Care home care

[jrussell88]

An elderly relative is a T1 diabetic and will soon be going into a care home. Their diabetes is controlled by a basal dose plus rapid acting for carbohydrates (DAFNE) and corrections, administered by the family as they're no longer able to manage themselves. Since the consultant instigated this, there have been far fewer hypos and dosage has been adjusted to meals and appetite rather than the other way round. So we're all pleased with how this is working.

The local care homes rely on a diabetic nurse, who after some discussion with us has provided a stock protocol which says dose a flat 4iu rapid acting before breakfast, lunch and dinner; if BG at these three times is over 18mmol/L, add 1iu; if over 20mmol/L add 2iu.

This is obviously nothing like his care team intended, or what's been happening.

Has anybody else had any experience of similar situations, and how was it handled?

 

[ElenaP]

An elderly relative is a T1 diabetic and will soon be going into a care home. Their diabetes is controlled by a basal dose plus rapid acting for carbohydrates (DAFNE) and corrections, administered by the family as they're no longer able to manage themselves. Since the consultant instigated this, there have been far fewer hypos and dosage has been adjusted to meals and appetite rather than the other way round. So we're all pleased with how this is working.

The local care homes rely on a diabetic nurse, who after some discussion with us has provided a stock protocol which says dose a flat 4iu rapid acting before breakfast, lunch and dinner; if BG at these three times is over 18mmol/L, add 1iu; if over 20mmol/L add 2iu.

This is obviously nothing like his care team intended, or what's been happening.

Has anybody else had any experience of similar situations, and how was it handled?

I do not have experience of the situation. However, you mention a care home, and in my opinion you, as a client, need to set the criteria. As I understand it, a Nursing Home must have one qualified nurse on every shift, whereas a care home does not need to. How often does this nurse visit? The care home gets paid to look after your relative, and they need to give the same care that client/relative has at home. I would be inclined to say to the care home manager (hopefully when the diabetic nurse is present) that your relative needs to have the same pattern of insulin that he/she has at home. It will be do-able, if they want to do their best for your relative. After all, most of us Type 1 diabetics had to learn what to without any prior medical training. Some care homes are private, others are part of a chain, but all of them are expensive. Please try to speak with whoever is in charge. You could ask the Care Quality Commission what criteria do they use when inspecting care homes that have Type1 clients.

 

[Erica1968]

Ok. I’m extremely interested in this question both as a Type 1 pump user and as a CQC inspector of care homes. ElenaP is correct about care homes not needing a qualified nurse on duty. My experience is that so far in the geographical area I cover, there has not been anybody needing this type of diabetic care such as carb counting or flexible insulin dosages yet. Many rely on district nurses (community nursing service) to visit daily to administer insulin. However, I have been encouraging (for several years now), care home managers at each visit in my area to start thinking and planning for when the time comes that somebody with a pump is admitted. Carb counting should not be an issue as the cooks/chefs in the homes I’ve visited have demonstrated they could calculate this for care staff.

CQC expect staff to have had training in diabetic care and expect care plans to include details of hypo and hyper symptoms with appropriate action to take in each case. Many care homes operate a keyworking system, so I would recommend forming a good relationship with your relative’s named keyworker. I would definitely recommend meeting with the home manager and asking for the staff team to receive DAFNE training. Make sure you are involved in the care planning - pass on your experience and knowledge. Care staff know that families often know their relative and medical best. Be prepared for if the manager asks if you would be willing to attend a staff team meeting to give a mini training session. Or you may even just want to offer to do this if that appeals to you - a good care home would welcome this with open arms. Happy to answer any further queries around this.

 

[lovinglife]

My dad wasn’t T1 but was a T2 on insulin he also had Alzheimer’s and Louis Body Dementia, dad was very lucky that he was able to fund his own care so we could choose where he wanted to go, we chose a nursing home rather than a care home. They were fantastic with him. We met with them and set up a care plan and how and when his insulin should be administered.

Because of the Alzheimer’s and Dementia his care needs, especially his eating, changed a lot of times quite quickly, he lost his swallow so had to had soft food, then he wasn’t eating so it became more important that he ate something rather than what was best for his diabetes (dad had always low carbed and in the end it was suspected he was LADA but that’s another story) He started having puddings etc, the home was great in keeping on top off his insulin needs and his overall care. But you do need to be highly involved to make sure that the message is filtered down to the staff on the ground such as new starters and agency, the only time we had any problems was agency staff - not their fault as sometimes they were only there for a couple of days.

It’s extremely hard to let them do their job but you have to have a level of trust, it took me a while to “let go” but you have to in the end or you’ll drive yourself mad.

A little tip if you are self funding and they need nursing care, which they obviously do because of the insulin administration etc you can apply to be assessed for nursing care funding, if you get it it will knocked off your bill at source, if your not self funding then the home claims. It’s worth getting it if you can as it knocked about £700 a month of dads bill (you will need to check the amount as I can’t really remember how much it was exactly and there are different levels)

 

[jrussell88]

Thanks for all the replies, and the helpful advice.

The care homes we looked at are privately-run nursing homes, and are staffed with nurses who are on duty at all times. They seem like nice places and are expensive. The Care Inspectorate scores both at 4s and 5s on a range of measures - the quality of nursing care isn't separately assessed. Both have had complaints upheld in the last year, one apparently for not ordering medication in time; the other for 'medication issues'.

We've discussed medical needs extensively with the managers of both. One has a clear programme of training their nursing staff to deal with specific issues, such as a diabetes protocol. They do need written guidance from the hospital or Diabetic Nurse for any treatment. They checked with their kitchens; the first could say how much carbohydrate was in the food; the other couldn't or wouldn't. The first, which is part of a large group, already cares for 4 diabetics, and was initially sure that they could follow the DAFNE approach - but later said it was too labour-intensive and they didn't have the staff for it. They also won't check how much of a meal has been eaten. So neither home will calibrate doses to carbohydrate.

The Diabetic Nurse says that none of the care homes (there are many in the city) have the capacity to handle DAFNE and after discussion has proposed the fixed dosage regime I mentioned which the care homes are apparently using for others - although this is quite a change from the treatment implemented by the consultant. They told me that we were asking them to write a prescription, therefore it had to be fixed amounts. Also that 4 nurses are covering a population of over half-a-million so they can't accommodate any variation.

I suggested to the hospital team switching to a self-funded automated insulin dosing system as that would work with the District Nurse's simple protocol, but they wouldn't consider this at all, due to age.

I explained the problem to the hospital team; they supplied a note covering basal and carb ratio; I drafted a protocol for treatment - they don't have anything re DAFNE treatment - which the Consultant/hospital are reviewing.

However that won't address the apparent inability of even well-funded nursing homes to count carbs and dose accordingly. In time it may change as more diabetics reach old age. @Elena1968 Is there a shorter DAFNE course for medical professionals? as the patient-level one I attended lasted five days, and I don't think any nursing home will be happy losing a member of staff for that long.

Possibly the only answer is to keep looking for a nursing home which can do this, but they seem to be as rare as hen's teeth and time is running out.

 

[EllieM]

They also won't check how much of a meal has been eaten. So neither home will calibrate doses to carbohydrate.

I don't see how you can calculate doses if you don't know how much food they are eating. So you're pretty well stuck running high and doing correction doses. (Disclaimer, just an opinion, am not a doctor).

Are the fixed doses similar to the amounts of insulin they take on basal/bolus?

 

[jrussell88]

Are the fixed doses similar to the amounts of insulin they take on basal/bolus?

@EllieM Not really, sometimes higher doses, sometimes lower doses, although I expect it will end up running high most of the time as highs are only to be corrected if over 18mmol/L and only with one of the three daily mealtime doses.

Tbf the nurses will know how much food has been eaten if they take a look. My approach is that it's better to be roughly right than precisely wrong.

 

[lovinglife]

@jrussell88.

This is just a suggestion but I just thought I’d mention it as you say it’s going to be self funding my suggestion may not be suitable for your relative’s situation. But have you looked into having a 24/7 live in nurse carer in the home at all?

We looked into for dad but he got worse quickly but we decided it wouldn’t work because he needed 2 people for lifting etc.

Most people don’t look at this because they think it’s too expensive but we found it was slightly more than the care home.
There are stipulations such as they have to have their own bedroom with a lock and there has to be lockable room for drugs etc and it may be a job share as of course they have to have time off etc. and as I said you may be eligible for some nursing care grant, it depends how much nursing care they need. Or you could have a live in carer with district nurse visits for the insulin

It’s just another option that you may not have thought about

 

[urbanracer]

Ok. I’m extremely interested in this question both as a Type 1 pump user and as a CQC inspector of care homes. ElenaP is correct about care homes not needing a qualified nurse on duty. My experience is that so far in the geographical area I cover, there has not been anybody needing this type of diabetic care such as carb counting or flexible insulin dosages yet. Many rely on district nurses (community nursing service) to visit daily to administer insulin. However, I have been encouraging (for several years now), care home managers at each visit in my area to start thinking and planning for when the time comes that somebody with a pump is admitted. Carb counting should not be an issue as the cooks/chefs in the homes I’ve visited have demonstrated they could calculate this for care staff.

CQC expect staff to have had training in diabetic care and expect care plans to include details of hypo and hyper symptoms with appropriate action to take in each case. Many care homes operate a keyworking system, so I would recommend forming a good relationship with your relative’s named keyworker. I would definitely recommend meeting with the home manager and asking for the staff team to receive DAFNE training. Make sure you are involved in the care planning - pass on your experience and knowledge. Care staff know that families often know their relative and medical best. Be prepared for if the manager asks if you would be willing to attend a staff team meeting to give a mini training session. Or you may even just want to offer to do this if that appeals to you - a good care home would welcome this with open arms. Happy to answer any further queries around this.

My partner (Mrs Urb') is a nurse in a care home. They have been told that they are not allowed to give insulin injections, and I assume from your post that this is unlikely to be CQC guidance and is probably just a rule within the care home itself and/or an instruction from the local endocrine centre?
A diabetes nurse visits every day to give insulin injections and everyone who needs inulin gets a single daily shot, often administered through clothing reportedly.
As far as I am aware there is no attempt at carb counting for meals and I've been told of some pretty horrendous (high) blood glucose levels.
I am told that the visiting nurse(s) is remarkably uninterested in overall diabetes care, they just inject-and-go to the next home apparently.
I should add, that CQC has given this home an "outstanding" rating which it has held for a number of years.
I am quite fearful about the future as a T1 should I ever end up in one of these places.

 

[ElenaP]

I am quite fearful about the future as a T1 should I ever end up in one of these places.

Me, too.

 

[Jaylee]

Now oddly. My wife & I have been touching on this sort of subject. The whole “power of attorney” thing…
lol, if my wife is “it.” I’m ready… I can handle it. She’s with me…

If it is me? Whatever help her.. Because the average DSN…? In nearly 5 decades of T1 for me.. like @urbanracer , I’m concerned…

 

[Erica1968]

I hear all of you and totally agree as I also have concerns about my future as a T1. I am raising this at every opportunity with my employer. (CQC).
@urbanracer , I find what you say very concerning. Have you (or your partner) raised this with CQC about diabetic care generally and the visiting nurse service? Although the inspector can’t investigate individual complaints, this information would be a valuable contribution for them to maybe reinspect and review that rating. The CQC website has a ‘Share Your Experience’ page or you can phone on 03000 616161.