"My daughter's recent hospital stay"

About: Royal Hospital for Children and Young People (Edinburgh) / Paediatric surgery

(as a parent/guardian),

Our daughter, age 12 and autistic, was staying in the hospital for 3 weeks recently whilst being treated for complicated appendicitis. 

Our very special thanks goes to all the nurses and doctors on the Dunvegan and Tantallon wards.

One nurse for holding our daughter's hands and chatting to her and me on way to theatre ( I think she made special arrangements to be there for the sake of continuity of care for her). She went the extra mile talking to me and  she also later popped back to enquire about her once she got transferred to Tantallon.

One doctor and nurse for taking their time with taking her bloods and for  listening to me, by waiting for her to be ready (or as ready as she could be). I am sure this has reduced her trauma.

Two of the nurses and doctor having a midnight "Harry Styles" party whilst taking her bloods, and for being truly person centered.

I would like to point out, however, that as far as autism is concerned, the hospital stay was quite traumatic for her (even if she didn't outwardly show it.)

Here are some ideas for improvement : 

I think there is scope for much more autism training and awareness.  Lack of awareness has meant that I felt the need to stay with my daughter at all times during her hospital stay to fight her corner. For example, I  had to ask every single nurse on night shift to turn the beeping monitors off as quickly as they could. 

I approached one of the senior nurses on the  Dunvegan ward a few days after admission, to see if some accommodations regarding my daughters care could be made. She said it was difficult to stick to a routine on a busy ward and to be dressed at a specific time each day and I agree this cannot be done ; however, she said a plan would be made and the nurses would be told to make a plan/speak to my daughter every morning about the arrangements for getting dressed. However, this was not adhered to. As a result my daughter was extremely anxious a lot of mornings. What made it worse was that nurses kept promising they would dress her or come back  in 10 minutes, but then it took 1-2 hours until they were back and by then it was nearly lunchtime. On occasion they didn't come back at all. If the staff had some basic autism awareness they would have known not to do this.  

On another occasion I explained to one of the nurses that my daughter is autistic and that she was getting overwhelmed with the bright lights, and I asked if her curtain  could be closed. There was no acknowledgement or even awareness  of it being stressful for my daughter. However, the answer I was given was that the curtain had to stay open as leaving it shut would be unfair to the other patients on the ward. 

At first, I tried to earmark even just half an hour per day to allow my daughter some much needed downtime when she needed it or asked me for it. I mentioned this to staff but the information did not get passed on and it was impossible, with staff popping in constantly. I was also  wondering why - once my daughter was mobile again - no one mentioned MacDonald House to me or told us about quiet areas in the hospital (spiritual room for example). I only later heard about this from another parent in the family room. In future, perhaps staff could bear this in mind and signpost parents and patients when they come across autistic patients in hospital.

Staff were maybe also assuming that my daughter was okay whilst she was on the wards, as she didn't scream or appear distressed. But a lot of the time she wasn't okay. She was masking her difficulties, as is normal for a lot of autistic females. She is now suffering from severe burnout

On a positive note, there was a student nurse who was given special responsibility to look after her for a few days. My daughter completely loved this 1:1 attention from the student nurse and she told me  that these were the best days for her. It made such a great difference to her anxiety levels.

What matters to me: conversations

I looked at the QI board in the corridor  and the  what matters to you agenda on the wards.

My daughter appreciated the what matters to me conversation she had with staff. She said she really liked it so well done.

However, as a parent of an autistic daughter, I would have appreciated a what matters to me conversation with staff myself as her parent, especially as it became clear that my daughter would be staying in hospital for longer than planned. No one approached me to have a conversation, I had to initiate everything myself. No one checked in on us to say I realise your daughter is autistic. Is every thing ok or is there anything we can do to make her stay easier? I feel very strongly that had someone done this, it would have greatly helped me to manage our own stress better. It would have been a big weight off my mind. Having a daughter in hospital with a life threatening condition would have been stressful  for any parent  but having an autistic daughter in hospital  ( even if daughter is masking) can be especially stressful and a bit of extra help and empathy would have made our experience considerably better.   

Despite of all of the above, A big thank you to everyone. Just wanted to make some suggestions on how things can be improved. 

Do you have a similar story to tell? Tell your story & make a difference ››

Responses

Response from Louise Davies, Patient Experience Officer, Patient Experience Team, NHS Lothian 2 years ago
Louise Davies
Patient Experience Officer, Patient Experience Team,
NHS Lothian
Submitted on 01/11/2022 at 17:41
Published on Care Opinion on 02/11/2022 at 09:05


picture of Louise Davies

Dear Rucki

Thank you so much for sharing the details of your experience with us. You have provided some really great feedback about the treatment of patients with autism and their families. I would like to assure you that the service are currently reviewing your comments and will post a further response as soon as possible.

Thank you again

Louise

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Update posted by Rucki (a parent/guardian)

Thank you for your reply Louise.

Its great that my comments are being shared and reviewed😏😏.I only hope they weren't too harsh😱.

Our daughter has received fantastic medical care❤ and I submitted another story with more emphasis on all the positives🥳🥳🥳! Most of the nurses and doctors had fantastic communication skills and ways of working, which actually suited my daughter who - due to her PDA (pathological demand avoidance) has a strong desire to be in control at all times.

However there is no denying that a busy hospital ward is very challenging for autistic children, and I appreciate there are many aspects that cannot be changed. Whilst our daughter is now physically well again, the whole experience appears to have caused her some trauma and when we recently took her on holiday she stopped speaking 😒

Response from Catherine Halliday, Senior Charge Nurse, Surgery, Royal Hospital for Children and Young People, NHS Lothian nearly 2 years ago
We are preparing to make a change
Catherine Halliday
Senior Charge Nurse, Surgery, Royal Hospital for Children and Young People,
NHS Lothian
Submitted on 22/11/2022 at 15:56
Published on Care Opinion at 17:04


Dear Rucki,

Thank you once again for posting your story on care opinion. All feedback and ideas for improvement allow us to try and provide high quality, person-centred care to all children and young people within our services. This includes children with additional needs, like your daughter, whom we strive to get this right for.

I am one of the Senior Charge Nurses on the ward that your daughter was an inpatient. I would like to say I appreciate your feedback and welcome your ideas for improvement. I have discussed your story with members of the nursing team, along with other members of the multi disciplinary team who were involved with your daughters care throughout her stay.

I want to say I can understand how difficult it must have been for your daughter to be nursed in such a busy, noisy ward area and I’m sorry that the challenges faced by your daughter did not seem to be acknowledged. I have looked at resources available to staff in relation to Autism Awareness and have found that at present all staff within NHS Lothian has access to online CPD training modules. Your story has made me aware that, although, these are available they are not highlighted to staff. Going forward we will ensure we are recommending these modules to staff on the ward and will bring to the attention of the wider team within RHCYP.

I am pleased to read that your daughter enjoyed the ‘what matters to me?’ conversation that we have with all children admitted to the hospital. As you say, this is an extremely useful conversation to have with our patients, your experience has shown how important it can be to have this chat with family members and carers too. I will work with our QI lead nurse to establish how we can adapt and expand this conversation to include family members/ carers of our patients.

Our trauma team have begun work on a resource for patients coming into hospital under their care who also have ASD. This resource will be made available to other areas within Children’s services and will be adaptable to patients admitted with other healthcare needs.

I am sorry that the facilities available to families had not been brought to your attention by staff during your stay. I can only think this has been an oversight. To address this, I have been in touch with our IT colleagues and as part of our developing online webpage, we will also incorporate QR codes into the bedspaces of each patient, this will allow staff to direct families to the QR codes where all information related to facilities and services for families can be accessed.

Again, I’d like to thank you for your constructive feedback, and hope that going forward we can help to make the hospital experience easier for all children in hospital and hope that we can address some of the issues raised specific to children with ASD

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