Finding balance in a busy week

In this blog we caught up with National Co-production Advisory Group member Jennifer Pearl while she balanced a particularly busy week. An ordinary week for Jennifer can be fairly hectic at the best of times, having to juggle hospital appointments, visits from the District Nurse and other health related stuff, around work meetings and conferences. The week we caught up with her, she was attending several high-profile functions, highlighting the importance of having people with direct experience of drawing on care and support at such events…  

“My day starts at 6.30am”, says Jennifer.  “I have breakfast and then start my lengthy morning routine of personal care, physio stretches, standing frame, and passive active bike. 

“It took me a long time to have the right support and come to terms with having my non-traumatic spinal injury.  Now if my equipment all works and my wheelchair is in good working order, I can get on with life.  

“This week was very interesting and varied.  Starting with my work with the National Co-production Advisory Group, where I am working with Martin Walker, TLAP’s policy advisor for self-directed support, on a project with Greenwich council looking at how local people experience self-directed support and exploring how it can be improved.  

“Then on Wednesday I was invited to attend an event that the Spinal Injuries Association (opens new window) was hosting to introduce the Frank Williams Academy (opens new window).  The Academy aims to help educate and train those affected by spinal cord injuries and health care professionals to ensure safe, appropriate care is provided. Through research and development, the Academy also intends to champion best practice, raise national standards and build an evidence base to influence long-term transformational change. 

“HRH The Princess Royal, the Patron of the Spinal Injuries Association, was the guest of honour at the event. She spoke very well and remembered fondly her very good friend Baroness Masham of Ilton (founder of the Spinal Injuries Association) with whom she shared a love of horses. I was thrilled to be able to speak to her and explain how the Spinal Injuries Association had supported me to write my own support plan, as well as an Emergency Health Care Plan.  Without their support and that of many others I would not be where I am now. 

“I was also thrilled to receive an invitation from The King’s Fund (opens new window) to attend a panel discussion to hear Wes Streeting set out Labour’s plans to reform primary care.  The media including The Mirror, The Sun, The Guardian, The Independent, The BBC, and LBC were all present.  At the end of the session, as I was not able to ask my question to the panel, I approached Wes Streeting - Shadow Secretary for Health and Social Care - and asked him if he was going to ensure that my care team received fair remuneration.  And he said that this was his number one priority and recognised both the needs and the skills of care workers and the vital nature of their work and added that he recognised the importance of creating good career opportunities. 

“I thought I would be cheeky and ask if he would attend the All-Party Parliamentary Group on Spinal Injuries, and he said he would. 

“So, a very busy week.  And again that night, I was supported by my care worker to go to bed.  I am very thankful to them.  They are all friendly, kind, caring and dedicated to their work. They need to work long hours and many work 6 days a week to earn a decent wage.  Without them and my husband’s assistance, I would not be able to do what I do.”