All Party Parliamentary Group for ME













Invest in ME's submission to the APPG for ME on 3rd February 2014

Invest in ME sent apologies for absence, due to sickness and pressures of work, to the APPG secretariat. We asked that our submission be considered in discussions and added to the minutes from the meeting.

APPG AGENDA

An APPG for ME AGM was held on 3rd February 2014

  1. Welcome by the Chair
  2. Guest speaker: Minister of State for Disabled People, Mike Penning MP
    • Question and answer session with Parliamentarians

    • Further questions from guests
  3. Minutes of the last meeting
  4. Matters arising
  5. Research update
  6. Date of next meeting
  7. Any other business

Invest in ME's submission to the APPG for ME on 3rd February 2014


Questions from Invest in ME to Mike Penning, Minister of State for Disabled People Mike Penning

1/

It is clear from many of our supporters that GPs are often known to refuse referrals for their ME 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?

How are they supposed to get better if their personal physician is ignorant of the disease and refuses to facilitate the possibility of improved treatment?

This adds further stress for patients and their families and enforces again the view that ME patients are subject to systemic bias in the healthcare system and ignored by disabilities agencies.

Effectively ME patients are discriminated against.

2/

The failure of government policy on ME for a generation means that few patients have decent healthcare or prognosis once they have the diagnosis of ME.

This makes the impact of ATOS and welfare reforms even harder than usual for ME patients as no one seems to take responsibility for this group of patients even though many acknowledge the shameful treatment these patients have received (in Norway the government officially apologised for their treatment of ME patients).

How is it possible then for Atos medical assessors to be able to give prognoses of ME patients' ability to return to work based on one interview and with no knowledge of the disease and no understanding of the effects of the disease and especially the consequences from post-exertional malaise?

It is obvious from patient experiences that ATOS are acting purely to enforce DWP policy to deny benefits - seemingly influenced by the outdated establishment bias which has been allowed to be built up by vested interests.

3/

The role of the ministry is to improve the health and safety system, simplifying the welfare system and making sure work pays. Helping people to find and stay in work.

It is plainly obvious that these objectives are completely failing in being materialised for ME patients.

We would respectfully suggest that the minister consider the following in relation to the ministry’s objectives -

  • The health and safety of patients has not been improved and continues to be so poor that severe deterioration and even deaths from ME are becoming more frequent.

  • The welfare system for ME patients is a scandal - with little understanding of the disease being exhibited by DWP, or their contracted third-party organisations such as ATOS, and not even healthcare practitioners.

  • ·Making sure work pays is a meaningless concept if people are denied any hope of development of treatments or cures for this disease due to lack of proper research being funded by those charged with that responsibility (such as the MRC).

The minister, we feel, should consider the deplorable state in which successive governments have left ME patients.

An entire section of the population is discriminated against on a regular basis - something a Minister for Disability Issues really ought to consider a major priority.

The Chairman and Board of Invest in ME

www.investinme.org

The Chairman and Board of Invest in ME


www.investinme.org
APPG MINUTES

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.

Some of the questions that were asked have been added here -

2.1 Questions

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 Phillida (Invest in ME):

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.




Last Update 06 February 2014

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