Hospitilisation and Type 1

[AniAniAniAni123]

Hello all,

I'm new here and hoping for some advice and input. My dad is 73 and has had T1 diabetes since his late 20s. He was recently diagnosed with dementia, and is partially blind, amongst other health issues and unfortunately is no longer able to self manage his diabetes. My mum manages it using libre 2 and the Mylife app (with ratios programmed in by the diabetic team). His HBA1C was 7.5 when checked a few weeks ago and the diabetic team were happy with his levels.

Dad has unfortunately been hospitalised 3 times in the past 12 months for non-,diabetes related issues. However, on all three occasions when in hospital there have been major problems wirh diabetes management. On the first instance his insulin was missed or delayed so often he got ketoacidosis for the first time since he was diagnosed in the 1970s.
The second time he almost become ketoacidotic 5 times before the diabetic nurses prescribed a sliding scale (as the hospital can't or refuse to use carb counting). The sliding scale was imperfect but he at least got adequate doses of insulin on time each day.
This current time the ward has thr sliding scale but are insisting on a dr prescribing each insulin dose due to their new e-prescribing system. This is causing delays as he doesn't get his insulin until hours after meals, meaning his glucose goes through the roof.
I feel like we would not know about any of this if hw wasn't wearing his libre 2 monitor.

I suppose my question is, is this common in hospitals? My dad can't be the only person going through this. If anyone has been through this and has any advice on how to communicate with the hospital to get these issues resolved I'd be incredibly grateful. I'm at my wits end with this.

 

[eggyg]

I’m sorry to read this, it’s terrible. I was told to contact the hospital diabetes team if I was ever admitted to hospital, they should then take over his diabetes care. I hope something is sorted ASAP.
Could you maybe call the DiabetesUK helpline listed on the top of the page. Hopefully they can point you in the right direction.

 

[Inka]

This is awful @AniAniAniAni123 I don’t know the protocol for older people with Type 1, but when I was in hospital I managed my own blood sugars as I don’t think the general nurses had a clue how to do it. I was also visited by a DSN to see how I was. They should be notified when someone with Type 1 is admitted. Perhaps one could go to the ward your dad’s on and give advice?

The sliding scale should be adjusted by staff, following their chart. It’s ridiculous to have each dose change waiting to be approved.

You might also want to give Diabetes U.K. a ring (number top of this page) as they should know your dad’s rights as an in-patient with Type 1.

 

[rebrascora]

Sadly, whilst incredibly worrying and shocking, it is not surprising. The ward nurses do not know enough to dose the insulin and to be honest I would not trust them to do so and the DSNs in many of the diabetes clinics are extremely stretched to be able to be there on the ward to dose patients before meals.

We all know that appointments with clinic staff are becoming further and further apart and postponed and we see people coming to this forum who are not receiving basic support or have to wait months for appointments when newly diagnosed. Some members here have reported quite dangerous incidents whilst on wards for other issues where they didn't have autonomy and nurses were following protocols for their diabetes management which were not recorded correctly. The system is sadly failing even people who are mostly well enough to look after their own diabetes management, let alone those people who are not. It is scary!

I think it is probably important for him to be on a sliding scale if he is admitted and for family to push for that so that he does at least have a regular insulin supply, even if his levels are running higher than ideal and make staff aware that it is a problem, when he is admitted, so they at least give him extra attention to try to prevent these incidents or very high levels. I can't imagine how worrying and frustrating it must be for you and your family, when he is in a place where they should be caring for him. I think there will also be repercussions from the Lucy Letby case where insulin will be more carefully administered and some DKA's may well be a consequence of tightened regulation of insulin dosing in hospital.

 

[stephenS50]

Welcome to the forum @AniAniAniAni123 and after reading your forum entry I'm truly shocked at what happened to your father.The nurses seriously didn't know how to administer his insulin properly and the fact he developed ketoacidosis in one hospital stay Is unthinkable...I pray that he gets better.

 

[Proud to be erratic]

Hwllo @AniAniAniAni123.

Like @eggyg I am so sorry to read this. I'm not surprised, I personally experienced problems in 2022 when I needed emergency surgery, was put on a sliding scale for the period of surgery and the written protocol was incorrect. It required me to have more insulin, when very low just as I was recovering from my total anaesthetic and the ward Nurse could not understand that this was fundamentally wrong. She was determined to follow the protocol, luckily I was determined to stay alive and stayed awake long enough to insist that the sliding scale was immediately disconnected.

What to do? Certainly try to insist that your Dad is seen by the in-house Diabetes team; but don't hold your breath. I asked and was not seen once during the 22 days I spent on a surgical ward. Certainly seek advice from the D UK helpline.

Carb counting is possible, even though Hospital food is notoriously unhealthy and invariably inappropriate for T2s who would often be looking to eat lower carb foods. I knew (from a different experience) that there would be a contract between any hospital and a catering supply organisation and that contract would provide detailed nutritional details about every single item of food being provided. Knowing this I cajoled the Ward and ultimately a senior Matron to find a copy of the spreadsheet showing all nutritional details. It took 24 hrs, but was found; the Ward received a copy as an update every month. It was filed under an inappropriate heading, no-one realised what it was, until I challenged the system to get a lot better at managing their diabetic patients diets. But no-one seemed able to do the actual carb counting, which for me was not a problem since I did it myself anyway. Obviously that is not a practical solution for your Dad. You or your Mum would need to be involved in facilitating this counting.

I can (reluctantly) understand the Hospital having controls with insulin, particularly with a patient with dementia. That control has potentially been worsened by the Letby baby murdering! But delayed prescribing of bolus or basal is blatantly unacceptable and needs progressively elevating, to the Hospital Trust Chief Executive if necessary. PALS might be a viable start point. Alas I have lost trust in PALS. When they were introduced to the medical system, c.30 yrs ago, they were totally independent and were promoted as the Patient's friend/voice. Today their funding comes from the Trusts, the Trusts blatantly no longer conduct any investigation into its practices when there is a complaint and leave PALS to arbitrate in the Trust's favour.

Another start point might be from speaking with the Matron responsible for your Dad's ward. Be polite and pleasant; have someone with you to witness the conversation; prepare some notes to make sure you cover all the points that concern you and take written notes of what replies you get at that meeting; don't allow yourself to get angry when the Matron starts from a position of "the Ward is doing it's very best", "you must be mistaken", etc. Just pleasantly and yet robustly insist your concern is fully investigated and politely insist you meet again to hear the Matron's findings - and don't let that 2nd meeting be pushed to a later date. Your bottom line should be that: your Dad's life is being seriously put at risk by the current neglect of his bolus insulin; should a DKA recur you will be forced to find a legal point that holds the Hospital to account. You are trying to gently, yet clearly, threaten the Hospital to wake up to their duty of care. None of this is easy and trying to be courteous when deep inside your emotions are stretched to breaking point makes such conversations extremely stressful.

Sorry if this all sounds confrontational - but I experienced this with my care in 2022 and 25+ years ago with my own Dad's care. The Hospital for my Dad did ultimately agree that his treatment was extremely poor and slightly begrudgingly apologise (with various excuses about staff shortages etc!).

Good luck.

 

[lyn]

So sorry to hear this, unfortunately all I can say is as above. I was in hospital for 6 weeks in 2023, as a type 1 I asked re carbs in meals. No one could help! All I got was go onto sliding scale!
I refused this and tried to manage as best I could. The BMA have said that sliding scale is not suitable treatment for most diabetics and actually very few hospital staff know anything about it. And the meals are terribly high carb.
Good luck but don't give up.