Climbing the ladder to improved health and wellbeing
What does the story of Jacob’s ladder and co-production have in common? Jennifer Pearl explains.
As the season of festivities approaches, many will take comfort from religious festivals. I practice Judaism, and in the run-up to Chanukah one reading struck a chord with me. In it Jacob flees from his brother Esau and dreams of angels ascending and descending a ladder connecting earth to heaven.
They seem to have lost their heavenly powers of mobility. Instead they rely entirely on the support of a ladder on which they tread carefully rung by rung. Their wings have been rendered useless. They are, in a sense, disabled angels.
Nine years ago, I woke up one morning to discover that I was unable to walk. Since then I have had to negotiate my own ladder and come to terms with the fact that my life has changed forever.
These were very dark and challenging times. Thankfully, my own metaphorical ladder provided fantastic support from my family, friends and community. I was in hospital for six months. But it was only once I met other people who were more disabled that I was able to think positively.
I attended courses for people with spinal injuries at the Backup Trust. who showed me how to go up and down stairs. So, I was now able to sleep upstairs with my husband.
On leaving hospital they helped me acquire wheelchair skills and opened my eyes to the fact that I had the wrong kind of wheelchair, the wrong type of catheter, and needed a specialist pump to control the spasms in my legs. I tried activities that I would never have tried when I was able bodied: zip wire, abseiling, canoeing and horse riding.
Writing my own care and support plan
And when things took a turn for the worse, my guardian angels came to the rescue with peer mentoring. The Spinal Injures Association offered help with personalised care and self-directed support so I could access continuing healthcare. They supported me to write my own care and support plan. In short, they gave me a life; not just a service.
It was at this point that I became an Expert by Experience for the Care Quality Commission (CQC) and was invited at the last minute to speak at a special event in honour of Sir David Behan the Chief Executive of CQC who was retiring Jeremy Hunt was down as the keynote speaker but had to cancel at short notice. And it was here that I told the audience of around 300 people from the worlds of healthcare, government and the media about the saga of replacing my commode. A seemingly simple requirement that took nine months.
Following my talk, I was invited by Baroness Masham Countess of Ilton to the House of Lords to discuss the plight of young disabled people who were being placed in care homes for the elderly.
Zooming with ministers at the Department of Health and Social Care
Since Covid my contributions haven’t stopped. As a member of TLAP’s National Coproduction Advisory Group, I speak online to ministers and policy officers at the Department of Health and Social Care on issues related to shielding and PPE.
This work not only gives me a sense of worth, but also makes lives easier for others who require services. So, while making my own ladder more secure, I’m also providing ladders for others to climb. Gradually my confidence is returning. I am able to drive myself to work with an adapted car and be independent again.
I would encourage anyone with a disability to get involved in speaking up as much as possible to improve services. For me, this has made a big difference to my wellbeing. The key to it has been making sure that I get an equal say – whether that’s for my health care or whether that’s having a seat at the table with influential people. I’d say it’s the ladder of co-production and it’s helped me reach the people at the top. People like the Minister for Social Care, Helen Whately.