As I write this post I want to scream ‘it shouldn’t be this difficult!’ I realise this place I find myself in, is frequented all too often by parents of children with disability.
My lovely dad has advanced cancer. He has had a challenging two years. Frequent hospital appointments, changing treatment regimes, emergency admissions and pain. In the last few weeks as I have been trying to get him the care he needs it has pushed me to my limits. Despite my NHS knowledge and experience it has felt impossible. Many of the things I have struggled with as a daughter are similar for parents of disabled children:
No clarity on the which services are responsible (we live in a boundary area)
Confusing referral criteria and guidelines. Some services insisting on doctor referral whilst others demand self referral
Paper referrals and letters that take ages
In ‘good patches’ services discharge, then you have to jump through hoops and wait for re-referral with urgent need
Hospital and community pharmacy’s dispense tablets from differing manufacturers with different strengths (in my dad’s case this resulted in a significant self medication error)
Many GPs are involved in your care
Some GPs do not listen to the advice of specialist non medical staff
Staff imply it’s your fault when you get confused
Quality and effectiveness of care is not as good as it could or should be
I am sure if you are a parent you can relate and add to this list (I at least have not had to deal with education systems and processes)
As I think about my situation I remember my frustration on behalf of parents. The constant communication difficulties they face were a key reason for me leaving the NHS. I had had an idea that I thought could really make a difference. It was for an IT solution. I couldn’t see a way of making it happen from within the NHS. I set up Synergy Now to develop the system I have called Our Coms. The system will link disparate organisations and give parents control of communications via a smart phone app. I believe ‘Our Coms’ has the potential to massively ease communication challenges. The system is in early stages of development with a company called Tuxsoft. If you would like to contribute ideas, be involved in initial testing or just be kept up to date with progress please sign up below:
Watching Matthew Rees help David Wyeth finish yesterday’s London marathon caused me to shed a tear or two. It was so inspirational to see a dedicated runner give up his opportunity for a personal best (PB) for the good of another and the event. When the two men were interviewed later David said ‘we’re in it together’. It struck me as little strange initially, running seems to be such an individual pursuit. However marathon runners obviously consider themselves a community with a ‘greater good’ beyond the individual.
I immediately thought ‘I can see this in services for disabled children’. The team around the child (TAC) is made up of different individual professionals across various sectors. They train and work in different ways. The race isn’t merely about an individuals PB but the greater good. The greater good is positive outcomes for the child and family. I wonder sometimes when we work with children and families if we become blinkered aiming just for own own professions best.
I remember back to when I was a member of a head injury rehabilitation team. We were working with a little girl who had brain damage as result of too little oxygen during complicated heart surgery. This once able little girl was unresponsive in bed unable to move and stiff. As the lead physiotherapist I determined we would give this girl the very best physiotherapy. My team and I worked hard with her on a daily basis, pushing boundaries and not giving up hope of getting her walking again. Three months later she was walking and even running. As a physiotherapist I had achieved a PPB personal professional best….. BUT what about the little girl and her family? Sadly the girls cognitive and communication skills had improved very little. The family were disappointed and having to come terms with their child looking and moving as a 6 year old but understanding and communicating as a toddler. With hindsight my treatment was good and appropriate however I wish I had had more professional selflessness and had worked more to support my speech and language and psychology colleagues.
The TAC could often be better described as a group around the child GAC. Organisational agendas and individual professional approaches can drive our interventions and interactions. We along side one another rather than together. To achieve great outcomes for children we need to truly function as a team. No one professional or organisation can afford to see themselves as the ‘star’ player. I would say we should give the child and family the coach role. The players have the skills but coach knows where the goal is.
‘Scoring a goal is a team thing’
I was surprised and pleased that my post ‘Don’t call me mum’ resonated with many parents. I’ve been reflecting again on my experiences when my son Ethan was seriously ill with sepsis. Whilst it was an incredibly difficult time there are two members of staff I remember with particular fondness and gratitude.
First was Joan a health care assistant (who was approaching retirement). I remember her kindness, it was both firm and gentle. Instead of pushing the ‘breastfeeding’ party line she bottle fed Ethan in the middle of the night. So I, an exhausted on the edge new twin mum, could get more than 3 hrs sleep. I felt as though that nights sleep was life saving. She extended her care for my son to me.
There was also Dr O’Connor the paediatric registrar. She never lectured me on my googling of strep B sepsis. She understood my need to try to understand. She went the extra mile as many NHS staff do. On a number of occasions she came to Ethan’s cot-side after a long shift to answer my questions. Her efforts to get to the bottom of Ethan’s double infection were clear.
What was special about these two staff was, they heard more than my words. Joan listened to me as I said ‘I am worried about Ethan and who will take care of him in the night’. She heard ‘I am exhausted and close to breaking’ She’d discovered what I was not even admitting to myself. Dr O’Connor listened to my myriad of questions and heard a mum who needed some sense of control.
I love this quote from Stephen Covey:
I will be forever grateful that Joan and Dr O’Connor listened to understand. Whilst listening like this is not easy I am sure the positive impacts far outweigh the cost. I have found as a clinician my efforts to truly listen are nearly always rewarded.
In Don’t call me mum I gave these 3 keys for person centred practice:
Recognise parents individuality, communicate at a level appropriate for them and remember their preferred name.
Recognise parents are the experts in their child, use their experience and knowledge to jointly provide the best interventions.
Remember the child has a wider family, your interventions may affect grandparents and siblings too.
These 3 keys need prepending with a vital first step:
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