any other business
10.1 Jane Colby thanked the Chairman for promoting TYME’s on-line learning programme.
10.2 The Chairman expressed her concerns about misdiagnosis and the high percentage of patients who turned out to have a condition other than ME/CFS.
10.3 The Chairman invited Dr Nigel Speight to speak. He said there had been a lot of comment on the internet about him being invited to look at a Dutch patient. He had now been asked to help in the case of a young patient in Germany who was the subject of the equivalent of “child protection”.
10.4 The Chairman said she could try to get Ministers from the several Departments together, also the Heads of the Royal Colleges. She asked members to let her know what they would like discussed at these meetings. Dr Nigel Speight asked whether members had approached the Children’s Commissioner. Several said they had but had found that approach useless.
The meeting finished at 3.20 pm