"Can we cope with today? Yes. Then we will think about tomorrow tomorrow."
Jacq was doing well. Enjoying her career, raising her family and reaching that time of life when most women feel their strongest. Then her doctor advised her to get a hysterectomy.
What should have been a routine operation became a long process of one surgery after another leading to catastrophic consequences for Jacq and her family.
Despite living with her ongoing struggles with continence issues she is now a patient advocate. Giving patients a voice and providing advice to medical professionals, industry and even government. Ensuring that others patients won't suffer some of the traumas she has had to endure.
"Ask questions... ask anyone... ask me. I will help anyone"
Listen to Jacq tell her story here:
Further information and Links:
In Jacq's own words...
My husband and I live in Bedford. We had previously lived in South London whilst working as Chartered Accountants. Once our four children were at school, I became a secondary maths teacher. Since 2009 I have had various urological procedures for complex bladder dysfunction including: two bladder reconsructions or boari flaps, a kidney removal or nephrectomy, more bladder bits including: colposuspension and autologous rectus fascial colposacropexy. I have had ureteric stents, nephrostomies and indwelling, suprapubic and disposable catheters too. Infections have been complicated by resistant bacteria and allergic reactions to some antibiotics. The continuing infections affected the discs in my spine. This resulted in a spinal fusion operation, a spinal stabiliser operation, ongoing steroid injection therapy and then I have been fortunate to have been eligible for a spinal implant stimulator. This along with my Sacral Nerve Stimulator not only makes me fully bionic but also helps me deal with pain and trying to empty bladder. In 2016, I made the decision to retire from teaching as I had been unable to commit to full time work since 2009. I now try to raise awareness of bladder problems. Of course this is a subject that people do not like to discuss, I wish I could break down the taboos. Patients sometimes feel treatments are delivered to us rather than with us. Patients working with researchers and clinicians makes a massive difference to outcomes.
I have involvement in research as research being carried or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. This includes, for example, working with research funders. The various groups I have volunteered with include:
1. Alternative Urological Catheter Systems Ltd with Sam Martin, Lars Pedersen et al My involvement is as patient advocate
2. Patient Representative for the National Bladder and Bowel Health Project NHS England and Excellence in Continence Care Board – Chair designate of Supply Chain Patient and Carer forum
4. All Parliamentary Political Group (Continence)
5. NICE Guidelines CG 171 which was a long drawn out sensitive guideline dealing with women’s Urinary Incontience and Pelvic Organ Proplapse.
6. Conference speaker at master class events, supplier conferences, Associations of clinicians or nurses but suprisingly not doctors/surgeons.
7. NHS Guidance papers: for example GP Target guidance on uti, msu, cultures and dipstick tests.
8. Various NIHR projects as patient participant including the University of Aberdeen.
Patient voice for University of Cambridge Technology Policy Group. catheters improvements and beyond the technicalities of design to bring in user-inspired new service models.
9. The Colley Project: dedicated to continence assessment, treatment and management. Working party assembling now.
10. KE7 Hospital Patient Focus Group (London)
NHS continence in care news items, blogs and awards:
EVB sports clothing
NHS supply chain procurement towers https://www.supplychain.nhs.uk/about-us/clinical-and-product-assurance-capa/capa-framework/
and the IT process... development of innovative products
I would suggest all interested patients, carers, clinicians, educators…everyone… sign up as stakeholders to the National Bladder and Bowel Project
APPG Continence http://www.appgcontinence.org.uk/
Excellence in Continence Care NHS England: https://www.england.nhs.uk/wp-content/uploads/2018/07/excellence-in-continence-care.pdf
Bladder Health UK : https://bladderhealthuk.org/
FOR CHILDREN AND YOUNG ADULTS
My very informal blog can be found here: https://wordpress.com/view/airkidney.blog