A testing time for learning disabilities service

After months in lockdown Melissa Layton, our Learning Disabilities Head of Service, reflects on her COVID-19 experience and her hopes – and fears – for the future.

At the beginning of this pandemic – which feels like a long time ago – it all felt very, very scary. It was certainly, the biggest challenge I’ve ever faced working in social care. Early on, there was a lot of illness and suspected illness; at one stage over half the staff in teams I am responsible for were off self-isolating or sick.

We were scared for people we support, many of whom have multiple additional health conditions – and staff were understandably frightened for themselves. It was a daunting time for everyone. At one point we had a member of staff and a person they support both seriously ill in hospital at the same time. Like everyone else we experienced a sense of panic, but we worked through it and kept going.

Response to the pandemic

When I look back on those first few weeks it feels good to know that we did the right things as an organisation. We locked down quickly, we set up an internal COVID-19 hub, we developed a frequently asked questions document for staff and families, and we implemented procedures quickly. We made sure we were always well stocked with personal protective equipment (PPE) so, fortunately, that wasn’t a problem.

However, we have been – and continue to be – very frustrated by the lack of access to adequate testing.

Testing has been a problem across health and social care services from the beginning of the pandemic and although it is largely resolved for NHS staff, that is not the case for social care.

People with learning disabilities are only eligible for testing if they live in a ‘registered care home’, not if they are in ‘supported living.’ Supported living is the way we support the majority of people – they and their staff teams’ need for testing is no less important or necessary based on the support descriptor.

While walk-in testing centres have begun opening which our staff can access, for people we support this would be an extremely stressful situation and they should be able to be tested at home to minimise distress.

Issues with test kits

In the last few weeks we have been sent some test kits for people living in registered care but this presents its own challenges.

The only training we have been able to access is online and some of the kits have arrived with no instructions and no details of where to send them once they’re complete. Tests need to be carried out by properly trained staff to avoid false negatives and any additional distress to people. Over the past few weeks I’ve spent many hours on the phone to local authorities, Public Health England and our local Hounslow MP, Ruth Cadbury, trying to get more information.

Right now, the situation is calmer. Both staff and the people we support are well and beginning to enjoy seeing family and friends again, but the prospect of a second wave is worrying. We never want to find ourselves facing a situation like we did in March and early April – we need clear guidance from Public Health England.