Please help - vulnerable adult and social services, GP failings

[soworriedaboutthis]

Hi, posting for traffic.

My dad is a type 1 diabetic and has mobility issues that came on quite suddenly last year. He was self-neglecting, refusing all help from family, basically hiding himself away at home. He's very reclusive.

We took him to the GP regarding his lack of mobility and issues at home (he's not managing basic self care) and they didn't really do much. Suggested he wait for a neurology appointment that he'd already been waiting months for but did order some blood tests to be done by the district nurse at home.

A few days later the district nurse arrived at his home to find him unresponsive on the sofa. Firemen had to be called to force entry to the home and an ambulance. He was having a serious hypo and was taken to hospital.

At this point we contacted social services to raise a safeguarding concern and the paramedics said they would also raise a safeguarding concern. We discovered he wasn't buying food, eating properly, washing, showering. Totally self-neglecting. Social services said that because he was in hospital, his needs were being met so they could log it but not do anything at that time.

Throughout his hospital stay he took his insulin incorrectly (though insisted he was taking it right) and had numerous hypos. He had various scans and tests to uncover the reason for his sudden mobility problems and nothing serious was found. He was diagnosed with peripheral neuropathy but the drs said they didn't understand why he couldn't walk as he should be able to.

He was discharged home and given a care package to help him. He refused them entry to his house once he went home and that was the end of it. He's deemed as having capacity to make his own decisions and so was entitled to refuse care.

In December he had another serious hypo, unresponsive in bed. This time he was found by a district nurse who had come to review how he was getting on with his diabetes. Again, the firemen had to force entry to his home and an ambulance was called. Again he went to hospital. He continued to mismanage his insulin and was difficult with staff.

This time he was discharged in January this year with a reablement care package meaning that he would have a lunch and dinner time carer to assist with meals. He allowed them in for the most part although wouldn't have food in for them to cook. The care company don't relay information to us reliably so we don't always know what's going on.

On Saturday my dad turned his lunch time carer away - he can't explain why and thinks he was already in the early stages of a hypo. We weren't informed by the care company. The dinner time carer found him unresponsive in bed later that day and called an ambulance (she had access to the house because he now has a key safe installed) This time was the worst he's been. His blood sugar was 1.4 which is extremely low. Previous times it was around 2.

He refused to go to hospital against paramedics advice and then was left at home. I called the emergency social services on Sunday and was told I needed to call back on Monday. On Monday I called Social services again and was told I needed to contact his care worker that had been assigned after his hospital stay - she's in charge of his reablement package. I wasn't able to get hold of her until Wednesday despite numerous calls and messages but she said she's looking into it. Whatever that means.

GP was also contacted on Monday morning in an urgent request as we wanted to request that district nurses visit him every day to help him check his blood sugar, help him administer his insulin and check that he's eaten as the carers aren't able to do any medical care. GP said she would visit him the next day to speak to him about a way to move forward.

She never came back to us to update us. We have no idea what was discussed at that appointment as my dad is extremely difficult to speak to and he frequently lies/gets confused.

Contacted the GP surgery on Wednesday for an update - no response.

Today, I messaged my dad to check in and he informed me that he'd had another serious hypo, ambulance called etc. Found out from the care company after calling them that he'd been found by his lunch time carer unresponsive in bed again. Extremely low blood sugar. The care company didn't inform us until we called them.

We've contacted the GP again to explain that something isn't right with his health, he's complaining that he's hypoing in his sleep because he's too tired to wake up and eat and she's unavailable but the receptionist relayed a message to us that there's nothing she can do yet because she's waiting on advice from the diabetic team.

The care worker in charge is kicking off with the care agency about their lack of communication with us but other than that, she's not done anything. She said he still hasn't been allocated an actual social worker - I'm not sure what the difference is between her and a social worker.

I'm at an absolute loss as to where to go from here. The GP has described him as a ticking time bomb and it's only a matter of time before he has his next serious hypo but nothing really seems to be happening. No one is standing up and taking charge of the situation, it's just me and my sister desperately trying to call around everyone to find out what we can do.

If anyone has any experience with social services or is a GP and can advise what we can do it would be really appreciated. This latest hypo is only 5 days after his last one and I'm so worried about him. These aren't minor episodes, each time he is completely unresponsive, very close to death with no way of helping himself or communicating to someone that he's unwell.

My sister and I both have a very strained relationship with him and he's awful to us both but I just can't leave him to deal with this alone. He's so reluctant for help and we don't know if he's abusing his insulin or not eating on purpose to make himself unwell or if he's genuinely struggling to manage his diabetes alone. It's all such a mess.

Please if anyone can help in any way, it would mean a lot. Where do we go from here?

@ButtockUp

I'm so very sorry that your father and your family are having to endure this nightmare scenario.

We endured this with mum. No one would accept responsibility and no one would do anything. Her GP was in utter despair.

I won't go into the ( very grisly and frightful ) details but it seemed like the system was utterly against us, despite the medical advice.

The elderly care system, in my opinion , is utterly broken.

I'm so sorry you had to go through the same. It's my first experience with social services and knowing who the right people are to speak to and understanding the processes has been challenging to say the least.

@Justmebeingme245

Also, another idea might be to get him a pump - therefore his insulin background doses are pre-programmed in and he just needs to put the carbs in for his meals for his bolus. There is also a Medtronic pump which is linked to a cgm and adjusts insulin automatically when it detects possible hypo/hyper. He obviously needs extra care but this could be a way to help with the danger of hypos.

Yes he's asked for a pump and they're reviewing it. Forgive me if I'm mistaken but I think they need to be fitted surgically and they said with his ongoing health issues and self-neglect he might not be an ideal candidate but we'll see. I also worry he's not capable of inputting information into the pump correctly so it's not entirely fail safe but would possibly be better than where we're at currently.

I'm glad the diabetic review was so helpful.

From what you are saying I would doubt I would say he has capacity to manage his diabetes but all assessments have some subjectivity and I am a mean assessor - often I find assessments go 'well they say they don't want it so they understand'

From the information you have given:

1. He has frequent hypos and his capacity is impaired when he hypos
2. His capacity is also impaired when he is high
3. so he at the very least has fluctuating capacity - likely without insight that at some points of the day he can't make decisions
4. However you also have the memory assessment. Although this is in it's early stages, poorly controlled diabetes over a long period of time affects the brain. So it is entirely possible that his self-neglect, sudden onset of being completely unable to manage his diabetes and so on stems from him now having lost just enough brain power to keep him on the straight and narrow.

I hope this helps and the GP plus extra doctor really do a deep assessment of his understanding and how he is making decisions.

No they don’t need to be fitted surgically. My daughter has omnipod pump and we do it all at home. Basically, you fill it up with insulin, place it on his body and the pdm (hand held device that has all his data in) will insert it. It will need changing every few days omnipod is 3 days but it depends on which pump you go with I think.
I use both Dexcom and omnipod with my daughter because she is too young to manage her diabetes herself and I can be in control for her.

Also, we got all this on the nhs, so if the Dexcom is what you think is best, certainly push for it.

Sorry I meant Dexcom and pump is what you think is best then certainly push for them!

Thanks @AnnaMagnani I do worry about the implications of all of these hypos with regards to his brain function. His brain scans were clear in November when neurology tested him in hospital to see if he'd had a stroke or a similar brain event and they only showed minor deterioration expected for his age but he's gone massively downhill since then in terms of his behaviour, his mobility and his understanding/reasoning.

One thing I forgot to mention earlier was that I understand where people are coming from when they talk about his reluctance to co operate with carers and professionals and them almost feeling like 'why should we bother?' but in my opinion I do really feel that he believes he's fine and that he can't grasp that what he's doing is making his health worse IYSWIM? He understands a bad hypo can kill him and he doesn't want to die but his attitude is 'I'm doing everything that I should be doing and doing everything right!' (Which he isn't) and basically it's the drs and professionals job to figure out why the hypos keep happening. When they tell him it's him mismanaging it, he vehemently denies it and genuinely believes they're wrong. Even when confronted with evidence of his errors, he refuses to believe it and gets angry/shuts down. If he accepted what the professionals are saying but still refused then I could almost say, well it's his choice.

One thing I forgot to mention earlier was that I understand where people are coming from when they talk about his reluctance to co operate with carers and professionals and them almost feeling like 'why should we bother?' but in my opinion I do really feel that he believes he's fine and that he can't grasp that what he's doing is making his health worse IYSWIM? He understands a bad hypo can kill him and he doesn't want to die but his attitude is 'I'm doing everything that I should be doing and doing everything right!' (Which he isn't) and basically it's the drs and professionals job to figure out why the hypos keep happening. When they tell him it's him mismanaging it, he vehemently denies it and genuinely believes they're wrong. Even when confronted with evidence of his errors, he refuses to believe it and gets angry/shuts down. If he accepted what the professionals are saying but still refused then I could almost say, well it's his choice

This is exactly what you need to say to the social worker when they are allocated.

I would also add that you feel that although at times he appears able to make choices about his health needs you don't believe he then has the functional capacity to see this through to its conclusion. E.i he says he understands about his carbs etc, and believes he is doing it but the reality is, he isn't.

Given that there are doubts over his capacity in some situations the local authority will have to be very certain that they don't have a duty under section 11 of the Care Act to keep engaging with him or assess him even if he refuses an assessment or to pay for care etc.

Sometimes these things aren't quick wins

@soworriedaboutthis

What you describe is textbook lack of capacity - it is described to him that he can't do something but he can't take on the new information and just believes he can. You can't just put it down to him being pigheaded as previously he wasn't like this.

Capacity testing requires several steps. The first is you have to have 'a disorder of brain or mind'. Now clearly when his brain is affected by his diabetes he does have this, but previously when his sugars were OK, he didn't. I suspect the key difference now is the memory test, if his memory is affected then he does have 'a disorder of brain or mind' all the time.

There are then 4 ways you can lack capacity to make a decision - if you miss out on any one of them then you don't have capacity.

1. Understand the information relevant to the decision
2. Retain the information
3. Weigh it up
4. Communicate your decision

You are totally allowed to make bad decisions or decisions that medics or your relatives disagree with as long as all these 4 can be demonstrated.

What you are describing is either not being able to take on new info, or weighing it up, or a bit of both - 'it couldn't possibly be me so it must be you' which is typical of a memory problem as he won't remember that he hasn't done it right so it must be someone else's fault.

The GP can do a capacity assessment. Is your dad under a specialist diabetes team? If not, get the GP to refer to them.
He may have had it a long time but people get into habits or may that can be altered through re education.
Insulin doses -have they been reduced at all? He could be taking the same doses he has been for years but things like a change in appetite and weight loss can affect a person.
The district nurses can go in to assess and support but like you say, if you dad has capacity he can refuse so the GP should be able to do this.

[quote AnnaMagnani]@soworriedaboutthis

What you describe is textbook lack of capacity - it is described to him that he can't do something but he can't take on the new information and just believes he can. You can't just put it down to him being pigheaded as previously he wasn't like this.

Capacity testing requires several steps. The first is you have to have 'a disorder of brain or mind'. Now clearly when his brain is affected by his diabetes he does have this, but previously when his sugars were OK, he didn't. I suspect the key difference now is the memory test, if his memory is affected then he does have 'a disorder of brain or mind' all the time.

There are then 4 ways you can lack capacity to make a decision - if you miss out on any one of them then you don't have capacity.

1. Understand the information relevant to the decision
2. Retain the information
3. Weigh it up
4. Communicate your decision

You are totally allowed to make bad decisions or decisions that medics or your relatives disagree with as long as all these 4 can be demonstrated.

What you are describing is either not being able to take on new info, or weighing it up, or a bit of both - 'it couldn't possibly be me so it must be you' which is typical of a memory problem as he won't remember that he hasn't done it right so it must be someone else's fault.[/quote]
This is where I'm at. The outcome of his diabetic review was that he's in a hypoglycaemic state frequently throughout the day so his capacity is surely not there because of this - how can he be making informed choices and decisions when he's impaired due to low blood sugar.

If he's declared of not having capacity because of this, is it possible to gain it back again if he gets himself into a better routine with his diabetes and it's managed for him? Say he has a period of time where his diabetes is managed for him and he drastically improves - would he be deemed as having capacity again and gain back some independence? Ideally this would be the best case scenario but I don't know how difficult it is to reverse a capacity decision.

Of course, if he's discovered to have memory problems or a brain injury from his numerous hypos this is different.

@bakebeans

The GP can do a capacity assessment. Is your dad under a specialist diabetes team? If not, get the GP to refer to them. He may have had it a long time but people get into habits or may that can be altered through re education. Insulin doses -have they been reduced at all? He could be taking the same doses he has been for years but things like a change in appetite and weight loss can affect a person. The district nurses can go in to assess and support but like you say, if you dad has capacity he can refuse so the GP should be able to do this.

Thanks. I think he's under a diabetic team. He has just had a diabetic review with the team and he has annual appointments and check ups. He's been visited by diabetic nurses once he was discharged from hospital but I don't know if that was just part of the hospitals discharge process.

At his diabetic review the other day he was told he was taking too much insulin and they instructed him to take less. He managed one day, and not even a full day before he said the nurses were wrong and that the amount of insulin isn't enough so he's going to go back to taking what he usually takes. It's like banging my head against a brick wall.

He admitted he takes 'what he's always taken' with regards to his insulin and doesn't adjust doses for lower carb meals (although he used to, I'm almost certain) the problem is he's gone from a physically demanding job, on his feet all day, and regularly walking long distances to being housebound and unable to walk unsupported. He cruises around furniture when home alone (I don't know the correct term, sorry) Of course his circumstances have changed and his insulin should be adjusted accordingly but he can't seem to grasp this concept. He's stuck in a loop of 'well this is how I've always down it' and anyone that challenges him is bad at their job, uneducated, doesn't know what they're talking about, the list goes on.

OP I can't quote you, but regarding capacity decisions, yes he could be reassessed as having capacity in future following decision of lack of capacity. The assessments are decision specific not all encompassing - so he would be assessed around his capacity to decide, for example, whether he can consent to a care package, or to medical treatment. We look at factors such as whether the person's capacity is fluctuating, or may be regained in future. If he is deemed not to have capacity to consent to treatment now, isn't treated, then improves, he or you can request that this is assessed again. It's a very fluid process.

If you think it would be helpful I can send you a blank copy of the form I use to document capacity decisions - you can DM me your email address. It may help you understand the process and what is considered.

Sorry, IS treated

Indeed @soworriedaboutthis you are spot on. A capacity assessment relates to the decision you are asking about and the time it is made - if circumstances change and he gets better then his capacity has returned.

If basically he is walking about all day in a chronic hypo, action is taken to sort this out and his brain is better then all to the good.