Any nurses out there?

Lucky girl, what he needs is a mattress run on electricity that alternates pressure. Please push for one of those or if you can and have to ,rent one yourself. Getting on one of those will help to prevent sores .
You can also get one as a cushion. Just foam will not be good enough.
Take a photo of the skin damage.
He is unlikely to become more mobile so the sooner he gets on one of those the better.

I will feel happy when the specialist nurse takes a look at it; and hopefully he/she will be able to provide advice to me on the best way top prevent problems.

He is in less pain now as I have managed to get him sleeping on his side for the last few nights, so he is only sitting on it during the day.

His daytime cushion is a Herida Healthcare "Berkshire", and his mattress is a "Prima Closure" from NRS Healthcare. Both just feel like solid foam.

I try to keep him as mobile as possible and normally he does potter about, but he is done in today as I gave him a strip wash and hair wash, and it takes it out of him completely.

The hospice have offered a monthly jacuzzi bath there and barber input - I might take this up as he might enjoy it.

I have also looked into a carer to give him a good wash and hair wash twice a week - I will see what he thinks.

Tip: keep updated copies of any notes left with you. Useful if anything happens and they get 'lost.' Voice of experience.

I do hope the specialist nurse has the answers you need and a solution to whatever is causing such pain Luckygirl

Annoying for you to have waited all day with what appears to be a visit from the DN which, it seems, left you no further forward.

Shame you missed going to your choir as, you have a life too which is important for you to have for your own well being ?

The pain is a symptom of tissue damage. Just keep the pressure off until the tissue viability nurse does a full assessment and a mattress is provided.

I'm really glad you'll be getting a visit from the specialist pressure area nurse s/he can confidently confirm whether it is a pressure sore or not. In my experience dry skin does not usually cause intense pain whereas a pressure sore does, so I would be seeking reassurance.

Rubbish, that's a pressure sore. Is the mattress he is on a good pressure relieving mattress? If not insist one is made available. Try to position him side to side so he is off that area. Get hold of a p r cushion that plugs in when he is sitting. Ask him to stand up every half hour when he is sitting.
Take a photo of the skin as a record and try to get a second opinion.

Thanks everyone.

District nurse appeared at about 7.15. She says that the red raw area and the peeling have been caused by the skin getting very dry. She does not think it is a pressure sore starting. I am still puzzled as to why it causes him such intense pain; but will wait for the specialist pressure area nurse and talk with her about prevention. I am ignorant about these things and am desperate not to go down the pressure sore route as I know it is hard to come back from.

I am grateful for all your suggestions.

Lucky; no advice, just a little solidarity as I remember going through all this and it's not easy.

Medicineplus.gov is a good site to look at for the time being until your DN shows up.
Here's one screenshot.
I do hope your DH/OH has a restful night and the sore heals well.

Oh Lucky I am so sorry you have such a hard life. Caring for someone is very hard. Maybe your DD won’t mind discussing your DH bum. I used to do everything for both my parents. It is just what you do.
Sending

Saw PD specialist today who is going to try and get a specialist pressure area nurse to visit.

In the meantime we need the district nurse to come and assess the situation with the raw area right now. We were promised a visit before 12 today (because we had appointment at hospice) - no-one came. So I rang and arranged that someone would call this evening before 7 pm (when I have to leave for choir) and so far no-one. My DD stays with him on a choir night, but I cannot leave her to discuss her Dad's bum, I will clearly not go out and wait in for the nurse, but I do not even feel sure that they will come at all and I will have missed another practice for nothing.

I know they are busy but it does feel frustrating. I just want someone to look at it and tell us what to do.

Oh I'm so glad it helped.
Yes, please still phone the district nurse, as she will have the most up to date info, plus she does need to have a look at the sore bit.

The video link of how to turn someone on their side was a huge help and I succeeded in this last night - so his bum is less sore today. I will still ring DN as I would rather be safe than sorry and there are several other things to discuss with her.

We had a Kurtain ( not sure of the spelling ) which meant I could tilt it back when Jim fell asleep and the leg rest could be lifted too . this meant he was not curled up , the OT provided it

Gosh - lots of interesting advice.

One difficulty is that I can only access one side of the bed as his profiling bed is rammed in next to the double bed. I need to give this some though as the side of the bed I can access would mean I would turn him on his left side (as per the helpful video) and he cannot lie that way as it triggers his AF.

He is ambulant during the day, but in reality spends most of his time asleep in the chair on his cushion. I try to get him with his legs up on the sofa to redistribute his weight but it is difficult - he is mainly in a bent over crumpled position - he finds it hard to lift his head and he is mostly chin-on-chest.

I have always thought the cavillon was a strange thing as he is thankfully not incontinent - I feel he should have a moisturising cream to keep the skin supple.

You have all given me lots of info to use in a discussion with DN:
- does he need a different mattress?
- should he have a better cushion for the day time?
- is the Cavillon the best option for him?
- how to turn him on his side within the confines of the space and his AF? Turning him on his side might not be a good idea and might be unnecessary with the right mattress, as suggested above - it also worries me him being on his side as he has very bony flesh-free hips and I would think they are at risk of getting sore.

I will ask for a re-assessment of the whole situation. I am not the fittest, especially my back and hip and am trying hard not to crock myself up too!

Is there anything else I should be looking at/asking?

Cavilon spray/cream is a barrier for use in incontinence to protect the skin - from what you say your husband has a pressure ulcer.

As he's ambulant during the day he shouldn't need turning overnight, if as I said earlier he has an appropriate mattress.

Do you use a 'draw' sheet underneath him? If so you need not lift him at all. Try pulling the sheet towards you to move him and then place a pillow into his back. No lifting and very little effort. Ask the D/N to show you. It sounds as if a full re-assessment is needed. Do you have a copy of the community nursing pressure sore safeguarding protocol? If not ask for one (just asking tends to get things moving.) Good luck

Did you see DIY SOS the big build from Mildenhall this week? They provided a profiling bed for the gentleman, which incorporates a tilting function with timer for 30minutes, 60minutes etc. I wonder if they could advise about the mattress/bed?

youtu.be/VZYu0-UjAsA
Maybe watching this kind of video could help you to help him, luckygirl.

Thank you for all your helpful advice - it is much appreciated.

I have just looked up his Waterlow scale score and it is 17, so not a trivial risk level.

We have been keeping a close eye on it all day - it is no worse, and no significant pain. We have decided to see how it is overnight and talk to DN in the morning.

We do have the cavillon cream and the spray. We have only used the cream up till now, but used he spray today.

I am wondering whether he needs a better mattress and cushion. The cushion looks very hard to me; and he was still in pain last night even on the mattress. The problem is that, although he walks about a bit during the day, he cannot change position by himself during the night - apparently that is typical of PD. He has an NHS profiling bed but that does not help him to turn on his side, which is what he needs to do - I find it very hard to turn him on his side, even though he also has a slide sheet. The bed only changes his head position up and down, which does not deal with the problem.

I will talk to DN tomorrow. Thank you all for your advice - this is all new territory for me.

Sheepskin has not been outlawed but it tends only to be used as heel and elbow protectors - and it should be real sheepskin not synthetic.

As for meths - that hasn't been used for at least 30 years - or at least I hope it hasn't!

By special mattress I hope he has a powered hybrid air mattress - this one is what I see most in use. Ignore the prices, they are supplied by the NHS.

Mattress

Now the skin has broken the Community Nurse needs to come and re-evaluate - he may need a dressing along the lines of a Mepilex Border Sacrum to prevent further damage.

Luckygirl, do you have a ripple cushion for your DH's chair? You know, the kind that has an air compressor that inflated and deflated the cells. If you don't, it might be worth asking the DN about one. Also, does he have a ripple mattress in his bed? There are also really good foam cushions that redistribute weight.
Barrier cream protects the skin around the sore, and hydrocolloid dressings are good in helping new skin to form and heal the sore.
I once helped nurse a lady with a huge sacral sore. We got it to heal, and her GP was very impressed. I don't know how long ago kalu practised, but sheepskin was outlawed years ago. Sorry kalu.

I remember those days EllanVannin I think things have changed a lot now.