Supporting parent carers and those with a learning disability to access the Covid 19 Vaccination.

09/03/2021

Over the past few weeks PACC has been working with local statutory bodies to ensure that parent carers and those with a learning disability (16plus) are able to access the Covid19 vaccination as intended.

PACC welcomed the national decision to include unpaid carers and all those with a learning disability, age 16 and above, in the priority vaccination programme, however we had some concerns about how it was proposed that this would be implemented.  These included the inequality in how unpaid carers were being identified as eligible for the vaccine, on one hand using receiving Carers Allowance as a trigger for eligibility, a benefit that covers a wide range of carers supporting individuals with a wide range of needs, while those parent carers not receiving Carers Allowance were only eligible for the vaccine if their child with identified as having severe neuro-disabilities or being at a increased risk of death from Covid19.  This created confusion and in particular disadvantaged working parent carers, who because of their employment were not eligible for Carers Allowance, but did not meet the narrow criteria around severe neuro-disabilities or clinical extreme vulnerability.

The move to include all those 16 plus with a learning disability in the priority vaccination programme and not just those as identified as severe or profound was a positive step, however the expectation that they would be identified through the GP’s Learning Disability Register was not.  We knew that nationally less than a quarter of the Learning Disability Community was registered on this database.  From work recently done in Shropshire we knew that this reflected the local position and in fact locally there were very few young people (16-25) registered.  This meant that young people with a learning disability in Shropshire, were at real risk of missing out on receiving the vaccine.  This was all in the context of evidence that the learning disability community were at significantly increased risk of dying from Covid19.

PACC wanted to address these issues locally.  We wanted Shropshire parent carers to receive clear information about when and how they could receive a Covid19 vaccination and access to the vaccine to be delivered in a fair and equitable way.  We also wanted nobody with a learning disability(16plus) to miss out on receiving the vaccine just because they were not on the GP Register, especially since we know that there are some barriers to having your details been entered.

We started by contacting senior decision makers locally and raising these issues at the local Learning Disability and Autism Programme Board.  We regularly meet with the Directors of Adult Social Care and Children’s Services from Shropshire Council and the Clinical Commissioning Group’s Director of Partnerships and we discussed these concerns at these meetings, resulting in a further meeting with the local vaccination programme clinical lead.  In these discussions we secured the following agreements;

• Contact would be made with the Shropshire and Telford & Wrekin SEN and social care (children’s and adults) managers to discuss how to identify those with a learning disability in the two areas.  It is hoped that this will allow a comprehensive list to be compiled that can be sent to GPs so that invitation to vaccination letters can be issued.
• The possibility of implementing a specialist school/college - based vaccination programme would be explored as a matter of urgency.
• The barriers to those with a learning disability and unpaid carers accessing the vaccine appropriately, would be raised by the CCG at the weekly Primary Care Network meetings, to raise the profile of these issues.
• Consideration would be given to what information individuals with a learning disability and their families should share with their GP when contacting then about eligibility access to vaccination (it was agreed that email contact should be promoted due to surgeries currently being so busy).

Since then further discussions have resulted in some excellent joint working across services, with the SEN team and children’s social care coming together to provide a list of young people that they have identified as having learning disabilities and therefore are eligible for a vaccine.  They have done this by using a variety of indicators, such as whether a young person has an EHCP, if they are in a specialist setting or not, if they receive social care support etc.  This addresses the issue that learning disability is often not formally diagnosed, with diagnosis often being condition specific instead.

Letters will then be sent to the families of the young people identified to let them know that they are eligible for a vaccine and that they should contact their GP to check if they are on their Learning Disability Register.  The letter acts as evidence of their learning disability and so addresses any concerns the GP may have about confirming it is appropriate for them to go on the Register.  A similar approach has been taken by Adult Social Care, identifying those whose Care Act assessments, indicate a moderate, severe, or profound learning disability.

The letters were co-produced with PACC and both letters highlight that family members who are carers may also be eligible for a vaccination and signposts to further details about the unpaid carers vaccination process, as well as mentioning that being on the Learning Disability Register will mean that individuals will be invited for an Annual Health Check and the Flu Vaccination each year.

While PACC still have concerns about the national eligibility criteria for unpaid carers, we have worked closely with the Shropshire Local Offer and other services to get information out to parent carers about local processes.  PACC has also been able to share clear information through our networks, ensuring that families have up to date information and are able to raise any concerns they might have in an informed way.

Both the SEN Team and Adult Social Care are in the process of sending out these letters so please look out for them if you are a parent carer of a young person, aged 16 or above, with a learning disability.  If you have any questions, please email enquiries@paccshropshire.org.uk