MAY BE REPOSTED
There were two important meetings in London on Thursday 20 July in relation to the new medical guidance on ME/CFS that is being prepared by the Department of Work and Pensions (DWP).
This guidance, which will replace the current medical guidance on ME/CFS in the Disability Handbook, is one of the key sources of information that non-medically qualified Decision Makers (DMs) at the DWP make use of when they are assessing claims for Disability Living Allowance and Carer's Allowance.
MORNING MEETING AT THE DWP
Representatives from several of the main national ME/CFS charities, along with two physicians, and a representative for Professor Puri, met with a Principal Medical Adviser and a member of the administrative staff at the DWP to go through the latest draft (ie version 8) of the proposed new guidance.
Further information on this consultation process, and the decision of all the charities involved to yet again reject the latest draft as being unacceptable, can be found in the archive section of the MEA news blog or in ME Essential.
Unfortunately, the composition of this meeting was far from satisfactory.
Firstly, although there was a perfectly adequate representation from the main charities, as well as Dr Nigel Speight and Dr Terry Mitchell, the main person from the DWP who is dealing with this issue had been taken ill the day before and so was unable to attend. But rather than cancel the meeting at the very last minute, the DWP decided to continue.
Secondly, it was announced that none of the team of doctors who are involved in the drafting process, or the neurologist who is advising the DWP, were coming to the meeting.
For approximately two hours there was a discussion that covered all our main areas of disagreement and concern about the content of Version 8.
All the charities were in agreement that this involved:
1 A failure to properly explain right at the onset that the term ME/CFS covers a wide variety of triggers, clinical presentations, possible pathologies, degrees of severity, and responses to treatment. The guidance must therefore reflect this fact.
2 Errors of fact, along with far too many dogmatic statements covering areas where we still do not know the correct answers.
3 A significant bias towards the psychosocial model of causation and management along with a failure to properly refer to research that supports an organic basis, neurological research in particular.
4 Whether there actually needs to be any discussion as to whether ME/CFS is a physical or psychological illness - as this does not happen in DWP guidance for other conditions.
5 The need for DMs to pay far more attention to the views of the person's GP and consultant. In particular, specialist reports should be included early on and not just left to any appeal stage.
6 An inadequate explanation of the varied symptomatology. In particular, the absence of any of the severe neurological symptoms - eg atypical convulsions; loss of speech; loss of swallowing necessitating nasogastric feeding - that are contained in section 4.2.1.2 of the CMO report.
7 A recognition that, although there are no examination findings that are confirmatory of the diagnosis, there can be physical abnormalities present that relate to care and mobility assessments - one example being problems with
balance (as demonstrated by a Romberg test or a Fukuda test to assess vestibular function) that could be very relevant to a DLA mobility award.
8 A management section that fails to reflect that the views of people with ME/CFS, and their physicians, are often very different to the generally positive outcomes for CBT and GET found in clinical trials. If this can be done in the
CMO report, why not do the same here? We also questioned whether it is the role of the DWP to be providing advice on management to DMs in the sort of detail that is in the guidance at present.
9 A totally inadequate description of the disability and state of health experienced by the severly affected sub-group and the way in which this impacts on care and mobility.
And two specific points that were raised:
1 We were very concerned about the views being expressed by the neurologist who is advising the DWP. It was made clear that we did not believe it was acceptable to appoint a neurologist to this very sensitive position who believes that ME/CFS is a functional non-organic syndrome and that there is no evidence of neuropathology in this illness.
2 The ME Association attempted to get a clear answer as to whether, like the Dept of Health, the DWP does now accept the WHO classification of ME and CFS (and PVFS) as being neurological. The DWP position appears to be that this issue is not relevant to these discussions because DLA benefit decisions are made on the level of disability and ill health and not on the name/classiffication of an illness. However, it was pointed out in reply that
it is not that simple - with one very specific reason being that to qualify for higher rate mobility component of DLA a person has to have a physical problem.
The outcome to the meeting is that the DWP is going to take our numerous continuing concerns and disagreements - both general and specific - back to the doctors who are drafting the guidance.
The DWP representatives had clearly listened to what we were saying but all the indications are that the next draft will probably be more about alterations in language - a major rewrite seems very unikely at this stage.
There will then be a further meeting to discuss Version 9.
At the end of the meeting it was announced that the DWP is also looking at the situation regarding appeals procedures. There was an acknowledgement that far too many people are having to go to appeal, and often then succeeding with the help of medical evidence. The intention here appears to be to introduce a
better system for dealing with reviews of decisions before an appeal is made.
Personal note: Dealing with the new benefit guidance is a good example of the way in which many of the national charities - ie 25% Group, AfME, BRAME, MEA, Tymes Trust - can work together and largely agree on key points that need to be put forward on such a crucial issue.
MEETING OF THE ALL PARTY PARLIAMENTARY GROUP ON ME AT THE HOUSE OF COMMONS
Further bad news came in the afternoon as the APPG were due to receive a presentation on the DWP benefits issue from the Rt Hon John Hutton MP, Secretary of State for Work and Pensions. A last minute Cabinet meeting meant that the Minister was unable to attend.
And on yet another baking hot day, with parliament almost at the end of term, there was a very poor attendance of parliamentarians - only two MPs were present.
After a considerable period of delay dealing with an administrative dispute over the previous minutes, Charles Shepherd (MEA) provided a summary of what had happened at the DWP during the morning and went through all the key areas of disagreement with the latest draft. There were around 15 members of the public present, some of whom contributed further points on the difficulties that were often faced in obtaining state benefits. The issue of the Decision Makers Guide was also raised during this period of discussion.
The outcome to this part of the meeting is that the APPG will try to bring the Minister back for the next APPG meeting, which will probably take place in mid to late October. In one way, this could turn out to be more helpful as we may then have what looks like being the almost final draft of this new guidance.
With time now running short, Trish Taylor (AfME) was left with very little opportunity to pass on all the information that had been compiled on the situation regarding new NHS services in England. However, she did have time to
confirm that some of the existing services were under serious threat of closure and that certain aspects of future DoH funding for ME/CFS services were far from clear - in particular where in the baseline budget controlled by PCTs is the funding for the continuation of these ME/CFS services. As a result, AfME
have written to The Rt Hon Patricia Hewitt, Secretary of State, about the
perilous situation now facing some of these new services.
One member of the public was, however, very critical of the new NHS services.
The APPG meeting closed shortly after 3.30pm. Minutes will appear in the normal manner.
Personal comment: I usually try and avoid making any critical personal observations in the summaries I have recently been providing on matters of great interest to the ME Community. However, I know that I am not alone in my deep concern about the behaviour of a very small minority of people who now attend the parliamentary meetings. On Friday afternoon there were a series of unpleasant, aggressive, argumentative and sometimes quite prolonged interventions. There are a vast number of activities that MPs can undertake on a voluntary basis. Getting them interested in attending APPG meetings on ME/CFS is never easy - and we do try very hard. But I now know of at least one previously enthusiastic MP who has no wish to turn up to listen the sort of behaviour that occurred on Friday. I suspect that others will follow if this becomes a regular occurrence.
Dr Charles Shepherd
Honorary Medical Adviser, The ME Association
There were two important meetings in London on Thursday 20 July in relation to the new medical guidance on ME/CFS that is being prepared by the Department of Work and Pensions (DWP).
This guidance, which will replace the current medical guidance on ME/CFS in the Disability Handbook, is one of the key sources of information that non-medically qualified Decision Makers (DMs) at the DWP make use of when they are assessing claims for Disability Living Allowance and Carer's Allowance.
MORNING MEETING AT THE DWP
Representatives from several of the main national ME/CFS charities, along with two physicians, and a representative for Professor Puri, met with a Principal Medical Adviser and a member of the administrative staff at the DWP to go through the latest draft (ie version 8) of the proposed new guidance.
Further information on this consultation process, and the decision of all the charities involved to yet again reject the latest draft as being unacceptable, can be found in the archive section of the MEA news blog or in ME Essential.
Unfortunately, the composition of this meeting was far from satisfactory.
Firstly, although there was a perfectly adequate representation from the main charities, as well as Dr Nigel Speight and Dr Terry Mitchell, the main person from the DWP who is dealing with this issue had been taken ill the day before and so was unable to attend. But rather than cancel the meeting at the very last minute, the DWP decided to continue.
Secondly, it was announced that none of the team of doctors who are involved in the drafting process, or the neurologist who is advising the DWP, were coming to the meeting.
For approximately two hours there was a discussion that covered all our main areas of disagreement and concern about the content of Version 8.
All the charities were in agreement that this involved:
1 A failure to properly explain right at the onset that the term ME/CFS covers a wide variety of triggers, clinical presentations, possible pathologies, degrees of severity, and responses to treatment. The guidance must therefore reflect this fact.
2 Errors of fact, along with far too many dogmatic statements covering areas where we still do not know the correct answers.
3 A significant bias towards the psychosocial model of causation and management along with a failure to properly refer to research that supports an organic basis, neurological research in particular.
4 Whether there actually needs to be any discussion as to whether ME/CFS is a physical or psychological illness - as this does not happen in DWP guidance for other conditions.
5 The need for DMs to pay far more attention to the views of the person's GP and consultant. In particular, specialist reports should be included early on and not just left to any appeal stage.
6 An inadequate explanation of the varied symptomatology. In particular, the absence of any of the severe neurological symptoms - eg atypical convulsions; loss of speech; loss of swallowing necessitating nasogastric feeding - that are contained in section 4.2.1.2 of the CMO report.
7 A recognition that, although there are no examination findings that are confirmatory of the diagnosis, there can be physical abnormalities present that relate to care and mobility assessments - one example being problems with
balance (as demonstrated by a Romberg test or a Fukuda test to assess vestibular function) that could be very relevant to a DLA mobility award.
8 A management section that fails to reflect that the views of people with ME/CFS, and their physicians, are often very different to the generally positive outcomes for CBT and GET found in clinical trials. If this can be done in the
CMO report, why not do the same here? We also questioned whether it is the role of the DWP to be providing advice on management to DMs in the sort of detail that is in the guidance at present.
9 A totally inadequate description of the disability and state of health experienced by the severly affected sub-group and the way in which this impacts on care and mobility.
And two specific points that were raised:
1 We were very concerned about the views being expressed by the neurologist who is advising the DWP. It was made clear that we did not believe it was acceptable to appoint a neurologist to this very sensitive position who believes that ME/CFS is a functional non-organic syndrome and that there is no evidence of neuropathology in this illness.
2 The ME Association attempted to get a clear answer as to whether, like the Dept of Health, the DWP does now accept the WHO classification of ME and CFS (and PVFS) as being neurological. The DWP position appears to be that this issue is not relevant to these discussions because DLA benefit decisions are made on the level of disability and ill health and not on the name/classiffication of an illness. However, it was pointed out in reply that
it is not that simple - with one very specific reason being that to qualify for higher rate mobility component of DLA a person has to have a physical problem.
The outcome to the meeting is that the DWP is going to take our numerous continuing concerns and disagreements - both general and specific - back to the doctors who are drafting the guidance.
The DWP representatives had clearly listened to what we were saying but all the indications are that the next draft will probably be more about alterations in language - a major rewrite seems very unikely at this stage.
There will then be a further meeting to discuss Version 9.
At the end of the meeting it was announced that the DWP is also looking at the situation regarding appeals procedures. There was an acknowledgement that far too many people are having to go to appeal, and often then succeeding with the help of medical evidence. The intention here appears to be to introduce a
better system for dealing with reviews of decisions before an appeal is made.
Personal note: Dealing with the new benefit guidance is a good example of the way in which many of the national charities - ie 25% Group, AfME, BRAME, MEA, Tymes Trust - can work together and largely agree on key points that need to be put forward on such a crucial issue.
MEETING OF THE ALL PARTY PARLIAMENTARY GROUP ON ME AT THE HOUSE OF COMMONS
Further bad news came in the afternoon as the APPG were due to receive a presentation on the DWP benefits issue from the Rt Hon John Hutton MP, Secretary of State for Work and Pensions. A last minute Cabinet meeting meant that the Minister was unable to attend.
And on yet another baking hot day, with parliament almost at the end of term, there was a very poor attendance of parliamentarians - only two MPs were present.
After a considerable period of delay dealing with an administrative dispute over the previous minutes, Charles Shepherd (MEA) provided a summary of what had happened at the DWP during the morning and went through all the key areas of disagreement with the latest draft. There were around 15 members of the public present, some of whom contributed further points on the difficulties that were often faced in obtaining state benefits. The issue of the Decision Makers Guide was also raised during this period of discussion.
The outcome to this part of the meeting is that the APPG will try to bring the Minister back for the next APPG meeting, which will probably take place in mid to late October. In one way, this could turn out to be more helpful as we may then have what looks like being the almost final draft of this new guidance.
With time now running short, Trish Taylor (AfME) was left with very little opportunity to pass on all the information that had been compiled on the situation regarding new NHS services in England. However, she did have time to
confirm that some of the existing services were under serious threat of closure and that certain aspects of future DoH funding for ME/CFS services were far from clear - in particular where in the baseline budget controlled by PCTs is the funding for the continuation of these ME/CFS services. As a result, AfME
have written to The Rt Hon Patricia Hewitt, Secretary of State, about the
perilous situation now facing some of these new services.
One member of the public was, however, very critical of the new NHS services.
The APPG meeting closed shortly after 3.30pm. Minutes will appear in the normal manner.
Personal comment: I usually try and avoid making any critical personal observations in the summaries I have recently been providing on matters of great interest to the ME Community. However, I know that I am not alone in my deep concern about the behaviour of a very small minority of people who now attend the parliamentary meetings. On Friday afternoon there were a series of unpleasant, aggressive, argumentative and sometimes quite prolonged interventions. There are a vast number of activities that MPs can undertake on a voluntary basis. Getting them interested in attending APPG meetings on ME/CFS is never easy - and we do try very hard. But I now know of at least one previously enthusiastic MP who has no wish to turn up to listen the sort of behaviour that occurred on Friday. I suspect that others will follow if this becomes a regular occurrence.
Dr Charles Shepherd
Honorary Medical Adviser, The ME Association