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In November 2012 I wrote to Norman Lamb, the Minister of State for Care and Support, questioning some historic abusive practices on patients suffering from the physical neurological disease Myalgic Encephalitis (M.E.). ( Letter 1) In December I received the enclosed letter from a person at the Ministry of Health. (Letter 2) Once again I wrote to Norman Lamb, enclosing a copy of my original letter and the reply, sending it by recorded delivery to the House of Commons. (Letter 3) Yet again there was no answer from Mr Lamb himself, but a four page letter explaining why, but still not addressing the questions I had asked. (Letter 4)
I was quite surprised by his silence, given that he had spoken at the Invest in ME Conference in 2007 Youtube Link where he explained how some people who act as advisors for the government's Works and Pensions also act as consultants for insurance companies. They have an interest in preventing acceptance of medical claims. There is clearly a conflict of interests. He emphasised how important it was that we get the Government to act. I held out great hope that at last, the rulings of the World Health Organisation (WHO) would be followed. Now that Mr Lamb is in Government, he has become part of the establishment. He has chosen to ignore his own advice, allowing doctors and psychiatrists to ignore the World Health Organisation........... and so the abuse of the most vulnerable by the most powerful continues unabated.
Below are copies of the various letters. I have also included my comments in red in Letter No 4.
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I'm very pleased to have been invited to address you this morning and I wanted to start by telling you about my first real encounter with ME. It was in my previous life as an employment law solicitor. My specialism was in Employment Law and I led a specialist employment unit in the firm that I was with in Norwich before I was elected to Parliament in 2001.
And I guess that probably about nine years ago a lady came to see me with her husband who was facing early retirement from a bank. She was employed by one of the high street banks; I probably ought not to say which one it was, but she suffered from M.E. And she was told by her bank that she didn't qualify for an early retirement pension because they weren't convinced that this was a long-term condition.... and the criteria that qualified for the pension under their scheme required the employed to demonstrate that they were suffering from a long-term condition, and so she faced long-term financial insecurity as a result of this decision by the bank.
They came to see me to fight their corner to try to persuade the bank to change their mind, and from memory, it took the best part of nine months to win the case. We didn't have, in the end, to go to court or tribunal, but we did manage to persuade the bank that she should be entitled to a pension, and she secured a pension. But what that said to me was that that lady had the benefit, first of all of her husband who was willing to fight with her to secure the financial entitlement she should have had from the bank, but also that they had the money because although I'm sure that I'm very good value for money, nonetheless it was expensive, and now I'm no longer a solicitor or a practicing solicitor I can complain like everybody else about the cost of solicitors, but at that time I was benefitting from it, but it cost them a lot of money to fight their case, and they won.
What I was left with was a sense of was that for, alongside that case, there are so many other people who don't have the capacity either in terms of having a loved one who'll fight with them or the financial capacity to fight their case, and the situation that they were in is, in a sense, is multiplied even more by people at the bottom end of the scale who are dependant on benefits. I'm conscious that there are people all over the place, including constituencies of mine, who have endless battles to convince the Department of Works and Pensions that they should be entitled to benefit because of their condition.
I'm also aware, and this is something that The Gibson Committee highlighted last year, that some people who are working as advisors to the Department of Works and Pensions are also act as consultants for insurance companies who have an interest in preventing widespread acceptance of claims for medical insurance and whether they are fighting legitimately and honestly on behalf of the DWP, there is no doubt there is a conflict of interests there, which, for a lawyer, is not really acceptable.
For me it just highlighted the extent to which people do suffer from ME are fighting often a very lonely battle and it comes down to the fact that because it's often not readily identifiable looking at the individual concerned, that because there is still no clear understanding of the cause or causes of the condition, people, I think, are left massively disadvantaged.
I'm also particularly anxious and concerned about the plight of youngsters, children and teenagers, who end up with ME. The family that we knew a little bit who had a child at the same school as our sons, ended up with the child, at the age of eleven, having ME and so, not getting schooling, not getting social contact, with all other children were getting and then not getting support that they need to make their life bearable and so it's a real fight that we've got to convince, not just the Department of Health, but society in general of the significance and reality of this condition and ensuring that it gets the attention that it deserves. And above all else the research funding to try to establish what the real causes of the condition, are. I was struck and when I was reading up about the extent of the problem that the Chief Medical Officer, had estimated that there are up to two hundred and fifty thousand people in this country suffering from ME, because it's very hard to actually be accurate about the numbers of people who are affected, but that was his best estimate of the potential extent of the problem.
You can imagine then the impact on the national economy if you look at it in current financial terms of so many people who are unable to work as a result of this condition. If it was estimated that in 2004 the cost to the economy was something in the region of three and a half billion pounds; well if it was that in 2004 then it's going to be significantly higher than that now.
It seems to me therefore, that the case put by The Gibson Committee and of course by Invest in ME and the other action groups, the case for investment in identifying the causes of this condition is very long overdue. It's up to all of us, particularly those of us involved in the political arena to put pressure on Government Ministers to acknowledge the importance of this condition.
I understand that it's probably about five times as many people suffering from ME as suffer from AIDS in this country and yet it's one of those situations where because there has been an awful lot of media attention given to the local phenomenon of HIV and AIDS, it then attracts the investment into research. This condition, I now understand that this country is not unusual in it's failure to acknowledge the importance of getting to the root of this problem; it's an international phenomenon that governments simply do not give it sufficient attention or investment, but there is a need for index funding for biomedical research, that focuses, as we all know, has been very much on psychological research. If we are to really get to the bottom of it, there must be investments on biomedical research as well. So the call from The Gibson Committee is one that I completely endorse for the government and the MRC to work with the ME community, to achieve a proper understanding, to achieve funding for biomedical research and also to challenge the unjust perceptions that still so many people have. That bank that just didn't take her situation seriously in the case of that I was fighting, that's to challenge those perceptions which are so damaging and which make the lives of people who suffer from ME, and their families, even more challenging, because when you're not listened to and you're not taken seriously, and you're suffering from a debilitating condition then it really is something of a nightmare.
I also wanted to just highlight another area, of, I think, massive current concern in this country, and that is: what's happening as a result of the deficit that's affecting much of our Health Service. We hear on the grapevine that The Government, this week, is likely to make some announcements about the finances of the NHS as a whole We expect them to say possibly the day or two before the Local Elections on Thursday, that the NHS has broken even, that it is now enjoying a small surplus and that this will be lauded as a great success after a very difficult year. But it is the casualties of that attack on deficit which causes me very real concern.
The Health Select Committee in December, issued a report, published a report, on deficits, and what they found was that it's always the soft targets that are first to get hit when funding cutbacks take place, and so they've highlighted particularly cutbacks in funding for mental health services. I see that in my own county of Norfolk. If you're someone in a rural area like North Norfolk and you suffer from mental health problems and you lose access to support services, then it's pretty bleak for you. You can't often get transport to the bigger centres, so you are left very isolated in your village where you might live, unable to access services, services withdrawn in those rural areas.
But the same is happening with ME. Now I know particularly about my own part of the world, but talking to Sue beforehand, I hear that the situation is repeated in other parts of the country.
We have a Specialist Centre at the James Pagett Hospital in Galston near Great Yarmouth. Terry Mitchell, Dr Terry Mitchell whose done a lot of good work on ME heads that unit, although he's now retiring. I talked to him this morning about the funding situation. They still do not know what funding they will get for this financial year. They're already into this financial year and they are left in a state of total uncertainty. This is the tranche of money from the eight and a half million that was allocated, I think in 2004 by The Government. They were told, without any consultation, that they were going to suffer a twenty five percent cutback in that funding for this financial year. They challenged that, but they haven't been given answer yet, so they are left in a state of complete uncertainty, quite apart from the patients that they serve.
I saw in my advice surgery a gentleman in North Norfolk in rural North Norfolk, who had a return appointment. He had been going to this clinic for some time. He had a return appointment in December 2006 last year. That was cancelled and he is still waiting for an appointment. Now when I rang Terry Mitchell's surgery this morning, or clinic this morning, his PA first of all told me that they have a hundred referrals sitting there in the office that they can't do anything with. They've been told by the Primary Care Trust that they can't send out the pre-appointment questionnaire because that would be admitting to a waiting list. This is the way in which targets distort the way in which people behave.
So those people who have been referred by their GPs to a specialist clinic are just waiting, not knowing what is going to happen, whether they are going to get an appointment, and that includes the constituent who came to see me. Terry Mitchell is left both angry and totally frustrated by this situation because he has an enormous commitment to tackling ME and to supporting these very vulnerable people, and yet he has hands tied behind his back.
Then I was hearing, as I said, talking to Sue this morning, that the clinic in the North East has gone apparently. Apparently they have some funding to refer people to Leeds, but that clinic only has guaranteed funding for a year. The Liverpool clinic has only guaranteed funding for a year. Those are the casualties of the Governments political commitments to clear deficits in a very tight timescale. It seems to me that all too often it's the most vulnerable people of all that suffer the impact when financial cutbacks take place.
My great frustration is that we supported wholeheartedly the increased investment in our Health Service. The NHS in this country had suffered chronic underfunding for a very long time; we were way behind the European average for funding of Health Services. That extra investment has brought us up to the average, but of course the average is then starting to move away from us again as other countries increase their funding for Health Services. But despite that extra investment, and a lot of the money has gone to just catch up because of this cumulative effect of under investment. It seems terribly depressing that key important services for very vulnerable people are now being cut back in this financial year.
So, it's a very challenging situation we face, but this is an incredibly important battle. I understand from Sue that she's written to the offices oh.... it was another representative from Norfolk who told me this ... that she had written to the offices of The Parliamentary Group, The All Party Parliamentary Group, suggesting that they should call for a meeting with The Minister to discuss with The Minister directly the importance of giving attention to this condition and giving it the investment and research that is so badly needed. That is an initiative that I wholeheartedly support.If I can support the efforts to put pressure on Ministers to acknowledge the seriousness of the situation, then I'm very happy to do so. So I will end there. I'm very happy to take any questions, but thank you very much for inviting me today. Thank you.