Getting coordinated and effective care: It shouldn’t be this difficult!

Frustration

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 story

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)

An idea

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: