**Thank you to everyone who has already got involved in this important survey**
COVID-19 Survey - Participating in the survey will ensure that people with PMLD and their experience and reality during the pandemic is seen and not hidden.
UK wide Research Scotland
This is important and highly relevant research specific to those with profound and multiple learning disabilities (PMLD) and their family carers.
This survey is also open to paid carers caring for a person with PMLD who feel they would like to take part. E.G. as a personal assistant or working with people with PMLD in a paid supporting role.
We all know how much COVID-19 has impacted on everyone. PAMIS family carers and staff are also very aware of how COVID-19 has had an even greater impact on people with PMLD. It is important that we hear from you as you and the person you care for are living the experience and it is critical that we know what that reality is.
The concerns for people with learning disabilities and in your case people with PMLD, is felt across the UK. In response to this, the above link will take you to the finalised online survey which asks highly relevant questions related to you, and the reality of the person you care for, of living in ‘COVID-19’ Scotland. Completing this survey will help document you and your son’s or daughter’s experience over the months since March 2020. The survey will enable you to tell those who make defining decisions, around how support and care for people with PMLD and their family carers is approached, in this changed and ever-changing COVID 19 landscape.
Importantly, the survey will ask you to complete at 3 different points over the next 12 months to answer questions and feedback on topics that we know are specifically important to you and the person you care for. This approach matters and has the capacity to quickly respond to findings. The research team can then feed into policy and promote improved support and practice to positively enhance the experiences of people with all levels of learning disability during this challenging time and beyond.
If an online survey is not something you are comfortable doing please get in touch with PAMIS firstname.lastname@example.org and we can arrange a different way of responding. We can also provide support to complete the online survey if required.
PAMIS and the Scottish research team value your input and through your input hope to make positive changes to the way you and the person you care for experiences care in the future.