"Care not personalised, neuro-affirmative, or trauma-informed"

I was in hospital for 12 days with my teenage autistic daughter, who underwent spinal surgery. 

Post op she received physio. My daughter is neurodivergent. She also has demand avoidance (or PDA Pathological demand avoidance) , as well as  a history of  trauma from a previous hospital admission ( she stopped speaking for several months after her last hospital stay two years ago). She therefore needed some alterations to her care, and specifically to how she was approached.  I have several grievances re the physio service my daughter received and I am mentioning them here, so that lessons can hopefully be learnt:

1. I mentioned my daughter's  trauma history and her PDA to the physio,  and requested that they negotiate with her, rather than using too firm an approach . They did try to change their approach during the session after I mentioned this but then during a follow up session insisted that my daughter stayed seated  in her chair whilst she was crying and clearly didn’t want to do this (I wasn’t there, my husband was though and daughter told me afterwards how horrible this was for her) . Following this negative and traumatising experience, she refused to do any sitting during the remainder of her hospital stay after physio discharged her and is now , nearly 1 month post op, also still refusing to sit at home .

This could and should have been handled better and I strongly feel  that my daughter’s experience is negatively impacting her recovery . If I could make a suggestion, it would be really helpful if physio had asked What Matters To You, and they should do this routinely with any neurodivergent youngsters as they might require different approach /timescale for discharge . This means they could stand a better chance of getting it right for each young person . 

2. I do appreciate that the  physio service is very busy but I feel that my daughter was discharged too early . The moment she could walk stairs, we were handed a discharge leaflet. However we were still in hospital for another 6 days or so afterwards and we would have appreciated if a physio had checked in on my daughter's progress, especially as she is neurodivergent and there were additional barriers for her . My daughter did not get up and mobilise enough during  the remainder of her hospital stay . She felt really anxious to walk in the hospital corridor  due to her social anxiety and the nurses looking at her. However, if physio had provided further sessions we might have got her into some sort of routine. 

3. After discharge, i  made a point of speaking to the physio and one of their colleagues in the corridor. (I didn’t know at this point that we would be in hospital for so long) . I asked if they could refer my daughter for community physio follow up for when she gets home. I explained our family situation (my husband has respiratory failure and therefore cannot walk with daughter) and my concerns that daughter, due to her PDA (pathological demand avoidance) would not mobilise for us but she would mobilise for other people., so therefore it would be good for someone to follow up . The physio said sorry , but this service was not available. However the leaflet they gave to me (for mobile patients) clearly stated that if you felt that further physio would be beneficial, you could ask to be referred . This was confusing . 

Admittedly I was very sleep deprived and crying at the time so I might not have put my point across very clearly . However, I tried to make my point several times but despite this they physio and their colleague kept insisting that the family needed a social work referral. I did not feel listened to but talked at , and this was not helping and made me feel more upset . I also found it very undignified to speak in the corridor whilst I was crying , it would have helped if physio had  come back later and / or spoken to me somewhere quiet . 

In summary , I feel overall very disappointed about the service that we received  from physio during our hospital stay . I felt it was neither person centred , neuro-affirmative nor trauma informed,  and that instead a “one size fits all” approach was used.  My hope is that staff can reflect on our experience and use more person centred, compassionate care . I have asked our consultant to refer our daughter for community physio as she is not making progress as she should .