Case Study

This entry relates to the work carried out by NHS Kent and Medway Clinical Commissioning Group and partners to involve people and families in developing services for people with Long Covid in Kent and Medway. The Clinical Commissioning Group was the NHS organisation that planned healthcare services to meet the needs of the 1.9 million people living in Kent and Medway. We had an annual budget of around £3.5 billion in 2022/23 to provide the best possible care for the whole county.

On 1st July 2022 the Clinical Commissioning Group became the Integrated Care Board – NHS Kent and Medway.

Working with our health and care partners to recover from the challenges of the pandemic remains a focus for NHS Kent and Medway, including:

• reducing the number of people waiting for hospital treatment
• increasing capacity is diagnostic and treatment services
• supporting general practice manage very high demand

As an Integrated Care Board, NHS Kent and Medway will continue ensure that Long Covid services are provided for our population.

More than 900 people with Long Covid have been involved in co-producing a new service for Kent and Medway. At the start we knew very little about this condition. By putting people with lived experience at the centre of the design process we were able to put resources into what mattered to them. Patients now oversee delivery and determine next steps.

The Post Covid Assessment Service achieved the aim of developing a multidisciplinary assessment – seeing more than 1,800 patients in its first year. Working with a patient reference group we have developed plans for an enhanced service: more local face-to-face appointments, case management, more mental health support and peer support groups. Each service development is planned through a dedicated delivery network comprising partners from across health and social care and voluntary and community sector organisations, as well as patients, making sure the services are realistic and sustainable.

People involved feel listened to and valued and tell us taking part has been important for their own health and wellbeing. Long Covid co-production provides a blueprint for how we will work with people in future in our new integrated care system.

Some people who get Covid-19 experience long-term symptoms including pain, fatigue, shortness of breath, confusion, and memory problems (commonly called brain fog) – this is known as Long Covid and it can be life changing.

In 2020, knowing very little about this new condition, we sought to work with people with Long Covid and their families, as well as healthcare professionals caring for them, to drive the plans for a new service. Involvement was urgently needed because we were receiving comments about the lack of support for people, and because we knew bringing people together with health care professionals would make a much better service.

There was little evidence about the scale of the condition. In early 2021 national figures showed as many as 1-in-10 patients were finding the recovery from Covid-19 prolonged and difficult.

The latest predictive models – from January 2022 – estimated 10 to 13% of cases of Covid would result in long Covid equating to 11,000 to 14,000 patients in Kent and Medway.

Our initial aim was to listen to people’s experiences and to feed these into the development of an assessment service

Teams from the Clinical Commissioning Group (CCG) worked with Healthwatch, clinical leads and patient experience teams at local hospitals to involve people in planning and delivering Long Covid services.

Stage one co-production, March 2021 – May 2021: Learning together about Long Covid

To hear from a range of residents with Long Covid as well as their carers we reached across Kent and Medway through:

• a call out for evidence through social media, local press and bulletins and GP, hospital and council websites
• Healthwatch discussion groups
• an online survey – advertised widely through social media
• three well-attended patient experience workshops –including question and answer sessions with clinicians
• focus groups and interviews run by community groups targeting people from black and minority ethnic backgrounds.

512 people told us Long Covid was having a devastating impact on their lives. For many this was the first time someone believed them about the scale of symptoms. People urgently needed expert assessment and support and they also called for an information campaign.

Stage two co-production, June 2021 – April 2022: People driving delivery

The multidisciplinary Post Covid Assessment Service (PCAS) was established in May 2021 by a local GP Federation meeting a key requirement from people with Long Covid. PCAS was the largest service of its kind in England.

We wanted to involve people directly in overseeing the new service and further planning so we:

• recruited a patient reference group, which met regularly with commissioners and clinicians
• drafted a work plan based on the recommendations made by patients and families
• established the Long Covid Delivery Network – led by the Covid clinical lead including representatives from hospitals, GPs and voluntary and community sector partners
• involved patients in the delivery network meetings
• Sent out regular updates through public bulletins and websites
• made a film with people with Long Covid about their experiences.

Stage three co-production, April 2022 and onwards:  From assessment to rehabilitation support

Based on the recommendations from patients and families, the delivery network started to plan for an ‘enhanced rehabilitation and support service’. To keep people at the centre we:

• conducted workshops with the patient reference group to design requirements for an enhanced service
• carried out a further extensive survey across Kent and Medway reaching into communities
• started to involve people in the procurement of a new service – people with lived experience assessing proposals from potential providers.

We have heard from more than 400 people so far about what should be in the new service specification.

The services created for people with Long Covid have been driven by their experiences and priorities. Direct impact includes:

The Post Covid Assessment Service

Since April 2021 PCAS has received 2,009 referrals. 1,148 patients have been discussed as part of the multidisciplinary team process, 355 patients have been discharged and 1,292 have had onward contact with referred services.

The Patient Reference Group told us there needed to be more contact with patients due to the fluctuating nature of the condition and to help manage multiple referrals. Funding was provided so that PCAS case managers could be recruited to check in regularly with patients and help with referrals.

Education

People wanted the clinical workforce and employers to understand and recognise the condition. We ran GP and hospital staff training events, putting patient and family experience directly in front of clinicians. Reference group members also made a widely circulated film with one major local employer using it for staff training. Over 90% of all GP practices in Kent and Medway have made a referral to PCAS – demonstrating the success of the awareness-raising.

Patient- led peer support

People told us that speaking to others with similar experiences was essential to their progress. The CCG worked with voluntary and community sector organisations providing ‘social prescribing’– they have set up the first groups, others will follow.

Pathways of care

A fully developed end -to-end pathway for people with long covid in Kent and Medway was signed off by the CCG’s Clinical Cabinet Board in January 2022. Designed by the Long Covid delivery network it follows directly the priorities of patients and sets out the services which will be provided for patients. The ‘enhanced services’ which are currently being established will be assessed by patients to make sure they follow this pathway.

The Future – Co-production is firmly established as part of planning and implementing Long Covid services in Kent and Medway. The patient reference group continues to meet with leaders and with clinicians, further outreach work through surveys and workshops has just taken place and we continue to work across all our communities.

The Long Covid Delivery Network ensures buy-in from across the health and care system and that plans meet national guidance and best practice.

We expect to have local providers of an enhanced Long Covid rehabilitation and support service in place by the end of 2022. The focus for this service follows the priorities people have told us about including a local face to face assessment, more emphasis on rehabilitation, ongoing case management, more mental health support.

NHS Kent and Medway wants to work in this way across all services. An ambitious Engagement Strategy commits the new integrated care system to a gold standard of co-production – rolling out the Long Covid model across the county.

We can demonstrate that people with lived experience can be constructively involved in developing a service – even for a new and unknown condition during the difficult circumstances of a pandemic.

Living with Long Covid: https://vimeo.com/660435267/44e8f5ef44

Being Involved with Long Covid Co-production: https://vimeo.com/726117729

Long Covid co-production is an ambitious step forward, moving from one-off limited engagement to sustained outreach and involvement. People’s lived experience were embedded at each stage from understanding a new condition together, through to delivering a model of care – at each point we fed back to people.

A strong cross-organisation delivery network and senior level ownership from the CCG ensured we could act on what people told us in a realistic way. The patient representatives on the delivery group provided a key focus point – colleagues concentrated entirely on delivering what was important for people and their families.

Co-production ensured a work plan and a framework which is sustainable and co-owned. Those involved report feeling listened to and valued and the process has helped them personally:

“Having the ability to talk to other patients, doctors and other health professionals has been a lifeline… We are all learning about this new illness and… we all learning from each other. Our point of view is being taken seriously and action takes place from that.”

(Darren, patient representative)

 “It has been an emotional experience … but it has also been an enormously rewarding part of my career and bought me back to a core value of the NHS: To create services that respond to patients experience rather than what we the ‘professionals’ think people need.”

(Abigail, senior CCG manager)

• People who experience a health condition understand it best
• Involve people early and plan for ongoing engagement – it grows in value
• Be creative in how you reach out to people – offer a variety of approaches to make sure engagement is  based on the experiences of as many communities as possible
• Make sure you have senior buy-in and a strong delivery and decision-making structure
• Regularly touch base with people– how is the process working for them, what do they want changed?
• Be honest and treat people like adults – explain why you cannot do everything straight away
• Ensure there are outcomes based on the patient experience.