The common topic at the moment is CCG cuts (still) and the lack of support for hernia prevention over cure. I have at least 60% of members in my local support group with a hernia and a new member came today just to discuss this. It saddens me that financial ties are preventing key care for not only local ostomates of mine but nationwide.
I allowed myself to comment on a debate yesterday, on the Stomawise private group. Many are receiving letters still (the initiative began over a year ago) banning various accessories from prescriptions. I offered the facts and my views which I will put here also.
1. These letters are not confrontational and explain the facts well. It is not personal.
2. This method of contact may seem like a blanket approach, however it means anyone wanting to question their scripts can get in touch with their stoma nurse (some may not have done so for years) and reassess what is CLINICALLY necessary. It’s the easiest way to audit everybody & provide what you need.
3) GPs are not trained like SNs and so please do not feel they are punishing anyone. It is best for the nurses to appeal on your behalf and inform the GPs of your needs and why.
4) It has been proven that long term use of some accessories isn’t necessary BUT by seeing your nurse and GP, you can query items and get them reinstated if absolutely vital.
5) Ostomy underwear (non supportive) isn’t deemed a necessity. I’m on the fence about this (for confidence reasons) but can say that it’s inexpensive and we were buying our underwear before surgery. This will be very individual and your GP may support your views & needs. I feel that the hernia support wear IS a necessity for prevention as well as maintenance/protection of existing hernias. Again discuss with your nurse & GP. You are currently entitled to 3 pieces of support wear per annum.
6) I believe many will want to keep their sprays, pastes, powders, rings etc and so this again can be discussed with your care providers. Where possible they ask you to try a cheaper brand and I think that’s a small ask considering the current state of our NHS.
7) I do NOT feel that lubricants or deodorisers will ever be a necessity and things like baby oil, essential oils, tic tacs and air fresheners are quite sufficient. I understand those with COPD may find the ostomy brands better but again you must argue this in clinical terms. Not anxiety or confidence sadly. Our poop smells and that’s a fact of life. If you still don’t see this, I urge you to look at the online drugs tariff and look at just how much extra it costs our service.
8) Just be mindful of ordering only when required and only enough for your needs. Samples are a great way of keeping spare sprays, wipes, powders, pastes etc and so I advise this for travel supplies and back ups.
9) Stoma nurses are on your side and don’t make these decisions! They are being pressured as much as us. The local care commissioning groups are looking at a rise in costs and not taking all elements into account (more diagnosed conditions resulting in ostomy surgery, premature ostomate survival & population living longer), therefore we sadly see this approach. The mistakes of few, affect the accessibility of others. I disagree with the sense of entitlement I too often see also. I for one could never have paid enough tax to cover my medical care & feel grateful that we are not in the current situation of our US ostomates. Be grateful for your care.
10) We will not have to use generic bag choices, so do not panic.