We have all heard about ostomates suffering changes to their prescriptions or items being no longer available to them. I did a survey earlier in the year in which ostomates around the country said whether they were affected and what they deemed as accessories as from what I saw in the groups it tended to be the things healthcare professionals that aren’t stoma care nurses deemed as essential to good stoma care.
Now we are all individual and different things are classed as essentials to us; these things may also change with time and what we learn works for us or our needs change, Back when I first had my ileostomy my items were different to what they are now. For instance it used to be:
- adhesive remover spray
- barrier spray
- barrier rings
- flange extenders
- gelling agent
Now it is slightly different:
- barrier wedges from Peak Medical
- barrier wipes
- adhesive remover wipes
- gelling agent
I also from time to time use the jasmine and gardenia ostomist drops but it is often a case of when I remember and as these are only £5 once I have used what I have I will just buy these rather than adding on the already strained NHS budget. They do last a long time so I definitely think they are worth it.
I changed from sprays to wipes because of two reasons saving the environment and my skin became allergic to the barrier sprays. I seem to have a stockpile from when I have switched suppliers or when my prescription seems to have been altered; but I am slowly using these up and just not ordering anymore. I find the powder is a godsend for when I have a little redness around my stoma site and I use the wedges now as it is more area specific than the whole way round – which is perfect for those that have dips and/or creases.
For me the accessories are actually the drops/sprays, lubricants and the complimentary items from the suppliers. There are some fantastic ideas for lubricating your bag should you need it and I think one of the cheapest ideas is baby oil. Now I haven’t used this myself but I’m sure only a small amount is needed – if you have used this please add your experience in the comments. The complimentary items are the wipes and disposable bags; now I’m not sure what could replace the dry wipes but dog poop bags are cheap enough and come in a good size roll which are perfect for disposing your bag.
A lot of people seem to see the adhesive remover sprays as an accessory along with the odour and complimentary items. I think the sprays are actually quite bulky and take up a lot of space where as the wipes are handy and do the same job – plus the remover wipes are saving you using a dry wipe to remove stubborn adhesive on your abdomen which is why these to me are accessories.
The CCG’s which means Clinical Commissioning Groups are the ones who govern what people get on prescription and each county has a different CCG governing their area. “Clinical Commissioning Groups (CCGs) were created following the Health and Social Care Act in 2012, and replaced Primary Care Trusts on 1 April 2013. They are clinically-led statutory NHS bodies responsible for the planning and commissioning of health care services for their local area.” – https://www.nhscc.org/ccgs/ Each have their own guidelines which to me seem to enhance the NICE postcode lottery status; what I mean by that is you maybe entitled to a specific drug but administered in a certain way yet someone in the next county either can’t receive the drug or has to have it administered in a certain way. I remember this was a big this plastered across the news frequently when I was a teenager.
These are the people who are deciding what you can and can’t have on prescription either due to cost or what they deem as essential or to them are just accessories. Brands are being swapped due to cost and I have to say this is quite concerning especially when it comes to people’s skin. For example I’m allergic to all of Coloplast’s product barr their stoma powder, they dry out my skin and cause my eczema to flare. Others may have different skin complaints ranging from sensitivity to psorasis amongst many others. Other issues may be as simple as being able to open or even use the product – now that to some arthritis or other motility issues isn’t simple but can be a massive detriment to how they deliver their own care.
I have been told from my stoma care nurses that the best way to try and get the products you want or need (still subject to CCG guidelines) is to order your script from your surgery but be specific about which company you want to deliver it ie Securicare or Respond. I have found that it is incredibly annoying when the surgery and the delivery company mess up your orders. In fact recently I had sorted out my prescription with a local pharmacist who comes to my surgery exactly what I wanted as they are only supposed to provide you with what has been prescribed but my delivery company sent out what they had without asking as I don’t need everything every time I order as I often find I end up with an unexpected stockpile and this occasion I was sent stuff that I can no longer use. Give them their dues they rectified it and I spoke with my pharmacist to find that I wasn’t the only one who experienced this. If you get your bags cut your local pharmacy can’t do this so you need to ensure your surgery knows that you need them sent off to be cut by your preferred supplier.
By doing it this way your surgery will be able to keep accurate records of what you are using and what you no longer need. I hope that people are only ordering what they need or what they deem as essential to them as it means that in time the CCG’s have a better idea of what money is spent on what and that the majority of ostomates aren’t stockpiling for the apocalypse or fall of the NHS. In the UK we are incredibly lucky to have such an amazing but ridiculously overstretched system that we can access for free. We really need to all band together ostomy or not to not abuse this wonderful system and fight those who are wanting to take it away from us. So little things like buying your own paracetamol can help tremendously or using the correct health service for your needs. Our NHS needs us just as much as we need it. To read more on this subject Rachel from Rocking2Stomas wrote an informative post on your rights with the NHS.
What are your thoughts on essentially the ostomy postcode lottery? What do you feel is essential or accessories? If you would like to see the full survey and results from the questionnaire I did earlier in the year please click on the link.