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Complex Regional Pain Syndrome

Volume 566: debated on Tuesday 9 July 2013

It is always a pleasure to serve under your chairmanship, Ms Dorries. I am grateful for the opportunity to highlight how regional sympathetic dystrophy, now known as complex regional pain syndrome, affects those who suffer from it and to press for more research into the condition, so that a greater number of people may be properly diagnosed and treated. If Members forgive me, I will use the acronym CRPS throughout the debate for brevity and ease of description.

The earliest descriptions of CRPS apparently date back to the American civil war, but I became aware of it only through my constituent, Kevin Scardifield, who suffers from the condition. He contacted me because his experience of CRPS and the quality of care that he received led him to believe that there is neither an adequate understanding of the condition by NHS clinicians, nor good-quality care for sufferers such as him on the NHS.

Before I proceed, it might be helpful if I explain CRPS and its symptoms. The NHS Choices website describes CRPS as

“a poorly understood condition in which a person develops a persistent (chronic) burning pain in one of their limbs.”

It continues:

“The pain usually develops after an injury—which in most cases is a minor injury—but the pain experienced is out of all proportion to what you would normally expect.”

It is through an injury that my constituent developed the condition in 2009. He was undergoing carpal tunnel release surgery when the local anaesthetic failed to work and he broke his hand against the clamp when he jerked so hard because of the pain.

To give a full account of the symptoms experienced by sufferers of CRPS, I will quote directly from a letter that Mr Scardifield sent to me:

“The pain of this condition is so great that there are recorded cases of sufferers self-amputating in a desperate attempt to escape the excruciating agony. Others have had their circulation so badly damaged that they have developed gangrene and have had to have amputations to save their lives. In either case it has caused the condition to spread further into their bodies.

According to the…McGill Pain Index, it is the world’s most painful incurable condition; it is almost impossible for us to understand exactly how painful that is. Try and imagine a 3 bar electric fire with a metal grill—how long do you think you could hold your hand against the grill with one bar on? Now try and imagine that fire is inside your hand, one bar is a good day for a sufferer, three bars is a bad day and there is no off switch.

Try and imagine a pain so great and a grip so weak that you cannot pull open a packet of crisps yourself, a sneeze that turns into a scream of agony. Knowing that you will never be able to pick up and hold or play with your newly born child or grandchild because one hand is useless and they could cause your condition to spread or start somewhere new.”

My constituent recounts that his injury was missed, not only by the surgeon in subsequent visits but by the hand therapists in approximately 50 visits. Eventually, he was diagnosed as having CRPS following a referral to the hand therapy unit of Milton Keynes hospital.

I congratulate the hon. Gentleman on bringing this matter to the House for consideration. I have a great many constituents who have the problem, which concerns me. Does he believe there is now a greater need for doctors to be trained to tell the difference between fibromyalgia, which some people think CRPS is, and the actual disease itself? If so, does he think the NHS should initiate training among doctors and surgeons to ensure that that happens? Should there be more research on how the pain starts and where it comes from?

I have much sympathy with what the hon. Gentleman says, and if he bears with me, I will address training and research funding a little later.

The NHS Choices website sets out the quality of care and treatment that CRPS sufferers should receive due to the complex nature of the condition. My constituent should have been provided with a care team comprising a physiotherapist, an occupational therapist, a neurologist, a psychologist, a social worker and a pain relief specialist. He informed me that he has not received such care, as most health professionals whom he has encountered do not even know the condition’s acronym.

That leads me to my principal argument. If NHS clinicians do not sufficiently understand the condition, how will they be able to diagnose it properly and ensure that patients are adequately treated and cared for? The NHS Choices website says that it is hard to estimate exactly how common CRPS is because many cases go undiagnosed or misdiagnosed. I think the hon. Gentleman was referring to that point.

My constituent contends that possibly 250,000 people in England have not been properly diagnosed. He is understandably impassioned about the issue and has been carrying out his own research using American sources—it appears more research is being conducted into the condition in America.

From my own research, I learned from one study that as many as one in 3,800 people in England may be affected by CRPS. Therefore, going by the 2011 census estimates, 14,000 people could either have been misdiagnosed or remain undiagnosed. Although that might appear to be a small number by comparison with my constituent’s estimate, it does not diminish the issue’s importance.

The core principles of the NHS state that good health care should meet the needs of everyone and should be based on clinical need. Kevin Scardifield is unable to do the everyday things that other people take for granted. He was a police officer before the onset of the condition—a profession he greatly loved but had to give up. So debilitating is the condition that, by the middle of last year, he had been able to leave the house only six times, which was just for a few yards to the GP.

I am sure that Members can appreciate why this is such an important issue and why Kevin Scardifield has been campaigning hard for proper diagnosis and treatment. Since he made me aware of the condition, I have made a number of representations to the Department of Health, the local hospital, the primary care trust—now the clinical commissioning groups—and even the Department for Work and Pensions.

I am grateful to the Minister and his predecessor, the right hon. Member for Sutton and Cheam (Paul Burstow), for their replies to my constituent’s concerns when I brought them to their attention. Had my constituent felt that his concerns had been fully addressed, however, we would not be having this debate, so if the Minister will forgive me, I will raise a number of specific issues. First, as I have mentioned, people are either being misdiagnosed or remain undiagnosed because NHS clinicians do not appear to have sufficient awareness of the condition.

I congratulate my hon. Friend on raising the issue. Although I take an interest in health issues, CRPS is new to my attention. Only today, I was contacted by a lady from Leeds who is a sufferer, and listening to her story was very harrowing. Is my hon. Friend surprised, as I am, that there is only one specialist centre in the UK? That centre is in Bath, which is a long way from many places. If CRPS is diagnosed early, there is a high chance of it going into remission, which would be great for the NHS and, more importantly, for the patients involved.

My hon. Friend makes an important point, and I suspect that if we spoke to all our colleagues we would find that they, too, have been contacted by constituents with this condition. One of the points that I will make in a few moments is on the need for greater research and specialist services, so that the types of benefit that he rightly describes can be identified and delivered.

Secondly, the number of people diagnosed with the condition is unknown. Indeed, the Department of Health has informed me that it does not hold such records. My constituent informs me that, in 2010, he was told by NHS Direct that just over 11,000 people had been diagnosed in the United Kingdom. In 2012, he came across some information in the CRPS guidelines prepared by the Royal College of Physicians that quoted research suggesting a higher incidence of CRPS in Europe. On the back of that, he again contacted NHS Direct, and this time he was informed that it had been ordered to stop keeping records and to delete existing ones, as that responsibility would be undertaken by the Office for National Statistics. The ONS, however, replied that no such responsibility had been passed to it. Will the Minister clarify that issue and assure me that there is a strategy in place adequately to capture the number of people being diagnosed with CRPS? Will he also look into claims that specialists are failing to highlight the seriousness of the condition, particularly its potentially degenerative nature?

Thirdly, there does not seem to be an agreed pathway within the NHS for the treatment and care of those diagnosed with the condition. If there is, it was not reflected in the care that my constituent received. Will the Minister ensure that all NHS trusts and clinical commissioning groups follow the guidelines?

Fourthly, compared with the United States and other European countries, we are not doing enough to research the condition with a view to finding a cure and ensuring an improved quality of life for CRPS sufferers. While preparing for this debate, I observed that there was more information on the condition on US-based websites than on UK-based ones. I have also been unable to find UK charities or support groups for CRPS. Everyone can be proud of the fact that since the start of modern clinical trials, 39,179 trials have been made or are in progress to find a cure for cancer. The UK has carried out about 2,299 of them. The UK Charity Commission has 976 cancer charities on record, and the NHS spent more than £375 million between 2008 and 2012 on researching a cure for cancer. Clearly, that is a wonderful amount of research, but during the same period, only 76 trials on CRPS have been conducted worldwide. Holland, with a population of just over 16.5 million, has carried out three trials, and Switzerland, with a population of 8 million, has carried out two. The UK has a population of more than 60 million, yet I have been unable to locate a record of our carrying out any trials.

In addition, the NHS does not appear to have invested much in researching CRPS. I understand that one project was carried out last year in Bath, to which my hon. Friend the Member for Pudsey (Stuart Andrew) referred, but it was not aimed specifically at finding a cure, and it was funded by an American charity. Will the Minister look into funding for more UK research into the condition? Specifically, will he consider my constituent’s suggestion that a post be created within the Department of Health for a CRPS officer to liaise with specialist clinics around the world to collect, collate and disseminate papers and studies on the condition? My constituent explains that it would prove useful, as it was not until 19 years after the US first stated that guanethidine blocks were ineffective on RSD sufferers that our own specialists came to the same conclusion.

I hope that the Minister will address those matters when he replies, and I hope that this debate will help draw attention to this important issue, so that more people are properly diagnosed and adequately treated. I also hope that I have been able to do justice to the needs of sufferers such as my constituent. May I suggest that the Minister find time at some point in future to meet them, so that he can properly understand the sheer pain and agony that they face?

I congratulate my hon. Friend the Member for Milton Keynes South (Iain Stewart) on securing this debate on an issue of intense importance to people who suffer from complex regional pain syndrome. The condition can be debilitating, with a devastating effect on sufferers and their families. I know that there are those, including my hon. Friend’s constituent, who campaign tirelessly to raise awareness of the condition. The description that he gave of what people go through—attempts at self-amputation, for example—are unimaginable.

I pay tribute to Mr Scardifield for his persistent campaigning to raise awareness. It is highly laudable that he has chosen to campaign and maintain the pressure for increased understanding. The experience that my hon. Friend described—the diagnosis was missed by several clinicians, and there was no proper care team or personal care plan—is of concern. I am grateful to him for alerting me to the extent of the challenge faced by his constituent. One great benefit of Adjournment debates such as this is that they ensure that Ministers and officials focus on a particular condition that might not otherwise get the attention it needs. I am grateful for this opportunity. I hope that this debate will prove informative for those here who wish to learn more about the condition and be helpful to those affected, as I say more about the help and support that ought to be available for CRPS sufferers and the research into the condition that is currently under way.

Although it has been recognised as a medical condition for more than 100 years, diagnosing CRPS at its earliest stages remains a problem, as my hon. Friend rightly said, because it is often misdiagnosed or completely undiagnosed. The explanation is threefold. First, CRPS is relatively uncommon and patients do not routinely present to GPs with it. When the Department looked at the representations that we have received on the subject over the last few years, the number of individuals who have approached us is small. The fact that the condition is relatively uncommon and that GPs do not come across it that often creates a problem in terms of their capacity to diagnose it accurately.

Secondly, the range of symptoms associated with CRPS are shared with a number of other, more common conditions, so that when patients do present, they may not be correctly diagnosed in the first instance. Thirdly, there is no single diagnostic test that accurately identifies the condition; a diagnosis is made primarily by excluding other conditions with shared symptoms that can be accurately diagnosed. Those difficulties also mean that there are no reliable figures for the number of people living with the condition, and estimates produced by researchers and clinicians vary considerably, as my hon. Friend said in his speech.

I understand his concerns about having a clear picture of the number of people affected by CRPS. I will approach NHS England to ask whether there is any scope to improve our understanding of how many people are diagnosed with the condition. Ultimately, I think that we can all agree that a better understanding of the extent of the condition and the numbers affected would be a considerable advantage. Let us explore whether it is possible to achieve greater accuracy.

As my hon. Friend may be aware, since 1 April 2013, NHS England has been responsible for delivering improved outcomes for people with long-term conditions such as CRPS.

On the subject of statistics and information, does the Minister intend to make contact with the regional Administrations, whether in the Northern Ireland Assembly, the Scottish Parliament or the Welsh Assembly, to ensure that all the information comes together so we can galvanise action and respond better?

I will certainly explore the possibility of understanding how much information is available to the devolved Administrations to increase our understanding of the prevalence of the condition. They may be in exactly the same position as England, where our understanding of the prevalence is ultimately still limited, but let us explore that further.

NHS England draws on a wide range of clinical advice when developing commissioning policies and statements. It has a specialised pain clinical reference group to provide expert clinical advice on pain issues. I will therefore put forward my hon. Friend’s concerns about the need for CRPS expertise.

Turning to the identification of CRPS, an increasing range of guidance is available to improve awareness of it among members of the public and health professionals to support early diagnosis. NHS Choices, to which my hon. Friend referred, provides comprehensive advice on the causes, symptoms and treatment of the disease. More detailed clinical guidance is provided via the NHS Evidence website.

In May last year, the Royal College of Physicians published a guideline for clinicians on CRPS, setting out best practice on the identification and management of the disease. The guidance was developed with the involvement and endorsement of 21 key organisations involved in the care of people with CRPS, including the Royal College of General Practitioners, the British Orthopaedic Association, the British Pain Society, the British Society of Rehabilitation Medicine and the British Society for Rheumatology, to name but a few. I am confident that that collaborative guidance will prove useful in supporting clinicians to identify and treat patients with CRPS more effectively. When such guidance, produced by clinicians, is developed, one does not achieve a sea change in understanding overnight. It takes time to get the message across, in particular throughout the whole of primary care. The production of the guidance, however, is the starting point, and it will aid clinicians in diagnosing and treating appropriately.

Once a patient has been diagnosed with CRPS, a range of treatment options is available. Unfortunately, there is no cure for the condition, but many patients with pain disorders can be managed through routine primary and secondary care once they are appropriately diagnosed. For patients with CRPS, treatment can involve: physiotherapy; occupational therapy; a neurologist to examine the effect on the nervous system; sometimes a psychologist, who may be appropriate, because of the psychological problems caused by living with CRPS, as well as with a host of physical health conditions; a social worker for advice about what extra help and services are available; and a doctor or other health care professional trained in pain relief, which is critical.

NHS England is aware that more needs to be done to identify those patients with the most severe and complex chronic pain who need access to nationally commissioned specialised services. NHS England’s specialised pain clinical reference group is working with the royal colleges and the British Pain Society’s guidelines to ensure that the needs of those patients are appropriately met.

I am aware that the absence of clinical guidance from the National Institute for Health and Care Excellence is a real concern of patients with CRPS. I am advised, however, that NICE is consulting on a short clinical guideline on the pharmacological management of neuropathic pain, including CRPS. The draft guidance, setting out recommendations for further research, highlights the need for more research into CRPS. Final guidance is expected for publication shortly, in October of this year. In addition, a quality standard topic on pain management in young people and adults has also been referred to NICE for development. Quality standards are a concise set of statements designed to drive and measure priority quality improvements within a particular area of care; they support commissioners to be confident that the services they are purchasing are high quality, cost-effective and focused on driving up quality.

My hon. Friend specifically raised research into CRPS. The Government are supporting a range of research projects into the condition, including a major trial of low-dose intravenous immunoglobulin treatment, funded via the Medical Research Council and costing more than £650,000. The investigators involved have previously treated patients with IVIG and reported encouraging results on pain relief in a pilot trial. IVIG may provide pain relief for patients for whom classical treatments are not satisfactorily effective. If IVIG treatment is proved effective, the trial may also stimulate research on the efficacy of IVIG in treating other chronic pain syndromes.

The National Institute for Health Research clinical research network is also supporting a multi-centre international study to define recovery and the priorities for recovery from the perspective of patients with CRPS. The NIHR welcomes high-quality funding applications for research into any aspect of human health, including CRPS, and judges them on an objective basis.

More generally, I reassure my hon. Friend of the Government’s commitment to improve outcomes for the 15 million-plus people in England who are living with a long-term condition, including those with CRPS. Through the mandate—the set of Government priorities for NHS England—we have asked NHS England to make measurable progress towards making the health service among the best in Europe at supporting people with ongoing health problems to live healthily and independently, with much better control over the care that they receive.

Through the NHS outcomes framework, we will monitor the performance of the NHS in supporting people with long-term conditions, such as CRPS, to live as normal a life as possible and to improve their quality of life. Improvements will be measured in three main areas: how well the NHS is performing in supporting people to look after themselves; how well a person is able to live as normal a life as possible; and how successfully the NHS manages long-term conditions by looking at unnecessary hospital admissions and excessive lengths of stay in hospital. The improvement areas are mirrored in the clinical commissioning group outcomes indicator set—apologies for the jargon—which will be used to hold CCGs to account for and to provide information for the public on both the quality of services and the health outcomes achieved through commissioning.

At service level, the new NHS improvement body, NHS Improving Quality, has made the development of evidence-based tools for the management of long-term conditions a key improvement programme for 2013-14. Interventions will involve care plans, care co-ordination, use of technology, risk stratification, self-care and, crucially, the role of carers. That work will be evaluated and best practice identified to help drive improvement in the management of long-term conditions such as CRPS in every local area.

I thank my hon. Friend once more for securing today’s debate. I very much hope that our discussion has been helpful to him and to his constituent. I am more than happy to discuss further how we can improve outcomes for people suffering from such a pernicious condition.

Question put and agreed to.

Sitting adjourned.