Heather Walker: Yes. There Was Just One Amendment

APPG on ME

21 October 2009 1.30 pm

Des Turner MP (Chair): Ladies andGentlemen. Thank you for coming to the meeting of the APPG on ME. Our star performer today is Yvette Cooper. She is not here yet, but she is definitely coming. I suggest that while we wait for Yvette, we slightly rearrange the agenda to avoid wasting time and deal with minutes and matters arising. Have the minutes been circulated?

Heather Walker: Yes. There was just one amendment.

Chair: Are people happy with the accuracy of the minutes?

Heather Walker: I have one apology to make because Doris Jones was not present at the last meeting, as she was preparing the APPG inquiry meeting for the day. That was my mistake.

Chair: Any other commentson the minutes?

Sir Peter Spencer: Mary Jane Willow has asked me to offer her apologies for today’s meeting. She is not well.

Chair: Okay. Before anyone changes their mind, let us adopt the minutes as a true record and proceed to matters arising. We already have a list of matters that we intend to deal with. The first is this group’s inquiry into NHS services. That is proceeding; we have the evidence and the drafting is in progress. We are approaching a first working draft, which will be circulated among Members—the parliamentarian group—for finalisation and comment. I will also submit it to Charles and Peter for their comments. Hopefully, by December, we will have the final report. I suggest that we make the report the subject of the group’s next meeting, and that we ask a Health Minister to attend to respond to the report. I am not going to tell you what the report contains yet, but it does say some critical things about health service delivery at present.

For me to be present, it would have to be in the first week of December. Is that acceptable to people? That is our target. It gives us a target; it will have to be ready and published. It will not be a glossy report because it will have to be published as cheaply as possible, but it will be there in the first week of December. I nominate the Wednesday of that week. December 2—we have a commitment there. Are people happy with that?

Sir Peter Spencer: On a point of detail, if people are going to come and discuss the paper, we should bear in mind that for some it is more of a challenge to get through a large document than for others. We probably need to agree a date by which the paper will be distributed, so that people have got time to read it, consider it and talk to members of their groups about it.

Chair: We could do that. It depends how quickly we can get the report printed. We could perhaps circulate a summary and the recommendations of the report to everybody.

Sir Peter Spencer: I am just concerned that occasionally, we have inadvertently but incorrectly put people under too much pressure to be able to take an intelligent view of a report that they will feel quite strongly about.

Chair: Yes. The other thing to consider is that it would be good for the report to have the impact of a Select Committee report. You do not get that if you let it dribble out. You have to put it out at once. There are two sides to that. If we circulate it, I strongly suggest that Members regard it as being embargoed until the publication date at that meeting, and be fairly strict about that. We want it to make the maximum impact. Are there any other comments?

Michelle Goldberg: The CFS/ME working group report was quite substantial, and was also given to the Department for Work and Pensions. It had significant responses to the lack of service provision. Is that going to go in as supplementary? Will that be referred to?

Chair: Are you talking about the original CMO’s working group report? That was back in 2002. Clearly, in our report, there is reference to that report and to what has happened since. The answer is yes.

Paul Davis: I am Paul Davis from RiME. I want to say that we are setting up a bank of evidence. RiME has received well over 50 copies of evidence submitted to the inquiry. Having read the large majority of them I can report that, with one exception, they are wholly negative. ME patients are not writing in with concerns saying, “It’s a good start but it needs to be improved”. Rather, they are saying that the basis on which they were set up—the CMO report—was bogus, and we don’t want it.

Chair: We obviously have that evidence, but I don’t want to prejudge the report before it is published. There are obviously a lot of negative comments, and they will be reflected.

Paul Davis: Yes, but can I say one more thing? ME patients are not interested in matters such as structure, finance or the postcode lottery.

Chair: They are if they are on the wrong end of it.

Paul Davis:They are saying that if the nature of the services is no good, those other matters become irrelevant.

Chair: We are virtually starting to discuss the contents of the report without the report, and I don’t think we should do that. Hold that for the next meeting when there will be a full discussion.

Paul Davis: Sure, okay.

Ciaran Farrell:I would like to pick up on the point that Peter made in relation to some specifics. Not everyone here attended the second evidence-taking session. As I am sure you will know, Chair, the Minister Mike O’Brien said some extremely interesting things about the way that the postcode lottery, for example, should be addressed by local action that would be taken by national ME charities, local patient groups and a consortium of local patients and carers.

I do not want to prejudge what may be in the report, but I can see that there is a difficulty regarding the consultation over what would happen. This is an issue where I really feel that all the local groups, as well as the national charities, need to have a very clear input. It seems to me that the inquiry report will only have the impact it seeks, if those sorts of factors can be dealt with effectively through some sort of consultative process.

This is not only about the services involved. There was also the suggestion—I don’t know to what extent the panel will take it up, and I don’t want to prejudge matters—made by Lady Mar about some kind of ME or fatigue nurses in GP clinics. That would also involve fundraising by this local consortium, according to Mr. O’Brien. Consultation on that issue, as well as on a number of other issues,is absolutely key. It is simply about how we think of a mechanism whereby people’s views can be fed in so that they can have a say. The report will be stronger for that.

Chair: Again, we will have to wait until we have the report before we have that discussion. Is there anything else, bearing in mind that the report is not ready yet and has not been published? We will save discussion on the report for when we have it.

Paul Davis: During the oral presentations, ME patients believe that matters outside the terms of reference were allowed by the Chair.

Chair: I was being flexible.

Paul Davis:It was specifically on the issue of lightning process.

Chair: The report will consider that.

Paul Davis: Yes, but ME patients are saying—are you aware that the lightning process is being practised in clinics set up following the CMO report?

Chair: I am aware that it is being practised.

Paul Davis:The terms of reference say that it is about the clinics set up following the CMO report.

Chair: Sorry, I do not see the problem.

Paul Davis: If there are terms of reference, should they not be stuck to?

Chair: The terms of reference do not specify any particular therapy.

Paul Davis: No, but I say to you, is the lightning process being practised in any of the clinics that have been set up?

Chair: It would be pre-empting the report to discuss that. I do not recall any of our evidence suggesting that that is so.

Paul Davis: But you are reported as commenting positively on the lightning process.

Chair: I cannot remember what I have said. It was probably along the lines of, “It sounds as if it is worth looking at.”

Paul Davis: Well, ME patients would say no.

Chair: Let us wait and see.

Ciaran Farrell:On the same point, that has caused a lot of consternation, because there was a certain amount of reporting of a witness to the inquiry speaking at length about the lightning process, and obviously undergoing considerable questioning from panel members about it. I hear what you say about being flexible, but a lot of people in the ME community, including myself, would welcome some kind of statement as to the flexibility that you are using. People cannot see how the lightning process fits into the terms of reference.

Chair: It is just one other attempt at therapy on a list of many.

Christine Harrison: I would like to try and bring a positive note to that. I do not know how to beg or implore that you will get the right answer to this. As people are aware, we had the best service, but for three years we have struggled against everything and we are left with nothing. We have gone through every due process—we have done everything that has been asked of us. We have gone through every procedure, and we are left with nothing. We hope that this will have some impact, because how else do we get people to listen? We have been told that money is not the problem.

Chair: Exactly. It should not be the problem.

Christine Harrison: We have been told that money is not the problem. Obviously, it is an attitude to the illness. We have everybody waiting to take over the service, and we just can’t get it. I hope that you can create some impact for us.

Chair: I devoutly hope so too, Christine.

Shall we move on? The next topic is about the future of the group which, after the general election, is in the melting pot. I shall not be here, and I expect that several other Members will not be here, whether voluntarily or not. We just don’t know.

Dr. Charles Shepherd: Will you still join us if you get elevated to the House of Lords?

Chair: Charles, I think that is about as likely as a squadron of flying pigs.

Janice Kent: I think that we should have some optimism. Let’s look on the positive side.

Chair: I am definitely not counting on that one. We have to identify a prospective victim, if we can—I use the term advisedly. I don’t think that we can do that now, but I hope people will bear it in mind as it is clearly a problem. All-party groups have to be reformed from scratch at the beginning of a new Parliament. However, we can—and shall—leave views about the sort of work that we think the group should be doing, and a draft legacy paper has been tabled. Has everybody got it? It sets out the scope and programme that the next incarnation of the group might wish to follow. Of course, the group will not be bound by it in any shape or form, but this is a fairly comprehensive list of activities. Does anyone have any comments?

Ciaran Farrell: Because this paper has been sent round today, could it be put on the APPG website so that a consultation process can happen? That is simply because it is difficult for us here today to read through and make comments.

Chair: That is fine.

Sir Peter Spencer: That was always the intention.

Chair: We can do that. I know how attached you are to consultation. We can certainly satisfy you.

Ciaran Farrell: Thank you.

Chair: Does anyone have any initial comments?

Joy Birdsey: In the meantime, what is happening? Even though we have a helpline, I have not got any positive help to give people who are really struggling. By the time you get the report out, I was hoping that I would have some positive things to say to the people on the end of my phone. At the moment, I feel like I am banging my head against a brick wall. I have people saying, “I have been rejected for the mobility allowance. I have been rejected again and again. I keep appealing.” I have people saying, “But I was on there, Joy, and now I am not. I am being treated by everybody at the DWP as a psychiatric patient.” From the point of view of my helpline, I think I need more positive feedback from you to give to the media and to help with education. These people should not be treated like this. We have parents and adults—one adult has been told that if he doesn’t get his act together, he will be on £12 a week.

Chair: This is an issue that you should be taking up with Yvette when she arrives. I know that it is a very serious matter—I have dealt with a number of cases in my own casework. I know how difficult it is, despite the fact that the regulations for the disability living allowance actually make provision for the circumstances of ME.

Joy Birdsey:It does, yes.

Chair: But decision makers don’t take any notice.

Joy Birdsey: That’s right.

Chair: I have been able to go along to tribunals with constituents, and successfully get tribunals to recognise this and award it.

Joy Birdsey: We must do something about the tribunals. Several of the people who phone me up after going in front of the appeal courts feel that they have been treated worse than a prisoner. This is serious.

Chair: It is so dependent on the make-up of an individual tribunal panel. If you get a good one, it is marvellous. You can get absolutely inhumane ones at times.

Joy Birdsey: Yes. That has been the experience of quite a few of my group. It is going on and on, and I have nothing to offer.

Chair: This is an issue to take up with the Secretary of State.

Joy Birdsey: Will we have time?

Chair: It is a central issue, so I think that the answer is yes, we will have time for that.

Christine Harrison: Can I just extend that? I am challenging one of the issues in the Green Paper—I was speaking of the document at a meeting. They said that they are not at that stage yet…but if you are going to have a national assessment, you have to have an appeal system alongside it, especially if you have a fluctuating condition. That was one of the things that I thought we should keep an eye on.

Michelle Goldberg:On the same subject, there are a number of things that I have identified in various areas of current law that, to me, are part of the profile of how people are being treated. They are in the Human Rights Act under domestic violence, hate crime and vulnerable adults. Perhaps I can read it to you, because these are the kinds of things that people are coming up against, and they are illegal.

The Human Rights Act, article 3, prohibition of torture, states that no one should be tortured, punished or treated in a way that is degrading or inhuman. It is very serious to breach article 3. It goes into more detail, and makes reference to cases of social services. Article 8 is about having respect for everyone’s family life, home and correspondence, and the right of people to get on with their lives without interference and to control their body. Article 14 is the prohibition of discrimination. That includes many types of discrimination on a number of grounds, which are listed. The courts are likely to accept that the article covers discrimination against someone because they are disabled.

Regarding domestic violence and hate crime, the report has identified physical abuse and also psychological and emotional abuse. It says that domestic violence can include sexual, emotional or financial control. Under psychological or emotional abuse, it lists isolation, threats, manipulation, ridicule, humiliation, aggressiveness, jealousy and criticism. I am sure everybody who has had to deal with the services and the DLA, or a tribunal, would recognise some of those responses.

Then, there is financial abuse, which includes the controlling or withholding money, asking someone to account for every penny and so on. The Government define domestic violence. I would call this institutionalised domestic violence, which is any incident of threatening behaviour, violence or abuse—psychological, financial or emotional—between adults. There is a clear cross-over there.

The definition of a vulnerable adult in the 1997 consultation paper “Who decides?” is a person who is, or may be in need of, community care services, by reason of mental or other disability, age or illness, or being unable to take care of him or herself and unable to protect themselves against significant harm and exploitation. As far as I am concerned, that is exactly what the system is doing. I hope that that was clear in response to the failure of the NHS to provide services, and the problems that people are having with the DLA tribunals. People who are ill don’t need to deal with such things, they just need to be supported and be able to get on with their lives and have the support that they need socially and financially.