At 3 weeks old Ethan, one of my twin sons developed sepsis. It was a scary and traumatising time. He (and at times his brother) was an inpatient for 6 weeks in a children’s hospital. Ultimately the NHS saved his life and I am VERY grateful. However the experience of recieving care taught me much that has changed the way I practice.
A recent tweet chat about person centred practice at #wemdt caused me to reflect again on my experience at that time. Whatever the context children achieve the best long term outcomes when services work jointly with their parents and families. Services must of course be child and young person centred but the centre needs to expand to include the parents inorder to enable effective combined effort. I am going to share 3 of my ‘heart cries’ at that time Ethan was so ill. These cries translate to 3 vital keys for providing great collaborative services for children.
‘Dont call me mum – my name is Andrea’. After about 2 weeks in hospital I realised that staff who were seeing me and my baby boys on a daily basis kept calling me ‘mum’ even though I had told them my name was Andrea. It felt like they could not be bothered to remember my name. It was much more than just a name thing, though. They were not engaging with me as a person. They did not find out I was a health professional. They got their level of conversation wrong. At times I felt they were condescending. At other times they had hushed medical conversations at the end of my sons cot – unbelievably not recogonising I understood most of it. I was emotionally and physically wrecked I was just glad he was getting the right medical care. In hindsight better communication with me would of improved my emotional well being and confidence as a new mum which would of led to benefits for Ethan the patient at the centre. Here is the first key:
1. Recognise parents individuality, communicate at a level appropiate for them and remember their preferred name.
‘I just know, something’s not right’ After an initial 2 weeks of IV antibiotics we took our baby boys home. We had been home 3 days when Ethan began to cry’strangely’. I had a gut feeling that he was again very unwell. We attended children’s A&E. We were seen by a great paediatrician. He told us that he suspected he just had a virus but because of my concern and our recent experience they would admit for observation. Following admission Ethan deteriorated very rapidly and we almost lost him. The blood tests confirmed an incredibly rare second infection with a different strain of beta heamolytic streptococcus. Ethan got the timely medicaication he needed because as a mum, I just knew.
2. Recognise parents are the experts in their child, use their experience and knowledge to jointly provide the best interventions.
‘What about his brother?!’ When Ethan was first admitted, Isaac was a little off colour too. I was very worried about him. Isaac had been resuscitated at birth and had spent 2 days on SCBU. He was only 3 weeks old and I was doing my best to get to grips with breastfeeding 2 babies. The hospital would not admit Isaac. I had to decide which baby to be with. For 3 days my mum brought Isaac to the hospital 3hrly throughout the day for me to feed. (The only place was in a broom cupboard – but that’s another story) The situation was barely tolerable for our whole family. Eventually they admitted Isaac too.
3. Remember the child has a wider family, your interventions may affect grandparents and siblings too.
I would be really interested to hear your thoughts. Please share and discuss any challenges in providing person centered care. You can comment below or head over to Synergy Now facebook page