Hospital based rehabilitation services; Rising to the challenge of the COVID-19 pandemic
Valerie Stevenson MBBS, MRCP, MD, is a Consultant Neurologist and Clinical Director for Rehabilitation at University College London Hospitals. She is the lead of the multidisciplinary spasticity management service.
Rachel Farrell is a Consultant Neurologist at the National Hospital Queen Square, and an honorary associate Professor in the Department of Neuroinflammation, Queen Square, Institute of Neurology, UCL. Dr Farrell specialises in Neurorehabilitation and complex spasticity management including Intrathecal baclofen and botulinum toxin. Dr Farrell also leads a multidisciplinary service to manage walking impairment in people with MS. Her research activity involves commercial and investigator led trials in spasticity and MS.
Gita Ramdharry PhD, MSc, PGCert BSc, is a Consultant Allied Health Professional in Neuromuscular Diseases at the National Hospital for Neurology and Neurosurgery. She is an Honorary Senior Lecturer at UCL and a Visiting Professor at Kingston University. Her research interests include rehabilitation interventions for people with nerve and muscle disease.
Orlando Swayne MA (Cantab) MB BS MRCP (Neurol) PhD, is a Consultant neurologist at the National Hospital for Neurology & Neurosurgery, and at Northwick Park Hospital, Honorary Associate Professor at the UCL Institute of Neurology. Orlando Swayne trained at Cambridge University and then in London, and obtained a Neuroscience PhD from UCL. He has published work on the control of movement and on Neurorehabilitation following stroke, from research done at UCL and at the NIH in the USA. He completed a post-training fellowship in Neurorehabilitation.
Nick Ward, is a Professor of Clinical Neurology and Neurorehabilitation and Honorary Consultant Neurologist. His clinical and research interest is in stroke and neurorehabilitation and in particular the assessment and treatment of upper limb dysfunction.
Siobhan Leary, MBBS, MD, FRCP, is a consultant neurologist at the National Hospital for Neurology and Neurosurgery. She has specialist interests in multiple sclerosis and vocational rehabilitation.
Sarah Holmes, is a Clinical Specialist Physiotherapist. She completed her physiotherapy BSc (hons) at Birmingham University in 1999. She was accepted onto an NIHR Masters of research programme at St Georges in 2010. Following this she completed a leadership and management masters module. She continues research into Neuromuscular conditions at the National Hospital for Neurology and Neurosurgery.
Correspondence to: Val Stevenson, The National Hospital for Neurology and Neurosurgery UCLH, Queen Square, London, WC1N 3BG. E. firstname.lastname@example.org
Conflict of interest statement: The rehabilitation department at University College London Hospitals has received educational grants from Medtronic. Dr Farrell has received honoraria and hospitality from Merck, TEVA, Novartis, Genzyme, Allergan, Merz, Ipsen, GW Pharma and Biogen. Dr Farrell’s current research activity is supported by the NIHR Biomedical Research Centre UCLH.
Provenence and peer review: Submitted and reviewed internally
Date first submitted: 28/5/2020
Acceptance date after peer review: 28/7/20
Published online: 30/7/20
Published under a Creative Commons license
- Prioritising rehabilitation is essential in the UK’s recovery plan for the COVID-19 pandemic.
- Currently there is a mismatch between rehabilitation needs and available services; investment is critical for inpatient, community and technological service delivery models.
- Embracing technological solutions and creating novel partnerships with businesses, the private and charitable sectors are pivotal to success in developing rehabilitation strategies for the UK to cope with the COVID-19 pandemic.
As elective hospital activity resumes there is an increasing demand on rehabilitation services to manage those with COVID-19 related impairments, patients who had their rehabilitation terminated to release resources to the acute emergency response and those living with long term conditions. Investment equal to or above that needed to manage the acute pandemic response will be required along with innovative and novel strategies to deliver rehabilitation through technologies and partnership with business and charitable organisations.
The COVID-19 pandemic has stressed all areas of the health and social care network. Services across all sectors radically reconfigured to support the acute response in anticipation of large numbers of patients and staff affected by COVID-19. Services now face many new challenges, including how we deal with the need for physical distancing within patients and staff, the effects of social isolation on patients denied visitors in hospital and social care settings, and the difficulties in delivering rehabilitation interventions without hands on treatment.1
Acute phase effects on inpatient rehabilitation services
In the early phase of the pandemic response the focus was on saving lives. The imperative was to ensure that there were sufficient beds available for acute care. Many patients had their rehabilitation programme cut short as specialist units suddenly changed their focus away from managing patients with complex needs to rapidly discharging such patients from hospital and creating capacity. For inpatient neurorehabilitation units this meant making difficult decisions about goal prioritisation and discharge destinations. The rehabilitation needs of these patients however remain and are likely to be exacerbated by interruption of their treatment.
COVID-19 itself has generated a new cohort of patients with serious rehabilitation requirements secondary to the neurological, cardio-pulmonary, musculoskeletal, psychological and psychiatric consequences of the disease and prolonged stays in intensive care units.2 Neurological presentations include novel COVID-related stroke,3 critical illness myopathy or neuropathy, Guillain-Barre Syndrome, brain injury from prolonged hypoxia, acute disseminated encephalomyelitis and necrotising haemorrhagic encephalopathy affecting the brainstem.4 All of these conditions result in significant and often complex neurological impairment requiring in-patient multidisciplinary rehabilitation. It has been estimated that 45% of hospital COVID-19 patients will require support from health and social care and 4% will need inpatient rehabilitation.5
COVID-19 has also had indirect effects on healthcare. There has been an unexpected and alarming reduction in patients presenting to hospital with early neurological symptoms because of fears of coming into contact with the virus.6 The consequences for healthcare services, as patients once again seek medical help, are unclear. Patients who have faithfully adhered to the lockdown, particularly in the poorer sections of society already at higher risk, are accumulating unmet primary healthcare needs; untreated hypertension or diabetes, reduced exercise, all of which could contribute to a further late rise in neuro- and cardiovascular disease.
We must also not forget those patients with pre-existing long-term neurological conditions (LTCs); an estimated 10 million people in the United Kingdom.7 Concerns regarding immunosuppression, re-deployment of staff, changes to the hospital environment and patient anxiety have created a risk of treatment interruption or delay for those receiving infused disease modifying treatments (e.g. for multiple sclerosis, immune-mediated neuropathies) increasing the risk of relapse and subsequent deterioration. In addition many of these patients rely on timely access to specialist rehabilitation services for ongoing symptom management including botulinum toxin, intrathecal baclofen, splinting and functional electrical stimulation. Delays in access lead to distress, loss of function and reduced quality of life.8 Similarly patients with Rare Neurological Disorders (RNDs), often life limiting conditions such as the muscular dystrophies, struggle to access therapy and rehabilitation services in normal times. Specialist clinics with detailed understanding of these conditions are few and face significant challenges in serving a population dispersed around the UK.
Shielding and other COVID-19 restrictions enforce extended sedentary periods with potential for profound effects. Reduced aerobic capacity, muscle strength and general deconditioning will impact on mobility, falls risk, function, independence, mood and wellbeing, contributing to increased care and equipment needs with their associated costs. Access to rehabilitation services for those living with LTCs has always been a low priority for both inpatient and community based rehabilitation, but now represents an even bigger healthcare challenge. It seems likely that in the wake of COVID-19 the mismatch between rehabilitation needs and the services available will become starker.6,9
Recovery phase and case for investment
The recovery phase of an emergency and the necessary structures, processes and relationships that underpin it are often more expensive and harder to get right than the acute response.10 Recovery is defined as the process of rebuilding, restoring and rehabilitating the community following an emergency, but it is more than simply the replacement of what has been lost. There is a clear opportunity here to regenerate the field of rehabilitation through raising aspirations, improving skills and optimising environments whilst introducing new people, collaborations, team working and dynamism.10,11 These are essential principles that we, the rehabilitation community, must get right.
As COVID-related admissions are declining and we begin cautiously to re-open our hospitals, rehabilitation must be a priority. It is well established that rehabilitation is both clinically and cost-effective through increasing independence, social reintegration and return to work, reduction of ongoing care costs and appropriate long-term disability management and palliative care.1 Prioritising rehabilitation will take serious organisational and financial investment in the necessary resources with clear understanding of the issues involved. Not only do the direct physical and/or pulmonary consequences of COVID-19 need addressing but the complex needs of many, particularly those living with LTCs have to be considered. 2,5
Due to the national healthcare strategy of increasing capacity in acute hospital settings for COVID-19 cases, many patients with unmet rehabilitation needs are now left untreated at home or in social care settings. The responsibility for managing these patients cannot be allowed to fall solely to community teams. Community rehabilitation and support services have been drastically under-resourced in recent years with reductions in staffing or provision of community rehabilitation teams, early supported discharge teams, re-ablement teams, neuro-navigators and community nurse specialists. Similarly, the provision of borough-based Level 2 neurorehabilitation units (specialist neurorehabilitation suitable for a person with a moderate stroke), is inadequate with some entire counties having no such facility at all.
It is therefore imperative that we make a case for investment in all areas of rehabilitation; community based, local Level 2/3 inpatient services, specialist regional level 1 inpatient services and facilitation of innovative, flexible and highly skilled delivery of specialist rehabilitation to patients in their own homes.
New models of care
Necessity certainly breeds innovation and the current situation has forced us to challenge ourselves and adopt new approaches of rehabilitation delivery. In many cases this has proved to be a way to improve or enhance existing delivery pathways, although it is essential to recognise that significant investment in equipment and training is necessary to ensure successful implementation of technologies such as video clinics.12
Vocational rehabilitation: With the associated economic downturn keeping people with disabilities in work has never been more crucial. Vocational Rehabilitation is an area which lends itself to telephone and video consultations which can be run from specialist centres. There are some exceptions where face-to-face consultations are required including cognitive and upper limb assessments along with workplace visits (although these could be explored with hand held devices via video when people return to work); these small numbers can be managed with appropriate social distancing. Home working has anecdotally been beneficial to many patients who suffer from fatigue and has always been a commonly requested reasonable adjustment, but is sometimes resisted by employers; it is hoped that the general shift to home working will facilitate this adjustment in the future and help many of our patients living with neurodisability or LTCs to stay in work.
Long term conditions and rare neurological disorders: Alongside telephone and video consultations there are additional opportunities for innovative working that may better meet the needs of some people with LTCs. Different models of care can incorporate video clinics with local therapists, carers or family members and exercise professionals, limiting travel and fostering local support for the patient. Remote group interventions provide connection for people who can feel isolated with the rarity of their disease, setting the foundation for peer as well as professional support. Groups are also important for education elements about conditions (e.g. newly diagnosed multiple sclerosis group) or interventions such as fatigue. Self-management strategies are amenable to virtual platforms, as demonstrated by the Bridges programme, an initiative developed by a healthcare organisation partnering with a social enterprise.13 Set up and facilitation of “blended care” requires additional technological and personnel resource to current specialist service set up, but has the potential not only to meet the gap in support but to enhance care for people with LTCs and RNDs.
Neuro Rehab OnLine (N-ROL): Rapid implementation of new ideas into healthcare settings is notoriously difficult. N-ROL is an example of what can be achieved by the NHS through partnership with academic (University College London) and charitable organisations (SameYou, sameyou.org). N-ROL is a novel (currently) London based service established rapidly to provide group-based online virtual rehabilitation and support, allowing one or two clinicians to work with groups of up to 10 or 20 patients at a time in their own homes. Groups can focus on functional fitness, upper limb function, communication and cognitive difficulties, fatigue management, as well as emotional support for patients and importantly also for carers. The aim is to complement, not replace, stretched community teams; close communication between the two is crucial. Setting up such a service may never have happened outside of a pandemic, but the rapid release of charitable funds to allow secondment of University academics into this new NHS service has been truly ground breaking. N-ROL provides a template for how different stakeholders can come together to provide the ideal conditions for rapid development of desperately needed innovative new services driven by patient need.
The COVID-19 pandemic has created an urgent need for rehabilitation services to take centre stage during the recovery process. Given the chronic under-resourcing of rehabilitation services over recent years significant financial and human resource investment is critical to our success. Alongside this there is the opportunity to build on what already works and evolve how we deliver rehabilitation interventions by embracing technological advances and creating novel partnerships with businesses, the private and charitable sectors.
- Rehabilitation in the wake of Covid-19 – A phoenix from the ashes. British Society of Rehabilitation Medicine (BSRM) https://www.bsrm.org.uk/downloads/covid-19bsrmissue1-published-27-4-2020.pdf Accessed 21/05/2020
- FICM Position Statement and provisional Guidance: Recovery and Rehabilitation for patients following the pandemic. May 2020. https://www.ficm.ac.uk/sites/default/files/ficm_rehab_provisional_guidance.pdf Accessed 21/05/2020.
- Beyrouti R, Adams ME, Benjamin L, Cohen H, Farmer SF, Goh YY, Humphries F, Jäger HR, Losseff NA, Perry RJ, Shah S, Simister RJ, Turner D, Chandratheva A, Werring DJ. Characteristics of ischaemic stroke associated with COVID-19. J Neurol Neurosurg Psychiatry. 2020 Apr 30. pii: jnnp-2020-323586. doi: 10.1136/jnnp-2020-323586. [Epub ahead of print].
- Calcagno N, Colombo E, Maranzano A, Pasquini J, Keller Sarmiento IJ, Trogu F, Silani V. Rising evidence for neurological involvement in COVID-19 pandemic. Neurol Sci. 2020 May 12. doi: 10.1007/s10072-020-04447-w. [Epub ahead of print]
- Murray A, Gerada C, Morris J. We need a Nightingale model for rehab after covid-19. 8 April 2020. Accessed 21/05/2020.
- Leocani L, Diserens K, Moccia M, Caltagirone C. Disability through COVID-19 pandemic: Neurorehabilitation cannot wait. Eur J Neurol. 2020 May 13. doi: 10.1111/ene.14320. [Epub ahead of print]
- Long-term neurological conditions: management at the interface between neurology, rehabilitation and palliative care. British Society of Rehabilitation Medicine (BSRM). March 2008. https://www.bsrm.org.uk/downloads/long-term-neurological-conditions-concise.pdf Accessed 21/05/2020.
- Farrell R, Baker D. Optimisation of pharmacological management of multiple sclerosis related spasticity. ACNR 2019;19(1):13-15.
- Rose L, McKim D, Leasa D, et al. Trends in incidence, prevalence, and mortality of neuromuscular disease in Ontario, Canada: A population-based retrospective cohort study (2003-2014). PLoS One. 2019;14(3):e0210574. Published 2019 Mar 26. doi:10.1371/journal.pone.0210574
- HM Government Emergency Response and Recovery. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/253488/Emergency_Response_and_Recovery_5th_edition_October_2013.pdf
- National Recovery Guidance. https://www.gov.uk/guidance/national-recovery-guidance Accessed 21/05/2020.
- Wherton J, Shaw S, Papoutsi C, et al. BMJ Leader Published Online First: doi:10.1136/leader-2020-000262. https://bmjleader.bmj.com/content/early/2020/05/17/leader-2020-000262. Accessed 21/05/2020.
- Bridges Self-management: Adapting to life with a neuromuscular condition. https://nmd.bridgesselfmanagement.org.uk/ Accessed 21/05/2020.