Daily Archives: June 26, 2017


clasped-hands-541849_640
Today I wanted to tell you about an event I attended. It was in support of  the  Learning Disability (LD)Week 2017. I was privileged to be invited to sit on a panel alongside Experts and parents to share our lived experiences in order to help health professionals appreciate the impact of the care they provide through our own eyes. It was a fantastic day at Great Ormond street Hospital London. The heat was less, allowing us to have an enjoyable session. It always feels great to come home to GOSH! Mencap– the voice of learning disability in the U.K. Supported us and it was a fantastic and empowering event to have been a part of. The need for LD nurses on the NHS cannot be over emphasised. We talked about the huge difference staff could make in transforming care for children and the families of children who walk through the hospital doors. We revealed how important it was to have someone who understand the needs of the children. Nurses in their role could also mediate on behalf of the children when their voices could not be heard as result of their Learning Disabilities. Learning disabilities limit the ability of sufferers to understand and learn. It made them appreciate things slowly but not impossibly. Parents talked about the impact of a “smile” from the staff. It helped foster the always values of the hospital. It made them feel more welcome and made an absolute difference to stressful outpatient appointments. Patient said they wished they could be acknowledged more and included when decisions about them were being made. Breaking down communication by using simpler language helps patients with learning disabilities feel included. Non-verbal does not mean that a child or young person cannot understand. Body language and tone of voice hold a strong an essential key to communicating with them. They can help non verbal children warm up! We also discussed about the difference a little patience and empathy can make in the lives of patients and their families.  It was nice to hear feedback from health professionals about the our challenges with dealing with children with learning disabilities. Notable among the feedback we received was how the “Patient passports” that provide more detailed and specific information were found to also fuel the anxiety of staff in delivering the care. Worrying about getting things wrong with these children compromised the confidence of some staff. It was reassuring for them to hear from parents how much it meant to see staff go above and beyond for their children despite their inner misgivings.  Parents were acknowledged as experts with their children by the Health Care Professionals but ultimately, the general consensus was for there to be a partnership between all parties with the child always at the centre of the decisions. This was in line with the GOSH  slogan The Child first and always. The event closed at 4pm and we all felt richer and more informed. Chapter 18 of the book “Through our eyes: what parents want for their children from health professionals” written by Jim Blair and Parents was the basis for our meeting. Jim Blair is a Consultant nurse in Learning disabilities and an Associate professor. Mary Busk, Hayley Goleniowska (Author of down side up), Simon Hawtrey-Woore, Sue Morris, Yvonne Newbold (Author of Special Parents Handbook) and Stephanie Nimmo were all contributors to the book and Experts by Parental Experience.  Photo Credit: Pixabay                 EVALUATION AND FEEDBACK FROM STAFF AFTER THE EVENT Through OUR eyes what people with learning disabilities and parents want from health professionals   The majority of staff were nurses or HCA’s others were doctors, play therapists or from facilities environment design department    How well do you feel the learning outcomes were met today? ‘Very well, much more informative than expected’ ‘The session fully met my expectations’ ‘I don’t know what the learning outcomes were’ ‘I think the session was very important. I feel I can take away new skills and knowledge and use them in my practice.’ ‘x4 Very well’ ‘Beyond expectations.’ ‘V good.’ ‘No outcomes given at start’ ‘Very well, met my learning outcomes.’ ‘ They were met well. A lot of discussion that prompted other topics to discuss.’ ‘The session has been very usful. It has provided me with the knowledge and the experts experiences was interesting.’ ‘A good start, foundation to find out more. Good patient / carer interaction., More.’ ‘Quite well, very out patient based, maybe some more ideas of facilitate nurses and teams on ward area.’ ‘A really interesting discussion and insightful to hear parent experiences.’ ‘I feel the outcome has been met and even several spots have been touched on. I belive understanding, acknowledging, confidence have been the key aspects.’   How will today’s session improve your practice? ‘To not be afraid and be more confident when dealing with patients with disabilities’ ‘I will consider the specific needs of the LD community in the design of departments’ ‘Might consider exploring idea of artist led training sessions for clinical staff around LD’ ‘it helped me to understand the concerns the people with ld have’ ‘By talking what the parent and patient needs from listening. Listening to listen not listening to speak and by working in partnership with them’ ‘x2 Greatly.’ ‘Increased awareness of specific accommodations that can be made for people with learning disabilities.’ ‘it will help me understand the struggle, stigma and fight the patient and families may have been through and how to approach and respond to them. It also has taught me not to be afraid or fear them but to smile and be confident when dealing with a child who has a learning disabilities.’ ‘See, say hello and smile.’ ‘It will make me more aware of how I communicate with patients an dtheir family. As well as how I offer care.’ ‘By treating all patients with LD the same way but ensuring communicating in the way they need to be […]

Learning Disability Week 2017 at Great Ormond Street Hospital