Research Call – Parents of Children with Learning Disabilities and Feeding Difficulties

Suzy Mejia-Buenano, a PhD student at the Tizard Centre, University of Kent is conducting a study exploring parents’ views of feeding difficulties and related supports in their children with learning disabilities. This study has been approved by Tizard Centre Ethics Committee and is being supervised by Dr. Nick Gore and Dr. Ciara Padden.

Taking part in this research will involve participating in a recorded, online 1-1.5 hour interview through Microsoft Teams with Suzy. You will also be asked to provide some short demographic information. All you need to take part is a mobile, tablet, laptop or computer with internet access. You do not need any apps or software; a link will be provided, and you will just have to click the link.

You can participate if your child is between the ages of 1.5 and 18 years, has a learning disability or global developmental delay, and a behavioural feeding difficulty (food refusal, selective eating, or challenging mealtime behaviours). Your participation is entirely voluntary.

If you or anyone you know is interested in participating, please do not hesitate to get in touch with Suzy ( and we can have an initial discussion and provide an information sheet with more details about participating. Please feel free to share this research information widely. 

Thank you in advance for your support and interest in this research.

Contact details: Suzy Mejia-Buenano (

UCL Stigma Research

“The UCL Unit for Stigma Research is conducting a study investigating how people with learning disabilities respond to being treated unfairly by others. We have developed a new measure to help understand this, the Responding to Intellectual Disability Stigma (RIDS) tool, and are looking for adults with mild to moderate learning disabilities to participate in a pilot study. This study has been designed from the outset with input from self-advocates with learning disabilities.
Taking part will involve a conversation supported with photographs by video call (via Skype, Zoom or Microsoft Teams, whichever the individual might be familiar with – support will be provided to access as necessary) with a researcher to discuss situations in which people with learning disabilities might be treated unfairly. Participants will also be asked questions relating to their well-being and self-esteem. We expect the video call will take up to an hour. To say thank you for their time contributing to this research, participants will be provided with information and resources to help them stand up for themselves when treated unfairly.
The RIDS study is being undertaken by Abigail Goldsmith-Sumner, a trainee clinical psychologist at UCL, as part of the wider Standing Up For Myself (STORM) project that the unit is running. If anyone in your organisation is interested, please pass on their information to Abigail, who will contact them for an initial discussion to explain the research in more detail and obtain informed consent. In addition, if you, your organisation, or a supporter/ family member would like more information, Abigail would also be happy to organise a phone or videocall to discuss.
Thank you for your support in advance. We hope this research will allow us to further understand the impact on individuals of experiencing stigma, and how interventions designed to improve the lives and wellbeing of people with learning disabilities may be of benefit.”
Contact details:
Twitter: @AbigailSumner2

London Eye Care Champions

As described by Grace McGill, who is an Eye Care Champion with SeeAbility: “The London Eye Care Champions are a relatively new team. We are lottery funded and we enable individuals to receive the same eye care as anybody else. We do this by awareness raising and training. If you can get a sight test right for someone with a learning disability then you can get it right for anyone!”

In this podcast, Grace McGill and Lisa Donaldson (head of eye health at SeeAbility) speak with Richard Whittington and Zoe Richmond from LOCSU (Local Optical Committee Support Unit) about the pathway to eye care for people with learning disabilities.

Refreshing Our Community

Earlier in the year, Jonathan, Bob and Daniel took receipt of the Community of Practice We want to re-centre it in our region, and refresh it’s shared purpose. 

Today begins next phase for the community. Below is a film which outlines what has been done, and an outline as to where we believe the Community should be heading. 

We could do with your support with shaping this journey, and there are three things you can do:-

  1. Watch this film 


   2. Completing this Survey by 30th September

   3. Share this film and survey with others that you think would be interested.

If you’d like to work with us to analyse the results of this exercise, please let us know, either by saying so in the survey, or emailing DM on Twitter @kssldcop or letting us know on the Facebook group


Your new Steering Group

As of June 2020, the Kent, Surrey and Sussex Learning Disability Community of Practice will be led by a new Steering Group as Bild steps back from their role of facilitating the community of practice.

Bild feel privileged to have been a part of the KSS Community of Practice for a short time. We think the work that everyone in the community does and the motivation of its members is admirable. We are particularly proud of the face-to-face events we held which generated valuable discussions and the work that we have done to develop the online community.

We believe that the new Steering Group will do a great job of moving the community forward and we will continue to connect and support with you where possible. 

We are pleased to introduce your new steering group through this blog post. Please do get in touch with your new steering group with any questions or ideas you may wish to discuss with them.

Bob Parsons:

My background is in further education, specifically working with learners who are 16 years or above, and who face barriers to learning. My qualifications include a Master’s degree in Education, focused on special needs and inclusivity. I have a dedication to assisting people who have learning difficulties and have much experience in supporting students who are on the autistic spectrum. I want to raise awareness of the needs, and the abilities, of people who have learning challenges, to give equality of opportunities. My approach is: See the Abilities, Accept the Disabilities, Explore the Possibilities!

Jonathan Coady-Mayall:
I am currently working at The CBF to manage, promote and deliver PBS workshops across the country. I have extensive experience across the sector from senior management positions to specialist support teams within a learning disability service.
My roles have enabled me to:

  • Recruit, train and support PBS co-trainers (professional and family carers)
  • Monitor and maintain the quality of workshops
  • Lead the development of new PBS workshops, adapting content and materials to identified audiences incl PICA workshops
  • Bespoke PBS Awareness training for: NMC – their Fitness to Practice Team and SELTCP
  • Work alongside a wide spectrum of staff: community teams working with children and young people; hospital teams working with children and young people; community and hospital teams supporting adults.
  • Develop a marketing strategy to grow business and awareness
  • Deliver PCAS and SPELL training via Tizard accreditation

Daniel Marsden:

Daniel Marsden qualified as RNLD in 1998 and has practiced in NHS services since then, in children’s, community, acute hospitals and as a Consultant Nurse, and is currently a Senior Lecturer at Kingston St Georges Joint Faculty.

Passionate about person centred care, nursing and practice development, Daniel has several funding awards and publications, including MSc research project, a participatory action research project. Along with WeLDNurses, Daniel has been involved in founding a number of organisations to facilitate community inclusion with people with learning disabilities, including Kent Surrey Sussex Learning Disability Community of Practice, and Anchorians Equal Teams Football Club – administered and run by and for people with learning disabilities, and is currently coordinating the #keephoLDiNgon initiative. A committed practice developer, Daniel is an International Fellow of the England Centre for Practice Development and has been a past member of the RCN Learning Disability Nursing Forum. Daniel is keen to develop communities that are committed to developing inclusive and participatory research intent on care and support that is person centred. For more details see here>

June 2020

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