From the FMS Global News Desk (UK)
by Jeanne Hambleton Copyright 2009
FIBROMYALGIA THE CINDERELLA CONDITION
Fibromyalgia made history on May 5 with a first time debate on the condition in the House of Commons Westminster Hall, prior to International Fibromyalgia Awareness Day (May 12).
Rob Wilson MP, chairman of the all party parliamentary group on fibromyalgia, called on the Parliamentary Under-Secretary of State for Health, Ann Keen MP, to assist fibromyalgia sufferers by providing better education for doctors enhancing their knowledge about fibromyalgia. He urged the Department of Health to consider a nationwide awareness campaign to highlight fibromyalgia syndrome, the importance of fast diagnosis and the provision of treatment?
“Do the millions of people who suffer with this illness not deserve at least that from their NHS. It is unsatisfactory that many GPs are not confident or able to diagnose the illness in a timely fashion,” he said.
Stressing education about fibromyalgia is urgently needed and that the Government, through the NHS, could be the catalyst, Rob Wilson suggested the condition is a significant drag on the economy. There were also calls for an improvement and wider access to pain management, and it was felt that there was clearly no focus on the illness in the Department of Health.
Norman Lamb MP described fibromyalgia as 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. He called for the Department for Work and Pensions to address the condition and take it more seriously.
It was reported by Rob Wilson that there were 2.7 million people in the UK suffering with a very common illness – fibromyalgia. It is in fact as common as rheumatoid arthritis and can be even more painful he said.
He said a survey of five European countries had shown that fibromyalgia affects between 2 per cent and 4.5 per cent of the population, or at least one in 50 people, from children to the very elderly. Fibromyalgia had been shown to have more impact on patients’ lives than many other forms of widespread pain and chronic illness.
“I believe that the sheer scale of the illness and the suffering that results from it mean that it is high time fibromyalgia was taken seriously as an issue,” he added.
Rob Wilson made reference to constituent Jean Turner who has been without a diagnosis for years. “I am sure that we would all agree that the 13 years taken to reach a diagnosis in Jean’s case was far too long,” he added.
He suggested that all Jean and other sufferers would ask is to be believed when they say that they are in pain and are not hypochondriacs. Sufferers want support to be available from the NHS. They want guidelines finally to be produced by NICE, and they want GPs to be trained properly in diagnosing the condition.
Describing fibromyalgia as a very common illness Rob Wilson suggested fibromyalgia is in fact as common as rheumatoid arthritis and can be even more painful. A staggering number of people in the UK who suffer from fibromyalgia may not hold down a paying job or enjoy a social life.
Although the cause of fibromyalgia has yet to be found, he suggested the disease often develops after some sort of trauma that seems to act as a trigger, such as a fall or car accident, a viral infection, childbirth, an operation, a huge emotional event or without any obvious trigger. Research had identified a deficiency in serotonin in the central nervous system, with a resulting imbalance of substance P, a spinal fluid that transmits pain signals. The effect of that is disordered sensory processing. The brain registers pain when others might experience a slight ache or stiffness.
“We can only hope that research will discover the cause and result in more effective treatment in the years to come,” he added.
Discussing diagnosis Rob Wilson suggested it is difficult to identify the illness by standard laboratory tests or X-rays. Blood tests and scans will return a negative result and a patient will not necessarily look ill. Many of the symptoms are also found in chronic fatigue syndrome, rheumatoid arthritis and osteoporosis. It is not surprising that fibromyalgia has been dubbed ‘the invisible illness’.
“The problem comes when doctors do not have the experience or expertise to make a diagnosis. Nearly half of all specialists reported fibromyalgia as being ‘very or somewhat’ difficult to diagnose,” said the MP. “The average time taken for diagnosis is more than two years, and patients report seeing between two and four physicians before a diagnosis is reached. That lengthy period can be very worrying, frustrating and upsetting for patients.
“Despite the fact that several specialist fibromyalgia syndrome clinics are provided by NHS consultants around the UK, most of those do not appear in their own right on the NHS choose and book system. Even those GPs who know about the condition—and there are too few of those—who are looking for specialist help within the NHS cannot always refer patients directly to consultants with an interest in and knowledge of fibromyalgia. One of the immediate actions that the Minister could take today is to rectify the situation. Those clinics could be added to the ‘choose and book’ system, and the NHS could build and provide an extensive list of accepted specialist NHS services around the country.”
Currently fibromyalgia treatment reduces pain and improves sleep. Treatment focuses on the symptoms not the condition. The best that a doctor can do is give guidance on ways of coping with and treating some of the symptoms.
“I hope that it does not appear that I am criticising GPs, specialists or the NHS in general. That is not my purpose, as I believe that they do fantastic work under immense pressure; however, a major problem is that GPs get little or no training on the condition, and even consultant rheumatologists, who would usually diagnose fibromyalgia, often have little or no specific training. Professional development is currently hampered by out-of-date medical tests containing erroneous information. Much of the fibromyalgia information that is used by the NHS is provided by voluntary organisations such as the Fibromyalgia Association,” said Rob Wilson.
He pointed out that the NHS Direct online information had been brought up to date on fibromyalgia in 2008 by FibroAction, a charity supporting the syndrome.
Rob Wilson insisted, “It is clear that things need to change. Getting an accurate diagnosis is difficult, and about half of our GPs admit that the condition is often misdiagnosed. They highlight a lack of confidence in their ability to recognise the symptoms of fibromyalgia, or to differentiate the condition from others with similar symptoms. The problem does not rest with GPs alone. It is widespread in the medical profession. Education on the condition is urgently needed; the Government, through the NHS, could be the catalyst.”
Philip Hollobone MP said the NHS needs to provide as much help and support for GPs as possible. If it is difficult for specialists to identify the condition, it must be near to impossible for GPs.
Rob Wilson continued, “I also know that the Minister’s heart is in the right place, and that she is anxious for the NHS to help.”
He pointed out recent parliamentary questions from Members throughout the House have had a less than encouraging response. In June 2008, the Member for Twickenham (Dr. Cable) asked what plans the Department of Health had to improve treatment for people with fibromyalgia. The answer came, “There are no specific plans to improve the treatment for those living with fibromyalgia.”—[Official Report, 30 June 2008; Vol. 478, c. 655W.]
Another Member asked how many people were diagnosed in his constituency, the region and nationwide since 1997. The answer was: “Information on the number of people diagnosed with fibromyalgia is not collected.”—[Official Report, 21 November 2007; Vol. 467, c. 998W.]
He said, “Among other things, I asked the Minister what steps were being taken to raise awareness of fibromyalgia, and what progress there was on diagnosis and treatment. The response was: ‘We have made no assessment of the progress being made by the National Health Service into improving the diagnosis and treatment of fibromyalgia. We have taken no recent steps to raise the awareness of fibromyalgia among the general public and health professionals.’ ”—[Official Report, 9 October 2007; Vol. 464, c. 516W.]
Suggesting there is a discernible pattern Rob Wilson said there is clearly no focus on the illness in the Department, and no focus on it in the NHS, yet the condition acts as a significant drag on the economy. In 2006, through a parliamentary question, Rob Wilson discovered that 8,400 people who were claiming incapacity benefit or severe disablement had been given a primary diagnosis of fibromyalgia.
“We know that that is the tip of an iceberg, as most fibromyalgia sufferers on benefits will have been diagnosed with something else. The economic cost of the failure to diagnose the problem swiftly does not affect only the Department for Work and Pensions; the cost to the NHS and local authorities, too, will be huge. Better awareness and education of health professionals would considerably reduce that financial burden,” said Rob Wilson.
MPs paid tribute to the work of all local supports groups including Kettering Nene Valley support group.
Rob Wilson recognised the ongoing work of many groups that work tirelessly for the sufferers of the condition, and do their best to raise its profile but the message regularly comes back that there is a problem in raising the profile. Raising the profile of the condition is difficult without the support of the relevant authorities.
He spoke about an application made almost two years ago to National Institute for Health and Clinical Excellence (NICE). The aim was to establish clear guidelines on fibromyalgia.
“In May 2008, FMA UK had still not received a response, and asked me to intervene. Despite my intervention, still no response was received. Suddenly, and incredibly coincidentally, in the last couple days—since today’s debate was arranged—FMA UK has finally been contacted by NICE. FMA UK was informed that its application had been unsuccessful,” reported Rob Wilson.
“The fact that FMA UK has received an answer does not excuse the arrogance or incompetence—or both—that NICE has shown until now. Frankly, it is insulting and deeply frustrating for those who work tirelessly to raise the profile of the condition to have to wait for a debate such as today’s before the relevant authorities take them seriously. A delay of two years is not good enough,” he said.
It is imperative that a clear medical framework is set out for GPs. It is more than long overdue. Although he urged NICE to consider the matter again he requested the Minister to give fibromyalgia sufferers some hope by confirming that she will intervene, asking NICE to ensure a clear set of guidelines for the diagnosis and treatment of the illness are approved?
On this he added, “It is not acceptable that NICE has only just acknowledged FMA UK’s application to provide a clear and unequivocal set of guidelines for GPs. Those guidelines could be used in the training of the medical profession and could reduce the stressful experience currently associated with diagnosis”.
It was suggested that many fibromyalgia sufferers look to the Department of Health for leadership and support. They were gratified that the chief medical officer, Sir Liam Donaldson, recognised the impact of fibromyalgia and its prevalence in the UK as a cause of chronic pain in his annual report of 2008.
Sir Liam’s annual report, published in March 2009, had said: “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 loved ones. A major initiative to widen access to pain services is badly needed.” He stated that FM sufferers require information, and access to NHS tailored services.
Tribute was paid to Professor John Davies at Guys Hospital, the Russells Hall Hospital in Dudley, good multi-disciplinary teams at the Royal Bolton and Poole hospitals, and an eight-week course for fibromyalgia patients that is being run by southwest Essex community services in conjunction with Basildon University Hospital. Rob Wilson made reference to Lindsey Middlemass, the chair and founder of FibroAction and referred to her long struggle for a diagnosis and her work with NHS Direct and new guidelines.
In February 2005, Dr. Ernest Choy and Dr. Serena Carville, from King’s College London, produced a nine-point recommendation for the management and treatment of fibromyalgia. It is a credible report and is worth mentioning for that reason. Choy and Carville concluded that a full understanding of fibromyalgia requires an assessment of pain, function and the psychological impact on patients.
They also believe that individually tailored exercise programmes, including aerobic exercise and strength training, can be very beneficial, as well as other therapies, such as relaxation and physiotherapy. Relaxation works very well for almost everyone affected by this condition. It reduces tension in the mind and body and calms the symptoms, especially the pain. Choy and Carville concluded that, ultimately, medical professionals need to be able to listen to, and believe in, an individual’s experience of pain. Only then can a programme of treatment be established to reassure them and reduce stress and anxiety.
Asking the Minister to help those with fibromyalgia Rob Wilson suggested, “It is clear that we need to work towards providing greater education for general practitioners. It is unsatisfactory that many GPs are not confident or able to diagnose the illness in a timely fashion. Timely diagnosis is key to helping people with this condition. Secondly, it is not acceptable that NICE has only just acknowledged FMA UK’s application to provide a clear and unequivocal set of guidelines for GPs. Those guidelines could be used in the training of the medical profession and could reduce the stressful experience currently associated with diagnosis.
Martin Horwood MP said he was taken aback by some of the statistics that Rob Wilson gave, which were new to him. He felt there is the risk—this was the experience with drugs for dementia and other illnesses—that NICE will use the lack of a good evidence base as a reason for refusing to recommend treatment. Is that a risk, given some of the issues that mentioned, about credibility, belief and so on?
“We are looking not for advice on drugs, but for a set of guidelines so that people can be diagnosed quickly and GPs can properly understand their functions in this regard,” Rob Wilson said.
Effective treatment needs to be available throughout the country, but that should be signposted by the NHS, rather than third-party organisations. The profile of fibromyalgia desperately needs to be raised.
“As I mentioned before, despite its dedication, the voluntary sector can only do so much. We all have a part to play in raising awareness, but help from the Government is much needed. As we have seen, fibromyalgia is a complex condition with numerous contributing factors, and although research has advanced our understanding, it is clear that much work remains to be done.
“I know that the Minister has many pressures on her time and that there are also many pressures on the resources of the NHS. However, I know that she understands the chronic pain and suffering affecting millions of people throughout the UK and that she will do her utmost to provide assistance. I hope that today’s debate will help to raise the profile of this ‘invisible’ illness. That is the very least that I can do to help to support the many campaigners who have done their best to raise its profile,” added Rob Wilson.
Roger Williams MP said 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….. we have very little idea of what causes the condition—whether it is 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. 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.
“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,” said Roger Williams.
Norman Lamb suggested this was one of those occasions when all the parties can come together to make the case for improving awareness of fibromyalgia 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.
He said, “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…… a major initiative to widen access to pain services is badly needed.”
Norman Lamb continued, “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….. 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….. 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.”
Following talk about getting the referral from primary care to a specialist centre right, Norman Lamb said the problem is not unique to fibromyalgia. 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.
Returning to the role of NICE he said, “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, (Parliamentary Under-Secretary (Health Services), Department of Health, replied that NICE was an independent body and Members had accepted the importance of that independence.
Norman Lamb accepted the absolute importance of the independence of NICE, but asked the Minister if she was able to request that it investigate a particular condition and consider providing guidance?
Ann Keen said the importance of NICE’s independence makes things difficult. But she was confident that the debate will assist in other ways.
Norman Lamb insisted a request would not challenge NICE’s independence—it is not an order. He asked would the Minister 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 MP suggested NICE 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 recommended NICE could take from the debate a clear message that MPs want it to take the condition seriously and to come up with clear recommendations for its treatment. It was right to identify 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 benefits officers not to accept or believe that the condition is serious. That has to be addressed.
He pointed out that 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.
He quoted Sir Liam Donaldson’s recent annual report, “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.”
Pointing out the impact of the condition on whole families Sir Liam had said, “A major initiative to widen access to pain services is badly needed.”
Norman Lamb suggested the Minister could provide enormous reassurance to those who suffer from the condition if she announced the clear initiative for which Sir Liam Donaldson has called.
Anne Milton MP Shadow Minister, Health, paid tribute to the FMA UK website and the variety information adding she was extremely impressed. She said the website also raised the difficulties of diagnosing and treating children, and the problem of education.
“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,” she said.
The debate had done much to highlight the problems faced by fibromyalgia sufferers. The belated response from NICE, to which many Members referred, was not the answer they wanted, but it demonstrates that these debates are useful. They raise awareness and get the Minister’s attention – she has a significant brief.
“Sometimes, particularly at the moment, the House 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,” said Anne Milton.
She continued, “I hope that the Minister will confirm and re-establish that the Government take the condition seriously. Specifically, what steps is she taking to ensure that the training of doctors in particular includes a greater awareness of the significance of the signs and symptoms with which patients might present?
“As medical care and treatment become increasingly specialised, it is important that the Government take steps to ensure that GPs receive continuing professional education so that they can be confident in recognising and accessing treatment for such conditions. It involves not only GPs but all health care workers. The issue could also, in some instances, be addressed in schools. There has never been a greater need for awareness of the implications of signs and symptoms in the minds of the public sector workers who work with and meet the people affected.
“What specific plans does the Minister have for improving the treatment of fibromyalgia and access to secondary referral? I am sure that she will take steps to address that. Raising the profile and awareness of fibromyalgia among the groups that I mentioned is vital. Will she give the matter personal attention and demonstrate that the Government is aware that people with the syndrome are not getting the attention that they deserve, and will she take steps to ensure that attitudes from the Department of Health downwards change so that people get the care that they deserve and need?
“This is also a useful opportunity for the Minister to clarify the position of NICE. As she said, NICE is independent, which is extremely important. However, as I understand it, it works within a framework put together by the Government. Although we broadly welcome NICE’s independence and much of the work that it does, there are situations in which access to treatment regimes is not being made available by NICE. Response is slow. I am sure that she will take this opportunity to clarify those issues and demonstrate that she can do something to improve the lot of people with fibromyalgia,” said Anne Milton.
Ann Keen acknowledge that fibromyalgia had not discussed in the House before. She said she knew Rob Wilson had worked extremely hard to champion the cause of people living with fibromyalgia, not least as chair of the all-party parliamentary group on the condition.
“I am grateful to him for giving us the opportunity to debate it today. Every one of us wants the best for those suffering from that chronic, distressing, uncomfortable and painful condition,” said the Minister.
“I recognise how distressing fibromyalgia can be to those living with the condition and to their families, and I know that much of that distress is caused by difficulties recognising, acknowledging and accepting the condition and its impact. Like other chronic conditions, fibromyalgia can significantly affect physical and emotional well-being and disrupt work, social and family life.
“What can we do to raise the profile of fibromyalgia? I believe that this is the start of an important dialogue, particularly with the all-party group. I think that Members, particularly Front Benchers, recognise that setting NHS must-dos is not easy, as such things affect every one of us and every part of our bodies. The Department of Health must be sparing in setting those priorities centrally because of the criticism that we often receive when we attempt to do so. I know that everyone in this Chamber is here in good heart, but it is important to put it on the record that if we were to keep giving the NHS priorities, my list, let alone those of the rest of the ministerial team, would be long.
“The Department has set up the National Quality Board to advise Ministers what priorities the National Institute for Health and Clinical Excellence should adopt in setting NHS standards, as well as which conditions require the Department’s closer attention. The priorities are likely to be based on an objective assessment of the burden of disease and an analysis of the gap between the quality of existing services and best current practice. That is something that we can work with.
“Like other chronic conditions, fibromyalgia can significantly affect physical and emotional well-being, which in turn affects the social and financial economy of the family, the community and the country. Sadly, there is no cure, so treatment aims to ease symptoms as much as possible and improve patients’ quality of life. However, we all know that care for people with fibromyalgia varies widely, as has been demonstrated by Members today, particularly those representing rural areas. In the worst cases, people with the condition are left feeling that the health care system does not recognise their illness. I can understand why patients would feel that way. I acknowledge the points made today. The case has been made that better services, quicker diagnosis and better understanding can make a major difference to the quality of life of people with fibromyalgia. I want to respond as positively as I can to the issues raised.
“Let me be clear that we want to ensure that people with the condition live as well as possible. Their quality of life is important to all health professionals, particularly Ministers with responsibility for health. I pay tribute to the hard work and dedication of the voluntary sector in helping people with fibromyalgia, especially FibroAction and the Fibromyalgia Association UK. It is important to raise awareness among the medical profession and the public at large, and such organisations have been at the forefront of improving knowledge of this distressing condition.
“As a health professional, I know that it is unnerving to be faced with a patient who knows more about their condition than I do, but in these days of technology, the Internet provides access to wider knowledge and patients feel that they have more autonomy. To receive no response is thus even more frustrating. I totally acknowledge what has been said today, and I am confident that there are people present here who could enlighten us even further.
“There is comprehensive information on the care of people with fibromyalgia specifically for health professionals on NHS Evidence, which is the new web-based portal that provides all health and social care professionals with authoritative clinical and non-clinical evidence and best practice. It provides access to a range of information, including primary research literature, practical implementation tools, guidelines and policy documents,” she said.
The Minister continued, “The NHS Choices website provides information to help put patients in control of their health care. It contains a number of sections that deal with fibromyalgia. There is detailed information on diagnosis, treatment and on living with the condition. NHS Choices has launched a free training programme for health professionals to improve their understanding of all the features available on NHS Choices, including how to direct patients to local services and how to access NHS accredited information about healthy living and conditions.”
Norman Lamb asked the Minister if she would will she speak about ‘choose and book’? Patients can now make choices about where they go and doctors can advise them on what might be best. Will she explore whether the system can guide clinicians to the right specialist services, wherever they are in the country?
Ann Keen admitted this was a valid point. She said she believes that best practice happens in certain areas. As with any new initiative, some places take the reins quicker and more effectively than others.
“We are working towards that being addressed. Hon. Members have mentioned awareness of the condition among GPs and other health professionals. I am sure that all hon. Members are aware that the Department does not specify the content of training curricula. That is done by the royal colleges and is determined by regulatory requirements and the needs of the service. Nevertheless, we expect all health care staff to learn and to get the training and skills that they need to deal with all their patients. Obviously that includes those with fibromyalgia.”
Rob Wilson thanking the Minister for her replies so far said, “I am interested by the NHS Evidence web portal. I believe that it is for health professionals. Is it possible for members of the public or parliamentarians to look at what it advises general practitioners to do so that we have a clear view of the situation?”
Ann Keen said NHS Choices and NHS Evidence are certainly becoming more transparent and open.
“Although we cannot direct the curriculum, we expect all health care staff to get the training and skills that they need. Education and training for health care staff is, and always has been, a priority for the Department of Health. However, we accept that there is room for improvement. As will be obvious from Lord Darzi’s review of the NHS, we are looking at the content of curricula for undergraduate and postgraduate training in health and social care. That is important because of how long-term conditions will be treated in the community in future, as the hon. Member for Guildford (Anne Milton) said. We are looking at this matter, but we cannot dictate it.”
Anne Milton said she appreciated that the Government do not dictate the curricula, and asked, “Does the Minister not accept that there are issues, not only with fibromyalgia, but with many chronic conditions? There is an issue with GPs getting time off to do adequate training. Some GPs need training, but do not volunteer for it. There are issues for other health care staff and for nurses in particular. There can be problems with the ring-fencing of training budgets and with their use to cover shortfalls elsewhere. I am worried that we will slip backwards on training issues because NHS finances are quite tight. That would be a false economy. Money for continuing professional development is vital.”
Ann Keen replied, “That point was well made and it is well taken. The safety and quality that are required in the NHS cannot be provided, nor the professionalism of the health care team maintained, without the knowledge that is required. I am confident that it will be accepted that nurses are at the centre of that team and that they direct it.
“The transparency that we have asked for replaces ring-fencing and is much better than it. We will be able to see where the money is spent and whether education and training are given priority. The settlement for the NHS has been made up to 2010-11. We have always said that investment in education and training is paramount in everything we do, particularly at this difficult time. I should ask the Conservatives whether that investment will continue during the recession under their pledges on NHS funding. Some health professionals are not aware of conditions that may present at their practices in the way that they could and should be. We must correct that situation,” the Minister said.
Norman Lamb said he was grateful for the Minister’s generosity in continuing to give way and he understood that NHS Evidence was a new portal that was developed primarily by NICE. Given that NICE has been fairly unhelpful in its willingness to provide guidance on this condition, he asked if the Minister knew what NHS Evidence says about the treatment of this condition or what advice it gives to GPs? Should that be investigated to ensure that NHS Evidence is giving helpful guidance, he said?
Ann Keen replied that Lord Darzi’s review of the NHS will look at the content of the curricula for undergraduate and postgraduate training in health and social care. Fibromyalgia diagnosis and care will benefit from that work. She hoped that gave reassurance to Members and to sufferers.
“The hon. Member for Reading, East (Rob Wilson) will be aware that in 2003 the Chief Medical Officer issued a newsletter to all doctors in England to raise awareness of the condition and the extent to which it affects the population. We can send out such directives, but it is difficult to monitor how they are received. However, we know that it was well received by patients and health professionals. I have asked officials to look into the feasibility of reporting that exercise. We want to look at what has happened with that exercise since 2003, and to report back, and we are able to repeat that exercise easily, especially given what the Chief Medical Officer has said about pain, which has been acknowledged on both sides of the House today.
“Guidance has been mentioned, particularly the use of NICE guidance in securing improvements and reducing variations in the quality of care. As the hon. Gentleman and others have said, the Fibromyalgia Association UK has asked NICE, as part of its topic selection process, to consider developing clinical guidance on the diagnosis and management of fibromyalgia. Hon. Members have acknowledged the importance of NICE’s independence, but I have also been asked other questions. Both FMA UK and the hon. Gentleman have expressed concern at the slow progress in receiving a response from NICE, and I can confirm that the association has now been informed of the outcome of this topic. I have been asked whether I can intervene. Anyone can write to NICE with a request, but after matters are considered by the panel of experts, they are passed to Ministers for approval, so it is difficult for Ministers to intervene at the beginning of the process.
“In 2006, we launched the musculoskeletal services framework, which sets out guidance to provide high-quality and integrated services for people with musculoskeletal conditions, including fibromyalgia. The framework will help to improve the assessment and diagnosis of, and treatment for, fibromyalgia and other musculoskeletal conditions. It will encourage the giving of more support to help people to manage their own conditions, and it will get across better information and advice. It will also provide a clearer focus on the needs of children and families. The framework also supports an 18-week target for the time from referrals from GPs to the start of hospital treatment.
“Pain is a common, distressing and often disabling symptom in many musculoskeletal conditions, including fibromyalgia. The Department of Health has already supported the work of the NHS on the management of chronic pain through a number of important initiatives, including the musculoskeletal services framework, the 18-week commissioning pathway for the management and treatment of chronic pain, and the NHS Choices website. I must correct the hon. Member for North Norfolk (Norman Lamb) on one point: the development of the 18-week commissioning pathway for pain, in particular, assists commissioners in delivering the appropriate services for their populations. The pathway for chronic pain, which was developed with leading pain clinicians and with the consensus of a wide range of key stakeholders, will help to transform services with examples of good practice. It recommends the use of the brief pain inventory to assess the level and impact of pain, which is an important tool in assessing the patient,” the Minister added.
“I worked for many years as a community and district nurse, and I observed at first hand, when I told patients that their test results had come back negative, the guilt that they experienced for feeling pain when their test was negative. My practice, at all times, was to accept that the patient had the pain that they said they had. Those are the only criteria on which health professionals should operate. These issues are so mixed, especially when psychological aspects are taken into consideration. The fact that some patients are prescribed antidepressants, rather than analgesia, as has been mentioned, shows the need for pain to be managed differently, and I commend the Chief Medical Officer for his statement.
“I recently responded to an Adjournment debate in the main Chamber that had been secured by the chair of the all-party group on chronic pain, my hon. Friend the Member for Aberdeen, South (Miss Begg). I certainly think that the two all-party groups should talk together. On that evening, the chair was supported by the Chronic Pain Policy Coalition, and I met them at the end of the debate to say how important work on pain is. It should not be something that one puts up with; there is a limit. Pain is subjective, and it is important to have the correct measuring tools. I remember that one of the most distressing parts of my work as a practising nurse was to leave someone in pain without having an answer for them—that is no longer acceptable.
“Officials are currently scoping regional events to support the voluntary sector in influencing commissioners to provide better pain services locally, and to engage with professional bodies to raise awareness about chronic pain and about the needs of patients with chronic pain. The development and content of those events is being taken forward with the third sector, and I will ask officials to ensure that fibromyalgia groups are involved in that process. Once again, I thank the hon. Member for Reading, East for bringing this important issue to the attention of the House, and particularly for the manner in which he has done so.”
EDITOR’S NOTE: My apologies for the length of this report but it is almost a full transcript of the 75 minutes debate actioned by the chairman of the All Party Parliamentary Group (APPG) for Fibromyalgia, MP Rob Wilson. Said to be the first ever fibromyalgia debate in Parliament (Westminster Hall) this was a historic event which is why I have run the story at length.
I am sure you will recognise many things that have been said and it is good that the national organisation, FMA UK, has been acknowledged. Personally I feel without ‘gentle persuasion’ by Jean Turner, FMA UK Trustee, and Rob’s constituent, this might not have happened. Well done Jean T. You did a grand job. All we want now is some results.
It appeared to me that on the whole the Minister, as a health professional, had every sympathy with the requests for change and support for FMS. However I could not help but feel her hands were tied. For this reason we must keep up the pressure – raising awareness this week for May 12 International Fibromyalgia Awareness Day, and reminding our MPs who missed this debate even though you asked them to attend. This IS much work still to be done.
If you would like to see the 75 minute video, get a stiff drink, sit comfortably and log on to http://www.fibromyalgia-associationuk.org/content/view/385/1/
It would be good to hear your views about the debate? Email me at
jeannehambleton(@)mac.com. Please omit the brackets – I am fighting the cyberspace robots.
My thanks to Hansard and TheyWorkForYou.com as the sources for this helpful information.
FOR MORE HEALTH STORIES SEE http://jeannehambleton77.wordpress.com