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’
‘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’
‘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 communicated with .’
‘It help me to understand LD more.’
‘Awareness / understanding.’
‘Engagement and understanding of child.’
‘Thought provoking in ‘thinking outside the box’ practicing in a person centred way, making change suit each individual.’
‘Today’s session is going to help me in the long run. After this session, I am going to help reach out to other staff to understand and participate in the day to day care.’
Do you feel more confident about working with people with a learning disability now?
‘Yes in the past I’ve feared the judgement of parents because they spend so much time in hospital but now I realise they probably have more anxiety than I do.’
Its made me realise I know what I am doing and I am flexible enough to work effectively with them / or anyone.’
‘Yes, I feel a lot more confident. Thank you to everyone for sharing their experiences and thoughts.’
‘Yes, would be able to help and support them more.’
‘Definitely. I will ensure I am always smiling and welcoming.’
‘Yes and no realising how much I have to go.’
‘Yes. Hearing personal experiences has made me more aware of what families want
in terms of care.’
‘A bit more positive’
‘I feel confident in working with people with LD,ensuring holistic care is met will help in the long care.’
What are you going to do to improve the care / service you provide people with a learning disability and their families?
‘-Focusing on patients individual needs
-being more confident
-don’t be afraid to ask questions’
‘Consider briefing for LD patients’
‘To not make assumptions on a LD patient capabilities due to their physical and mental abilities.’
‘I am going to spread the awareness about the importance of listening and taking small steps to make a change.’
‘By working in partnership with the parent and listening’
‘Listen more carefully
Read more about patient before seeing them
Don’t force observations etc
Spend more time with patient if necessary
Call for LD nurse.’
‘Be patient and take the necessary time to achieve a positive outcome.’
‘Continue to raise awareness with colleagues.’
‘Acknowledge the patient as having different needs not being different.
Smile and ensure I am always welcoming to reduce any fears or anxieties
Tailor care to the childs needs.’
‘Think about information sharing.’
‘Research more on communication passports and GOSH policies.’
‘I will work along the family and patient by using the patient passport.’
‘Listening and helping each individual.’
‘Listen, smile, take time.’
‘Family care as well as patient care and complete passports.’
‘Involve the individual more in their day to day care as well as their families. Also helping the families in order for them to feel confident in their child / families care.’
What are the 3 key things you learnt today?
‘Treat people as individuals
Talk to parents to find out what works for them and their child.’
Treat everyone as an individual
Use an honest approach’
Heart and soul arts.’
‘To not make assumptions
To have patience
To bond with patient and parents and always include parents’
‘Listening is the key
I can make a change’
‘Listen, engage and support’
‘Listen is the ley to your patients needs
People with LD Can freak out quickly i.e. hospitals, uniform
Read more about LD or speak to LD nurses about LKD to take control over your patients needs
Ask patient and family what child likes’
‘Listen to listen not listen to speak next
Label jars not people
People with LD are 58 times more likely to die by 50’
‘Dimmer switches useful\
Abysmal healthcare stats on people with learning disabilities
Importance of building rapport.’
‘The importance and long way a smile can go
\How important hospital passports are yet they are still not shared enough
The support available to families and how important it is to ensure they are well too.’
‘Carers asse4ssment availability
Structural adjustments in place already’
‘Importance of listening
‘To always involve the patient with the parents when asking questions by using the patients passport.’
‘Not to label
Help and support’
‘Awareness of LD and Listen.’
‘Not being afraid to make changes.
Looking at what adjustments can be made when needed
Adapting communication in person centred way.’
What could we improve on?
‘Nothing it’s a fantastic session.’
‘Give the parents and panel more time to talk – ultimately that’s why they / we are here
‘Nothing. It was helpful having families share their own experiences.’
‘it was great.’
‘To get more LD nurses for patients .’
‘More LD nurses
Less patients with LD on same day admission
Pre admission – clerk and consent day before admission
Less waiting time with LD patients as it becomes out of parents hands / procedure time.’
‘More discussion from audience.’
‘Share the hospital passports as much as we can and more training.’
‘ Time to prepare and read hospital passports and more LD nurses within ALL teams.’
‘Nurse training prior to qualifying and funding for learning disabilities.’
‘Give a chance for staff to have this opportunity to have a study day. Very helpful.’
‘Encouraging more staff to join in if possible.’
Any additional comments
‘This training should be mandatory for all staff’’
‘Excellent input by parents and service users.’
‘Parent contribution was great’
‘I really enjoyed the discussions and appreciated volunteers share their experiences. Thank you Jim for the teaching session- it was really informative and helpful.’
‘Really interesting and beneficial training. Best, most interactive and informative training I have experienced at GOSH as a student so far. I feel more awareness and training is needed. Also it would be good if there was information on how to get involved with awareness of learning disabilities around the hospital that is easily accessible to all.’
‘Very empowering and important information and experiences. Making assumptions is not helpful.’
‘This has made me aware of the different ways of working and taking care of the patient with LD. I have gained a lot of knowledge.’
‘More study days.’
‘Chris ( young man with LD) was exceptional very relatable.’
‘Really interesting and beneficial to listen to parents’ views.’
‘I enjoyed it overall.’
‘I felt the talk was quite out-patient directed coming from the parents point of view and I was wondering moving forward how we can improve our approach on the ward setting for families and children with learning disabilities. Yes, we do have the passports, however they are not utilised effectively on our ward, I have ensured each child that requires one has one in their notes and we are currently working through filling these out as of this week.
The purple sheets each child now has one in their nursing folders so we can all see them when we come onto a shift.
However moving forward, how can we improve our services for families and children with learning disabilities for those that are long stay. Our general experience is definitely not one of communication, which I am now acutely aware we have to change. However I would like to be able to provide better support for parents really. What would you advise? What other practices are done? Also, are there any in house courses for nursing and HCA staff. ‘