Today, 18th July 2021, the UK National Institute for Health Research (NIHR), one of the major health research funding bodies in the UK announced £19.6M had been allocated to research into the late effects of Covid-19 infection (here), commonly known as Long Covid. This is in addition to £18.5 million allocated in February (here), funding that was focused on increasing basic understanding of Long Covid: what, why, how frequent etc. The latest funding focuses on treatment, mostly rehabilitation. This post summarises the information on the NIHR webpage, as more detailed information is not yet publicly available as far as I can discover. My main theme is that Rehabilitation Medicine has an opportunity to demonstrate its leading role in research, in service development and delivery, and in collaborating with both research and service organisations.
Before continuing, I must emphasise that, although the speciality is known as Rehabilitation Medicine, it is a term that can and should include all professions as it does in the American Congress of Rehabilitation Medicine, for example. (here) The word, ‘Medicine’, locates it as a healthcare speciality which includes doctors among the many professions. For those unfamiliar with the speciality term, Rehabilitation Medicine, it covers all rehabilitation including all ages, all clinical settings, and all conditions from psychiatry and psychology through acute medical and surgical conditions and onto long-term and life-limiting conditions, including end-of-life.
Although it may surprise some people, evaluative research in rehabilitation has a long history, and constitutes about 10% of healthcare research output. For example, in 2017, 894/9217 (9.4%) of all Cochrane systematic reviews were concerned with rehabilitation (here), and rehabilitation research regularly appears in high impact health journals such as the New England Journal of Medicine, the Journal of the American Medical Association, and the Lancet.
Academic rehabilitation departments are relatively rare in the UK, and most are located within specific professional departments and focus on the specific profession’s interventions. Despite this, the UK undertakes and publishes much rehabilitation research.
On the other hand, formally recognised rehabilitation services are rare. My evidence in defence of this statement is this:
- rehabilitation, as an expert activity, requires and is defined by the involvement of a multi-professional team;
- the multi-professional team must include, as integral members of the team (i.e. not simply brought in when needed) all the professions needed to assess (diagnose) and plan treatment, and to deliver the majority of the treatments needed by the patients being seen;
- all patients will have some underlying ‘medical’ (i.e. disease-related) condition, and all patients are likely to present with new, or unexplained symptoms;
- therefore, all rehabilitation teams need, as a full-time member of the team or the team’s service, a recognised medical rehabilitation expert (i.e. a doctor);
- there are approximately 170 rehabilitation medicine consultants in the UK. To this number can be added a small number of consultants who have acquired rehabilitation expertise and undertake rehabilitation for at least 30% of their time, coming from specialities such as stroke medicine, geriatrics, paediatrics, psychiatry and neurology. This might reach a total of an additional 100 (a guess).
There is no register of properly-resourced rehabilitation services, but an estimate is that there may be about 100 services in the UK that provide rehabilitation with a team that includes expert medical input. It is evident that there are not enough services to meet the needs of patients with Long-Covid, who are only a small proportion of all patients needing rehabilitation.
In this context, rehabilitation needs to establish, quickly and soundly, that multi-professional rehabilitation teams can research their work, can adapt and improve their services to meet needs, and ultimately do benefit patients. This NIHR research funding offers a good opportunity.
Project one – STIMULATE-ICP
The largest single project is STIMULATE-ICP (Symptoms, Trajectory, Inequalities and Management: Understanding Long-COVID to Address and Transform Existing Integrated Care Pathways), funded at £6.8M. Though this is also evaluating the effects of aspirin, colchicine, and loratidine, and investigating some disease mechanisms, it is also assessing “enhanced rehabilitation – the provision of joined-up specialist care centred around an app for patients allowing them to track their symptoms.”
The only details available on the rehabilitation research project are these (here): “Within the overall programme of research, a trial coordinated by the University of Central Lancashire will recruit over 4,500 people with long-COVID, starting with six sites in Hull, Derby, Leicester, Liverpool, London (UCLH) and Exeter.
Individuals will be randomly assigned to usual care or a new pathway, including community-based, comprehensive MRI scan (using imaging technology called CoverscanTM developed by Perspectum) which can map the effects of COVID-19 on several of the body’s key organs) and enhanced rehabilitation (using a digital health platform called Living with COVID RecoveryTM developed by Living With).
A rehabilitation trial with 4,500 people. If I have understood the statement correctly, in that it is referring to a randomised trial comparing two approaches, this will surely be the biggest trial of rehabilitation undertaken yet.
Project two – LOCOMOTION
The second largest project is the LOCOMOTION (long COVID multidisciplinary consortium: optimising treatments and services across the NHS) study, funded at £3.4M. This is completely focused on rehabilitation services, with specific attention on people who do not or cannot access services. The project proposal is available here.
It is a UK-wide project with 28 collaborators and involving 10 centres with existing Long Covid clinics. It is led by Dr Manoj Sivan from the Leeds Institute of Rheumatic and Musculo-skeletal Medicine, a part of the University of Leeds Academic Department of Rehabilitation Medicine. In addition to five doctors in Rehabilitation Medicine, the collaborative team includes specialists from many other specialities: health economics, data handling and analysis, biostatistics, general practice, physiotherapy, psychology, psychometrics, electrical engineering, patient involvement, respiratory medicine and occupational health, and more.
Project three – LISTEN
The third project focused on rehabilitation is the LISTEN (Long COVID Personalised Self-managemenT support – co-design and EvaluatioN) study, funded at £1.1M. In collaboration with patients, the research taem will develop a self-management programme and then ‘test’ the programme – the brief description does not indicate if there will be a proper randomised, comparative evaluation but I assume there will be. The project is led by Professor Fiona Jones, Professor of Rehabilitation Research at St George’s University of London and Kingston University.
Other rehabilitation projects.
There are four other projects that relate directly to rehabilitation. The only information is their titles:
- ReDIRECT: Remote Diet Intervention to Reduce long Covid symptoms Trial. Dr David Blane, University of Glasgow – £999,679
- Understanding and using family experiences of managing long COVID to support self care and timely access to services. Professor Sue Ziebland, University of Oxford – £557,674
- Using Activity Tracking and Just-In-Time Messaging to Improve Adaptive Pacing: A Pragmatic Randomised Control Trial. Professor Nicholas Sculthorpe, University of the West of Scotland – £317,416
- Long COVID Core Outcome Set (LC-COS) project. Dr Tim Nicholson, King’s College London – £139,619
The third study, investigating what might also be termed Graded Exercise Therapy with a mechanism to regulate and adapt the increase in exercise, sounds interesting and, if successful, capable of being used widely.
The total sum allocated to projects that include a significant rehabilitation component, or are entirely on rehabilitation, is £13,414,400, a substantial 68% of the total.
This must be the largest formal and acted-on recognition by an NHS body of the importance of rehabilitation, both in terms of research and, more importantly, in terms of providing more and better services. The LOCOMOTION project is explicitly concerned with service development and evaluation. I hope that it has the impact that UKROC had over a ten-year period. (here) We need to build on this project, and the other projects, to achieve better rehabilitation services for all, as outlined here.
I hope, and expect, that there will further exchange of ideas, and collaborative research between the seven rehabilitation projects (and indeed all the projects). It is a great opportunity for rehabilitation to raise it profile, and working together will be much more effective.
The proposals also demonstrate that rehabilitation research, like most research, requires multi-professional, and usually multi-centre collaboration. The specialities involved in these seven projects cover many professions and areas of expertise.
It is specifically interesting to note than none of the projects are focused on input from any single profession. The era of research into “the benefits of (fill in a therapy) on outcomes for patients with (fill in a condition)” are, hopefully, ending. (here)
Last, it is worth considering what rehabilitation experts are adding specifically. The key expertise of Rehabilitation Medicine and, hopefully, all rehabilitation experts (see here) is an ability to recognise, disentangle and identify the multiple factors that contribute to a patient’s disabling problem. It is rare that there is a single explanation and single factor that dominates the situation.
In Long-Covid it is obvious that multiple factors will be at play, varying in proportion and importance from patient to patient. The NIHR, in its second themed review (here) concluded that Long-Covid could include: “post-ICU syndrome; long-term organ damage; post-viral syndrome and, potentially, an entirely novel syndrome, separate from the others such that it could more specifically and uniquely be identified as ‘Long Covid’. Indeed there is some recent evidence that Long Covid might be an active disease, with continued inflammatory responses, lingering viral activity and/or blood clotting disorders.”
Rehabilitation Medicine doctors are specifically trained to be expert at dissecting complex medical problems into their component parts and identifying the many interventions that are needed for a patient. They will help negotiate and set goals, plan actions, and they will often have specific medical actions to take. This programme of research will, hopefully, highlight the knowledge and skills that the new curriculum (here) gives all doctors who are expert in rehabilitation. It will probably also highlight the need to train other professions in rehabilitation as a particular area of expertise in addition to their professional expertise, becoming Advanced Clinical Practitioners in Rehabilitation (here)
This series of research studies into Long-Covid is a once-in-a-lifetime opportunity for rehabilitation to become both accepted and, more importantly, funded and organised appropriately. (here) Between them, the studies cover trials investigating the effects of existing rehabilitation interventions, (here) the development and evaluation of services, and the development of assessments and measures specific to this condition. They also pay attention to groups who may not access or receive services, and investigate biological mechanisms and drug treatments. These are all within the scope of rehabilitation research. I do not know if this site will exist in 10 years time, but if so I hope it will be able to celebrate not only the specific success of these projects, but also a dramatic growth in rehabilitation services.