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Ask the Expert: Q&A with Cauda Equina Syndrome Specialist Sue Paddison
When dealing with a clinical negligence case involving cauda equina syndrome (CES), our team of solicitors regularly works alongside medical and other experts in this field, who provide unparalleled expert knowledge on this debilitating condition. Such experts offer valuable insights that can help patients to rebuild their lives, while providing valuable evidence that can highlight that negligence has taken place.
One such expert who we work with regularly is Sue Paddison from the London Spinal Cord Injury Centre (LSCIC) in the Royal National Orthopaedic Hospital. Here, we discuss CES in more detail with Sue, who tells us more about her role and what it involves, as well as the options available for those diagnosed with CES.
Please tell us a little bit about your role and how you help people with CES?
I work as a Clinical Specialist Lead Physiotherapist at the London Spinal Cord Injury Centre in the Royal National Orthopaedic Hospital. Our centre has a specialised inpatient integrated care pathway for patients with cauda equina syndrome. This comprehensive multi-disciplinary pathway provides assessment and treatment of impairments resulting from these lesions. Such holistic and joined up services result in coordinated patient care that can efficiently meet patient needs.
I think I can best summarise my role in helping people with CES as partly an education role for patients and professional colleagues and also a clinical role, providing best evidenced based practice and support as part of the team.
I am a medico-legal expert witness preparing physiotherapy reports specialising in spinal cord and cauda equina syndrome. The experience I have gained from working with the NHS specialist services informs my recommendations within my medico-legal reports.
At what stage in the recovery process do CES patients usually come to you?
Patients at the LSCIC are referred to our specialist pathway either from the primary hospital where the patient receives initial treatment or they come to us later in their recovery and are referred once they have gone home. This means that we may manage patients when they are acutely injured or they may be years post injury before they are referred to our service.
Most patients come for a two to three-week intensive admission to allow for holistic assessments and treatment planning by all members of the multi-disciplinary team. Some are managed through our out-patient services but this is the least preferable option. Once patients are discharged home they are followed up regularly in the outpatient clinics and some return for ongoing physiotherapy and orthotic reviews.
Please tell us about the treatment options for people living with CES?
Initial treatment planning commences whilst an individual is in hospital. Comprehensive assessments will include bowel, bladder and sexual function, skin integrity, mobility and functional activities.
Fertility services are provided and onward referral to specialist services is made when required.
Assessment of pain and its impact on function is an important component of rehabilitation. Clinical psychology input assists in supporting the individual to manage their rehabilitation and to establish achievable goals. Strategies are provided to support individuals in self-management of their pain. A further pain management programme may be appropriate, provided as an inpatient for one or two weeks. Pacing techniques and relaxation will form part of rehabilitation. Some patients may require referral to a pain management clinic to consider alternative pharmacological management.
The key objectives of physiotherapy will focus on careful progressive increase in strength and endurance, to enable the individual to improve their functional activities. If an individual requires a wheelchair for some or all mobility, therapy will focus on functional independence using an appropriately fitted wheelchair. The teaching of wheelchair skills both indoors and out in the community form part of the rehabilitation process.
Physiotherapy can include the use of sport, water-based exercises and cardio-vascular fitness training. A variety of equipment can be used to progress standing and walking, including supportive devices to enable weight bearing such as body weight support treadmill systems and biofeedback orthotic devices such as the Bionic Leg or an exoskeleton.
Electrical stimulation of weak muscles using a specialised muscle stimulator is of great benefit in maintaining or improving muscle integrity and providing sensory feedback, where it is reduced. Collaborative assessment with specialist orthotists can provide bespoke orthotics to enable standing and walking.
Soft tissue techniques can be a valuable adjunct in assisting with pain management and improving mobility. Techniques include vibration, massage, acupuncture and the use of transcutaneous electrical stimulation.
Occupational therapists work closely with the physiotherapists to address difficulties in personal activities of daily living, to cope at home and in employment situations.
All these treatments require ongoing monitoring and reviews are provided as an out-patient, following discharge from hospital based treatments.
What other rehabilitation is available for people with CES?
There are many elements that are addressed during the rehabilitation process at the appropriate time, such as arranging a driving assessment using the appropriate adaptations. Vocational rehabilitation and work resilience is an important element of pain management. Loss of confidence and fear of pain can stop an individual from progressing in their return to their life activities. Support of specialist psychologists and occupational therapists can plan an essential role in assisting with relationship changes, loss of intimacy and the impact of changes in sexual function.
Chronic pain rehabilitation is an area that is often not well integrated into cauda equina treatment plans. Many patients will benefit from all or some of the components of these specialist programmes, which can include relaxation, visualisation, mindfulness and cognitive behavioural therapy.
Many individuals with cauda equina syndrome may have an associated history of back pain and that may have been present for many years. These patients are likely to benefit from advice and support of musculo-skeletal physiotherapists and associated practitioners. The use of pain management treatments such as acupuncture and transcutaneous electrical stimulation can be helpful and enable an individual to increase their activity levels and build strength.
The use of sports and physical activity clubs can help to build stamina and improve mobility. Personal trainers can assist in exercise programmes providing essential motivation and monitoring.
Other therapies have been found to be beneficial in providing motivation and distraction from discomfort whilst building stamina and confidence, art therapy and horticultural therapy have both been found to be valuable but are more difficult to source. We are fortunate that some of the national spinal injuries services do have access to these options for their inpatients.
Would you say that CES is a widely understood condition, or is there still a lot to learn in this area?
There is no doubt that management of CES can be highly complex. The number of patients in this group form a small part of what is already a small speciality group of spinal injured patients. It is easy to see why experience and expertise of managing these patients is not widely available and experience is generally found in the specialist centres where they see a large cohort of patients.
The problems that present in CES can be confusing, issues around bladder and bowel function can be complicated by medications used for pain management and by the virtue that the lesions are usually incomplete.
The physical presentations after a cauda equina nerve damage can be confusing, where an individual has variable degrees of loss of movement and sensation, this makes it difficult for them to control their leg movements. It is common to see patterns of muscles contracting against each other, this co-contracting results in what feels like cramps and produces abnormal movement patterns. The mechanisms for why this can happen are not fully understood. Unfortunately, the high levels of pain often associated with cauda equina nerve damage make rehabilitation more challenging. We need to understand the mechanisms of pain and altered movement patterning better to further help our patients.
Find out here how JMW Solicitors supports individuals who have been diagnosed with Cauda Equina Syndrome. Patients who were misdiagnosed and not treated in time due to medical errors are entitled to claim compensation to help with the financial aspect of the disabilities they have been left with and this is an area JMW specialises in. You can also find out more about the work carried out by the LSCIC by visiting the website here.