Complex Communication Needs in Hospital

How do non-verbal patients get their needs and wants across to staff in hospital?

After a recent hospital stay I have concerns about the level of accessibility that non-verbal patients (whether this be from a disability or from illness) have to a form of AAC (Augmentative and Alternative Communication) to enable them to communicate their needs and wants whilst in hospital. I would think communication in this situation is vital, the ability to tell staff if they are feeling unwell, in pain or if they need assistance. I am hoping that stroke wards give their patients access to communication boards or some form of AAC however at least in our local area I worry this is not the case. I had a friend ask me late last year if I could help her as she had a family member in hospital who had a fall and hit their head. They were no longer able to communicate and were becoming very frustrated and angry. I went online and found a variety of good hospital/health communication boards and resources, which I printed out for her. They were grateful.

In our situation we advised the hospital at our pre-op meeting of our daughter’s complex communication needs and how she communicates. It was all written down in her file. I guess we were hoping they would have some sort of communication board available to their staff to use with her. I am not sure who actually reads this information, as I know no one that we dealt with during our 8 days in hospital was aware of her issues. All the nurses would ask Caitlin questions and when they couldn’t understand what she was trying to say/sign they would just look to us to interpret. This was fine for our situation but what if the patient didn’t have someone there to interpret their communications for them. What happens then? It really worries and upsets me to think that these patients could be going through pain or feeling unwell because as a society we haven’t got basic procedures in place.

Prior to our hospital stay, I had prepared a number of resources that we took with us to assist our daughter as I wanted and needed her to have the ability to communicate with us. I started with a social story on her iPad explaining the operation she was going to have. I also had a variety of communication options at hospital including visuals, a health style communication board and a hospital communication page on her device. I am passionate about AAC and a huge advocate for making communication accessible to everyone. Unfortunately, I fear none of these resources are made available to other non-verbal patients.

I would love to hear from AAC users or their family members of any positive or negative stories in relation to communication in hospitals. It would be great to get an idea of the range of issues that exist and it would be great to hear of any hospitals or States that are doing a great job.

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My helpful tips for LST Meetings

Over the years I have learnt a lot of what I feel are helpful hints in relation to LST meetings or even general meetings with the school. Firstly, the function of these meetings are to make sure the needs of the student are being met and it is important to remember this.  It is not about the school and what is right for them it is about what is right for the child.  I think sometimes this gets forgotten.
 
I would like to share with you some other hints I hope assist any families that are new to this process or families who feel a little overwhelmed or nervous about their LST Meeting.
 
  • Try and be confident, know what you want to discuss, what you believe is needed to assist your child and any concerns, solutions or ideas you would like to be put in place or discussed.
  • Be willing to be a little flexible or ready to compromise but not at the expense of what you believe is needed for your child.  
  • Until your confident in meetings make sure you have support which could be your health team or a family member.  Meetings can be very overwhelming and having support can help your emotionally.  But remember it is still your meeting so don’t let them take over it is important that it is still driven by you.
  • At the beginning I found it better to have as many of our team (physio, speechy, OT etc) attend meetings with us. This meant issues weren’t missed and I had the support I needed to get our concerns across.
  • Have tissues at the ready – these meetings can be quite overwhelming and emotional.
  • A really helpful hint I have found is to have a notebook with all questions, issues and concerns written down before attending a meeting to help keep the meeting on task and to make sure all issues get dealt with and to make notes of outcomes to refer back to.  If a lot is talked about in these meetings it is easy to forget things that are discussed. 
  • After a few meetings you should become more relaxed and confident and be able to attend on your own.  You still do have the option to have your support team attend with you as required.

I hope these help and good luck.  I’d love to hear your experiences with meetings and any other tips you may have.

Welcome to my blog

Hi, my name is Dana and I am a mother of two wonderful children.  My youngest has special needs. She is an active 11 year old who attends a local mainstream school with a teachers aide.  She’s played soccer with a local football club and is now trying netball.  She loves swimming, riding her modified bike and bowling.

As a mother of a special needs child, I am passionate about mainstreaming my child and the inclusion of children with special needs.  I will be sharing some of our success stories and the challenges we have encountered along the way with our daughter.  As well as sharing some tips to hopefully help other families in a similar situation succeed as well.  Why recreate the wheel.  If our experiences can assist even one family I will feel that this blog has succeeded in my intentions.

I look forward to hearing about your stories and sharing your successes or challenges.

Please also ask me any questions in relation to mainstreaming or inclusion of children with special needs and I will attempt to assist you or if not me, hopefully there will be someone out there that can.

Please stay in touch.  I will be posting my first story soon.