The Long COVID App: “When do NHS staff get to be as proactive as this?"
Physiotherapists Heidi Ridsdale (left) and Rachel Okin (right) work in the NHS Central North West London’s (CNWL) Long Term Conditions (LTC) Team as Highly Specialist Physiotherapists. They took some time out to talk about their enthusiasm for a telehealth approach to Long COVID Recovery. This is their version of how they collaborated with Living With to develop an app called ‘Living With COVID Recovery’.
It is estimated that around 10% of survivors of COVID-19 exhibit signs and symptoms for a period of 12 weeks or longer and which is often described as Long COVID or Post-COVID Syndrome (NICE, 2020). The SARS-CoV-2 is a novel virus and there is no textbook on it nor on Long COVID recovery so this work is all new.
We worked creatively and innovatively to develop and implement a pathway and therapeutic approach to support Long COVID recovery using an app developed by Living With called Living With Covid Recovery.
Our experience since the summer of 2020 of supporting people recovering with Long COVID has developed our therapeutic knowledge and understanding of the challenges that recovery from this new illness poses.
An Engaging Tool
The app is a very engaging tool that recognises the scope of the presentation of people recovering from Long COVID.
Central and North Western London CCG (CNWL) has been the first Community NHS Trust to pilot this app and has been able to contribute to the development of the therapeutic information and functionality of it.
With the pressures on staffing (including those being redeployed to the acute services supporting COVID and other essential and urgent work), CNWL realised that there was a likely tidal wave of patients coming their way who would be requiring some type of rehab. This lack of staffing meant it would not be possible to meet the demand of patients recovering from COVID.
The understanding of post-viral symptoms from other Long-Term Conditions(LTCs) meant that they started looking towards digital solutions to manage the volume of work.
CNWL was approached by an app developer at a crucial time so we decided to look into it.
Barts Health NHS Trust had already been using it to support the management of patients in their acute clinic. University College London Partners were involved and as CNWL in Camden works so closely with UCLH it made sense to look into the app further.
We worked with the app developer to make it work for community services and provided our input clinically around goal-setting and use.
It has been a really rewarding process of co-production. Living With and UCLH have a grant from the National Institute for Healthcare Research (NIHR): the data generated by patients is part of wider research into Post-COVID Syndrome which will help understand the condition and how best to treat it. It’s a really exciting and emergent field!
The philosophy behind the app is one of self-management where people recovering from Long COVID are encouraged to be responsible for their own behaviour and wellbeing with support and coaching from the therapist.
There is a proactive, structured and contemporaneous approach that creates knowledge, skills and confidence in the person.
Heidi: “We piloted this in Camden because our LTCs Teams are co-located at St Pancras Hospital (South Wing), so the different community services could work together in jointly managing the patient cohort”.
“Additionally, our long-standing relationship with UCLH expediated referrals from the Post-COVID Clinic and turned the pilot into a successful pathway and intervention” very quickly.
Rachel: “In July and August 2020 we started to notice that people participating in exercise regimes and ‘pushing through’ were ‘crashing’ with worsening fatigue, pain, breathlessness, and anxiety. All had had an acute COVID illness but many hadn’t needed hospitalisation; they also tended to be a younger cohort”.
“Part of our approach is to get patients added to the app and we find the majority of people have positive experiences and have liked using it”
It is a younger perhaps more tech-savvy cohort, but we noticed that some self-described technophobes (including Heidi herself) actually find it easy to use; a disadvantage to be addressed is for people whose first language is not English.
The app has a library about signs and symptoms – fatigue, cognition (‘brain fog’), mood, anxiety, depression, joint and muscle pain, chest pains, rashes and breathlessness. All are based on known validated outcome measures.
As the data is generated by the patients using the app, this feeds into the algorithms that help to set the parameters for when patients are getting better or need more clinical input, which helps to ensure that we understand how Covid is similar or different from other long-term conditions. The more data we have, the better we are able to fine-tune the triggers within the app.
People keep a diary and Symptom Checker including specific evidence-based Patient Reported Outcome Measures (PROMS) across both mental and physical wellbeing which is monitored by a clinician for a few months.
The person can send messages to the team and they are able to respond in a timely fashion. They work very closely with psychological services in IAPT/Talking Therapies, based at Camden and Islington NHS Foundation Trust, who have been very helpful.
The work is based on the principles of health coaching – with a strong set of clinical skills to help explain and moderate self-reported symptoms, so that people can take on more self-care, confidently, as they recover.
Heidi: “people have to be clinically safety-netted because the app is not for emergencies”. It is clearly explained in the app that if someone is really struggling with say breathlessness or chest pain and needs to access medical help they should call their GP, 111 or 999 for immediate advice.
More can be read about the Living With Group (who developed this App) here: https://www.livingwith.health/
Rachel: “At the beginning, there’s a thorough discussion with each patient about what their goals are - this could be that they want to go back to work, or restart some role, including the sports they previously did and they want to do so again; a few were previously super-fit people who want to get back into it. Many have not been unwell before and very often they want to get back to their role in the world – it’s like they have lost their footing…”.
The fatigue diary, the Symptom Tracker and PROMs allow people to track and grade their own recovery, and though this may not be linear it supports them in identifying what makes their symptoms worse and when they are progressing well. It gives them confidence and knowledge about how they can manage their own body’s recovery.
After six weeks of recording how they are feeling and responding, patterns have emerged and the dashboard can show people how their symptoms are shifting but also what might have exacerbated them.
We use a set of questions to identify how confident someone is at managing their ongoing recovery at entry into the pathway and on discharge. At 12 weeks the plan is to discharge the majority of people from the app where they will continue to self-manage their recovery from what they’ve learned.
Some people may need longer to develop their knowledge and confidence and will stay on the app for a longer time frame.
At discharge people will be removed from the app ‘dashboard’ so no longer be able to message the clinician nor will they be monitored by the service but will continue to have access to the patient library, symptom tracker and PROMS.
Although not guaranteed at the moment it is hoped that if patients deteriorate at a later date they will be able to self-refer back into service if required.
Both of us enjoyed the work. Rachel puts it “this has really provided us with an opportunity to work closely with patients, to be able to recognise their triggers and patterns around their symptoms. This in turn has meant we can help a patient improve, potentially before a significant deterioration, and that’s rewarding. In fact, it has made us reflect on the role digital health can play for all people with a long term condition”.
If you wish to access information around your Long Covid recovery – please go to the NHS website. This is free for all to use and has a range of information about Long Covid and managing the effects on your physical, mental and emotional wellbeing.
©CNWL May 2021
Central and North West London NHS Foundation Trust own the copyright to this work. We are happy for it to be used by anyone and ask that if used CNWL are acknowledged.
Have your say - Healthwatch Camden wants to hear from people who have experienced Long COVID. If you are a Camden resident and think you might be struggling with Long COVID, or have recovered from Long COVID, please email firstname.lastname@example.org to get involved.