Complex Regional Pain Syndrome

Ruth George Excerpts

Tuesday 19th June 2018 Commons Chamber

[Ruth George (High Peak) (Lab)]

It gives me great pleasure to speak in my first Adjournment debate since being elected last year.

Complex regional pain syndrome—CRPS—is one of the most painful conditions known, registering a staggering 42 out of 50 on the McGill pain scale. That is worse than the pain of the amputation of a finger or toe with no anaesthetic, which registers as 40 out of 50, and it is worse than childbirth—the Minister may sympathise with me on that. CRPS is not a short-term pain that will heal in time. The most excruciating part is that the pain is long-term, and likely to be for life. In fact, CRPS is known as the world’s most painful incurable condition. In the United States, it is referred to as the “suicide disease” as it can lead sufferers to resort to suicide as the only means to escape the huge pain that they bear.

CRPS is a chronic neuropathic pain condition—a disease of the nervous system—and it usually starts with a minor injury or fracture to a limb. The major indicator is the huge amount of pain involved, which is out of all proportion with the original injury. The affected limb can swell, change colour and change in temperature and, instead of reducing in time, the pain just gets worse. It can lead to weakness of the limb, ulceration of the skin, wasting tissue and bone thinning. The pain caused by CRPS spreads over time and may even develop in the opposite limb or in other limbs. Patients with CRPS most likely live with anxiety and depression because of the amount of high-level pain they are in 24/7.

CRPS is not a well-known condition, although awareness of it is increasing thanks to the national charities that work hard to support sufferers and to promote the need for treatment. Six months ago, I was not aware of CRPS, so I want to pay tribute to my constituent Victoria Abbott-Fleming, whom I have met. Victoria qualified as a barrister, but six months after a minor accident at work, at the age of just 24, she received a diagnosis of CRPS. The symptoms included a burning, severe pain in her lower leg, a freezing cold sensation, and a stabbing feeling that she said was like 1,000 ice picks pushed into the skin and bone. Victoria described it as like having petrol put through one’s veins and set alight. Her other symptoms included major swelling, hair and nail loss, hypersensitivity, temperature change and stiffness that prevented her from walking.

[Alex Chalk (Cheltenham) (Con)]

The hon. Lady, through her constituent’s experience, is painting a vivid picture of the pain. Does she agree that hearing accounts such as that of my constituent Helena Stone—she said it was like barbed wire being tightened across one’s leg—give an insight into the viciousness of this debilitating condition and make it all the more important that we raise awareness of it?

[Ruth George]

I thank the hon. Gentleman for his intervention. While we can listen to descriptions of the pain, we can never really have any idea of what it is like. The worst thing about CRPS is that the pain is not occasional and something that a person knows will get better—they know it may be with them for the rest of their life.

[Jim Shannon (Strangford) (DUP)]

I sought the hon. Lady’s permission to make an intervention before the debate.

Whenever I say in my office that I am in pain, my girls say to me, “You don’t know what pain is. If you had given birth, you would know what pain is.” The girls in my office tell me that chronic regional pain syndrome is even more painful than labour and giving birth, so I understand just how extreme it is.

We look to the Minister for support and help, as we always do—and we always get it, by the way. Does the hon. Member for High Peak (Ruth George) agree there is an onus on GPs to be more aware of the illness and to see how they can provide help in their surgeries? The Minister can give some direction to the NHS as a wee bit more needs to be done in surgeries and health clinics.

[Ruth George]

I thank the hon. Gentleman for his intervention, and I know that he has made inquiries and asked questions about CRPS over the years. All the sufferers thank every MP who raises the issue and helps them to feel that they have hope.

Apart from the physical and mental pain suffered due to CRPS, a severe part of the torture that my constituent Victoria experienced was the judgmental attitudes of medical professionals who did not understand or were not aware of the condition and the shame that she felt. She says, “The medical profession sometimes don’t believe your symptoms, or try to fob you off by saying, ‘Are you sure it is not in your head?’ or, ‘You look well. Are you sure you’re actually ill?’” Those problems are even worse now that we see children being diagnosed with CRPS, because children are often not believed when they say that they are in excruciating pain.

[Alex Chalk]

The hon. Lady is being extremely generous in giving way. My constituent experienced the problem of not being believed. Does the hon. Lady agree it is all the more galling that the NHS website recognises the condition and states that it is “poorly understood”? Does that not make the point that the situation needs to change?

[Ruth George]

The hon. Gentleman makes the pertinent point that CRPS is poorly understood, and that more understanding and awareness is needed from medical professionals.

After Victoria developed ulcers and total skin breakdown, she was told in 2006 that she needed to have her leg amputated above the knee at just 27 years old. Like many CRPS sufferers, she was unable to use a prosthetic limb because the prosthetic was too tight, pressing hard on the hypersensitive skin where she had had CRPS and inducing excruciating pain in her stump.

Victoria was left wheelchair-bound and unable to work as a barrister because many courts are completely inaccessible to wheelchair users, and because of her strong medication and her mental unwellness due to her situation. She pays tribute to her husband Michael, who saw her through the toughest of times and still supports her.

In 2014, Victoria received the even more devastating news that the condition had spread to her remaining leg, which she needed to have amputated. Amazingly, as a dual amputee, she has come through the experience and set up a national charity, Burning Nights, which offers support, understanding and explanation to CRPS sufferers. The charity offers a voice at the end of the phone, as well as very important advice when sufferers feel they cannot take any more.

The trouble is that we do not know how many people are living with CRPS. When I asked a parliamentary question, I was shocked to be told that the Department of Health and Social Care does not collect data on the number of people diagnosed with CRPS as it

“is not classifiable within the ICD10 clinical coding”.

That means that a box on an NHS computer cannot be ticked for CRPS. Various statistics have been suggested by the health profession and in the light of experience in other countries, but the most widely accepted figure is that there are about 26 people in 100,000 living with CRPS, which would equate to more than 15,000 sufferers in the UK. That means that CRPS does not even qualify as a rare disease but, as other hon. Members have said, many medical professionals have not even heard of it, let alone are aware of its symptoms and signs that would lead to diagnosis.

Too many patients are made to feel that they are making a fuss when they are actually in agony. That is not surprising, given that only 20 minutes during a medical degree concentrate on chronic pain—it is only 90 minutes for physios, who deal with people in pain all the time. Diagnosis takes an average of six months, but it may take even longer, especially for children, who are less likely to be believed when they are in severe pain. Once a diagnosis has occurred, it can take two years, or even three in some parts of the country, for a referral to a specialist pain clinic. I cannot imagine the pain of CRPS, let alone the added pain of knowing that nothing will be done to help for two or three years when every day, and especially every night, is agony—that does not bear thinking about.

Many treatments are effective only in the early stages of the disease, such as neuromodulation or DRG—dorsal root ganglion—treatment. Pain clinics usually offer medication and some physio for about six months, but sufferers are then usually discharged and told that there is nothing more that can be done. Unsurprisingly, they therefore may seek whatever they can, and in some cases that is amputation. I am afraid that private surgeons are offering amputations to people with CRPS at the knockdown price of £5,000 below the knee and £10,000 above it. People with CRPS are in such agony that they are prepared to undergo such an amputation because they think it may get rid of their pain. Unfortunately, as my constituent Victoria has told me, it does not, and often the pain does not go away. However, serious problems can arise when such amputations and major surgery are carried out by private surgeons. At the moment, the NHS picks up the bill for that. I very much hope that it will continue to do so, but this really makes the case that what we actually need is some hope, proper diagnosis and proper support, and a clinical pathway for people with CRPS that will see them through not only their diagnosis, but long-term and lifelong treatment.

I have various proposals for the Minister, as I am sure she was expecting. They are based on the parliamentary questions I have been asking over the past few months. The first and perhaps most important is for her to put that tick-box on the NHS computer so that we can collect data for CRPS diagnoses. Without data on diagnoses, it is difficult to make a proper case for research and for the increased training and awareness of the medical profession that is needed.

In response to my parliamentary question about research, the Minister said:

“The NIHR is committed to maximising the potential impact of research that it funds for patients and the public. Applications to NIHR for research funding are subject to scientific peer review, with awards being made on the basis of value for money, scientific quality and the importance of the topic to patients and health and care services.”

Unless we know the numbers of patients who are suffering, however, it is impossible to decide whether an application for research is value for money.

My second request is on the protocols for diagnosis. Yes, we need to raise awareness among health professionals, as other Members have stated, but we also need to introduce protocols such as the one used at Liverpool’s fracture clinic. CRPS is common after a fracture, and at Liverpool the limb is checked after a plaster cast comes off if it looks unusual, or if unusual pain is reported. In that way, a diagnosis can be made early.

My third request is for an increase in the capacity of pain clinics. It is not acceptable that people have to wait an average of two years, and up to three years, to get the support that they so desperately need. That would probably help to address my fourth request, which is for mental health support for CRPS sufferers, with a 24-hour helpline—the pain is particularly excruciating at night—to help them to get through without feeling that they have to resort to amputation or even suicide.

My final request is for the Minister to meet my constituent, Victoria Abbott-Fleming. In spite of the difficulty involved in travelling with her condition, she has come down from Derbyshire to hear the debate. She has done so much to support and fight for other sufferers. CRPS is not a diagnosis that we would wish on anyone, and I hope that the Minister can offer some hope to its thousands of sufferers.

[The Minister for Care (Caroline Dinenage)]

I congratulate the hon. Member for High Peak (Ruth George) on securing this debate on such an incredibly important issue. She has articulated quite beautifully the hell that people suffering from complex regional pain syndrome go through. The only thing that I can even slightly identify with is the pain of childbirth, but even after that it is unimaginable for us to conceive of the sort of day-by-day endurance and the relentless pain that people suffer. It is a devastating condition and can lead to an overwhelming impact on sufferers and their families, so I thank the hon. Lady for bringing this subject to the House.

The potentially extreme nature of the condition and its symptoms, some of which the hon. Lady described—the excruciating pain, burning, swelling and skin discolouration —can be totally disruptive to everyday living and destroy a person’s quality of life. She spoke very movingly about her constituent Victoria Abbott-Fleming, whose story is incredibly upsetting. I very much forward to meeting Victoria and assuring her that I will do everything I can to move forward on the issues that the hon. Lady mentioned. In circumstances in which extreme decisions have to be considered, high-quality care and support can sometimes make a huge difference to someone’s experience of our health and care services.

I hope that, as I am sure the hon. Lady intended, this debate will help to raise awareness of this very debilitating and extremely painful condition. It has actually been recognised as a medical condition for around 150 years, but problems remain with the diagnosis of CRPS in its very earliest stages. Diagnosis involves excluding a lot of other more common conditions—such as infection or things like rheumatoid arthritis—that can have similar symptoms, and the causes remain largely unknown. Precipitating factors can include injury or surgery, but there is no relationship to the severity of trauma and the development of the pain. In some cases, there is no precipitating trauma at all. It is considered likely that because of the complex nature of the condition, there is absolutely no one single cause. That means that it is difficult to estimate how prevalent CRPS is, as many cases may not have been correctly diagnosed in the first instance.

To improve public awareness, the NHS Choices website provides comprehensive advice on the causes, symptoms and treatment of CRPS. In addition to that, various charities work in this area. The hon. Lady mentioned Burning Nights, which was set up by her incredibly brave constituent; if someone is in unimaginable pain, I can only imagine what a comfort it is for them to be able to speak to or hear from somebody who has experienced it themselves. The charities do great work to support not only the patients who have the condition but their families.

As the hon. Lady says, general practice is where patients with CRPS are most likely to be seen in the first instance. CRPS is a key part of the GP curriculum; it is identified as a key area of clinical knowledge in the Royal College of General Practitioners’ applied knowledge test content guide. The test is a key part of GPs’ qualifying exams, and it ensures that they have the knowledge needed to work as a GP in the NHS.

To improve identification and management of the condition, in 2013 the Royal College of Physicians published best practice guidance for clinicians on the diagnosis, referral and management of CRPS. This guidance was developed with the involvement and endorsement of 21 key organisations involved with the care of people with CRPS, including the Royal College of General Practitioners, the British Orthopaedic Association, the British Pain Society, the British Society for Rehabilitation Medicine and so on.

The guidance, as the hon. Lady says, recommends prompt diagnosis and early treatment. This is to avoid the secondary physical problems associated with disuse of an affected limb and the incredible psychological consequences of living with undiagnosed chronic pain. It has been shown that an early referral to physiotherapy, for example, and encouraging gentle movement as early as possible, may prevent progression of the symptoms. Patients with CRPS are generally best managed in specialist pain management clinics.

[Ruth George]

Will the Minister look at the proposal to set up protocols in fracture clinics and clinics where carpal tunnel surgery is performed? Prevalence of CRPS following such surgery or an injury is particularly pronounced.

[Caroline Dinenage]

I will certainly look at that.

The hon. Lady mentioned delays in referral to a pain clinic, which is something that concerns me. Waiting times should be about 13 weeks once a GP has referred someone, but, as she says, some people wait longer. NHS England commissions the highly specialised pain management services for adults and children, and we will raise the issue with it. The National Institute for Health and Care Excellence has also published guidance for the pharmacological management of neuropathic pain, which includes CRPS. The guidance was updated earlier this year to reflect the latest available evidence.

Patients with CRPS will usually be managed through routine access to primary or secondary care. For patients with the most chronic and intractable pain, a referral can be made to a highly specialised pain service, commissioned by NHS England. Here, patients can receive multidisciplinary expert care and specialised treatment. Once diagnosed, patients can expect access to a range of other healthcare professionals for support and on-going treatment. This includes physiotherapists, occupational therapists, neurologists, a psychologist to help with the associated psychological problems caused by living with CRPS, and other healthcare professionals trained in pain relief.

The hon. Lady spoke about research. The National Institute for Health Research welcomes research funding applications for any aspect of human health, including CRPS. The CRPS UK clinical and research network was established in 2006. It is a research collaboration between a number of UK NHS trusts and academic institutions with an interest in the disorder. Its primary aim is to raise awareness and understanding among health professionals, patients and the general public. This year it is 10 years since the network established the CRPS registry, which now holds over 500 records and contributions and has contributed to seven different national and international research studies.

I thank the hon. Lady again for bringing this important debate to the House. I have attempted to answer as many of her questions as I can, but I will come back to her with anything that I have not covered. I hope that the debate has been helpful in raising the profile of this very difficult and distressing condition.

Question put and agreed to.