Sheffield Community Contact Tracers

In the early stages of the coronavirus pandemic, a group of Sheffield-based health professionals became convinced that the government were about to make a mistake when it came to contact tracing. They formed Sheffield Community Contact Tracers (SCCT), a pilot to demonstrate how a community-based test and trace service could work.

We asked retired GP Jack Czauderna to tell us what inspired the project and what the results could tell us about the current test & trace fiasco.

How did SCCT get started?

In early March, while the SARS-CoV-2 virus was multiplying exponentially every few days and the disease Covid-19 was spreading through our communities, the government decided to stop contact tracing. They also rightly prioritised and resourced acute hospital care for people with severe symptoms, but wrongly directed GPs and primary care services to withdraw routine care for people with symptoms and channel care towards the NHS 111 call centre service.

A retired Director of Public Health (DPH) was in contact with a friend – a retired GP and his partner. They were both suffering from Covid-19 and became increasingly unwell. Calls to 111 resulted in advice to take paracetamol and contact their GP if symptoms worsened. When symptoms did worsen, they rang their GP and were told to take paracetamol and contact 111.

The whole system of primary care was denied to patients and GPs were sidelined. Our retired DPH realised that if people like his friends were unable to access medical care then this was true for the vast majority of the population suffering from this illness.

Conversations with colleagues resulted in a small group of retired public health doctors, GPs and a haematologist getting together. We were enraged that:

• Basic routine care for people with an infectious disease, albeit a new unknown one, was being denied.
• Basic routine contact tracing had been stopped. All of us had learnt at medical school that any communicable disease had to be sought out and those with the virus isolated, supported and provided with good medical care including hospital when necessary. Their contacts then needed to be found, isolated and supported to quarantine until they were no longer infectious to others. We knew that this was bread and butter work for Departments of Public Health, led by Directors of Public Health. Why had this work been stopped and why were DPHs not able to do their jobs?
• As citizens we were being treated as passive disaster victims with no sense of agency.

What happened during the project?

We quickly realised that as no-one else was doing the right thing we would try. How could we convince government and local authorities that without a cure for the virus, contact tracing was the only strategy possible to counter the pandemic?

There were other voices saying the same thing and many of them have been part of the Independent SAGE group (iSAGE). Allyson Pollock, now a member of this group, made the point early on that it was not helpful to think of Covid-19 as a huge pandemic, but more as a series of small, local outbreaks of disease, all at different stages of development and all needing local, and possibly different, approaches.

We decided to carry out a small-scale local pilot which could be written up quickly and published in a prestigious journal like the British Medical Journal (BMJ). If we could demonstrate that it was possible to do local contact tracing and influence the government to restore the proper role of the DPH, we would have succeeded.

We approached the manager of Heeley Development Trust, who joined our steering group. Through this link we were able to approach the GP practices to refer us patients with Covid-19 symptoms. We had no access to testing facilities, which were mostly directed towards acute hospital care and, later, nursing and care homes.

Diagnosis was essentially carried out by doctors, made by listening to the patient’s story of their illness. This included the symptoms which were becoming clearer as time went on, such as a new persistent cough, fever and the very characteristic emerging symptom of loss of taste or smell. There are no early signs of the illness on examination. Anyone with these symptoms was assumed to have Covid-19 unless proven otherwise. We also had the GP’s confirmation of diagnosis.

By then the country was in lockdown and many people were furloughed. We had the opportunity to train volunteers in contact tracing. By then we had the medical expertise to know what contact tracing involved. Several of us were also educators and able to design and deliver training. We trained over 20 people from a variety of backgrounds, mostly not healthcare but all eager and willing. As well as people from Heeley, there were some from Burngreave and Darnall.

Each volunteer had a medical mentor who was available to advise on symptom severity, necessary action to be taken if the illness got worse, and general medical support. After asking about the wellbeing of the index patient the volunteer then asked about their contacts. As you can imagine the response was very varied. Some people were grateful to have been rung and very cooperative about giving details of contacts. Some were much more suspicious.

The same picture emerged when contacts were rung. Some disputed that they were contacts or that they had been asked to self-isolate for 14 days. Index patients and contacts were phoned every day, with their permission, to offer support. Many of those who were initially sceptical were persuaded to self-isolate and appreciated the support. Index patients were phoned every day until they had recovered and contacts every day until the end of their 14 days.

We always considered that the support of those who were ill and the support of their contacts were the strengths of our approach, so we were pleased when iSAGE announced the fundamentals of the process: Find, Test, Trace, Isolate, Support.

What were the results of the pilot?

By this time we’d recruited someone to manage us and a communications person. The press were very interested and we appeared on TV programmes including Channel 4 News, Newsnight, The Guardian and national and local radio. We also had links with departments at both universities and other academic bodies.

Some of our findings:

• Out of the 20 or so trained volunteers, 6 were able to phone index cases and their contacts.
• 13 cases were enrolled via GP referral.
• Ages ranged from 38 to 88.
• 6 worked for the NHS or care services.
• An average time of 80 minutes per case was spent by volunteers.
• 58 contacts were identified.
• 19 of these contacts were successfully followed up and isolated for 14 days.
• 39 were unable to do so. These were unable or unwilling to give relevant details or to self-isolate.
• 29 contacts worked for carer provider agencies and 10 in other workplaces. Their employers were not always cooperative.

Contact tracing is complex, involving detailed work that is undermined by a lack of formal support from local or national government, but we proved that volunteers can be trained and supported to undertake effective contact tracing for Covid-19.

We also found that local community links are important because:

• People with Covid-19 and their contacts can be linked in to local support services and resources where necessary.
• Where direct contact cannot be made by phone or email, volunteers can drop round with a letter.
• A local approach increases cooperation, particularly from marginalised, ‘seldom heard’ communities and groups, and this approach will increase community resilience.

For contact tracing to work efficiently, it’s important that:

• Index cases (people with Covid-19) are identified early in their illness, as soon as symptoms develop and before test results are known.
• A strong, consistent message is received from central government, making the case for the importance of contact tracing in order to create a culture of public cooperation.
• Local support and back up, possibly including legal enforcement, is carried out by statutory environmental health officers.

What’s next? How can the project engage with ‘hard to reach’ communities?

Since publishing our results we have held two well-attended webinars and continued to appear in the media. Panorama spent a whole day with us but eventually the material was not used. SCCT continues to meet and the volunteer support circles meet weekly. We worked up a ‘self-referral’ project which planned to use social media to alert people to our work.

However our relationship with the local authority and particularly the Sheffield DPH became strained. Once the national test and trace (T&T) service was rolled out, local authorities were bound to follow their protocols and the most important of these is that there must be a positive test before test & trace can commence.

The DPH insisted that test & trace could only go ahead with a positive test. We know that there is at least a 30% rate of false negative results, which means that a significant number of people test negative but have the virus and can infect others. The way tests are performed and the delays in getting results all slow the process of contact tracing and isolating people, and even when someone tests positive the national system contacts relatively small numbers of people.

We predicted that a national system would fail and so it is turning out. Only a local system that emphasises trust in local people and support has a chance of working.

Most of our current energies are directed at engaging with communities and particularly with those that are ‘hard to reach’, or perhaps more accurately those that are ‘hardly reached’ or ‘seldom heard’. These tend to be communities in the poorer and more disadvantaged parts of Sheffield, those that have suffered with the results of inequalities for decades.

Meetings with voluntary sector leaders have developed the idea of the role of Covid Champions following the successful initiative of Health Champions which happened in Sheffield some years ago. A bid to recruit, train and support such volunteers was submitted to the Council.

Training is something SCCT has done well and we are developing Covid Confidence training. This should engage and inform a broad range of people who live and work within their communities, but we want to find out what people want from training. We want to work in a participatory and collaborative way, so that different people get the training that suits them.

What lessons does the experience of SCCT hold for a nationwide approach to contact tracing?

The government should recognise that its ‘world-beating’ system of test & trace is failing and that the model of central control, run by the private sector, is never going to deliver what is required.

It should then use the vast amounts of money it has given to the private sector to fund Local Authority Public Health departments to assess their local situation and plan and deliver local services.

Funding should also be provided to Primary Care, possibly through the Primary Care Networks, to enable GPs to properly engage with diagnosing Covid-19 and ordering tests as appropriate, rather than the testing system becoming overwhelmed as it is now. SCCT proved this could be done without recourse to testing during the pilot. The DPH can then coordinate primary care, with local contact tracing run by local staff rather than people in call centres.

The voluntary sector needs to be adequately funded to provide Covid Champions who have local knowledge and the trust of their communities. This trust needs to be used to help the contact tracers persuade people to isolate and quarantine with excellent support, including full financial support to help people self-isolate for the good of all.