FORWARD-ME

 

Minutes of the meeting held in Residence 1

House of Lords

Wednesday 28 February 2018 starting 2pm

Present:

Countess of Mar (Chairman)

Dr Charles Shepherd (ME Association)

Bill Kent (reMEmber)

Janice Kent (reMEmber)

Tony Crouch (representing 25% Group)

Christine Harrison (BRAME)

Sue Waddle (MERUK)

Jonathan Davies (MERUK)

Dr Willy Weir

Anne Innes (Welfare Rights Adviser)

 

Dr Ian Gargan, ( CMO Capita Health and Wellbeing)

Ms Katrina Brooks (Capita)

1.    Apologies had been received from  Tanya Harrison (BRAME), Hannah Clifton, Dr Paul Worthley and Dr Gareth Tuckwell (ME Trust), Clare Ogden (AFME), Jane Colby and Anita Williams (TYMES), Sarah Reed (ME Action) and Dr Nigel Speight.

 

2.    Dr Ian Gargan and Ms Katrina Brooks

2.1  The Chairman welcomed back  Dr Gargan who outlined changes at Capita since we last met. ME/CFS was now under its own category at Capita. His role as Chief Medical Officer was threefold; 1 - to ensure no harm occurs to claimants during the assessment process, 2- to ensure there was objective assessment of disability, and 3 – the training and development of the assessors.

2.2  They had assessed over 11,000 cases of ME/CFS. He had examined a good many and agreed that the quality of assessment needed to improve. The assessments go through an audit process to double-check on quality. They struggle with ME assessments more than any other condition. One area they were considering was the value of “further evidence”. The DWP was looking at how claimants and their families could be made aware of what sort of further evidence they could use. There had been too much reliance on doctors; carers, families, community nurses etc could also produce valuable evidence. He also commented that claimants often presented for assessment in a very anxious state, having received about five different pieces of correspondence.

2.3  Katrina Brooks explained some of the training material they had been working on (eg about communicating with patients) and would e-mail copies to Forward-ME.

2.4  Dr Gargan said they had engaged with a number of stakeholders in the past year (for example on cystic fibrosis) and would continue to do so, including ME/CFS. They could produce a template for conducting functional assessment which could be shared with members of our organisations. He recognised the need to “drill down” if ME patients reported “fatigue”, for example, which doesn’t simply mean tiredness.

2.5   Katrina added that Capita encouraged feedback from claimants; that was the only way they would learn.

 

3.    Discussion and questions

3.1  Dr Willy Weir said he was getting reports of people doing work capability assessments who were still working to the psychological paradigm. The patient’s history as reported by the assessor was often deficient. The patients should be asked to set out what their work entailed before they became ill. Often they were very able, very active people with very responsible jobs which they had enjoyed. Dr Gargan explained that their assessors tried to make objective assessments and compare how the patients were, before illness, with how they are now.

 

3.2  Sue Waddle asked for some more detail on how assessors are trained. Dr Gargan explained there was a disability assessor foundation programme signed off by the DWP. They then studied the work of experienced assessors and shadowed them. They have a learning and development team; among other things they have developed an online training programme. A suitable programme was identified for each individual. Sue pointed out that, after Dr Gargan’s last visit, she and Dr Weir had worked out a guidance schedule for assessors which she had sent to him. Dr Gargan said Capita had received a number of ideas which they had taken into account.

 

3.3   Dr Charles Shepherd said he felt that nothing had changed. He and the Chairman had attended a meeting of the APPG for Disability the previous week. Familiar complaints were being made by patients. Very recently patients had reported to the MEA that assessors don’t seem to have empathy with ME/CFS patients, or proper understanding of their condition. They are reporting that patients suffer from fatigue (which they seem to see as “tiredness”) and not looking into the other reported symptoms, such as cognitive dysfunction. Even more disturbing is that what patients have been telling assessors is not then appearing in the report. It seems that either assessors are not listening properly, or what they are writing down is inaccurate. He gave an example of a patient who was said in the report to be mobile when in fact the evidence was clear that she was not. He asked how the mobility assessment was made. 

 

3.4   Dr Gargan explained assessors had to frame their questions in such a way that the individual patient was able to explain the limitations on their mobility. This was not easy. They were not allowed to ask patients to walk, for example. They took claims of inaccurate reporting very seriously; anyone who was found to have lied would be dismissed.

 

3.5  Christine Harrison said she had been stressing these points strongly for the past two or three years. She referred to her first meeting with Capita when she had pointed out their information on ME/CFS was flawed and had asked for it to be changed. They had referred to co-morbidities, but there were many symptoms of ME – eg pain. Co-morbidity is part of ME. It is a multi-symptom condition. She had discussed this with both Atos and the DWP. The whole condition must be looked at; it is a physical condition, not a psycho-social one. It is also very individualistic; each patient must be looked at as a separate individual. We need better information on what supporting evidence can be accepted. A number of doctors will not now supply supporting evidence for benefit claims (not just for ME) because they feel their letters are being ignored.

 

3.6  Anne Innes agreed about supporting evidence. She frequently saw evidence from carers and even medical professionals which was then ignored by the assessors. She had even seen medical evidence from Dr Weir ignored because the patient had seen him privately. She had seen the word “tired” many times on consultation reports, with the implication that tiredness was all that the patient was feeling. But that was not the case; what ME patients feel is overwhelming exhaustion. She referred to the expression “do no harm” which had already been mentioned, but she had repeatedly seen the condition of patients deteriorate due to the stress they had experienced because of the way they had been reported upon. Janice Kent endorsed that statement.

 

3.7  Anne went on to say that she had seen reports where assessors had lied, because she had taken recordings of the interviews. She had rarely seen ME patients score points on cognitive issues. The tests used to determine this were overly simplistic. The same was true of the tests of musculo-skeletal condition. They took no account of the many serious symptoms of ME. What plans had Capita got for improving the tests/descriptors for these conditions?

 

3.8  Dr Gargan referred to the template being produced by Capita. It points out for example that the fatigue experienced by ME patients is not just tiredness. It gives recommended times for preparing for an assessment interview, for conducting the interview and for writing it up. He explained how Capita and DWP will check to see that this guidance is being complied with. He also referred to the complexity of assessing patients with other conditions, for example epilepsy.

 

3.9  The Chairman asked that Forward-ME should be allowed to see the template. Dr Gargan agreed.

 

3.10          Tony Crouch raised the problems of severely affected ME patients – the housebound and bedbound etc. Often these people can do very little. They may not even be able to fill in the forms. Some kind of support is needed to help them get through the application system. Often they are very frightened by it because of “brain-fog” and panic, and for the same reason they often cannot cope with face-to-face assessment. He also knew of cases where the assessor had become annoyed because there was another person present at the interview; in one case it was the patient’s occupational therapist. How could we get support to these people?

 

3.11          Dr Gargan said that about 65% of face-to-face assessments were carried out at home. He accepted this could be very stressful for ME patients and also people with other illnesses, for example those with mental health conditions. On filling in forms he said the average adult in the UK had a reading age of twelve, and he admitted that many therefore struggled with them. He and Katrina Brooks explained that Capita was working with DWP and others to help overcome these problems. Sue Waddle remarked that her daughter had managed to complete a form online but it had taken her three weeks because she had only been able to do a small bit at a time. The assessors also seemed to think that she couldn’t be too badly affected because her written English was very good!

 

3.12          The Chairman endorsed what had been said about the complexity of the system. Sometimes people were asked to attend for assessment but said they were not well enough, were then asked to produce evidence which could be difficult, and experienced stress which made them worse until someone like her intervened. Janice Kent asked why the forms were so complicated and difficult to understand if the average reading age was only twelve. Dr Gargan agreed that the forms needed to be made easier to understand.

 

3.13          The Chairman asked Dr Gargan if he could explain the difference between Medically Unexplained Symptoms (MUS) and ME. She added that when “fatigue” is the first symptom reported patients are immediately put on to IAPT. Dr Willy Weir endorsed this and showed a short PowerPoint presentation which illustrated how a person becomes exhausted after vigorous exercise. Eventually he reaches a point where his heart, lungs etc cannot deliver any more oxygen. There is another mechanism however that cuts in and enables an athlete, for example, to put in that final, possibly winning, burst – followed by complete exhaustion. This is known as the anaerobic threshold. Even an unfit, but otherwise healthy, person will recover from vigorous exercise the next day. But people with ME go past that anaerobic threshold much more quickly, and two days after some exercise they will be as exhausted as Mo Farah after he has run 10,000 metres. Unfortunately many doctors do not understand this, and seem to think that ME patients are just a bit unfit and that a bit of exercise will put them right. That is not so. It is likely that the mitochondria in their muscles and brains are affected and bring about this exhaustion. The low anaerobic threshold of the ME patient, Dr Weir said, is the most compelling argument that ME is an organic condition.

 

3.14          Anne Innes related this observation to the sort of questions put to patients to determine their cognitive function. For example “can you drive a car?” A person with ME might be able to drive a car for a limited period, but eventually they will reach a point (for example, after an hour, possibly less) when they have to stop. Assessors are not trained to understand how quickly this can happen. The condition can fluctuate dramatically. Sue Waddle agreed and said that assessors seemed to approach this illness with pre-conceived ideas, and seemed unable to take on board Capita’s training and change their approach. Dr Gargan said he wanted to see objective reports done to Capita’s gold standard. Sadly, at times that did not happen. He would take our statements on board and convey them to assessors.

 

3.15          Tony Crouch said that GPs too had pre-conceived ideas about ME patients. For that reason a number of these patients avoided their GPs. What supporting evidence could be considered other than statements from GPs? Dr Gargan said they would put details in their template. The Chairman said she would like to get the current Minister back to discuss policy on these matters. Dr Charles Shepherd asked if one of us could attend a training session of Capita’s assessors in an advisory capacity. Katrina Brooks said she would get in touch by e-mail about this possibility.

 

3.16          The Chairman thanked Dr Gargan and Katrina Brooks for listening to our many points.

 

4.    Minutes of last meeting (7 February 2018)

The minutes were agreed as a correct record.

5.    Matters arising

 

5.1  Dr Charles Shepherd reported briefly on the APPG on Disability. He and the Chairman had attended a recent meeting. Two very good MPs had attended. There had been a lot of adverse comment about Capita. He found the group focused very much on the social and practical aspects of disability in contrast to our focus on medical aspects of ME. Their next meeting would be on international aspects of disability.

5.2   Parliamentary debate on PACE in Westminster Hall (item 4.10 of previous meeting). Charles had attended but could not say which MPs had participated (they were not announced).  Carol Monaghan MP was suggested as the best person to contact. She and Nicky Morgan MP were trying now to get a full chamber debate.

5.3  Green Paper on Mental Health Services for Children (item 3 of previous meeting). The Chairman said she had met the Minister the previous day and had complained about the poor treatment of children with ME. Janice Kent said she would be meeting Sir Nicholas Soames MP about poor services for ME children.

5.4  Letter to the Times (item 8.1 of last meeting). Christine Harrison asked when it might be published. The Chairman said it was on the Forward-ME website but there was no news about a date of publication. (It was published on 23 March 2018)

 

6.    NICE.

 

6.1  There was no further news about the NICE Review that could be reported. Dr Charles Shepherd drew attention to a report of a judgement of the Supreme Court (“the Montgomery case”) which found a patient had not been given the full information on which to base her consent for a procedure. The Medical Defence Union has warned all doctors of the need for fully informed patient consent. Janice Kent added that reMEmber’s trustee and legal advisor, Charles Taylor, had commented in writing including his view of the implication for ME patients. Dr Shepherd asked if he could inform Professor Mark Baker of NICE. The Chairman agreed and asked to receive the paper herself which she could distribute.

6.2   Members asked what this judgement might imply as far as CBT and GET are concerned; should patients be informed they are dangerous? Charles Shepherd said the problem is that we haven’t got scientific evidence of damage, although there is patient evidence. Dr Willy Weir commented that there is the evidence of the anaerobic threshold, and other members referred to the work of Mark Van Ness and Betsy Keller. Sue Waddle referred to the “yellow card” arrangements whereby adverse reactions to drugs are reported; there ought to be a similar arrangement for reporting adverse effects of GET etc.

 

7.    Any other business

7.1  The Chairman said she was waiting for a response to her representation to the Department of Health regarding the IAPT. The fragmented nature of Health Services was discussed.

7.2  Dr Willy Weir said that GPs seemed to be less effective now than in the past – perhaps because patients often don’t see the same doctor each time. Christine Harrison said this happened to her daughter who needed the continuity of the same GP.

7.3  Janice Kent referred to media reports that GPs were to be offered ”bungs” for not referring patients to hospitals. Other members had spotted this too.

7.4  Anne Innes asked what work Forward-ME had done with Maximus and Atos. She had details of very bad handling of tribunal cases. Who could take them up? Christine Harrison asked to be provided with details.  Anne then asked how she could get into Tribunal panels. Charles Shepherd explained we had met Dr Jane Rayner of the Tribunals service who was very good. Details were in the Forward-ME minutes. Christine also referred to a paper on Atos which had not yet gone public but should do so in March.

7.5  Sue Waddle said she had received a number of telephone calls about children/parents who had been threatened with legal action because of absence from school. Could she refer them to Tony Crouch – and complaints about social workers? Tony agreed. The Chairman said she would also write to Isabelle Trowler, the Chief Social Worker, on this subject.

7.6  Referring to problems with GPs again, Dr Willy Weir asked if we should meet the Royal College of General Practitioners. The Chairman explained we already had. Dr Charles Shepherd added that he had written a paper for them and was in regular contact with Professor Kamila Hawthorne of the RCGP. We were in line to do a workshop for the RCGP Conference in Glasgow later this year. Willy also referred to an event in Northern Ireland which Joan McFarland had organised for Queen’s University students, medics and the Dean. There would be a showing of “unrest” and he had been invited to speak. The Chairman commented that she had tried to get people from other medical schools but they showed no interest.

7.7  Janice Kent said that NHS England and the Clinical Commissioning Groups were looking for all sorts of ways to cut expenditure. We were in danger of losing any sort of service for ME patients if we did not argue a strong case.

7.8  Anne Innes asked how she could bring “bad cases” to the attention of Forward-ME. The Chairman asked to be e-mailed the information.

 

The meeting closed at 3.40 pm. Date of next meeting to be announced.