We are proud to announce a new partnership with the South Eastern Kidney Patients Association (SEKPA) to support young people with kidney conditions.
SEKPA was formed in 1980, with the sole purpose of supporting kidney patients across Sussex and provides funding for items that help improve the wellbeing of patients along with giving additional assistance that patients might need.
Up until now they have mostly funded projects for adults receiving care across the kidney units in Sussex, particularly those at the Sussex Kidney Unit, which is located opposite the Alex, but they are now keen to extend their support out to children and young people living with kidney conditions.
Having a kidney condition can have a big impact on young people’s lives, with the potential to raise the risk of things like heart disease and stroke, affect their height, weight, puberty, and impact on their mental health and wellbeing.
In order to help provide this support, they have now partnered with us to support young renal patients at the Royal Alexandra Children’s Hospital in Brighton.
SEKPA’s amazing donation of £20,350 is funding a new Urodynamics machine for the renal service at the hospital along with a dedicated programme of wellbeing activities for young renal patients.
Urodynamics machines are specialist pieces of kit that measure the function of the bladder, offering the gastroenterology team the ability to provide enhanced investigations on their patients.
Urodynamic testing supports the management of urinary symptoms associated with kidney conditions such as nephrotic syndrome and chronic kidney disease. It is also really helpful for pre- and post-transplant evaluations to ensure bladder function is good enough to support a new kidney.
The machine will help consultants assess bladder function, manage urinary symptoms and provide more targeted treatments for these patients. It will also be used as a diagnostic tool for neuropathic bladder problems, incontinence issues and bowel conditions, all of which can cause or worsen kidney damage over time.
Having the Urodynamics machine on site in The Alex will help speed up diagnosis, reduce waiting times and avoid transfers to London centres for further investigations. The enhanced diagnostic clarity the machine provides can support more targeted treatment plans, improving long-term outcomes and, really importantly, the quality of life for young patients.
Paediatric renal patients face a higher risk of developing mental health conditions compared to their peers with stress and anxiety more common due to the complexity of managing medications, dietary restrictions and frequent hospital visits. Feeling isolated and ‘different’ from their friends and peers, can often lead to developing low mood and depression.
To better support young renal patients SEKPA are also providing the funding needed for us to work with the renal team to develop dedicated wellbeing activities to provide vital emotional wellbeing support.
Donna Holland, Rockinghorse CEO, said, “We are really excited about the opportunity to partner with SEKPA to support paediatric renal patients. By working together, we can make a real difference, enhancing the quality of life and treatment experience for young renal patients across Sussex, and ensuring they receive the compassionate, high-quality care they deserve.”
Ryan Seibel, SEKPA trustee, said, “Having been affected by kidney disease since childhood, visits to the former “Alex” and “New Alex” were frequent for me growing up. The outstanding care the doctors delivered and the support that Rockinghorse provided meant that on the occasions my conditioned relapsed I had the support needed to get back in remission.
“The work by Donna and her team to continually improve the experience and facilities for children whilst they’re receiving care during what can be a very difficult time in their lives is fantastic, the SEKPA trustees and entire committee are delighted to partner with Rockinghorse to deliver a much-needed piece of equipment for the Children’s hospital.”
To find out more about the work that SEKPA does in our local community, take a look at their website here.
