26 October 2011

Held in the Television Interview Room, House of Lords
Wednesday 26th October 2011 at 2pm


Countess of Mar (Chairman)

Christine Harrison (BRAME)

Sue Waddle (ME Research UK)

Jane Colby (Tymes Trust)

Sir Peter Spencer (Action for M.E.)

Janice Kent (ReMEmber)

Bill Kent (ReMEmber)

Dr Charles Shepherd (MEA)

Dr James Bolton, Deputy Chief Medical Adviser, DWP

Lord Freud


1. Introduction of Lord Freud, Parliamentary Under-Secretary of State (Welfare Reform)


The Chair welcomed Lord Freud to address the group.


Lord Freud introduced himself and spoke in the context and background of the Welfare Reform Bill:


Universal Credit included support for people with M.E. and fluctuating conditions.


Advantages of Universal Credit:


(i) Simpler to understand: people would know where they stand.


(ii) Quicker


(iii) Withdrawal of support when people do go to work would be at a steady, understandable rate so that the structure of the benefits system would reduce the risks of losing all benefits for people with fluctuating conditions trying to get back to work.


(iv) There would be a generous disregard (earnings threshold which can be reached before benefits are deducted) for disabled people of £7000.


People with M.E. could be one of the major beneficiaries of the new system.


Disability Living Allowance (DLA) had become a very inflexible system. The aim was to keep the principle of extra money for people with a disability which was non-means tested and did not change whether they were in or out of work, whilst also ensuring the tests were consistent. The DWP were determined to get the test right for people with fluctuating conditions, including looking at symptoms over a period of time rather than just a snapshot.


It was hoped that the second draft of the Personal Independence Payment (PIP) Assessment criteria would be published in the next month.


Professor Malcolm Harrington had recommended a number of changes to the Work Capability Assessment (WCA) which the Department for Work & Pensions (DWP) had accepted wholesale.


Janice Kent handed Dr Bolton a research paper by Dr A Bansal which referred to the effects of stress on ME/CFS patients.


2. Lord Freud then took questions which had been tabled by the Group:


Q1 submitted by ReMEmber:


What steps can be taken to make staff understand the very real anxiety suffered by claimants when their only income is threatened, it is the same as others being told that they are going to lose their jobs and income. But they don’t have the health or energy to come out and demonstrate?


Lord Freud said that there was concern about having groups which have an automatic passport to benefits, because within any group there will be a spectrum of severity. This would result in each person having an individual assessment to determine where they sit on that spectrum. The default position was to get a consistent and fair assessment.


Dr Bolton added that it was a question of proportion in each case. In terms of making staff understand anxieties, Professor Harrington identified this in his year 1 review and attempted to introduce greater empathy in the system, and opportunities to submit medical evidence from treating practitioners.


Lord Freud said that the Countess of Mar has described the anxiety face by benefits claimants very vividly, and that Professor Harrington had told the DWP that they need to get this right.


Q2 submitted by BRAME:


People with chronic Long Term Conditions and disability, including those with long term severe M.E., usually have a poor prognosis and currently indefinite awards. Given that most of this group will continue to deteriorate, or not improve, why are the DWP stopping indefinite awards, and putting people through the continued trauma of the benefits process. Can the DWP at least look at longer term awards of 5 and 10 years? If this is not possible, will the DWP at least be accepting the medical evidence from the person’s Health Care Professional (HCP), to determine whether a person’s health has deteriorated, or not improved, to save them the physical , and emotional , stress of having to be reassessed? The DWP must accept that some people will never get better, and will never improve enough to work.”


Lord Freud said that the DWP would need to look at the time intervals for ESA and DLA separately. There would be some long term awards.


Christine Harrison made the point that the prognosis for people with long term severe M.E. was very poor. Would the DWP accept medical evidence from an HCP that an individual’s situation was unchanged or had deteriorated further?


Lord Freud said that medical evidence would be accepted, and that claimants could bring along someone to support them so that they were not facing the process alone.


Christine Harrison said that the DWP needs to recognize that many people with M.E. do not have an HCP to give them the medical evidence they need.


Q3 submitted by the M.E. Association


Given the fact that the DWP will shortly be receiving recommendations from Professor Harrington regarding changes to the WCA descriptors, which are based on the reports from the fluctuating conditions group and the mental health group he has been working with, can Lord Freud reassure us that these recommendations will be acted on in a way that will produce a fairer and more effective method of assessing fitness to work in people with these conditions.


Lord Freud said that he could not reassure in the formal sense as he didn’t yet know the cost implications of this. DWP believe Professor Harrington’s judgment was sound and that his recommendations were thoughtful and helpful.


Dr Charles Shepherd said that the Fluctuating Conditions Group and the DWP Scrutiny Group had reached agreement on a revised version of the report.  This would now be submitted to Professor Malcolm Harrington and the DWP.  One of the main problems with WCA is that the changes to descriptors brought in by Statutory Instrument in March is that they made things worse.


for people with fluctuating conditions such as M.E. Could Lord Freud give some reassurance that on receiving the recommendations of the Fluctuating Conditions group some action would be taken? It would be immediately useful if the assessments stipulated that claimants had to be able to perform a task reliably, repeatedly and safely.


Lord Freud said that he could not give a formal reassurance, but that he would take the recommendations of the Fluctuating Conditions group very seriously.


Q4 submitted by Action for M.E.


The Government’s acceptance of the finding in Professor Harrington’s first report on Work Capability Assessment acknowledges that the process is flawed for those with fluctuating conditions such as M.E. Other than administrative inconvenience, what reasons if any does the Government have for not suspending WCA for those with fluctuating conditions until it is fit for purpose and delivers fair results?


Lord Freud said that the system may not have been working as well as it should, but that there was a backup in the form of the tribunal system, although relying on that did impose some stresses. The plan with the WCA was to get something in place and then improve it steadily. The reason that decisions reached at tribunals are different to the one from the original assessment was usually because the level of information supplied at tribunal was greater than that at the original assessment.


Sir Peter Spencer suggested that the DWP’s refusal to postpone some assessments appeared to be driven by administrative convenience because Action for M.E. had submitted detailed reports from a consultant immunologist showing concerns about the adverse impact that assessments were having on his patients Professor Harrington was unable to say that improvements for people with fluctuating conditions would be implemented any earlier than 2013. Many people would be harmed by this delay


Lord Freud said that he could not comment on timing yet, but Professor Harrington’s first set of recommendations were brought in very rapidly. Without abandoning the entire WCA, the right way to go was continuing improvement.


Sir Peter said that the reality was that the situation was much worse and more urgent than the Government realised.


Lord Freud said that this was a powerful point.


Q5 submitted by M.E. Research UK


Following the flawed PACE report and the admission by the authors that they were not studying people with M.E., will the DWP look at the plethora of biomedical research findings available (from M.E. Research UK)  and adjust their training and guidelines for M.E. accordingly?


Dr James Bolton said that treatment approaches were not important from a benefits award perspective, but rather the functional impacts on the individual. The PACE Trial, whilst it may be a clinically interesting piece of work, contains nothing that would change the way the DWP do things.


Sue Waddle said that she accepted this, however, she felt that the suggestion that M.E. can be ameliorated by Cognitive Behavioural Therapy or Graded Exercise Therapy implied it was not so serious. If immune dysfunction , for example, was taken into account a different approach would be taken.


Dr James Bolton said that he did not feel that this is true. Depression is ameliorated by Cognitive Behavioural Therapy, however, the DWP did not think less of the depression but looked at the functional impacts of it.


Q6 submitted by Tymes Trust


What is to happen to the 'Incapacity Benefit in Youth' claimants who come in the ESA Support group; will their 'in youth' status override their support group status? ie. will their benefit be terminated along with those who have alReady received more than 12 months' payments?


Jane Colby said that she had been advised by a welfare rights adviser that if the proposed one year limit on contributory ESA goes ahead, an estimated 10% of claimants who were ineligible for income related ESA would receive nothing after one year.


Lord Freud said that figure sounded like a correct estimate.


The Chairman thanked Lord Freud for attending.


3. Apologies:

Mary-Jane Willows AYME


4. Minutes:

The minutes of the meeting held on 11 May 2011 were accepted as a true record.



The Chairman felt that the meeting held on 25 October 2011 was a success and that the, MPs seem to be getting enthusiastic about the work of the Group.

Sir Peter Spencer said that he was pleased that 4 parliamentarians have attended the Group consistently which compared favourably with the rather patchy attendance of the past.


6. DWP matters


The Chairman said that the Welfare Reform Bill was still trudging through the House of Lords. She has submitted one amendment with regards to the definition of work.


The Chairman also said that she was becoming increasingly concerned about relationship between DWP, Atos and Unum.


Christine Harrison said that she was part of the PIP development implementation Group. She had asked the Group whether Atos’ contract had been renewed. DWP staff had not replied. The Countess of Mar confirmed that Atos’ contract has been renewed until 2014.


Sir Peter Spencer said that he was disappointed that Lord Freud had  felt the need to remark: “I’m sure you are all as concerned as we are about benefits fraud” in his earlier address to the Group. The amounts of money lost to the Government through benefits fraud are substantially less than that attributed to tax fraud. The Chairman said that a disproportionate amount of energy and publicity was expended on the issue of benefits fraud and this was generating ill feeling towards genuine benefits claimants.


7. Health and Social Care Bill


The Chairman told the Group that Earl Howe has responded to over 100 speakers at Second Reading of the Health and Social Care Bill.


Sir Peter Spencer commented that the APPG had agreed to table an amendment.


The Chairman drew the Group’s attention to the correspondence which has occurred between Invest in M.E. and the editor of the InnovaIT New GP Guidelines for Chronic Fatigue Syndrome.


Dr Charles Shepherd said that the InnovAIT Guideline is “not a NICE guidance to GPs, as has been put forward on the internet. This journal provides education and information to GPs in training and trainers. It is part of the medical education process, and in that respect it is not far removed from the different review articles that appear in medical journals every week. It does not carry some sort of NICE-type status being sent to all GPs, that all GPs now have to abide by. It is a piece of educational material produced for GPs in training, produced by people who have expressed their own opinions, some of which we would not agree with. "It’s water under the bridge. It’s appeared in a journal. Everyone’s forgotten about it now. Some people will refer to it.” 


Christine Harrison said that it needs to be highlighted that many GPs fail patients with M.E. under the NHS Constitution. READ codes should also be made mandatory – this would also enable a clinical audit and a needs services assessment. This could be helped by taking the READ code a step further by including a severity grading of e.g. 1-5. BRAME has been campaigning hard for this for a few years now.


The Group agreed to invite the Chairman of the Royal College of General Practitioners to attend a meeting.


8. NHS and National Outcomes Database


Janice and Bill Kent asked whether the National Outcomes Database (NOD) could be used to put pressure on Healthcare Commissioners to extend services.


Sue Waddle said that there are thousands of people lying in beds out there with no care. We do not know how many people there are with M.E., which takes us back to the READ code. She also asked who pays for the NOD?


Sir Peter Spencer said that he believed that data from the National Outcomes Database would not be published. The NOD was owned by BACME.  Sir Peter agreed that the Group needed to work together to campaign to improve existing services and save services under threat and that Action for M.E. was putting a plan together on this.


Christine Harrison reiterated her comments on the READ code. She also encouraged everyone around the country to get involved with their local Healthwatch (formerly LiNKs), or contact them for help. In their own region they have worked very hard with other patient representatives and included their local LiNKs group to help with negotiations and meetings at their local PCTs regarding their own ME service. There is a website showing the work they have done which may help others.


The Chairman said that the Association of Young People with M.E. (AYME) was defending the specialist service in Frimley.


9. Research


Dr Charles Shepherd told the Group about the developments in M.E. Research:


(i) The Biobank for M.E. was up and running

(ii) New research on the effects of the drug Rituximab on M.E. would need to be replicated.

(iii) The MRC were going through the applications which have been received in response to their announcement that they were making £1.5 million of funding available for M.E. research.

(iv) Current situation on XMRV research


The APPG has also agreed to:


(i) Write to Professor Stephen Holgate, Chair of the MRC Expert group on M.E.  to invite him to address the group once decisions have been made on allocation of the MRC funding.

(ii) Write to the MRC to express interest in further research into the effects of Rituximab.


10. Any other Business


The Chair told the Group that she is to meet an official from the Department for Education on 16th November to discuss the Nisai Virtual Academy. She had invited Jane Colby and representatives from Nisai to join them.


The APPG has a meeting with Tim Loughton 2nd November.


Bill Kent said that he had attended a meeting of the NHS Future Forum, which was an independent panel of advisers advising NHS on future reforms. He also asked whether he might try to get someone from the Department of Health to discuss ME/CFS services with the group. The Chairman agreed.


Christine Harrison stated that she had also attended that NHS Future Forum meeting, and was disappointed in some comments she had made to her regarding neurological ME, but at a previous meeting had managed to get M.E. minuted as an example of inequality of care.


The Chair called the meeting to a close.