All Party Parliamentary Group on M.E | Chair, Annette Brook MP; Vice-chairs, Countess of Mar and Ian Swales MP; Secretary, Russell Brown MP.
Meeting held Monday 3rd February 2014, 4.00pm Room N, Portcullis House, Westminster
Annette Brooke MP (Chair)
Mike Penning MP, Minister of State for Disabled People
Russell Brown MP
Graham Brady MP
The Countess of Mar
Sonya Chowdhury (Action for M.E.)
Charles Shepherd (ME Association)
All Party Parliamentary Group Members:
Bill Kent, reMEmber
Mary-Jane Willows, AYME
Doris Jones, 25% Group
Christine Harrison, BRAME
Phillida Bunkle, Invest in M.E.
James Bolton, Deputy Chief Medical Adviser, DWP
Jim Dobbin MP
Nicholas Soames MP
Caroline Lucas MP
Peter Aldous MP
Peter Hain MP
Ian Swales MP
Sue Waddle, ME Research UK
1. Welcome by the Chair
The Chair welcomed everyone to the meeting and introductions were made.
2. Guest Speaker: Minister of State for Disabled People, Mike Penning MP
This position has been promoted from a junior position to a Minister of State position with an expanded role: it is intended to co-ordinate disability policy across government so very different from previous role and includes health and safety.
The Minister reported that Atos are delivering the Work Capability Assessment (WCA) contract but also part of the new PIP contract which is being phased in (rolled out in North England today for new entrants). There will be a shift with 97% of assessments now be face-to-face as opposed to 6% previously. At present there are contractual discussions being undertaken with Atos re WCA but The Minister is not in a position to discuss the detail of this at present. The Minister reported that they are very conscious about issues relating to who is being asked to come in for reassessment. He also acknowledged the challenges with fluctuating conditions (such as M.E.) and hidden illness, as highlighted in Dr Paul Litchfield’s Year 4 independent review of the WCA. The Minister stated it is taking time but things are moving forward. The Minister attended a WCA tribunal where he was able to experience first-hand the difficulties that individuals subject to the process have. One positive development that has occurred in the last couple of months is that they are now getting feedback from judges.
Question from Charles Shepherd:
In relation to the report of the Evidence Based Review (EBR) of WCA, to ask whether:
a) the DWP has now considered the report on the EBR of the WCA?
b) there are any plans to make further changes to the WCA following on from the EBR?
c) the Minister would meet with representatives from Professor Harrington's Fluctuating Conditions Group and Mental Health Group to discuss the outcome of the EBR?
Answer: Yes once Parliament has been informed of the actions/decisions. The Minister is very supportive of the work that has been done thus far and will be publishing next steps soon. The input in reflection of fluctuating conditions from the EBR and other reports is very useful. It clearly is a very difficult area for patients and professionals alike.
Question from the Countess of Mar:
The Countess passed on a letter from an individual outlining his experience with WCA from assessment to tribunal (appeal upheld; placed in support group) and then almost immediately, he received communication to incorrectly inform him about being placed in the WRAG. This highlights the experience of others alongside the waste of money and capacity involved.
Answer: The Minister responded that there are clearly too many people that are going to tribunal and shouldn’t. There is also an issue of evidence being made available too late (e.g. GP letter). The evidence base from experts needs to be used better and at an earlier point to inform a decision and to not require people to come back for tribunal or further assessment. A consultant’s letter alongside a GP’s should provide an evidence base and therefore not require a face-to-face assessment as it is not the health care assessor’s role to diagnose.
The Countess highlighted that where there are people experiencing severe M.E. they should not be placed in the Work-Related Activity Group. The Minister responded that contractual issues are now being addressed and there is a flow through issue that is being looked at.
Question from Annette Brooke MP:
There appears to be a communication gap between DWP and Atos and this has been specifically highlighted through the contact and communication that she and the Countess have experienced in relation to how often a person should be reassessed.
Answer: The Minister stated that the decision-maker is responsible for deciding this based on the recommendation made by the health care assessor (which is based on the face-to-face assessment). James added that it is at the department’s discretion about when it goes back to Atos. If the case has recently been through tribunal, it is the DWP’s discretion as to when a person is called back. Changes have been made to the process following recommendations from the EBR group.
Annette had the impression that decision makers were being more alert to the fact that they should be responsive to recent tribunal decisions.
Question from Christine Harrison:
Christine has also written to James. Individuals with neurological M.E. have great difficulty in securing support services and care as specialist/care provider input/availability and funding is limited. There is also a lack of comprehension of how to care for individuals who are this severely affected. Because of a lack of access to services, it is not always possible to obtain supporting evidence for a claim. There remains a misconception, misunderstanding and prejudice. There are problems with NICE which have been highlighted in the letter. Will the Minister please ensure that his department and its providers (e.g. Atos and Capita), formally adopts, and uses for training and reference, the International Consensus Primer on Myalgic Encephalomyelitis (ICP ME 2012)? If this is recognized, it will provide a significant step forward.
Answer: James has responded in writing to this question.
Question from Phillida Bunkle:
It is clear from many of our supporters that GPs are often known to refuse referrals for their M.E. patients on the grounds that there is little point in doing so as they believe there are no treatments. This illustrates an ignorance of ME and of research into the disease (RCGP Chair Dr Clare Gerada stated at the IIMEC8 Invest in ME International ME Conference, in London in 2013, that GPs know little about ME).This impacts the patient as well as compromises their entitlement to benefits. Some of the clinics set up for ME and CFS specifically state: “Please note that we do not accept referrals where the sole purpose is for second opinion for pending benefits claims.” ( King’s College CFS Unit) How are patients supposed to obtain medical evidence for their benefits applications if they are refused referrals and the few clinics set up to see these patients cannot provide appropriate support?
Answer: The Minister highlighted that if there are difficulties with GP support, care or diagnosis then there is an issue; he will raise this with the Health Minister/others as it clearly creates further problems. Furthermore, it creates issues in relation to how we actually move forward issues with WCA, provision of evidence and impact with tribunals given that some individuals are not able to obtain the evidence they require. This then means that there is potentially a tribunal with late evidence being provided or further assessments required. The minister acknowledged that there is a need to explore how we get GPs to refer and ensure that those that need evidence from GPs are provided with it. GP training is also absolutely critical as we move forward with Clinical Commissioning Groups.
Question from Annette Brooke MP:
Annette has elderly parents in her constituency who are absolutely distraught as neither their 30 year old son, who is severely affected and is bedbound, nor they are getting any support and there are no home visits/assessments for WCA.
Answer: The Minister reported that he has two constituents who have recently had home-visits as they were not able to attend the assessment visit.
However, this was not Annette’s experience and Sonya stated that this was also an issue highlighted by individuals to Action for M.E.
Comment from Mary-Jane Willows
Children and young people can often be over-looked. They aren’t able to get the support they need as the GPs don’t want to label them with the illness but by not diagnosing, they are cutting their potential access to services. Lack of awareness and understanding is causing considerable difficulties. Mary-Jane has written to the new chair of the Royal College of GPs and received a response stating that a focus on M.E. was not on her agenda. Mary-Jane also highlighted significant differences with support that can occur within the education system, even in the same local authority area. There is a critical need for raising awareness and understanding which is endorsed from the top. There is also a knock-on effect with a lack of knowledge which leads to unnecessary child protection cases.
Question from Sonya Chowdhury
There is considerable evidence from published research to charities’ experiences of working with people affected by M.E. that highlights the lack of support, care, empathy and respect that people receive from GPs and others in health and social care. While GPs have a challenging and tough job and there are many good GPs, GPs themselves are highlighting the difficulties they face from this illness. Action is needed from the top as well as from the bottom up; what will the Minister do to address this issue?
Answer: The Minister stated that he will find out who holds responsibility in these areas and raise the concerns. He will also formally ask for them to consider attending the APPG.
Christine asked whether the Minister would be willing to attend a meeting with other parliamentarians, including the Health Minister. The Minister confirmed that he would.
Comment from Russell Brown MP:
Health is a devolved issue but the constituency that Russell represents has approximately 150,000 people with a number of GP practices, but, there is only one GP with specialist knowledge about M.E. This is a big challenge. Russell offered to pass on the film, Voices from the Shadows, for the Minister to watch. Russell further highlighted the confusion caused by the mix-up between M.E. (as a neurological illness) and the view of some that it is a psychological or psychiatric illness.
Response: The Minister acknowledged that there is a problem if GPs are struggling with the illness.
The Countess of Mar added that there are two lots of research show that up to 40% of people with the M.E. label do not have actually have M.E. This highlights that it is essential that GPs are able to diagnose correctly. She also highlighted that there are some unhelpful messages that have added to the difficulty with understanding for GPs.
Question from Doris Jones:
Will the Minister please ensure that the continuing manifold problems experienced by severely affected ME patients in obtaining appropriate award of ESA are finally addressed and corrected? These were summarised last year following a survey by the 25% ME Group and kindly conveyed to Lord Freud and the Minister by the Countess of Mar and Annette Brooke MP respectively but more recent feedback from patients indicates that sadly little has changed. Doris has contacted the advocacy project worker with the 25% Group and the only change that she has observed over the last year, is that there has only been one small change as a result.
Answer: The Minister stated that if there are issues with diagnosis and misdiagnosis then this adds further complexity to the issue of WCA. He also highlighted that assessors are not expert not diagnose. With the new portfolio, the Minister explained that he can come out of the DWP focus and focus on outcomes. He also acknowledged that the fluctuating nature of the illness is also an issue. The Minister said he will also look into home visits/assessments and why these are not happening.
Comment from Phillida Bunkle:
It is very difficult for someone who is severely affected/bedbound to enroll with a GP’s practice; people have to attend an initial health assessment. If you don’t attend, you won’t get enrolled. For the severely affected, they are not able to attend. She also has examples of individuals who then experience negative responses from surgeries if they challenge this.
Comment from Annette Brooke MP:
The stress of this and the WCA assessment process makes the condition worse and therefore there is an even greater need to reduce stress.
Comment from the Minister:
We won’t get everything right and it will take time but there is a need to improve how we are doing and what we are doing while also grappling with fluctuating conditions…but we will get there. The Minister had to leave but will ensure the remaining submitted questions will be responded to. James Bolton remained to respond to any further questions.
Comment from Bill Kent:
Bill wanted to highlight that a member called a few days ago and is an ESA claimant. They had been assessed and placed in the WRAG despite being six months from pensionable age and hadn’t work for years due to M.E. This highlights a lack of common sense.
Comment from James Bolton:
James highlighted what is being done to try and get things right. He stated that the recognise that the quality of assessments are not up to the standard that they should be and steps are being taken to redress this with Atos and by bringing in other providers. There are over 100,000 assessments each month. Specifically in relation to fluctuating conditions, Prof Harrington’s input has been helpful. They have published the EBR and literature reviews which deliberately included patients with M.E. They will be responding to the reviews, including Dr Paul Litchfield’s Year 4 annual review, in the near future.
Atos have a distance learning module on fluctuating illnesses, they have a learning set and an evidence-based module that provides information at any time. The module was rewritten as a result of input re M.E. provided by Dr Charles Shepherd and this is being finalized at the moment. Decision-makers have been reminded that they need to consider the timeframes after tribunal in respect of callback. The module will be shared with members of the APPG once finalized. Further comments from APPG members on the module can be fed in at the time of annual review.
James was asked to comment on Atos receiving incentives from DWP. He stated that Atos did not receive incentives; that this was absolutely categorically not true. There is no incentive at all for Atos to say that someone is fit or not for work.
3. Next Meeting
Agreed that Annette will write to the Royal College of General Practitioners (Physicians) requesting a meeting to discuss GP commissioning and GP education and explore an invite to individuals connected with medical student training. A date will be set once we have a response.
Minutes taken by Sonya Chowdhury
Approved by Chair: 4th February 2014