mum is now in a good nursing home - but we are having real issues with her prednisolone and in particular sick day rules. GP is ok ish - but wants to be asked every time they need to change the dose…..I’ve had to push for double dosing twice for diarrhoea and am now constantly angst as to what might happen next. She’s had one adrenal crisis due to misinformed GP and I don’t want another.
They also dropped her from double dose too steeply and resulted in shaking …but was told it was coincidence.
Does anyone have any experience of managing steroids and adrenal insufficiency in a care home setting?
I am now seen as an emotional hyochondriac even tho I have called it right each time!
It’s making my life a little stressful….
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RT18
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Is your Mum in a 'Care' home or a 'Nursing' Home? If it is a 'Nursing' Home, there should be a registered nurse on duty 24/7. I had issues with my Mum's care and went to the Nurses every time. Sadly, the place was run almost exclusively by the Carers, who had no medical qualifications. The one nurse on duty sat in the office most of the time doing (essential) paperwork, but I always knew where to find them.
If it is a 'Care' Home, then the manager should be your contact. There may even be an Area Manager if the Home is part of a group. You say it is a "good" Home.....?
Your Mum must have a 'Care Plan' in which Sick Day Rules and tapering of prednisolone are documented.
I blame the stress of it all for my developing PMR & GCA 8 years ago! My heart goes out to you. 💐
Hi, what a difficult situation. I worked in care and nursing homes. In my experience in a care home there are no nurses but the General Manager may be. The medication usually arrives in Dosette boxes and there can be no variation of dose unless prescribed PRN. If anything needs changing then a doctor would be consulted. So I can definitely see how this would cause problems for your mother. Is your mum have full capacity, ie is she suffering from Dementia? If she has capacity it might be possible for her to manage her own prednisolone. The home probably will not like it but depending on their policy it may be possible.
Nursing homes are different as they always have nurses on duty. The nurses administer the meds. However once again Dosette boxes may be the norm. However, they may keep additional prednisolone if the doctor agrees and it should be possible for the nurse to administer extra pred to cope with flares providing it's in the residents care plan. Again if your mum has full capacity then she may be able to administer her own prednisolone. In any event I would speak to the Head of Care at the nursing home to make sure it's all in the care plan.
Before I was diagnosed I met a lady in a Nursing Home who had PMR. The Nurses always moaned about her wanting her meds at exact times etc. In the end her family arranged for her to have her Prednisolone in her room. I now understand why this was such a big issue for the lady. I take all my meds at very specific times and have found this to be a major issue if I go into hospital. Last time I kept my meds with me and self administered with full knowledge of the staff.
If your mum had dementia then it won't be possible for her to self administer. However I would suggest that you meet with the care manager and the GP and get everything written into her care plan. Threaten them with reporting them to CQC as lack of duty of care if they don't get everything properly into her care plan and administer it correctly. Your mum should also have a key worker who could be educated about PMR and sick day rules protocol. You may be lucky and find that your mum's key worker is a nurse working as a carer to get her PIN in the UK. These carers are far more likely to understand about steroids.
There's one other thing you could do and that is to ask the homes training manager to do a session with the staff on PMR and offer to go along and chat about your knowledge of the condition and how it affects your mum. Long shot but some homes would welcome this.
That is such a detailed reply S4ndy. You will have seen various Homes, as I did until Mum had to leave an excellent 'Care' Home when the NHS deemed she needed 'Nursing'. The 'Nursing' Home had only a single nurse on duty at any one time and the care staff administered the medications! Her care in the nursing home was far worse than in the lovely care home she left. When the CQC inspector came, the staff kept me away from them. That said it all!
Keep strong, RT18 and know that we are all thinking of you.
thank you all 🥰🥰🥰We are hoping to meet with the nursing home manager. To be fair the nurses have done well, but they are saying they cannot administer sick day rules until the GP authorises ….and he is woolly and will not prescribe them as prn.
The last 2 times she has been dropped back too steeply to her baseline of 10mg she has had loose stools….they tell me I am obsessed 🙈🙈 but looking at patterns is how I successfully diagnosed her adrenal insufficiency.
In the past with bad GP I would change to another but u can’t here.
I am wanting to keep advocating for my mum and I definitely don’t want her to be suffering unnecessarily with adrenal issues…..but I also need to keep my own sanity and it seems now I have the hypochondriac label I am not sure how I can advocate well 🤷♀️🤷♀️
Thank goodness you say "we" are hoping to meet the manager - safety in numbers and you will have a witness who can take notes (minutes!). Make a list (agenda!) of the issues you want to raise and use it during the meeting, so you are focussed - this should help you to remain as calm as possible, which will show them you are right, which is what we all know you are. Can you arrange for the GP to be present too, or even a Practice Nurse or Pharmacist?
Please complain about / object to them saying you are a "hypochondriac" and "obsessed" - that is out of order and needs challenging. You care about your mum and so should they - they are getting paid £££££ to do just that!
thank you Rugger Im sorry to hear you had a battle yourself. My own health suffering is always a worry with these things. I provided them with sick day rules and tapering which is in her care plan but nurses say GP needs to sign it off which he hasn’t as yet. If there is no progress after meeting I shall have to ask for him to come to a meeting.
I’m quite anxious about being assertive as they could just kick her out if we become problematic 😢 But you are right I need to challenge being told I am obsessed…..if sick day rules aren’t clearly written up anyone with a history of adrenal crisis would be obsessed! The deputy manager told me mums shaking which occurred on tapering May not be steroid related but dehydration - well you should be equally concerned about that! (She’s not dehydrated as I make sure so!)
Feeling slightly better today but the whole thing is exhausting and v stressful- as I can tell you know full well!
I must admit this worries me sick you can not get through to these people, they know it all and know nothing. It was bad enough being in hospital recently for spinal surgery, they told me I had had my morning Prednisolone when I knew I hadn’t because I was having withdrawal symptoms, they came back and told me it had not been signed off, so gave me my Pred. So much for them telling me they could manage my meds better than me..
you’re right Whippetygirl I was told nothing about sick day rules on mum’s diagnosis of GCA. I constantly asked GP’s and then was given wrong info. It was only thanks to this site that I learned. In fact I would say that this site saved her life as when in adrenal crisis it was me who suggested paramedics try hydrocortisone injection.
Indeed the pituitary foundation have a form that they suggest those on steroids take to A&E with them if they are unwell which ask the doctors to sign that they are refusing to administer IV steroids when the patient or family has indicated it is needed - so many bad experiences recorded.
You would have thought a quick addendum to education on steroids to add yes this is normally what you do UNLESS…..
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