DWP DLA REFORMS

Recently, Countess of Mar contacted IiME to ask if we have contacts who would be willing to participate in the review being initiated by the Depart of Work and Pensions into their DLA assessment regulations.

IiME remain profoundly sceptical of government plans for assessing people with ME but have decided to comment on this review and to pass on to supporters information regarding the opportunity to participate.

Below we publish the letter from James Bolton from the DWP which was sent to Countess of Mar and we then also show the points we made which we asked to be passed on to James Bolton at DWP.

If any of our supporters are interested in taking part in this then you are welcome to forward your details to us which will be passed on to Countess of Mar. We advise you to look at the points we have made below and also at the DWP site given (http://www.dwp.gov.uk/policy/welfare-reform/legislation-and-key-documents/welfare-reform-bill-2011/personal-independence-payment-briefing/).  

As I'm sure you are aware, on Monday 9th May the Department for Work and Pensions published initial draft assessment regulations/criteria for Personal Independence Payment. We are currently seeking views on this initial draft and plan to test its likely impact during the summer. As part of the testing we're keen to understand better the likely impact on some specific impairment groups. At this point, one key impairment group we'd like to look at is ME.

We approached Action for ME a few weeks ago to ask if they would be able and willing to help us to secure volunteers for our testing. Although they are interested, unfortunately their CEO is away until the 22 June and his clearance would be needed before they could do anything, and ideally we had hoped for volunteers to be identified by 30 June. We've therefore agreed with Action for ME that in the meantime, it would be sensible for us to raise this opportunity with other members of Forward-ME who may be interested in being involved. We're approaching particular disability organisations to help with this as we're keen to provide an opportunity for representative groups to be involved in the testing process. Such organisations are also likely to have strong links with their members which we hope would help us to secure volunteers who might be harder for us to reach, ensuring that we capture how the draft criteria are working across a range of customers.

To outline our plans for testing and what individuals should expect:

Taking part is voluntary and will not affect any benefits an individual is claiming or may claim in the future.

Taking part will involve having a single, one hour, face-to-face appointment with a healthcare professional from G4S Medical Services, working on behalf of DWP.

An individual can change their mind about participating at any time, for any reason. If they wish to opt out after their details have been passed to me, they should call me directly and I'll inform G4S.

The Department will pass only volunteer contact details to G4S, not DLA award rate combination.

G4S will be carrying out appointments between 27 June and the end of August/beginning of September.

G4S will call each volunteer to arrange a suitable date and time for the appointment. They are likely to try to organise appointments 2-3 weeks in advance, so these volunteers would be called between July and August. This phonecall will be followed by a letter from G4S to confirm the details of the appointment.

The majority of appointments will be at the volunteer's home, though they can ask to go to an assessment centre instead if they would prefer this.

Individuals can have a family member or friend with them throughout the appointment.

During the appointment, the healthcare professional will confirm the individual’s identity and obtain written consent. They will ask about the impact of the individual’s health condition or impairment and there will also be a brief clinical examination, relevant to the individual's impairment.

After the completed appointment, the individual will receive a £30 'Love to Spend' voucher as a token of appreciation. If the appointment took place at an assessment centre, any reasonable travel costs will be refunded (for the individual and a companion if they had one).

The information collected will be treated in the strictest confidence; all records will be anonymous and will be destroyed after the testing.

To enable us to look in detail at the impact of the assessment on individuals with ME we'd be looking to secure ideally 65 volunteers from across the DLA rate combinations. We would need to know the customer's name, telephone number and address and their current DLA award rate combination (for our internal use only - if they're unsure of this, we could look it up for them using their National Insurance Number). The Department would pass these details to G4S who would call the individual to arrange a suitable appointment. In order to enable G4S to organise appointments in time, we would ideally need to have this information by 30 June 2011. G4S may not call all those who initially agree to take part as they may secure enough volunteers without having to do so.

For background information, the initial draft assessment regulations/criteria for Personal Independence Payment, an explanatory technical note and six additional policy briefings can be found at the below link:

http://www.dwp.gov.uk/policy/welfare-reform/legislation-and-key-documents/welfare-reform-bill-2011/personal-independence-payment-briefing/

I would be grateful if you could let me know if this is something that Forward-ME would be able to pass to your member organisations, to see if they would like to be involved. If anyone has any questions, they can reach me on the number below.

Kind regards

James

James Bolton | Deputy Chief Medical Adviser | Health Work & Well-being Directorate | Department for Work & Pensions, Caxton House, Tothill Street, London SW1H 9NA


IiME Response


We are pleased that the Department of Work and Pensions are currently seeking views on their initial draft assessment regulations/criteria for Personal Independence Payment and that they state that, as part of the testing they are keen to understand better the likely impact on some specific impairment groups – specifically those with ME.

It would be wonderful if the DWP really did take on board the views, and needs of people with ME.

As many know already people with ME are worried about the DLA reforms. Based on real-life, past and current experience with NICE, PACE and Fatigue Clinic consultations people with ME generally have no confidence in their views being taken on board by establishment organisations. Some of the behaviour and actions of the Atos organisation are scandalous and we could well do without yet another business being employed merely to deny benefits to those in need.

We are sceptical of the DWP’s objective with this initiative and fear their main reason is merely to be able to tick a box that patients were consulted as required by the process.  

However, even if one were to give the government the benefit of the doubt on this matter (and the track records of recent governments are hardly convincing when one looks at the cases of people with ME), then the matter of education again comes to the fore.

We understand that participating in this process will involve a single, one hour, face-to-face appointment with a healthcare professional from the private organisation G4S Medical Services, who are working on behalf of the DWP.

Once again this term “healthcare professional” is used.

Yet without a proper understanding of ME and what it really is then we doubt that a company who are essentially employed by the government to save money would be able to perform a proper assessment satisfactorily or objectively. We say this because this is exactly what happens now with many patients being forced to appeal or who are effectively rejected as valid claimants.

The problems with benefits for people with ME stem from the education given to the medical assessors, or lack of it, and until this is tackled then people with ME will always be at a disadvantage no matter how many consultations there are. This is already a problem with many GPs who do not understand the disease and who treat it incorrectly.

Perhaps a better way for the DWP to be made aware of the situation with benefits and ME patients would be to look into cases where people with ME have had their benefits taken away or consider attending tribunals where ME patients’ cases are being reviewed.

Perhaps we should be identifying the existing multitude of cases where sick and vulnerable people have been denied the benefits that this society purports to give to those in need.

There are objective tests that measure functionality such as the VO2Max test and a repeat test has been shown to provide evidence of post-exertional malaise/reduction in performance in people with ME. Perhaps this is something the DWP should be made aware of.

There is a good explanation of it by Professor Snell in Invest in ME’s Journal of IiME Volume 5 Issue 1 at this address -

http://www.investinme.org/Documents/Journals/Journal%20of%20IiME%20Vol%205%20Issue%201.pdf 

As there may be patients who nevertheless would be willing to participate and so we are happy to distribute this information to our supporters.

We would suggest that James Bolton at the DWP needs to clarify the following from his letter to you - and this advice we would pass on to those considering participation –

 

 “Taking part is voluntary and will not affect any benefits an individual is claiming or may claim in the future.”
IIME: How can this be assured? What steps will the DWP take to ensure this is the case? 
 
“Taking part will involve having a single, one hour, face-to-face appointment with a healthcare professional from G4S Medical Services, working on behalf of DWP.”
IIME: As mentioned already what qualifications, specifically with regard to the biomedical research into ME, does the “healthcare professional” possess? The oft quoted statement that the tests are not disease specific but rather are tests of functionality is, in fact, nonsensical when applied to ME. Post-exertional malaise is a hall-mark of ME and that may not be fully apparent until these superficial tests have been completed and the patient is looking at a prolonged period to recover.
“During the appointment, the healthcare professional will confirm the individual’s identity and obtain written consent. They will ask about the impact of the individual’s health condition or impairment and there will also be a brief clinical examination, relevant to the individual's impairment.”
 
IIME: What information does the “healthcare professional” have about ME? How would it be possible to state that a clinical examination is to be made if the clinician has no real knowledge of ME and, therefore, has no knowledge or experience with regard to the impairments? If somebody is not knowledgeable about the disease, or holds false beliefs with regard to the disease, then how is it possible to assess the condition?         

 

“The information collected will be treated in the strictest confidence; all records will be anonymous and will be destroyed after the testing.”

IIME:

We would suggest that both the DWP and G4S confirm, in writing, to any participant  that all personal details have been destroyed when that action has been performed and that this is not left to the ME patient to assume, or to request.

“To enable us to look in detail at the impact of the assessment on individuals with ME we'd be looking to secure ideally 65 volunteers from across the DLA rate combinations. We would need to know the customer's name, telephone number and address and their current DLA award rate combination (for our internal use only - if they're unsure of this, we could look it up for them using their National Insurance Number). The Department would pass these details to G4S who would call the individual to arrange a suitable appointment. In order to enable G4S to organise appointments in time, we would ideally need to have this information by 30 June 2011. G4S may not call all those who initially agree to take part as they may secure enough volunteers without having to do so.
IIME: If a patient diagnosed with ME participates then the thorny question of correct diagnosis needs to be discussed. What criteria have been used to diagnose a person with ME? We know that fatigue clinics are not the best places to have diagnosed ME. What criteria and what examinations will have been performed to arrive at the diagnosis of ME?

 

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Last Update: 21 June 2011