Pressure sore advice

[TinyLady]

I have a pressure sore on my bottom apparently (can't see it myself!) which is unsurprising as I am so immobile. My care agency told my carer to contact the District nurses.... but they have refused to see me.

I'm severely allergic to many things (but as that hasn't been investigated yet, I'm only guessing macrogol and Polyethylene Glycol are amongst them) so reluctant to try any new cream or dressing I could buy.

Can anyone give me any advice on how to sort this pressure sore? I'm so upset that yet again I'm having to rely on the lovely people here to help where the NHS is clearly worse than a chocolate teapot.

[Artie]

How awful for you TinyLady Did the district nurses say why they wouldn’t see you? They surely can’t refuse to treat this? I’m so sorry this is happening to you.

[TinyLady]

Artie - they said if I can get in a car then I can go to my GP surgery....
I can get in a car but I can't use 3 of my limbs, seak clearly or move much. I would be exhausted from a trip to the GPp and at risk of catching something I really don't want... I thought I was exactly the sort of person district nurses should look after. I think it was my age. They see I'm in my 40's maybe.

[Artie]

TinyLady Can you tell them that you can’t get in a car? I’m really shocked that they won’t do a home visit.

[TinyLady]

Artie - technically I can get in a car (with a lot of help) because I MUST go to some hospital appointments by car. So I probably don't meet the definition of house bound.

I will just have to leave it and hope it doesn't get worse. Trouble is I can't move in bed and I sit in one place in my recliner all day. I think it's fair to say I hate my local NHS. I think they are cruel and leave me to suffer. But nothing new there!

[Artie]

So angry 😡 on your behalf TinyLady

[Claireflo]

TinyLady I'm concerned it will get worse if you leave it. There are cushions often used in wheelchairs that have lots of little balloons that are filled with air and the balloons under the sore can be deflated so that there's no pressure on the area where you're sitting.

You really do need some help from the OT and some support from the doctors. I'll try and find the name of the cushions if its any help x

[Ellie]

Is the skin broken, red, grey/purple, flaky?

Treatment depends on what stage the pressure sore is at and that can only be done by someone who knows what they're talking about. So, in the absence of a District Nurse doing their job (I'll say no more...), what about contacting the hospice 😬

Typical dressings such as hydrocolloid dressings, are very expensive and need regular changing. Barrier creams should help prevent sores (I use LBF barrier cream daily) but, as I said, it depends on what stage the sore is at.

Trouble is I can't move in bed and I sit in one place in my recliner all day.

Obviously you have no pressure relief cushion and presumably zero chance of getting one, so maybe look at buying a real sheepskin to perch your little bottom atop. Also, if not doing so already, change your position by rregularly eclining and raising the legrest.

Have you a decent cushion and tilt in space on your still stationary (?) wheelchair? xx

[TinyLady]

Thanks everyone. So grateful you all listen and don't fob me off.

OT not an option (but she is coming next week apparently 🤞). District nurse says I'm not housebound so won't come. Will try to get GP appointment but in the meantime try to manage it. My carer took a photo it is red and scaley I don't think the skin is broken yet though. I have a repose topper on my bed, but it doesn't work very well when you never move.

I am allergic to colophony which is in most dressings and adhesives. I'm allergic to macrogol and polyethylene glycol which are in the barrier creams. So I have no idea what is safe for me to use. Had hoped that would be sorted by now.

But Ellie good idea about moving the recliner chair position. I will also look at a real sheepskin... how does that work? Sounds like magic 🤣

I really wish I could give up. I have no fight left xxx

[Deb]

Aw TinyLady I'm so sorry you have a pressure sore.

I can't move in bed at all and sleep on an ordinary memory foam matress surrounded by pillows. I was prescribed barrier cream as a prevention but am guessing you would be allergic. I use sudocrem on my peachy back and buttocks and just e 45 on my legs and feet.

After our last flight to Spain I developed a pressure sore. Apparently it was tiny and just a red spot but it was very painful.i guess the best cure is to take the pressure off but that's not possible for you and me. The pharmacist in Spain gave Stuart some soaked pads ( they could have been anything though as his Spanish is worse than mine !) I tried to change positions/cushions and chairs during the day.

It's terrible you can't have a district nurse to visit. When my mum had a sore ( not mnd related ) she had two visits a day to change the dressing.

Hugs to you and fingers crossed you feel better better soonxx😘🤗

[TinyLady]

Deb - I'm trying to move my recliner chair position frequently today. But not sure I can do much in bed. My skin is very sensitive and seems to damage easily. I get sores from my resting splint too, but I fixed those with a silicone pad.

[Ellie]

I will also look at a real sheepskin... how does that work?

It has to be a real sheepskin fleece but apparently;


How do medical sheepskin products help with pressure sores?

The high density of upstanding, springy wool fibres distribute body pressure over a large area and move with your body to reduce friction, shear and pressure points.

In addition to this the sheepskin's wool can absorb up to a third of its weight in moisture without feeling wet and release it into the air. By wicking moisture away from the skin, comfort is improved but more importantly this can help prevent the development of pressure sores


IDK if the last bit means you can happily have a pee on it, mind you, that could come in handy 😂😂😂

"Medical" sheepskin is normal sheepskin which can be washed over and over, for use in hospitals and care homes, as well as in the home.

And def get into the habit of reclining, then sitting up, throughout the day as it changes how your weight is distributed. xx

[MMG]

Medihoney was really good, and if the beginnings of a sore started, red skin or flaky the district nurses provided biatane silicone sticky pads. (think that's how its spelt?) These were very good and prevented it ever getting any worse. Deans were on his bottom due to being immobile and also top of his back over his spine. Or Bepanthon nappy rash cream which is quite gentle.

District nurses should care as development of a pressure sore is a reportable never event. Prevention is much better than developing a sore.

Can you report to safeguarding - your level of care is appalling. Reports should get taken seriously, not just regarding sores but your level of care generally.

[TinyLady]

MMG sadly I've checked. No district nurse unless I'm completely house bound.

I've been told to go to my GP but that will take a week and I expect they won't be able to do much due to my allergies.

I was once reported to safeguarding by my social prescriber but nothing happened except they contacted my GP who then wrote a snotty letter and everyone was satisfied. Then I got left by my social prescriber (I think I must be too difficult).

I'm just getting on with it. I accept for whatever reason I am not poorly enough/ significant enough or whatever to bother with. Just a shame my constitution is so strong and I fear this could go on for months.

I know I am not getting the care I care I should but no one seems to worry as long as they save money.

[Madge]

TinyLady I feel for you so much as I have now developed bed sores which mortifies me. It devastates me the way you are having to fight for everything, for goodness sake you have MND!!! When I started to get a sore bottom my palliative nurse came out to see me and prescribed barrier cream. I tried various creams and potions but I eventually had about 6 blisters on my bottom and the district nurse came and dressed the worse ones. My mattress was changed and I now sit on a cushion in my chair. My carers are in touch with my palliative care nurse too and the DN visits once a week at the moment.
Tiny lady have you asked for your GP to visit you at home, and explain the difficulties you have to get there.
i have heard about using a sheep skin but does it help bedsores? I thought sheep skin would make me even hotter 🥵 so never gave it a go.

i know you must be tired of all the effort you are putting in but please don’t give up. Have you a hospice you can speak with someone there.