FORWARD-ME

 

Minutes of the Meeting held in the Television Interview Room

House of Lords

Tuesday 24 February 2015, 2pm

Present:

Countess of Mar (Chairman)

Dr Charles Shepherd (MEA)

Clare Ogden (AFME)

Bill Kent (reMEmber)

Sue Waddle (ME Research UK)

Sue Marsh (Maximus)

1.      Apologies had been received from Christine Harrison, Janice Kent, Sonya Chowdury, Hannah Clifton, Dr Paul Worthley and Jane Colby

2.       Sue Marsh, newly appointed Head of Customer Experience at Maximus

The Chairman welcomed Sue Marsh who said it might seem surprising that she had accepted this post as she had been a vocal critic of the Work Capability Assessment, and her group had been much involved in fighting the proposals of the Welfare Reform Bill. She would be taking up her new post on 2 March. She had high hopes for her first 100 days. She hoped to achieve a lot of the changes she had been campaigning for; some would be more easily achieved than others.

3.      Discussion and Questions   

3.1 Sue Waddle asked what sort of changes. Sue Marsh gave some examples – better access to assessment centres for the disabled, for example. A review of all the centres was to be carried out; some had already been done. She wanted to see better access to leaflets etc including the introduction of braille versions. She had already been able to re-assure RNIB on this point. She explained that Maximus have a lot of contracts of this kind with governments all around the world. They were well aware of the need for “accessible literature”.  She would also be campaigning for better understanding of fluctuating conditions. She had already been able to get changes to posters which would be going up in all the centres, and to the leaflet on complaints procedures which was very much better, much more accessible and had been signed off by the DWP. She hoped that people would feel much less anxious when reading the leaflets. They would be taking out the warnings and “perceived threats” that had caused claimants so much anxiety in the past. She was leading on this review of literature including the DWP letters.

3.2 The Chairman pointed out that a problem for many ME patients was that they did not see their GPs frequently so they found it difficult to produce evidence corroborating their statements. And in any case the DWP would not necessarily accept the evidence supplied by a GP. Sue Marsh asked members whether they had any ideas on what form of evidence might have more effect upon the DWP. Dr Charles Shepherd referred to a reluctance on the part of many GPs because this was an extra chore for which they were not paid. He wondered about an official form designed for the purpose. Sue Marsh agreed this was not an easy problem to solve; there was perhaps a need to get doctors to understand that for these patients the means of securing a roof over their heads and food on the table was every bit as urgent as the need for medical treatment. The Chairman pointed out that the DWP had said they would take evidence from people other than doctors. Sue Marsh said the new ESA50 form (not yet released) contained a list of the people from whom they would accept evidence. Sue Waddle pointed out the additional problem for severely affected ME patients who are unable to leave their homes. In many cases they did not come into contact with any sort of health care professional or social worker. The Chairman said that she advised people to go to the Citizen’s Advice Bureaux on these matters.

3.3 Sue Marsh asked members whether their organisations had any guides that could be helpful on this subject. Dr Charles Shepherd said they had supplied input to the DWP guidance on ME and the three-hour learning module for Atos staff on fluctuating and variable conditions which he understood would be passed to Maximus. The MEA guidance to professionals on ME/CFS was also helpful. Sue Marsh asked to be sent any guidance of this kind so that she could study it and use it to inform DWP/Maximus communication with the public. Dr Charles Shepherd said the key to improving assessments and service to patients was more effective training for Maximus’ staff. Sue Marsh agreed, but she reminded members that the DWP required assessors to establish what patients are able to do (or not able to do), not the medical condition from which they are suffering. In doing so they should delve thoroughly into fluctuating conditions etc. If this was done properly everyone would get an accurate assessment. Dr Charles Shepherd agreed but pointed out that in their investigation the assessors should take into account the effects a particular condition (eg irritable bowel syndrome) could have on the patient – and that could vary from patient to patient.

3.4 Dr Charles Shepherd spoke of the frustration felt by patient representatives who build up a well-argued case which is initially welcomed by DWP or its agencies but is then subjected to long delays before consideration and is eventually forgotten. Sue Marsh said she understood this frustration. She was quite reassured however by the attitude of Maximus so far. She would be engaging with customer groups and charities, and would deal directly with enquiries and complaints from them. Anyone could approach her.

3.5 The Chairman said that in the last twelve months or so (following a number of complaints by her) there had been many more successful appeals, and not so many cases had needed to go for appeal. Dr Charles Shepherd said there had also been a steady increase in the number of people being placed in the support category. He then referred to severely affected patients who have difficulty trying to get a home assessment. Sue Marsh said she too was aware of this problem. She hadn’t yet taken it up with Maximus, but she would look into the possibility of getting more home visits.  

3.6 Clare Ogden referred to a question raised by the Disability Benefit Consortium about ESA claimants not being able to make another claim after they have been turned down. Sue Waddle supported Clare and added that people were often deterred from challenging the system because of the amount of work involved and the cost when their benefit had been stopped. Sue Marsh said she did not know the answer, but promised to look into the matter. The Chairman asked members to e-mail her on this matter and she would table a Parliamentary Question.

3.7 Sue Waddle asked Sue Marsh if she had any responsibility to people who had “fallen out” of the system – in other words they were still sick or disabled but were no longer on benefit. Sometimes they couldn’t face the trauma of trying to make a benefit claim. Sue Marsh said that to a very great extent her job was what she could make of it. If she could she would try to help people in that position but she explained that DWP does not keep records of people once they have fallen out of the system. They know how many people have left the system – mostly those who have recovered. Dr Charles Shepherd asked Sue Marsh if she thought Maximus had the will to tackle DWP over these concerns about assessments. Sue replied that she had spent quite some time during her job interview asking that question. She was convinced that the people at the top of Maximus wanted to make the system as good as they could for claimants within the tight parameters set by DWP. The session then ended with the Chairman thanking Sue Marsh for answering so many questions for us.

(When the Chairman returned after escorting Sue Marsh to the exit, she explained Sue had told her it would be a good idea if patients were to keep a diary of their condition which they could use as supporting evidence when making a claim)    

 

4.      Minutes of last meeting (20 January 2015)

 The minutes were agreed as a true record.

 

5.      Matters arising

5.1 Talk by Dr Alistair Miller (item 2 of last meeting). The Chairman said that Dr Miller hadn’t yet replied to the questions we had put to him. She would write to him about this.

5.2  Leaflets on Mental Health Act (item 4 of last meeting). Clare Ogden said it was being re-drafted in the light of comments.

5.3 Guidance on “supporting evidence” from consultants etc.(item 2.13 of last meeting). Clare explained that AFME have a factsheet on this subject which patients can show to their healthcare professionals.

5.4 PIP (item 5.2 of last meeting). Christine Harrison had re-written this paragraph as follows “… this is important information as DLA files could well be destroyed before people get to appeal/tribunal stage. Also there could be important and helpful medical/supporting evidence in the DLA file – ie giving the impact of their condition over a number of years, but also showing deterioration/progress of a condition and expected prognosis, which should help in determining length of review date. Members of PIP ISF are still strongly stating that for more chronic conditions review should be at least ten years, with a possible brief form in between to just get (eg) a GP to confirm there is no improvement or there has been further deterioration”. Sue Waddle said it would be helpful if our members could be informed how to get their files – how do they ask for them? The Chairman said it might be a simple matter of writing to DWP, but Bill Kent said on the other hand it might require some other approach, and we didn’t know. Christine had also asked about progress of the PIP Questionnaire she had distributed. The Chairman said she would look into these matters so that they could be put into the minutes. 

 

6.      Research

Dr Charles Shepherd spoke about the recent Institute of Medicine (IOM) Report from the United States (300 pages – but it doesn’t cover treatment). He said the IOM are a pretty influential body in the States. They wanted to change the name of the illness to Systemic Exertion Intolerance Disease (SEID), but there didn’t seem to be much enthusiasm in this country for changing the name from ME. The MEA would conduct their next website poll on this proposal to get some more detailed feedback. He also suggested Forward-ME might go to NHS England about the IOM Report. The Chairman said that after the General Election she would invite a speaker from NHS England. She also referred to the controversial entry in Kumar and Clarke, and the suggestion by Dr Devlin of the MDU. She would get back to them. She had also sent the Daily Telegraph an e-mail but it had bounced back; Charles Shepherd said he had the e-mail address of Sarah Knapton; he would forward it to the Chairman so that she could write to Ms Knapton. She had agreed to address the Royal Society of Medicine on 18 March on the Politics of ME/CFS as part of the seminar “ME/CFS Frontiers in Research etc”. Dr Charles Shepherd explained this event was really for RSM members only, but some places were available for charities and he would arrange for us to be invited.

 

7.      Categorisation

The Chairman passed around a copy of the letter she had received from the Royal College of Paediatrics and Child Health. She had written to thank them and to say we would be discussing it. She would write again to Prof M Baker (NICE) in the light of the IOM Report.

 

8.      AYME

The Chairman reported that she had been in correspondence with Mary-Jane Willows of AYME about her participation in Forward-ME. As membership of the group is by invitation of the Chairman she regretted that AYME’s contribution was not conducive to the effective joint working of the group.

  

9.      Any other business

The Chairman announced Dr Poulter had said he could come on 24 March. She would respond by saying we will wait until after the Election. Dr Shepherd announced the Biobank had raised £35,000from the Christmas Appeal. The MEA would double that, so they now had enough to go ahead with opening up the Biobank to researchers who want to make use of the blood samples. He explained what would be done. Future speakers; the Chairman said she had contacted Dr Amolak Bansal and was waiting to hear from him. Members discussed the position of the APPG which would be disbanded because of the Election. Bill Kent announced that he and Janice would be attending the Findacure seminar on Drug Repositioning on 27 February. They would report anything of interest to Forward-ME.