Prioritising people with learning disabilities during the pandemic

Summary

Sinead Heneghan is a GP based in the North West of England with a passion for reducing health inequalities.

In this interview for Patient Safety Learning, Sinead tells us how she made sure COVID-19 vaccinations were prioritised for people with learning disabilities, when national guidance advised otherwise. She also explains how they took the opportunity locally to combine these face-to-face immunisation appointments with annual health checks, identifying unmet health needs that needed addressing.

Content

Can you tell us a bit about yourself and why you have a particular passion for improving care for people with learning disabilities?

I’m a GP working at Brownlow Health which is within the Central Liverpool Primary Care Network (CLPCN). My interest in improving care comes from my parents who both work with people with learning disabilities; my mum is a support worker my dad and is a manager of two day services.

I have heard from them about the barriers that exist when accessing healthcare for people they support. This has inspired me to try and do something to help, especially now that I am a GP and in a position where I can promote improved access and quality of healthcare services.

When the vaccination programme began, what were your safety concerns for people with learning disabilities?

When the Joint Committee on Vaccination and Immunisation (JCVI) cohort lists were announced I was very concerned that people with learning disabilities had not been included, despite it being recognised that they are six times more likely to die from COVID.[1] People were only eligible if they had a severe/profound learning disability, or they had co-morbidities that placed them on the Clinically Extremely Vulnerable (CEV) list.

I was also concerned that the vaccine hubs were very large, busy and noisy places, seeing hundreds of people each day. Not a suitable environment for some people with learning disabilities.

We would need to consider a separate clinic in an environment that could provide reasonable adjustments such as longer appointments, fewer people and less noise.

How did you raise your concerns and advocate for better care?

In mid-January I liaised with our CLPCN Integrated Care Team Leads who contacted the CLPCN Clinical Leads to request that we prioritise all patients on the learning disability register within our network. At the time Mencap, along with other organisations, were lobbying the government to change their mind and prioritise people.[2]

I was also concerned that due to a reduction in face-to-face appointments due to the COVID risk, a lot of people with learning disabilities had either not had an Annual Health Check (AHC) or had done so remotely, without the necessary physical components.

We knew that the only way to administer the COVID-19 vaccine was seeing someone in person, so this seemed like the ideal opportunity. If we could prioritise people with learning disabilities for the COVID-19 vaccine, we could also combine this is with completing their AHC.

What solutions did you find?

The Clinical Leads authorised that we could go ahead and vaccinate all people aged 18 years and over with a learning disability, regardless of perceived severity. Permission was granted to hold a separate clinic from the busy main clinic, and for us to do the AHC at the same time.

How did combining the vaccinations and annual health checks go?

The AHC is done once a year and involves a thorough holistic assessment of the individual to try and proactively identify any unmet health needs and come up, with an action plan to address them.

Combining the appointments worked really well. We managed to vaccinate 78 people who would otherwise not have been prioritised and we also completed 30 AHCs, an increase in usual uptake. Within the AHCs, we found 20 people had unmet health needs such as rectal bleeding, mental health problems, respiratory symptoms and abdominal pain.

Carers attended with people on the day so we also managed to vaccinate 19 carers and identify where some were struggling and would benefit from additional support.

What difference do you think it made to patient outcomes? 

We vaccinated 78 people with a learning disability who would otherwise have had to wait until they were called up by age (however the government later did a U-turn on this decision).

With regards to the AHC, we were able to identify unmet health needs (as described above) and arrange follow-up appointments with their usual GP so that these could be addressed.

What do you think you learnt personally along the way?

The experience helped me understand that in some circumstances it is important to be vocal and emotive to get the message heard, influence change and help reduce health inequalities.

Share your experiences

Do you have an experience or insight to share? Perhaps you are a patient who feels their safety or health outcomes have been compromised by systemic inequalities. Or you might be a healthcare professional working to reduce health inequalities and improve patient safety. 

Leave a comment below (sign up first here) or get in touch with the Patient Safety Learning team at content@pslhub.org. 

References

1. Public Health England, 2020. COVID 19 deaths of people identified as having learning disabilities: summary. GOV.UK. Accessed 11/06/21.  
2. Mencap, 2021. "Tragic loss of life of people with a learning disability": Mencap calls for priority access to the vaccine for everyone with a learning disability". Mencap press releases. Accessed 11/06/21.