Dear All
the OPA is considering using some of its reserves to subsidise wedge pillows for members. Does anyone have any views on the topic? I have only just started to use wedge pillows (three and a half years on), and they are a great help to me. I'd appreciate any feedback as I will report to the Committee in February and your views would be most welcome.
Regards
Haward
Hi Howard
I think it's a great idea to subside wedge pillows
The majority of us need to be propped up while sleeping so any help with this would be appreciated.
Phil
Hi Howard i think it is a great idea to subside wedge pillows as most of us need to be propped up while we sleep so any help with this would be appreciated I know I would be really appreciative with any help since I lost my job through ill health
Margie
This would be a fantastic idea....
A great idea, as has been said already the majority of u sure some form of additional pillows and I have personally bought a new one of these most years since my operation, the quality varies so much with some only actually giving me support for a few weeks so to have a good item we know we can trust would be an excellent idea
I would appreciate help with a wedge pillow as I do not know which is the best one to buy. There are so many different sorts I have seen online so hence still laying flat! Any suggestions would be appreciated xx
Hayward
I have used one since the start of this journey (4.5 years) and the really good. However, you have to make sure you choose the right one. In my experience the harder type tend to be less comfortable, whereas the softer fibre type are better. The ones stuffed with feathers are also ok but the odd feathers often push through outer material and are prickly.
Hope that helps
Malcolm
Hi. I am 4 years post surgery and did try making a 'wedge' with pillows without success. I have since laid (layed, lain?) flat but need to get up a couple of times a night for the trusty Gaviscon. Not tried a purpose made wedge, so would be interested. Best Wishes to All. Alex
What a lovely thing to consider doing. I live in Canada, and my wedge-pillow had to be special ordered by a store, and the pillow cost me $160.00 Canadian. The wedge pillow has helped 'gravity' move whatever is left in the esophagus, at the end of the day, into the stomach. I have Achalasia [type 1], and am 5 weeks post-surgery [Heller Myotomy & Fundoplication].
I have a wedge I bought early on topped with pillows as it's quite firm and too low on its own anyway, so would have appreciated guidance on the best to buy. However, perhaps it might be better to provide financial assistance to those who really need help purchasing and using the remainder of funds to promote awareness and educate GPs, etc.
Thanks Quicksilver. We are doing both. Next year we hope to expand our awareness work and we have a Trustee who will take on this special role. I don't think that we have the resources to means test members so we will have to make it a general offering.
I am the same; I use the wedge and two pillows and that works quite well.
Haward
I bought a blow up wedge pillow for my holidays, or events away from home. It works really well if you put it under the mattress and have a small pillow under the head to keep the spine in the neck straight. At home I was lucky, my husband bought me a special bed which has a motor that lifts the head up and down to the angle you want, and the feet as well. Marvellous. Had my op in 2012, still working part time, but that's because I am over retiring age, but love my job. Eating most things except sticky bread and cake, 😳. Keep positive, keep smiling, very Happy Christmas to you all. ❤️
Agree that is a lovely idea .
I wonder if as an intial thing some kind of report from "experts" could be comissioned or saught ? I'm thinking physio's or occupational therapist ? ...not sure but no doubt someone working in NHS would know appropriate person.
Someone who knows about the body and how it works . Maybe someone who knows about the effect of pressure on parts of the body when other parts are propped up - pressure sores etc .Or about the best material for wedges ? Though of course we're all different .
I sleep propped up with millions of pillows ,behind and either side .It's hard to rest my head .And I can't seem to stop my body wanting to sleep on one side as opposed to on my back .Which means I'm really twisted and now have permanent sciatica .And my legs hurt from bracing myself to stop slipping down .It's very tricky .
Thanks Violetqueen. One of the two I am testing has an NHS recommendatio already. I will check the pedigree of the other one. But they work for me. I am down to two pillows and one wedge and sleeping better. H
Sounding good -) .Which ones are you trying ?
Sorry to be a party pooper but this subject has been covered previously.......
1)healthunlocked.com/oesophag...
2)healthunlocked.com/oesophag...
3)healthunlocked.com/oesophag...
In my view the OPA would be laying itself open to being sued if it endorsed (by way of sponsorship) such a controversially dubious item of equipment!
You're a lawyer? What would be the basis of the lawsuit? Some of these pillows have NHS approval; there's no record of the NHS being sued. Nor would they be on sale in the open market were they dangerous.
Yes thats a great idea
good idea if the help
Hi Winnie. They are helping me. They are easier to arrange than my usual four Pillow array.
Haward,
Brilliant idea. Mine cost £50 with all other costs piling up it took me a couple of months and a lot of discomfort to decide it was worth it. So glad I have as bile regirge is currently an issue. I am lucky, I have an understanding employer but for many people that money would be needed for fuel for hospital trip, food or heating.
Claire
Hi Haward
Excellent idea. However we tried this a couple of years ago and were left with some pillows in stock. Ask Maggie for details. May be better (as someone has already suggested) to give grants/subsidies on receipt of purchase proof.
I still use a variety of pillows - from the V shaped to a foam base under a cluster of ordinary ones
No, where I mean only for special cases where a wedge pillow is needed, the reason follows.
I think a charity spending money on a resource within the remit of government insurance, the NHS, we paid, is inappropriate.
When I left hospital after an Ivor Lewis all I was given was trivial advice booklet and much the same information verbally from (I think) occupational health. This was indeed all about pillows, plus mention of a backrest or electric/hospital bed. Hospitals are notoriously poor at the cross-disipline necessary on discharge. Occupational health could have arranged a backrest, didn't ask me, I didn't know to ask.
Pillows I found were very unsatisfactory. I was already inserted into the district nurse system, predated the operation. This meant I only had to pick up the telephone; a known person might get a better response, the nurse I spoke with instantly said I need a backrest and literally the following day the doorbell rang, a new backrest was handed over by a courier. (these are about £25 retail, or less, should be no VAT either for us)
This leads to further points.
Having used a backrest for months now I am in a position to appraise but I have not used a bespoke back support pillow / wedge so I cannot compare with those. I have though spent time in hospital since, can compare with an electric bed.
The bed wins over a backrest and I suspect over pillows for a non-obvious reason. A suitable bed can raise the mattress to form a V shape, can rise under your knees. This mostly solves the problem of sitting up where you slide down the back ramp during the night, ending up lying not sitting and maybe "crotched" by any legged underwear you slide into, ouch.
The backrest I have has a painted tubular steel frame. This poses a problem if the bed does not have a sufficiently robust headboard, the frame will push backwards against this. In addition an anti-squeak cloth is needed between the frame and headboard.
Another backrest problem, maybe common with pillows: how to stop sliding along the bed towards the bed foot. This is why the bed has an advantage, if very sub-optimum unless you have a tilt bed. (very expensive)
* Online formulary listings suggest Sidhil are a supplier of beds etc., by chance their web site front pack currently shows the kind of backrest supplied to me. I've managed to find the catalogue item sidhil.com/shop/general-acc... not a good web photo. My wife has tied a flatt-ish pillow to the bottom half of the rest, a pillow is used on the top half. At first I tended to fiddle with the backrest rake, try and improve comfort. Today I leave it in a fairly upright position, there is no wonder setting.
I think we should work with a body to design aids specifically for our condition provided end cost is tightly considered. (I am a former design engineer) This is a good target for a charity.
From personal experience a combination of raising the bed head on blocks by 4" plus a 4" wedge under the mattress works best for me and puts less strain on the back than a thicker wedge. Subsidy is fine if the finances exist for OPA's range of activities. It occurs to me whether we should qualify for VAT relief if need supported by a doctor?
I found that wedge pillows per se did not do the job, since I would slip down in the bed during the night. Though more expensive, I found the folding 3-part bed top which has a wedge pillow but keeps the knees bent to anchor the bum much more effective. I also found that I did not need either type of aid after using the 3-parter for several months and now sleep with two pillows only and mostly on my left side 15 months after my Ivor Lewis. Regards,
Worth
Hi Worth. I've heard a lot from people who slip down the bed and heard all sorts of cures including apple pie bed cures. I slip down sometimes but still find the wedge an improvement. Haward
I had an Ivor Lewis September 2015 and after about 11 months and trying to sleep on a mountain of pillows I decided to look at wedge pillow. I looked on Amazon and EBay and decided on the EBay option. The prices were from very low to the high end, I opted for one for £22 and it is brilliant I very rarely have reflux now. I take one 30m lamprasole 30 minutes before main meal and if I think I might have eaten or had drink a bit late then I take Gavascon and I have no problems. Hope this helps.
Is a raised bed not better than using pillows ? I had my IL 18 months ago . I tried a "hospital" bed for a few days and then tried raising my bed . Mattresses on electric beds must be flexible and consequently are not as comfortable as a good quality standard mattress . Using pillows or an electric beds means trying to sleep while the body is in a "kink" ie it is not possible to lie flat and it is very difficult to lie on ones side - at least thats my experience . Also with pillows it is very easy to slip into a flat position which may have undesirable consequences .
So from the very early days i have raised my bed - 200mm or 8 inches . I can lie on either side with no problem and there is no risk ie I am always on a slight slope .It costs very little to raise a bed . The base of most beds is made of timber and it is simple to fit 2 small pieces of plywood either side at the top and 2 more at mid point . The material would cost is insignificant and labour absolute max 50 euro . I did my own and would be delighted to supply a sketch if required.
Pneumonia
inflatable bed wedge 
I wondered if any of you had purchased an electrical bed ? Since coming out of the hospice where he had such a bed Nielsen has noticed a lot
Retching, wedge pillow and immunotherapy
