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.