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Supporting patients recovering from the long-term effects of COVID-19

As the COVID-19 pandemic has progressed it has become increasingly apparent that for many people with COVID-19, symptoms are lasting much longer than expected.

Post-COVID syndrome, known colloquially as ‘long COVID’, is diagnosed when symptoms that develop during or after a COVID-19 infection continue for more than 12 weeks. These symptoms can range from breathlessness and fatigue to dizziness and anxiety, meaning that patients can require a variety of services to help treat them.

Imperial College Health Partners (ICHP) worked with North West London Integrated Care System (ICS) to set up Post-COVID Assessment and Recovery Services: brand new services, aimed at addressing this new set of emerging patient needs.

Background

Planning services for an emerging condition

ICHP began this work in January 2021, just one month after the publication of NICE guidelines addressing “identifying, assessing and managing the long-term effects of COVID-19”.

Post-COVID syndrome was, and is, still being studied and understood. Pathway commissioning guidance had only recently been published in December 2020, with the caveat that there was still much to understand about the condition and this guidance may change. With this in mind ICHP set out to address the following in planning the assessment and recovery services:

  1. Demand: Forecasting demand for services using brand new and emerging evidence. How many patients require support, and over what timeframe?
  2. Support: Providing expert and informed PMO support, able to get the right people together to rapidly set up the governance that would allow clinical pathway design and safe service start-up and reporting.
  3. Challenge: Using team members with the right expertise to challenge and help define plans.

We worked in partnership with the ICS, North West London NHS Trusts, community therapy providers, primary care representatives and CCGs chairs to build a cohesive service.

Our work

Combining data with a partnership approach

ICHP led initial analysis, compiling evidence and data to inform planning, and working with clinical and information experts in the ICS to challenge and refine assumptions and create demand forecasts to estimate how many people would likely need the service. .

To understand the demand for services we used nationally available aggregate data from ONS, NHS Digital, and PHE. We were then able to identify coding and help put in place reporting that will allow WSIC and our own Discover-NOW data set to create more mature and granular models and perform research in the near future. We ensured that the community clinics will be collecting data from day one so that the ICS can monitor patient pathways and numbers of patients, leading to future service provision design.

Once demand was better understood, clinical pathways could be planned in more detail.

Method

Adding value through subject matter expertise

ICHP facilitated the setup and agreement of patient pathways, including governance and referral criteria between all parts of the pathway. Key to this was deploying a team that in addition to strong PMO support included clinicians with experience of working in the system who could help to identify gaps and form solutions, supplementing the expertise of busy commissioners and clinicians within the ICS.

Our experienced and efficient project management approach allowed us to get the right people to rapidly make the best decisions for the people of North West London and create a formed and PMO, which was sustainable after set up. We also facilitated robust communication and engagement across the key stakeholders in the complex pathway (including community physical & mental health teams, acute services and primary care.).

We worked with acute, community and primary care providers to set up borough-based community multidisciplinary teams to manage post-COVID patient caseloads, and facilitated agreement of a core integrated community offer for post-COVID syndrome.

Key documents and tools were developed by ICHP to enable these new multidisciplinary teams in the integrated community setting to launch.

We helped to define and set-up acute and community care reporting within the service, as well as building in NHS England reporting requirements, ensuring activity and demand can be understood to better target resourcing. ICHP worked with clinicians and operations leads from providers, and the North West London Business Intelligence team to achieve this.

As a result of our partnership approach there is now a working and established governance structure set up across North West London that can manage the delivery phase of these services. Steering and working groups have established ways of working and engagement, and are poised to listen to feedback from delivery, learn from it, and adapt. Key relationships have been established between the specialist assessment clinics and the community MDTs to support clinical discussions and learning of post-COVID syndrome.

The results

Integrating services to support patients

Three acute specialist assessment clinics and six community multidisciplinary teams were launched in North West London in March 2021, managed through an integrated pathway. These services offer patients specialist diagnosis and referral to appropriate care, especially crucial in the case of the multi-symptom, complex needs that post-COVID syndrome often comes with.

The launch of the services immediately benefitted in North West London.

ICHP is now exploring ways they can continue to support the sector. Using feedback and data from delivery, we will investigate opportunities to improve and build a second iteration of the service, which may include digital transformation, self-care, further pathway development, and a robust way to track patient experience through the pathway, including primary care, acute and community settings.

Contact

If you would like to find out more about this work please email us.