The East of England NHS Collaborative procurement Hub shares patient insights into the challenges of living with a stoma, along with the benefits of new NHS procurement frameworks, developed by the Hub, with quality-of-life improvements for ostomates in mind.
Research into the region’s stoma care services by the East of England NHS Collaborative Procurement Hub (the Hub) highlighted a wide variation in service provision, echoing the national picture.
“From connecting with fellow ostomates through my podcast Beyond the Pouch, what strikes me the most is the discrepancy in patient care. Unfortunately, where you live and the health board your care is given from, seems to dictate what products you are offered,” said ostomate Rachel Morris, aged 34, from South Wales.
Our frameworks supporting stoma care
As part of the Hub’s Stoma Mapping Programme (2019), led by Senior Clinical Products & Services Specialist Jill Kettle, stoma patients, specialist nurses, charities and NHS trusts and ICBs contributed to the study. The findings, published in several Hub reports, indicated potential scope for improvements to the patient experience and opportunities for trusts to make efficiencies.
Informed by this research, the Hub created two new, complementary frameworks, offering a more standardised approach to the procurement of patient-focussed stoma services, which are available to NHS trusts and ICBs throughout the country. They are the Stoma Care Nurse Sponsorship Service framework and the Appliance Prescription Management (APMS) framework.
Patient choice
Previously it was usual for patients to have little or no choice over the stoma products they received as the tendency was for commissioning authorities to be tied to just one brand. With the APMS framework, patients are central to decision making about which products they use. They are also offered a reasonable choice of options, made available because several approved suppliers are awarded to the framework.
With the specialist clinical input of Stoma Care Nurses, who ensure patients are prescribed clinically appropriate and effective stoma products, these frameworks can help to deliver a better quality of life to patients and promote patient independence.
The significance of finding the right appliance and the right fit
Getting the right pouch to fit a patient’s body shape and stoma location is fundamentally important. This is why ostomates having a say and being listened to, patient voice, and patient choice, being given options, can make a big difference to some of the daily quality-of-life challenges they face.
Rachel Morris explains
Rachel, who is expecting her second child this year, has a seven-year-old son, J, who had an ostomy soon after he was born. Also known as @gutsy.mum on Instagram, where she advocates for ostomate awareness, Rachel said: “Having an ostomy is never a choice.
“With the changes major bowel surgery can bring, body confidence can become extremely low. Having to use a device which does not work dramatically affects a patient’s mental health.
“Life with leaks, medical device failure and sore peristomal skin is not the norm and should not be acceptable.
“I hear all too often from ostomates who don’t feel they’re heard and feel they are suffering, with no other options to choose. Many are left to keep trying devices from the same brands without the option or knowledge of others to try.
“Patients need confidence in the devices they use and trust that they are being given the best product for them.”
Both Rachel and J are ostomates due to Hirschsprung’s Disease, a rare congenital condition affecting specific nerve cells in the bowel.
“No two individuals with an ostomy are the same or have the same experience with their conditions. So, you cannot provide patients with the same products and expect them to just get on with it.
“A product that works brilliantly for me, won’t necessarily work for a fellow ostomate,” added Rachel.
The Stoma Care Nurse Sponsorship Service and APMS frameworks can provide trusts with an agreed patient pathway. Regular Stoma Care Nurse/patient interactions, help to deliver improved clinical care and reduce instances of complications, which are common after surgery.
The national picture
In the UK, approximately 177,000* people are living with a stoma and making adjustments to their everyday lives. It is estimated more than 13,500* people undergo stoma-forming ostomy operations in the UK each year. The most common conditions resulting in this surgery are colorectal cancer, bladder cancer, ulcerative colitis, Crohn’s disease and accidental injury.
Charity: The Ileostomy & Internal Pouch Association (IA)
With headquarters in our region in Rochford, Essex, The Ileostomy & Internal Pouch Association (IA) is a national charity, supporting people living with an ileostomy. The charity’s CEO, Michael Bell, said: “The need for stoma surgery does not discriminate according to a patient’s age, medical condition or circumstance. Every experience is different, and often invisible to the outside world.
“It is for those very reasons that stoma care needs to be tailored to each individual patient, where they are given choices tailored to their specific needs, enabling the best quality of life possible.
“Giving patients a voice provides confidence and the tools to advocate for themselves, where their needs are not being met. IA provides One2One Support and local groups to support this very thing.”
Potential Efficiencies and savings for trusts and ICBs/ICSs
The Hub’s research also revealed the East of England had the highest regional spend on stoma products in England at £34 million annually with the total UK annual spend at about £364m. In 2019, that figure was projected to increase to around £100 million by 2039.
As well as many benefits to patients, these frameworks offer trusts and ICBs opportunities for achieving potential efficiencies and savings estimated at up to 20% through:
- specialist clinical input helping to reduce over-prescribing and over-ordering of stoma products, reducing waste and costs
- effective prescribing control by consistent application of prescribing guidance and the authority’s accessory formulary ensuring items issued are cost-effective and quantities supplied are in line with patients’ clinical needs
- freeing up GP time as Stoma Care Nurses manage prescriptions.
Further information
For more information about these frameworks, please see the marketing sheets on our website: Stoma Care Nurse Sponsorship Service and Appliance Prescription Management Service (APMS). Alternatively, please contact the Hub: pharmacy@eoecph.nhs.uk. Or David.Olusanya@eoecph.nhs.uk.
*Jill Kettle, 2019, Stoma Mapping Report