From Dr Georgia Pavlopoulou, Dr Rebecca Wood and Dr Chris Papadopoulos:

“How do you experience parenting during the pandemic period? Did your perspectives and needs change over time during pandemic based on experiences, new information, slightly different regulations?”

Click here for the *NEW* anonymous, coproduced survey.

Posted on behalf of Professor Irene Tuffrey-Wijne:

“Hello!

I have started a new research project. It is called “Growing Older, Planning Ahead”.

We are looking for a researcher with learning disabilities to work on the project for 6 hours per week, for 2 years. 

The job is advertised on the Kingston University website: https://jobs.kingston.ac.uk/vacancy/research-assistant-431082.html

You can read more about the job in the attachment, which is in easy-read.

You can apply if you: 

• have a learning disability
• have experience in doing research, OR have done research training (for example, the research course we did at St George’s University last year)
• are interested
• are able to come to St George’s University in Tooting once a week (although whilst we are still in lockdown, we may need to work from home on Zoom etc.)

You can apply online but it’s quite complicated, so instead, you can use the easy-read application form. (That will be easier for me too!)

It is attached below.

You can send it back to me, and I will then send it to the job office at the university.

Your application needs to arrive by 9 December. We will hold interviews on 16 December.

If you need any help, you can ask me.

Please share this information if you know of anyone else who might be interested!”

Posted on behalf of Professor Kay Mafuba, University of West London:

“We are undertaking an RCN Foundation funded research project on the contribution of learning (intellectual) disability nurses to the lives of people with learning disabilities. We are seeking your support to publicise and circulate this work if at all possible.

What impact do learning disabilities nurses have? 

The RCN Foundation is funding a study which aims to identify nursing led and or nursing centred interventions undertaken by learning disability nurses to address the changing needs of people with learning disabilities across the lifespan and in all settings. The research will make explicit what learning disability nurses do. This research will also highlight areas of further research investment in nursing interventions and innovations that will further improve patient care for people with learning disabilities. 

We are requesting all registered learning disability nurses to participate in a survey to further develop this work. The survey takes 20-30 minutes to complete. 

To complete the survey, click here. Alternatively copy and paste this link into your internet browser: https://uwl.onlinesurveys.ac.uk/understanding-the-contribution-of-intellectual-disability 

Please forward this e-mail to as many colleagues as you possibly can. 

If you have any questions please contact Professor Kay Mafuba: kay.mafuba@uwl.ac.uk.   

Title of Study 

Understanding the contribution of nurses to improving the health and well-being of children, adults and older people with learning (intellectual) disabilities, now and for the future. 

Investigators 

1. Professor Kay Mafuba (Principal Investigator), University of West London 
2. Dr Marc Foster, University of West London 
3. Dr Hazel Chapman, University of Chester 
4. Dr Joann Kiernan, Edge Hill University and Nurse Consultant, Alder Hey Hospital 
5. Rebecca Chester MBE, Berkshire Healthcare NHS Foundation Trust & & Chair United Kingdom Intellectual Disability Consultant Nurse Network 
6. Dorothy Kupara, University of West London 
7. Chiedza Kudita, University of West London”

The following information has been provided by André Strydom, a professor in intellectual disabilities at King’s College London and one of the authors of the research paper outlined below.

“As you may be aware, NHS England has announced that people with Down syndrome should be added to the clinically vulnerable list due to recent reports showing that they may be at increased risk for poor outcomes following a COVID-19 diagnosis. We have yesterday published our preprint report based on work done within the T21RS which may be good to circulate.

The preprint report is open access and available here https://www.medrxiv.org/content/10.1101/2020.11.03.20225359v1

The report contains information on symptoms, risk factors and outcomes following a COVID-19 diagnosis in people with Down syndrome.

Key findings are that, similar to the general population, the most frequent signs and symptoms of COVID-19 were fever, cough, and shortness of breath. Pain and nausea were reported less frequently (p<0.01), whereas altered consciousness/confusion were reported more frequently (p<0.01). Risk factors for hospitalization and mortality were similar to the general population (age, male gender, diabetes, obesity, dementia) with the addition of congenital heart defects as a risk factor for hospitalization. Mortality rates showed a rapid increase from age 40 and were approximately three times higher than for controls even after adjusting for known risk factors for COVID-19 mortality. The risk in those over age 40 was comparable to individuals in the general population aged 80 and older.

However, individuals under age 40 were approximately 90% less likely to die than those over age 40. Furthermore, few children age 19 and younger were severely affected, suggesting that the risk in children and young people could potentially be balanced against quality of life.

We would like to recommend that in addition to individuals with Down syndrome being offered flu vaccinations, vitamin D supplementation and the pneumococcus vaccine should also be considered this season, and we are working with Down syndrome organisations to have this considered – we would welcome the LD senate’s views on these recommendations.”

Health Education England have published reports regarding learning disability liaison nursing. The full report, as well as appendices and easy-read version can be found below.