Forward ME

Minutes of the Meeting held in the Television Interview Room

House of Lords

Tuesday 9 October 2012, 2pm

Present:

Countess of Mar (Chairman)

Dr Charles Shepherd (MEA)

Sonia Chowdhury (AFME)

Tristana Rodriguez (AFME)

Janice Kent (reMEmber)

Bill Kent (reMEmber)

Jane Colby (Tymes Trust)

Anita Williams (Tymes Trust)

Sue Waddle (ME Research UK)

Christine Harrison (BraME)

 Katie James (AYME)

 

Mr Jerry Ashworth (Atos Healthcare)

Dr Barrie McKillop (Atos Healthcare)

 

1.        Introduction of Mr Ashworth and Dr McKillop

The Chairman welcomed Mr Ashworth and Dr McKillop and invited them to introduce themselves. Mr Ashworth explained his role and said he was here to listen as much as to give information.  Dr McKillop explained he was a full-time medical advisor to Atos; his background was general practice. Part of his role was to look at possible changes suggested by patients and patient organisations. PIP was due to start in April 2013 and he would be watching this carefully. 

2.      Questions. Mr Ashworth and Dr McKillop then took questions which had been previously submitted by members via e-mail.

 

Question 1 submitted by Dr Shepherd (MEA). The high rate of success at appeal clearly indicates that there are serious flaws in the way that people are being assessed in relation to fitness for work. If Atos was given a free hand by the DWP regarding time, money etc, what suggestions would they make to try to ensure that the medical assessment is fair and effective?

 

Mr Ashworth agreed it looked as though something could be improved. Prof Harrington had commented about getting feedback from appeals. Dr Shepherd referred to patients bringing to appeals evidence that had not been seen previously by the DWP or Atos. Dr McKillop commented that they would encourage claimants to submit such evidence along with the questionnaire before the original assessment – as well as any other relevant evidence. Dr Shepherd said that such information was not being currently chased by DWP or Atos. He added that a GP would probably charge you for this, and a consultant (if you have one) probably wouldn’t wish to take it up. Dr McKillop said that they do send out “further medical evidence requests” to GPs; unfortunately they often do not respond.

 

Sue Waddell (MERUK) asked whether “health care professionals” for WCA purposes were all doctors. Dr McKillop said “no” – there were also nurses and physios. These were the only three groups. For certain conditions (eg some specific central nervous system conditions) it must be a doctor, and where nurses are involved they must hand over to a different practitioner if the matter is beyond their competence.

 

Janice Kent (reMEmber) said she had encountered “damning” comments by GPs. Unless you had someone like a consultant on your case you could be in great difficulty. Her personal experience with the Department’s medical officers under the old system had been good; why couldn’t that be so now? Dr McKillop said that obtaining the correct sort of information from GPs might be a problem across the country. Atos had to determine a person’s functionality as distinct from a diagnostic label, and the information they were getting was not assisting with this all the time.

 

Christine Harrison (Brame) said they had worked a long time on the  provision of evidence but their advice had been rejected. The Chairman asked if it would help if Christine were to send this to Atos. Both Dr McKillop and Mr Ashworth asked to see this material.

 

Question 2  submitted by Jane Colby (Tymes Trust). It has been reported that Atos has only 11 audiorecorders to be used at work capability assessments. Claimants had the right to request a recording; would not a more realistic number of recorders and actively encouraging their use be a positive and practical step to obtaining good quality assessments thus reducing the number of expensive appeals?

 

 Mr Ashworth said he tended to agree this would be a good step. To date there has been a limited number of requests for recordings and the DWP felt that large scale purchase of machines was not a good use of public money. However it was being trialled around the country, and Atos saw it as good for them and for patients.

 

Dr Shepherd said he and Prof Harrington couldn’t understand why such expensive machines were being used. Mr Ashworth commented that recordings were needed for both parties. He assured Dr Shepherd that anyone wanting a recording would get it. Sonia Chowdhury (AFME) asked whether patient organisations should recommend their members to ask for a recording. Mr Ashworth said Atos had no objection although he was not saying it must be done.

 

Question 3. Christine Harrison (Brame). Do you allow claimants to read their assessments before signing them, and what weight do you give to independent evidence?

 

(The Chairman commented that she had tabled a question on this subject)

 

Dr McKillop set out the position for DLA. The DWP had removed the requirement for a signed statement for DLA some time ago. It never had applied to Incapacity Benefit or ESA. Dr McKillop’s personal approach was to “never put anything in a report you wouldn’t be prepared to tell the claimant yourself”. Anyone who wanted a copy of a report could request one after the event. Their plan for PIP was that the claimant and their adviser would be able to see what is on the report via the computer screen as the assessment would be conducted with the claimant and the health professional side by side.

 

The question of room set-up was raised, including the seating of the claimant in relation to the assessor. Mr Ashworth said that was controlled by the DWP.

[The Chairman subsequently received the following e-mail from Mr Ashworth:

“One area that I did check up on this morning were my comments around room layout. The constraints that we have are less around sitting opposite each other and more to do with the assessor having ease of exit from the assessment room should the claimant become ill, or indeed violent, during the assessment. This means that the assessor has to be closer to the door than the claimant. I don’t think the DWP requires our HCPs to sit opposite the claimant – and indeed in many cases HCPs do try to sit with the claimant at the side of the desk where this is practical, though as we know there are examples where this is not the case”.]

 

Christine commented that in her region (Norfolk) one had to go up two flights of stairs; the building was not easily accessible. Mr Ashworth said he knew that building; DWP was looking for better accommodation.

 

Question 4. Tristana Rodriguez (AFME) referred to AFME’s recent report Time for Action on the WCA which indicated that ME patients were not fairly assessed by Atos and received derogatory comments. How could ME organisations and Atos work together to improve this state of affairs?

 

Mr Ashworth said he had now read Time for Action. It was very good “like gold dust”. He asked if they could see the supporting detail; there was a need to target individuals who might be at fault. Tristana agreed to e-mail the information.

 

Dr McKillop agreed and added that “labels” should not be placed on claimants. They did not tell you the claimant’s disability or functionality. He recognised that in many patients the degree of functionality varied from one time to another, and cited epilepsy as an extreme example of variability. The Chairman asked whether people with a serious complaint could make it before going to appeal. Both Mr Ashworth and Dr McKillop confirmed this. The Chairman instructed members to take note and let their members know. Dr McKillop added that the benefit decision that is made, and the conduct of the healthcare professional during the assessment, are separate considerations. If a claimant feels that they have not been treated well during an assessment they have a right to complain, whatever the outcome of the benefit claim. If a claimant wishes to complain about the conduct of the healthcare professional they do not need to wait for the benefit decision before doing so.

 

Janice Kent commented that with conditions like epilepsy and asthma there was often a “pre-warning” that the patient was about to suffer an episode but that was not the case with ME. Mr Ashworth and Dr McKillop agreed. Sue Waddell referred to reports of people (not just ME patients) needing counselling after Atos interviews. Often ME patients hadn’t the physical or mental ability to make a complaint or appeal. Dr McKillop commented that a complaint can be made by another person on behalf of the claimant, and it need not be written; it could be by telephone and does not have to contain a lot of information.

 

Sue Waddell asked whether, in the event of no recording equipment being available, an interview could be deferred until it became available. Mr Ashworth said they could not defer indefinitely; people had the right to ask for recording but they could not guarantee it in every case. The possibility of a claimant providing their own recording equipment was being considered but he could not forecast the outcome at this stage.

 

Dr Shepherd enquired about the training and experience of assessors who might have incorrect ideas about the illness. Also a number, he believed, were from abroad and might not be familiar with ME. The MEA and other ME organisations were willing to provide input to training. Mr Ashworth and Dr McKillop outlined the training programme; it could take up to 24 days, depending upon the type of practitioner being trained. It was pretty intensive but concentrated on functionality rather than diagnosis. Their qualifications showed they had the diagnostic capability already. They agreed with Dr Shepherd that fluctuating conditions ought to be covered. Jane Colby said that when she was severely ill she had been assessed as able to cook her own meals when she could not lift a saucepan. What if someone so assessed were to have an accident? Who could be held liable? Mr Ashworth suggested questions like this should be posed at the interview, and it showed the value of bringing a friend or companion to the interview who could ask questions like “is that the position every day?”

 

The Chairman referred to the NICE Guidance which said that if you have ME then you have a functional impairment. Dr McKillop commented that the NICE Guidance was more to do with diagnosis and treatment than with functionality. The Chairman said she would table some questions on this subject.  

 

Question 5. Tristana (on behalf of S Knowles) asked if Atos would agree that they and the DWP would earn greater respect from ME patients if they would admit that they are not yet in a position to make balanced judgements about the complexity of ME, there being “no point-by point assessable criteria” for their disability.

 

Dr McKillop agreed that ME was a complex condition  but if we were looking at functionality and not diagnosis, then he did not think ME patients were at a disadvantage compared with other patients. The key was getting the assessment itself right for each individual.

 

Question 6 , sent in by Mr J Newman, was fairly lengthy. It asked about the training of health care professionals who assess patients using wheelchairs – or who might use a wheelchair had their own doctor not advised against it.

 

Dr McKillop explained that Incapacity Benefit assessed walking ability but now, in line with ESA legislation which considers broader ability to mobilise, their assessors are trained to take into account the use of aids such as wheelchairs. The Chairman asked for confirmation that those unable to walk were not told by Atos that they must use a wheelchair. Dr McKillop confirmed that they were not. There were a number of reasons why a wheelchair might not be suitable – for example the patient might be unable to use their hands to propel one. The Chairman asked whether the instructions to assessors on this subject needed to be clarified. Dr Shepherd commented that Professor Harrington’s committee had said assessment should be based only on what  claimants could do using aids such as wheelchairs which they normally use and had recommended clear guidance on this subject.

 

The Chairman then announced that the time allotted for the meeting had expired. She thanked Mr Ashworth and Dr McKillop for answering the questions and said they had been very open. They confirmed that Forward-ME could keep in touch with them and that they would be delighted to come to another meeting in, say, six months’ time.

 

The Chairman added that as there had been no time for the normal business of the meeting she would arrange another in November. (Since confirmed as Tuesday 13 November 2.00 to 3.30pm). The meeting closed at 3.30pm.