Forward ME Group Minutes

Minutes of the Meeting held in the Television Interview Room, House of Lords, Tuesday 14 March 2017, 2.00 pm

Present : Countess of Mar (Chairman); Janice & Bill Kent (reMEmber); Hannah Clifton & Gareth Tucker (ME Trust); Jane Colby (TYMES Trust); Tony Crouch (representing 25% Group and TYMES Trust); Clare Ogden (Action for ME); Dr Charles Shepherd (ME Association); Dr Nigel Speight; and Sue Waddle (ME Research UK)
In Attendance  : Ms Isabelle Trowler & Ms Anya Green (Dept. for Education)

  1. Apologies had been received from Christine Harrison (BRAME), Dr Paul Worthley (ME Trust) and Anita Williams (TYMES Trust)
  2. Ms Isabelle Trowler, Chief Social Worker for Children and Families
    1. The Chairman welcomed Ms Trowler who had last spoken to us three years before. Members introduced themselves to her.
    2. Ms Trowler said that a lot had happened over those three years which she would summarise. There had been a review of social services in 2011 which had decided there should be Chief Social Workers (CSWs) and she was the CSW in England for Children and Families. The CSW for Adults was within the Department of Health but she was in the Department for Education. A document “Putting Children First” had been published the previous summer. It covers all the work they are doing. They had developed a more specialist route into Social Work, and an increasing number of recruits were specialising in children and families although the majority were still generic social workers.
    3. They had published a number of statements about acquiring knowledge and skills and they had introduced national standards. Most of the new people coming in were comfortable with these arrangements but there were some problems with the longer established SWs, so they were having a big “push” in these areas. They would be setting up a Regulator in social work to see that their aims are achieved.
    4. As well as those measures to improve the standards of people they had introduced changes to systems. They had invested heavily in getting LAs to improve their children and families services. They were encouraging individual procedures for individual clients rather than putting them all through the same pathway. They were doing evaluations of the different programmes LAs were now following and getting LAs to share best practice. They were setting up a number of “Work Centres” where best practice could be shared – looking at how best to engage with families and make best use of resources, for example.
    5. An important initiative was the reviewing of Serious Case Reviews across England. A number of these had been done at great cost, and they were seriously considering how effective they had been. They were also looking into the question of providing social care outside of LAs. This was being tried out in three places currently. She referred to the Mental Health Review being undertaken at the Department of Health. She could provide details if required. The Chairman asked for this to be provided. She stressed that all the measures she had mentioned were just the beginning of a very long haul.
  3. Discussion and questions
    1. The Chairman asked whether there was a problem with the retention of staff. One of the complaints we get is that social workers are constantly changing. Ms Trowler agreed this was so, and it had been for a long time. The position varied from one place to another. Things seemed to be better in places where the social workers felt they were achieving good results. The DfE was looking into the reasons for the variations. In some places there was greater reliance on agency staff.
    2. Dr Charles Shepherd referred to our last meeting with Ms Trowler when he and Dr Speight both referred to lack of understanding of ME on the part of social workers. He had recently given a talk on adult and child protection issues, and one of the points that had been raised was that SWs were still not getting training on the particular problems of people with ME/CFS. He realised they couldn’t be expected to know about all the illnesses that could affect clients, but ME/CFS was, after all, the commonest cause of long term sick absence from school.
    3. Ms Trowler said this was why accreditation was so important. They had just been through an 18-month period of testing what the examination system should be for SWs. They were considering giving the SWs scenarios and putting the question “what would you do?” A family where a child had ME could be one of those scenarios.
    4. Janice Kent asked how much liaison SWs had with schools. She had found that teachers were very interested in helping children who had ME. Ms Trowler said they should have a lot of contact with teachers. Often it should be their first port of call.
    5. Dr Nigel Speight said that a lot of his work (and Jane Colby’s) was to do with child protection cases. Currently he was dealing with six families who were under threat of court action. He remembered that at the last meeting Ms Trowler had referred to a new definition of F.I.I. which was leading to “mission creep”. He was hearing doctors saying things like “yes, we accept your child has ME but what about F.I.I.?” It was a major responsibility of the medical profession to get this right but they, social workers and others were not doing so. He related some anecdotes to back this up. There was a tendency for SWs to say “we are here for child protection and we will put that machinery into effect” instead of seeing a family with a sick child. SWs should be encouraged to keep an open mind and not automatically make judgements of the kind he had described. Tony Crouch made the same point.
    6. Mrs Trowler said it was important for SWs to use professional judgement in each case and not make generalised assumptions. She was concerned that the number of children coming to the attention of social service departments had remained fairly static for a long time but the number of child protection cases was rocketing. She asked whether Forward-ME might like to give a presentation on this subject to a meeting of Principal Social Workers and perhaps produce some guidance as a result of this. Members agreed. The Chairman commented that this could be very productive. She had corresponded with SWs about these matters on a number of occasions and they usually revised their approach as a result. A meeting and a handout could be arranged.
    7. Sue Waddle asked whether there was a resource, such as a Social Worker-dedicated website, which SWs could access to get this information. Ms Trowler said there was not. Sue added that SWs were known to consult CAMHS (Child and Adolescent Mental Health Services) about children with ME, but ME was not a mental health condition. Ms Trowler said there were some resources SWs could access including the British Society of Social Workers (BASW). Sue referred to the possible meeting with Principal Social Workers and asked how the information given at that meeting would reach all Social Workers across the country. Ms Trowler said it would be passed on by the PSWs.
    8. Ms Trowler asked why children with ME were being referred to CAMHS if it is not a mental health condition. Members explained it was to do with incorrect assumptions – by doctors among others – that children with ME had mental health problems. The Chairman asked whether someone from CAMHS could come and speak to Forward-ME and discuss this problem. Ms Trowler said she would investigate and report back to us.
    9. Jane Colby referred to prejudices about ME, such as assumptions about the reasons for absence from school or lack of socialising. People needed to understand that these are due to the child’s illness with ME. Ms Trowler said a good way to counter these assumptions is to use “case examples”.  How could we get that process going? Tony Crouch said we could supply plenty of case examples. Jane added that Child Protection Plans often included measures that would make children worse such as Graded Exercise Therapy (GET). The Chairman referred to the NICE Guideline which states that such activities should only be put in place with the agreement of the parents. Ms Trowler agreed that this should be taken as the starting point.
    10. Janice Kent referred to a case where the involvement of CAHMS had probably saved the child’s life. The psychiatrist saw how physically ill the child was and got her straight into hospital. We needed more doctors who could recognise such problems and act immediately. The case examples could be the starting point.
    11. Isabelle Trowler asked whether the problems outlined were found in one particular region (or several). Members pointed out that they were encountered everywhere. Tony Crouch added that they could be worse in places that were in special measures because the services did not have the time to consider the children’s needs properly. Ms Trowler acknowledged this could be the case. Jane Colby said there were three things that made these problems so bad; the trauma for the family and the child, the exacerbation of the illness and the lack of suitable education – trying to force children back to school instead of considering the alternatives.
    12. The Chairman related a case of a child who became very ill following HPV vaccination (partly paralysed). Child protection action was now being taken against that child and her three siblings. Clare Ogden asked to what extent there was sharing of best practice. Ms Trowler said a small group of LAs (those who had good inspection results) were managing their own areas well and sharing their experience with others. She repeated that the Principal Social Workers were the key people to approach and that Forward-ME should come to one of their meetings. She would write to the Chairman setting out a plan for such a meeting.
    13. Dr Nigel Speight repeated that if doctors get it right there is never a problem; unfortunately they often get it wrong. Ms Trowler added that it was essential for doctors and social workers to “get it right” but there was often doubt and disagreement – she gave “non-accidental injury” as an example – they need to be very confident about their diagnoses. She concluded by saying that the involvement of people like Forward-ME could be very powerful because in these matters we are the experts.
    14. The Chairman thanked Ms Trowler for an enjoyable and informative presentation, and said we looked forward to meeting her again.
  4. Minutes of meeting held on 7th February 2017
    The minutes were agreed to be a true record.
  5. Matters arising
    1. Royal College of General Practitioners (item 9.4 of last meeting). The Chairman announced she had a response from the RCGP and was arranging a meeting date. She had also managed to get a meeting with Lord Henley (DWP Minister in Hof L) about PIP assessments (item 8 of last meeting) along with Helen Brownlee of the 25% Group.
    2. GMC speaker (item 2 of last meeting). Clare Ogden said AfME would be submitting a response to the Medical Licensing Assessment consultation highlighted by Professor Curran, and asked if anyone would like to collaborate on the response. The Chairman asked Clare to let us know what points AFME would be putting forward.
  6. PACE
    1. Dr Charles Shepherd drew attention to an open letter he had sent round containing, at the last count, 101 signatures – mostly clinicians or researchers. He thought that Psychological Medicine was unlikely to budge. Where should we go next in that case? What about a PQ to the Minister with responsibility for scientific research.
    2. Jane Colby asked if we could buy some space for an article in a national newspaper. Charles commented that it would cost thousands. Tony Crouch suggested a letter to The Times. Other possible publications were discussed. The Chairman said that she would table a motion for a short debate in the House after the State Opening in May.
  7. DWP
    Training document produced by Maximus Centre for Health and Disability Accessment: CFS/ME – Guidelines for teh Disability Analyst – Version XIV. Dr Charles Shepherd said he had prepared a four-page paper which he had sent to Sonya Chowdhury of AfME. He understood it had gone to Dr Alistair Miller for final signing off, but he had heard nothing further. Having confirmed that he had updated this version of the programme, Dr Miller replied to Charles’s paper as follows:
    “I am not sure I can comment further. Most of Charles’s comments seem to relate to wording and do not really alter the main message of this document.”
  8. Research
    1. MEGA project. Clare Ogden said the funding bid to Wellcome had been unsuccessful. Further action for securing funding was under discussion. She would let us know the outcome.
    2. Sue Waddle said MERUK was funding three new projects, one in Newcastle, one in Canada and another in Australia. She was aware there were problems getting funding for such projects in this country but she did not know the details. One of these was to do with Rituximab. The researcher thought he had found a way to distinguish between patients who would benefit from it and those who might be harmed. Janice Kent commented she had read that where the patient had not received previous cytotoxic chemotherapy there was less likelihood of harm being done with Rituximab.
  9. Select Health Committee
    The Chairman said she had met Jeremy Quin MP to discuss our submission to them. He agreed it needed to be broadened.
  10. Any other business
    1. AfME and AYME. The Chairman referred to an e-mail sent round that morning by Clare Ogden. Not all members had seen it yet. Clare explained that AYME would be closing and AFME would launch a children’s service. It was important to note that AfME did not recommend types of medical treatment, but rather provided information from published research and patient surveys to allow people affected by ME to make informed decisions. AfME’s medical advisers would remain unchanged.
    2.  Dr Charles Shepherd asked the Chairman if she had been able to contact Professor Jenny Higham at St George’s Hospital regarding medical education as had been discussed at the previous meeting. The Chairman said she had not. She would write to her.
    3. Dr Nigel Speight announced a primer on paediatric ME would be available on the internet. He was among the contributors.

The Chairman thanked all members Date of next meeting to be announced. The meeting ended at 3.20 pm


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