Complex Regional Pain Syndrome — House of Commons, 2018-06-19
Topic: Health
Ruth Stephanie Nicole George (Labour, Centre-left): 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.