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Jun 26, 2011

Is More Support Needed in Hospitals and at Home?

This topic is about improving the support that people with ostomies receive both in hospitals and at home, especially before and after surgery. The person sharing their experience noticed that the support can be inconsistent, with some nurses not knowing how to change a pouch, which can leave patients feeling vulnerable. At home, while family members try to help, they may not fully understand the experience. The person is interested in becoming a peer supporter to help others going through similar situations. Here are some insights and advice on this topic:

1. Existing Peer-Visitor Programs:
- The United Ostomy Associations of America (UOAA) offers a "trained visitor" program that includes hospital, home, and phone visits, which new patients find very helpful.
- The Canadian Ostomy Society provides in-hospital visitors, which members have found beneficial.
- In the UK, organizations like the Ileostomy & Internal Pouch Association and Ostomy Lifestyle offer structured visitor training and volunteer placement. These groups need volunteers and provide formal training before matching them with patients.

2. Benefits of Peer Support:
- Many new ostomates express a wish to have spoken with someone before their surgery.
- Large local support groups, monthly clinics, and online forums offer practical and emotional reassurance.
- For those in rural areas, phone or online contact is valuable due to the long travel times to see specialists.

3. How to Offer Help Effectively:
- Completing a recognized visitor-training course is important as it prepares you and covers boundaries and safeguards.
- Be prepared to speak in public and to professionals if participating in seminars or education days.
- Ensure you are confident with your own pouch routine, such as changing your bag and troubleshooting leaks.
- Use multiple channels to offer support, like bedside visits, follow-up phone calls, and email or online chat, which are especially useful when privacy is limited or for patients who are house-bound.

4. Education Gaps Highlighted:
- Many ward nurses, care assistants, and even some dietitians may not distinguish between colostomy and ileostomy, leading to inconsistent basic stoma care knowledge.
- Emotional support is often lacking, with fears being minimized, counseling rarely offered, and some staff making insensitive remarks.
- Patients might leave the hospital without knowing how to change a pouch or manage skin problems, and district nurses may also be unfamiliar with these tasks.
- Seminars and collaborative hospital-forum projects are suggested to improve staff skills and share new techniques.

5. Timing and Matching Matter:
- Some patients may be too shocked immediately after surgery, so it's important to approach them sensitively and respect their refusals.
- Matching patients with the right peer supporter based on age, lifestyle, personality, and location can improve outcomes.

6. Psychological Support:
- Counseling should be routinely offered, but access can involve long waits, such as waiting for a GP referral.
- While peer visitors provide empathy and lived experience, they are not a substitute for professional counseling.

7. General Encouragement:
- Volunteers find the role rewarding and in high demand. Others have expressed gratitude to the person for wanting to help and encourage them to pursue it.
- Online communities can complement in-person services and may soon be integrated into medical facilities.
See full discusison
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