Bath Centre for Pain Services – Complex Regional Pain Syndrome (CRPS) Service Royal National Hospital for Rheumatic Diseases

Information for Private and Overseas Patients Aiming to improve the quality of life for those with CRPS, through education and physical rehabilitation and support them in achieving their optimum functional potential. Version 2.2 Date: March 2015 Author: CRPS Team Review Date: April 2016

WHAT IS COMPLEX REGIONAL PAIN SYNDROME? Complex Regional Pain Syndrome (CRPS) is a term used to describe a collection of symptoms where pain in a limb (usually a single limb) is the major problem. Pain may start for no apparent reason or following injury to the limb (such as a fracture). Whereas pain would normally settle as the injury heals, in CRPS intense pain continues and spreads beyond the original site of the injury. Other features of CRPS include altered temperature and colour changes and impaired movement of the painful limb. CRPS can be difficult to diagnose as there is no single diagnostic test and no cure currently exists. Research has shown that the average timescale between onset of symptoms and diagnosis is currently two years. Appropriate diagnosis and early intervention from a specialist multidisciplinary team (MDT) is crucial to reduce the long-term effects of this complex condition which can have a significant impact on a person, affecting all areas of their life and that of their family.

THE SPECIALIST COMPLEX REGIONAL PAIN SYNDROME SERVICE At the Royal National Hospital for Rheumatic Diseases, Our specialist multidisciplinary team is highly experienced in rehabilitating people with Complex Regional Pain Syndrome. Established as one of the first specialist services, we have over ten years’ experience in treating CRPS and receive referrals from the UK and abroad. We are internationally renowned for our research in CRPS, which underpins our treatment. Our highly specialised team deliver CRPS specific care by providing appropriate diagnosis, assessment and treatment of CRPS and offer a residential rehabilitation programme tailored to the individual needs of the person. Our service offers: • National and international referrals • Prompt and timely specialist intervention • CRPS specific treatment tailored to the needs of the individual patient by highly specialist health professionals • Rehabilitation underpinned by evidence and in line with Royal College of Physicians CRPS clinical guidelines

A typical CRPS assessment & treatment package includes: • Detailed assessment and consultation by a Professor in Pain Sciences and Pain Medicine Consultant • Assessment of rehabilitation needs by a senior Occupational Therapist/ Physiotherapist and Health Psychologist • Diagnostic investigations • Two-week inpatient CRPS specific treatments tailored specifically to the patient’s needs • Ongoing support and expertise, following inpatient programme

The Expert Team We offer a Consultant Nurse and Pain Medicine-led service, comprising: • Professor Candy McCabe (Nurse Consultant) • Health Psychologist • Occupational Therapist • Physiotherapists • Clinical Research Occupational Therapist and Physiotherapist • Secretary/ Administrator • Clinical Measurement Personnel

Our treatments include: • • • • • • • • • • • • • • • •

Medication review and advice Land-based physiotherapy Hydrotherapy Occupational therapy Psychology Sensory re-education (Desensitisation) Mirror visual feedback Graded motor imagery principles Gait and posture re-education Techniques to improve body perception disturbances Acupuncture Pain management techniques Relaxation and stress management techniques Strategies for improved sleep Communication skills Vocational rehabilitation

Patients participating in the programme gain: • Education and knowledge about their symptoms and how to best manage them • Confidence in living with CRPS • Graded goal-directed activities • Learning self-directed strategies for home • Meeting others with the condition • Expertise and support in continuing treatment following the inpatient programme

WHAT TO EXPECT FROM THE INPATIENT PROGRAMME The inpatient programme typically lasts two weeks and patients are engaged in individual and group therapy each working day. On a daily basis, patients complete two hours of one-to-one supervised therapy, which includes land-based physiotherapy, hydrotherapy and occupational therapy. Health psychology input is provided as appropriate. Sessions last 30 minutes and are timetabled to allow sufficient rest and recovery between sessions. By focussing on one-to-one sessions, we are able to tailor rehabilitation to each patient’s needs. In addition, patients participate in group sessions run by the team covering pain physiology, pain medications, dealing with emotions and goal setting. Between therapy sessions, patients are encouraged to continue with specific therapy tasks and put into practice skills in actively self-managing their pain. Weekend leave is encouraged, so that patients can practice their newly learnt techniques and exercises. A detailed debrief with the patient following the weekend enables the team to explore their achievements and their difficulties; this enables focussed planning of their rehabilitation in the second week. “It felt like I was being taken a step backwards, but in fact I was learning how to use my limb properly.”

“The programme is holistic and has helped me to put the routine back into my life.”

“Well worth every minute, but the overall criteria when you come in is that you have got to be positive.”

RESEARCH Research is an integral part of our service. We have a wide range of projects aimed at gaining a better understanding of this complex condition. Patients will be invited to complete questionnaires to assess various aspects of their condition, how it affects their lives and the impact of treatments. Our specialist areas of interest are the mechanisms behind CRPS, the patient’s experience of living with the condition and novel therapeutic interventions. We have pioneered the use of a new therapy in CRPS (Mirror Visual Feedback) which aids some people to reduce their pain whilst exercising their affected limb. We are supported by an in-house clinical measurement laboratory which enables assessment of autonomic responses to interventions and altered condition states.

Key published research includes: Moule P, Lewis JS, McCabe CS. Designing and Delivering an Educational Package to Meet the Needs of Primary Care Health Professionals in the Diagnosis and Management of those with Complex Regional Pain Syndrome. 2013; doi 10.1002/msc.1057 Lewis J, Schweinhardt P. Perceptions of the Painful Body: The Relationship Between Body Perception Disturbance, Pain and Tactile Discrimination in Complex Regional Pain Syndrome. European Journal of Pain, 2012; 16: 13201330. Rodham K, Boxell E, McCabe C, Cockburn M, Waller E. Transitioning from a Hospital Rehabilitation Programme to Home: Exploring the Experiences of People with Complex Regional Pain Syndrome. Psychol Health, 2012; 27(10): 1150-1165. Johnson S, Hall J, Barnett S, Draper M, Darbyshire G, Haynes L, Rooney C, Cameron H, Moseley GL, de Williams AC, McCabe C, Goebel A. Using Graded Motor Imagery for Complex Regional Pain Syndrome in Clinical Practice: Failure to Improve Pain. Eur J Pain, 2012; 16(4): 550-561.

Lauder A, McCabe CS, Rodham K, Norris E. An Exploration of the Support Person’s Perceptions and Experiences of Complex Regional Pain Syndrome and the Rehabilitation Process. Musculoskeletal Care 2011; 9(3):169-179, 2011. Hall J, Harrison S, Harris N, McCabe C, Blake D. Pain and Other Symptoms of CRPS can be Increased by Ambiguous Visual Stimuli – An Exploratory Study. Eur J Pain. 2011; 15 (1):17-22. Lewis JS, Coales K, Hall J, McCabe CS. Now You See It, Now You Don’t. Sensory-Motor Re-Education in Complex Regional Pain Syndrome. Hand Therapy 2011: 16:29-38. McCabe CS. Mirror Visual Feedback; A Practical Approach. Journal of Hand Therapy 2011; April-June: 170-178. Lewis J, Kersten P, McCabe CS, McPherson KM, Taylor GJ, Harris ND, Blake DR. Wherever is My Arm? Impaired Upper Limb Position Accuracy in Complex Regional Pain Syndrome. Pain. 2010 Jun: 149(3):463-9. Goebel A, Baranowski A, Maurer K, Ghiai A, McCabe C, Ambler G. Intravenous Immunoglobulin Treatment of Complex Regional Pain Syndrome: A Randomized, Controlled Trial. Annals of Internal Medicine 2010:152:152-158 Rodham K, McCabe C, Blake D. Seeking Support: An Interpretative Phenomenological Analysis of an Internet Message Board for People with Complex Regional Pain Syndrome. Psychology and Health 2009: 24 (6): 619– 634. McCabe C, Lewis J, Shenker NG, Hall J, Cohen H, Blake DR. Don’t Look Now! Pain and Attention. Clinical Medicine 2005; 5 (5):482-486. McCabe CS, Haigh RC, Halligan PW & Blake DR. Referred Sensations in Complex Regional Pain Syndrome Type 1. Rheumatology, 2003: 42:10671073. McCabe CS, Haigh RC, Ring EFR, Halligan PW, Wall PD & Blake DR. A Controlled Pilot Study of the Utility of Mirror Visual Feedback in the Treatment of Complex Regional Pain Syndrome (Type 1). Rheumatology 2003: 42:97-101.

USEFUL RESOURCES AND LINKS Complex Regional Pain Syndrome Service Royal National Hospital for Rheumatic Diseases, Bath www.rnhrd.nhs.uk/page/79

American Patient Association for CRPS www.rsds.org

Complex Regional Pain Syndrome - Arthritis Research UK www.arthritisresearchuk.org/arthritis-information/conditions/ complex-regional-pain-syndrome.aspx

For further information about our Complex Regional Pain Syndrome service and research, or for referral advice please contact Professor Candy McCabe, Consultant Nurse, on 01225 473462 or email [email protected] www.rnhrd.nhs.uk Royal National Hospital for Rheumatic Diseases Upper Borough Walls, Bath BA1 1RL

We value your feedback. Your comments, suggestions, praise and complaints will help us to improve the standard of our services. Please contact PALS to feedback your views on the hospital. Tel: 01225 825656 or email [email protected]