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5 May 2009 : Column 7WH—continued
9.54 am
Mr. Roger Williams (Brecon and Radnorshire) (LD): I congratulate the hon. Member for Reading, East (Mr. Wilson) on obtaining the debate, which will come as a great encouragement and boost to the morale of many who suffer from fibromyalgia. They will take satisfaction from the fact that the illness has been given prominence through this debate. Part of the problem for sufferers is that the condition takes so long to be recognised by the health services that they often come to believe that they are in some way responsible or guilty. They exhibit symptoms but are without the support necessary to bring some relief.
I also congratulate the hon. Gentleman, who made a comprehensive speech, on his work, as chairman of the all-party group on fibromyalgia, in bringing together sufferers, as well as medical professionals and academics who now recognise the condition as a proper medical condition and are working in centres of excellence to alleviate it. Part of the problem is that we have very little idea of what causes the condition—whether the genetic make-up of the individuals or an environmental aspect that they have experienced. Evidence is now being gathered relating the absence of serotonin to the symptoms of the disease. If that can be established, a much more profound and substantial method of treatment could be achieved.
Much of the problem is that sufferers experience a delay in diagnosis, during which there is often a deterioration in the condition and its symptoms, so guidance for GPs, to help them to identify the condition, would represent
a great step forward in supporting sufferers. My constituency is rather sparsely populated, so it is often difficult for my constituents to get to support groups and to meet other people suffering from the condition. I have seen evidence that meeting other sufferers to discuss their experiences, symptoms and treatment can give individuals great confidence that there is a possibility that something can be achieved to alleviate their symptoms.
Sometimes, individual experiences of the condition count for as much as anything else. I have received correspondence on the matter from one of my constituents, and if Members will bear with me, I shall read out a couple of her comments. They spell out many of the messages that we heard from the hon. Gentleman. Mrs. Lewis from Ystradgynlais wrote:
“I first started having a muscular problem in March 2001 and was originally treated for a frozen shoulder. Gradually, I started developing other symptoms...widespread pain varying in where it would be from one day to the next, poor sleep patterns due to waking in pain and discomfort...severe migraines, tinnitus, all of which can be conditions on their own but added together form part of Fibromyalgia.
After nearly 2 years of a growing list of symptoms, I was referred to a rheumatologist with a queried diagnosis of Lupus, an auto immune condition. He, quite rudely, disagreed with this diagnosis on the basis that I could touch my toes and was flexible but ignored the comments that after 4 years of yoga, I was more than able to do these things but would suffer greatly afterwards. He never investigated further to see what other cause could be behind my symptoms.
Two weeks later after a conversation with a colleague...it was suggested to me that I may have FM. On looking it up online, I asked my doctor if this could be the possible cause and on researching it, he agreed with this diagnosis and has been treating me for this condition ever since.
As time has gone on, my condition has deteriorated and more symptoms...now afflict me. I am shortly to join in a pain management programme for which I will have to travel 55 miles there and then back each way once a week.
I have every confidence in my doctor’s ability to treat me but there is a lot of ignorance and misconception about this condition. The NHS recognises that this is a very real syndrome yet many doctors and even the consultants lack this knowledge and refuse to accept it.”
She goes on to talk about the difficulties of obtaining benefits:
“And as for the DWP. . . they also have difficulty accepting this condition exists and as there is a variability of problems that presents and the pain levels can fluctuate, then they err on the side of caution and turn many of us down for the benefits we need to live on.
All of us sufferers have good days, bad days, and very bad days. The symptoms can be few one day and then flare up badly and cause long lasting spells when one is unable to function without a great deal of help. Yet the funding for this help via the benefits system is so hard to get. Surely it should be a lot easier than us being made to feel like frauds when trying to claim DLA for example?”
That letter expresses better than I can the frustrations and concerns felt by the sufferers.
I know that it is difficult for the medical profession to deal with a condition that has such a range of symptoms, especially when the origin and cause have yet to be established. The Minister would do well to take on board the comments made by the hon. Member for Reading, East and do what she can to ensure that the condition is recognised, that GPs diagnose it earlier than in the past and that provision is made for help through pain relief and encouraging good sleeping patterns, which make such a difference to the sufferers. I ask the Minister to take on board all those concerns.
10.1 am
Norman Lamb (North Norfolk) (LD): I congratulate the hon. Member for Reading, East (Mr. Wilson) on securing the debate. This is one of those occasions when all the parties can come together to make the case for improving awareness of the condition both among the public and the medical profession—particularly in primary care.
Fibromyalgia is something of a Cinderella condition; it is widely misunderstood and there is a great deal of ignorance about it, which has a significant impact on those who suffer from it. It is right to acknowledge fibromyalgia awareness day, which is on 12 May. It is a moment to concentrate minds and to focus the attention of the Department of Health, the national health service and NICE on a more effective approach to tackling the condition.
In securing the debate, the hon. Gentleman has already demonstrated one notable advance—he has had a response from NICE. I will return to the role of NICE later, but it is shocking that it has taken two years for it to respond to a request for guidance on the treatment of the condition.
The hon. Gentleman and my hon. Friend the Member for Brecon and Radnorshire (Mr. Williams) have both highlighted just how awful the condition is. Sufferers often have a sense that no one believes them, especially when they have to apply for benefits because they cannot keep their employment. They feel that no one believes that the condition is disabling, so they are left utterly alone. It is a chronic condition, and one that applies particularly to women. Its impact on relationships, social lives and the capacity to work is substantial. It is often the case that conditions such as fibromyalgia, myalgic encephalomyelitis and chronic fatigue syndrome have a greater impact on people’s lives and their capacity to function as human beings than many conditions that attract much greater attention in public discourse and in Parliament.
It was a breakthrough when the chief medical officer acknowledged the significance of the condition and made a clear plea for action to be taken. As the hon. Member for Reading, East mentioned in his speech, a major initiative to widen access to pain services is badly needed.
The Parliamentary Under-Secretary of State for Health (Ann Keen) indicated assent.
Norman Lamb: I am pleased to see the Minister nodding, but she must follow the advice. We need to find an agreed way forward.
The hon. Gentleman talked very effectively about the problems of securing a diagnosis. It is hard to convince GPs and others that the problem is genuine. A newspaper article quoted Julia Fitzgerald, who, after eventually securing a diagnosis, was offered antidepressants. That was the medical profession’s response to her condition. Moreover, the fact that it takes between two and four clinicians to secure a diagnosis is simply unacceptable.
As the hon. Gentleman said, the priority must be to improve the training of GPs and other members of the medical profession, to ensure that when a patient presents with the condition they receive greater understanding. It is not good enough just to look at the training of new
doctors coming through the system. We need to focus on continuing professional development for those who are already in post and who are all too often failing to give their patients an adequate or accurate diagnosis.
The hon. Gentleman referred to some of the parliamentary questions that have been raised about fibromyalgia. Reading the answers, one cannot escape from the sense that the Department of Health has a lack of interest in the issue, so this is a good occasion for the Minister to reassure us that that is not the case. In one answer, she said:
“We are unaware of any plans the National Institute for Health and Clinical excellence may have to publish guidelines on the treatment...There are no specific plans to improve the treatment for those living with fibromyalgia.”—[Official Report, 30 June 2008; Vol. 478, c. 656W.]
“We have made no assessment of the causes of fibromyalgia.”—[Official Report, 28 April 2008; Vol. 475, c. 148W.]
“Information on the number of people diagnosed with fibromyalgia is not collected.”—[Official Report, 17 December 2007; Vol. 469, c. 1207W.]
“We are not aware of any progress having been made into the causes of, or treatment for, fibromyalgia.”—[Official Report, 21 November 2007; Vol. 467, c. 998W.]
I am not underestimating the complexity of the condition, but those answers suggest a lack of focus. If the Minister can reassure us that there will be a renewed focus, concentrating particularly on the chief medical officer’s clear statement, that would provide a degree of comfort to sufferers.
The hon. Member for Reading, East talked about getting right the referral from primary care to a specialist centre. Such a problem is not unique to fibromyalgia. Someone I am trying to help at the moment is having a similar experience with a mental health condition. Persuading the NHS to make the right referral can be a real challenge. Changing or adapting the choose and book system to ensure that when any clinician across the country is faced with a patient with such a condition—or has the potential to suffer from it—they can point the patient to the right specialist centre wherever they live would be an enormous advance.
I return to the role of NICE. It is scandalous that it has managed to ignore for two years a clear request for guidance on the treatment of fibromyalgia. We hear that the application was unsuccessful. I now ask the Minister to engage with NICE—
Ann Keen: Will the hon. Gentleman accept that NICE is independent? We have discussed the various roles of NICE in this Chamber, and all hon. Members have accepted the importance of its independence. That is the issue that will cause me difficulty in this debate.
Norman Lamb: I am grateful to the Minister for that intervention and I would be happy if she could offer further clarity. I fully accept the absolute importance of the independence of NICE, but is she able to request that it investigate a particular condition and consider providing guidance?
Ann Keen: The importance of NICE’s independence makes things difficult. However, I am confident that the debate will assist in other ways.
Norman Lamb: None the less, I should like the Minister to consider whether the governance of NICE allows her to make such a request. A request would not challenge NICE’s independence—it is not an order. Will she request NICE to investigate the possibility of preparing guidance on the treatment of fibromyalgia? That would be a very valuable step for her to take.
Bob Spink (Castle Point) (Ind): I apologise for arriving late, Mr. Gale—I had another appointment—but I have taken a great interest in this matter in the House, as the hon. Gentleman will know. Does he agree that although NICE is independent, it does not live in a vacuum? The institute will be aware of political indifference in the House and prejudice in the NHS against what is a debilitating condition. Consequently, the Benefits Agency does not take the issue as seriously as it might, which disadvantages people with real, debilitating conditions who deserve better.
Norman Lamb: That was a helpful intervention. NICE can take from this debate a clear message that we want it to take the condition seriously and to come up with clear recommendations for its treatment. The hon. Gentleman was right to identify, as I have, the importance of the Department for Work and Pensions taking the condition more seriously. There can be nothing worse for a person who is unable to work because they suffer from a debilitating condition than for those who provide benefits not to accept or believe that the condition is serious. That has to be addressed.
My hon. Friend the Member for Brecon and Radnorshire read a letter from one of his constituents detailing the problems that people often experience in accessing pain management courses. Pain management services are not part of the 18-weeks target and many people in the country are left waiting a scandalously long time for access to them. Given how debilitating the condition is, it is important that access to pain management is improved.
I conclude by returning to what Sir Liam Donaldson, the chief medical officer, said on the matter. His 2008 annual report could not have been clearer:
“Chronic pain reduces the quality of life more than almost any other condition. The impact of pain on people’s lives is significant, bringing emotional and financial burdens to patients and their loved ones.”
We need to take the impact of the condition on whole families into account. He concluded:
“A major initiative to widen access to pain services is badly needed.”
One good thing about the fact that not too many people have turned up for the debate is that the Minister has plenty of time to respond. She could provide enormous reassurance to those who suffer from the condition if she announced the clear initiative for which Sir Liam Donaldson has called.
10.14 am
Anne Milton (Guildford) (Con):
I join other hon. Members in paying tribute to my hon. Friend the Member for Reading, East (Mr. Wilson), especially since it appears that there has never been a debate in the House on
fibromyalgia. We should also bear in mind the prevalence of the condition. He mentioned that one in 50 people suffer from it, which is significant.
I also pay tribute to the Fibromyalgia Association and its website. I have trawled many websites in my time and I was extremely impressed with the association’s site. It was in nice, plain English and was useful not only to people who suffer from the condition, but to people such as parliamentarians, who quickly have to get up to speed on a number of chronic conditions. The website refers to current treatment, with the focus on reducing pain and increasing sleep which, of course, is the first thing to go when people are suffering acute pain. It also raises issues that have not yet been mentioned in the debate—the difficulties of diagnosing and treating children, and the problem of education.
My hon. Friend mentioned a constituent of his who took 13 years to get a diagnosis. Without any treatment or support, doubtless 13 years feels like a life sentence of self-doubt and disillusionment with the professionals, but even the average of two years for diagnosis is a terrible length of time for people to suffer from a disease that they fear people do not believe in.
The economic cost in terms of benefits is just one of the problems. I put together a flow chart of how someone with fibromyalgia might feel. It starts with pain—people do not know the origin of the pain—and goes on to reduced mobility and social isolation. The lack of diagnosis causes depression; people lose their employment and families break down. Both lead to reduced income. Furthermore, the impact on family, carers and friends is immense. Fibromyalgia and other undiagnosed chronic conditions take a significant toll on the spouses and children of the people who have them. In an ideal world, we would have increased awareness, early diagnosis and intervention, treatment, support and rehabilitation. That applies to fibromyalgia and many other chronic conditions.
Clearly, the debate has done much to highlight the problems faced by fibromyalgia sufferers. The belated response from NICE, to which many hon. Members referred, was not the answer we wanted, but it demonstrates that debates such as this are useful. They raise awareness and get the Minister’s attention—she has a significant brief. Sometimes, particularly at the moment, this place gets something of a knocking from the press and the public, but opportunities such as this debate are extremely important. They demonstrate that we can make a difference. We can ensure that illnesses that do not have the profile that they should have among the public and medical profession bubble to the surface, so that the Minister can take steps to address some of the issues.
The hon. Member for Cheltenham (Martin Horwood) made some valid points on the problems with the NICE analysis and the hon. Member for Brecon and Radnorshire (Mr. Williams) mentioned depression and psychological problems such as guilt. Again, those additional problems are often related to the delay in diagnosis. One cannot underestimate the impact of that delay. The hon. Gentleman read out the words of one of his constituents. As he rightly said, individual experiences successfully and evocatively encapsulate the problems suffered by thousands of people.
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