Scottish Stoma Forum kicks off first dedicated stoma awareness day in Holyrood by walking up Arthur’s Seat alongside individuals living with a stoma

Last Updated on 05/10/2023 by Sarah Sarsby

The Scottish Stoma Forum worked with Sir Edward Mountain MSP to bring together around 40 individuals from across the stoma community in Edinburgh for a first-of-its-kind dedicated event on stoma care in Holyrood yesterday (4 October 2023).

To raise awareness and launch five calls to action to improve stoma care services in Scotland, the day saw a range of activities, including people with a stoma climbing up Arthur’s Seat to show what is possible when high-quality care is in place; a dedicated debate in Holyrood; and an evening reception where MSPs heard first-hand about patients’ experiences of living with a stoma.

An estimated 20,000 people live with a stoma in Scotland, and numbers continue to increase by approximately three percent every year; the Scottish Stoma Forum is committed to raising awareness about this often misunderstood and under prioritised condition.

The formation of a stoma can be life-changing and access to specialist care and advice is essential to enable people to live their lives to the fullest post-surgery. As a supporter of this campaign, Sir Edward Mountain MSP has personal experience of living with a stoma (which has now been reversed) and understands the impact that good stoma care can have.

To gain an up-to-date picture of the current state of play regarding stoma care services in Scotland, and to identify where improvements are needed, the Scottish Stoma Forum undertook a survey of stoma patients and specialist nurses.

From almost 1,000 responses, 85 percent viewed the support of surgeons and stoma care nurses as ‘very’ or ‘extremely’ important. Despite this, many of the patient views in the survey demonstrated concerning gaps in service. For example, patients expressed that where they experience a lack of contact with health professionals and a wider sense of isolation, everyday living and the consequences of having a stoma can be extremely challenging.

It is this survey which led to the development of the five calls to action being launched in Holyrood yesterday.

These five asks aim to improve stoma care services across Scotland. They are:

1. To ensure patients have the choice of the most appropriate product or service to suit their needs.
2. To facilitate and enable equitable patient access to specialist stoma care support, education and advice.
3. To offer people with a stoma an annual review to ensure they have the best quality of life.
4. To put in place educational modules to bring nurses into the profession, ensure robust succession plans are in place and to have adequate specialist nurses to support the c. 20,000 ostomates across Scotland.
5. To ensure Health Boards collaborate through a national once for Scotland approach and share best practice to deliver the highest quality service.

Among the speakers at the evening reception, Jillian Matthew, who lives in Edinburgh, shared her experience with a stoma: “Having a stoma can bring a range of physical and mental challenges, and there’s a lack of understanding about stomas and the various reasons people might have one.

“You can still live a full life with a stoma as I do, but getting the right support and information is crucial. That’s why it’s so important to raise awareness, and I’m keen to share my experience with MSPs to help inform what good care and support looks like for people with a stoma across Scotland.”

Louise Hoolighan, Specialist Stoma Care Nurse, commented: “As a specialist stoma care nurse, I know how overwhelming it can be for people living with a stoma but also what is possible for patients when they receive high quality care and support. These calls to action are about improving stoma care services across Scotland so that no patient is left behind. I am proud to be involved in this first of its kind event today and look forward to sharing my experience with MSPs.”

Professor Param Mariappan, Urology Surgeon and Chair of the Scottish Stoma Forum said: “The Scottish Stoma Forum is delighted to be working with Sir Edward Mountain MSP and people from across the stoma community on this very special and important event. Together, we share a commitment to amplifying the voice of the stoma community, and by identifying and raising awareness of our five calls to action, we want to improve the stoma care provided to those living with stomas in Scotland so they can live their lives to the fullest.”

About the Scottish Stoma Forum

Formed in 2007, the Scottish Stoma Forum (SSF) has a broad membership made up of patient groups, healthcare professionals and industry bodies. It also works collaboratively with NSS NHS National Procurement and the Scottish Government on key initiatives and activities when required.

Current involvement includes:

• Param Mariappan: Chairman and Consultant Urological Surgeon, Western General Hospital, Edinburgh
• Sarah Goodbrand: Colorectal Surgeon, Western General, Edinburgh
• Stuart Hay: Representing the Ileostomy& Internal Pouch Association
• Brian Fretwell: Representing the Urostomy Association
• Libby Herbert: Representing Colostomy UK
• Jacqui Sibbald: Representing the Ileostomy & Internal Pouch Association
• Cathie King: Advanced Nurse Practitioner NHS Highlands
• Fiona-Mary Barling: Advanced Nurse Practitioner NHS Highlands
• Isla Ramsey: Advanced Nurse Practitioner NHS Lothian
• Louise Hoolighan: Specialist nurse
• Giovanni Cinque: Colostomy UK
• Tony Sinclair: Advanced Nurse Practitioner NHS Highlands
• Alasdair Macintyre: Community Pharmacy Scotland
• Amanda Rae: Community Pharmacy Scotland
• Paul Newman: British Healthcare Trades Association Stoma and Continence Product Manufacturers Section Chair
• Jonathan Scott: British Healthcare Trades Association Dispensing Appliance Contractors Section Chair
• Margaret Smith: BHTA Public Affairs
• Kevin Hodges: Secretariat & British Healthcare Trades Association

Further information can be found here.

About stomas

A stoma is an artificial opening in the body that is used to discharge waste. The surgery is performed
to treat a range of conditions, including bowel and bladder cancer and Inflammatory Bowel Disease,
as well as trauma and disability.

• It is estimated that 20,000 people live with a stoma in Scotland and numbers continuing to increase by approximately three percent every year
• While the formation of a stoma is a life-saving procedure for many, it can result in physical and psychological challenges for people in their post-surgery lives.
• Leakage in particular is a major challenge and can be a constant source of worry, in addition to causing painful skin complications, unpleasant odour and isolation, as well as career and relationship challenges

About the Scottish Stoma Forum’s recommendations

In light of continuing concerns around a lack of progress around stoma care, the Scottish Stoma Forum sought to scope the experiences and views of people living with a stoma and the clinicians who care for them through a patient survey.

From the survey results, the Scottish Stoma Forum developed the following recommendations, which are aligned to the five calls to action launched in Holyrood as part of the stoma awareness day on 4 October 2023:

1. Scottish Government should direct health boards to implement all recommendations from the 2016 and 2020 national stoma care reviews and have active oversight of progress in this area. Central to this is the delivery of equitable stoma care services across the country with a Once for Scotland Approach. This must also include the establishment of local fora in all health board areas involving patient representation.
2. Patients should be given the opportunity for an annual review with a Band 6 or above specialist nurse to achieve positive patient outcomes as a result of evidence based assessment of their needs. This review would consider patient choice of the most appropriate product or service, including potential referral for further specialist support e.g., physiotherapist, dietitian, psychological support.
3. Immediate steps should be taken to improve the dispensing of stoma care prescriptions. Patients have highlighted challenges, in some cases, of getting their prescription to their dispenser of choice due to the lack of electronic prescribing and communication.
4. The Scottish Government should investigate opportunities to address patient information and support gaps including financial and other assistance to relevant patient groups. The overwhelming majority of patients reported they had no contact with a patient group, charity or other stoma patients. They also highlighted the need for pre- and post-operative information, peer support and specialist assistance with mental health challenges and a sense of isolation.

About the event

The event – which was attended by patients, industry, MSPs, healthcare professionals and other stakeholders – took place on 4 October 2023 in Edinburgh to raise awareness of stoma care access Scotland.

A series of activities took place, including:

• 14:00-16:00: Walk up to the top of Arthur’s Seat
• 17:00-18:00: Dedicated debate in Holyrood
• 18:00-20:00: Evening reception where MSPs, attendees and press attendees can hear firsthand about patients’ experiences of living with a stoma through a series of patient talks and films.

Press contact

Kevin Hodges

Membership Engagement Manager, British Healthcare Trades Association

+44 (0) 7711627419

kevin.hodges@bhta.com