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?

@cptartapp you can't "get LPof A" for anyone. Someone can choose to GIVE LPofA. It's an important distinction - certificators should spot relatives who are being pressured.

I think you need to attack this one problem at a time. The main issue is obviously his diabetic control. From his own admission he cannot see clearly to administer it and he does not want to go into hospital again. Can you persuade him that having the District Nurses come in daily to administer his medication will stop him needing to keep going into hospital. At least you would then know he had somebody coming into him twice daily.
He will be deemed to have capacity for the decision to do his own insulin based on his ability to verbalize what will be the consequences to him of not having the correct amount of insulin, which it sounds like he would be able to say, but the gentle persuasion of allowing help with this reducing his need for hospital admissions may be enough to get him to agree to this. Then lean on the GP to refer into DN service based on his inability to see to give himself the correct doses. I've had patients who have this service based on poor vision.

@Yellowspottysocks

As stated by *@Countytee* capacity is decision and time specific. I’d be very wary of anyone bandying round that he has capacity and ask them capacity for what. Family members with regular input should have their views sought for a mca.

Sorry if I have missed this but has he had a Care act 2014 assessment? If not I’d be asking for one and as a family member involved in his life you should also be consulted for this unless he objected. If he did he should have been referred for an advocate to act in his best interests.

I don't know if he's had a care act assessment, I will make a note to ask. Who would have this information? The key worker or the GP? The problem has been the lack of communication and I don't think anyone has any real idea of what's going on/what the plan is moving forward. If they do, the certainly haven't communicated it with us.

I only received details of his key worker on Monday and she wasn't contactable until Wednesday. It's really difficult to get through to anyone on the phones although I do now have his key workers email address.

@MayThePawsBeWithYou

clearly he is unable to safely monitor his glucose levels, administer his own insulin in syringes or eat properly. I am surprised if this wasn't picked up on in hospital by his diabetic team and would expect him to have a full diabetic review, insulin review to see if it needs altering and given pens not syringes. I would also expect a d.n to administer the insulin as he obviously does not understand it at all and has been hospitalised many many times with severe hypos.

The GP did mention on Monday when we called her about his recent hypo that he's overdue a diabetic review. My dad would definitely not arrange any appointments himself and family weren't aware he was overdue so we have now arranged for this to take place as soon as possible.

We contacted the diabetic team today and they said they'd probably just reduce his insulin prescription so he can't overmedicate but I don't think this is the answer as he'd still take the same amount, he'd just run out faster. I'm hoping it was just a throwaway comment though and it can be discussed properly at his review. My sister will go with him to this and we'll raise the suggestion of district nurses with them. I just know he's likely to refuse and say he doesn't need any help with his insulin. So frustrating. When he's given the choice, he turns everything down and acts like he's fine but say if we text him to say 'the district nurse is coming today to do a review' he'd typically co operate. It's just getting him to agree to having them come multiple times a day, every day. I think a Dr or someone similar could possibly persuade him though but it would need to come from them and not us. Here's hoping.

Re: capacity - legally, unless he has a diagnosed "disorder of the mind or brain" there are no grounds to even proceed with a capacity assessment. That is why everyone is saying he has capacity - legally they must assume he does.

Care workers can only prompt medication in pre-doses blister packs, they can't get involved with insulin or blood glucose monitoring as they aren't medically trained to interpret the outcome. It would need to be a district nurse - this is the angle I'd be pushing with the GP if this was my case.

with capacity though the there is a shift in understanding away from just accepting what someone says to really testing that what they say matches up with their functional capacity to carry out a task.

Its all well and good someone being able to sit and tell you that they need to take their insulin and them understanding that to the reality of functionally being able to remember to do it when it needs to be done and executing it properly.

OP has enough evidence to suggest that despite what her dad says he isn't managing it, when previously he did.

@soworriedaboutthis I’ve sent you a pm

Memory test can show dementia or Altzheimers but not capacity, you can also have dementia and capacity until you just don't.

You really could do with LPAs in place and dad may be difficult about this as whilst he has some capacity he needs to sign them - but you need to be clear what he is signing and that may put him off. The health one is often the easiest as that allows you to have a "What the medics say" and also as he has been in and out of consciousness when poorly its esy to get across that if he tells you what he wants then you can then officially communicate with the medics etc.

If you don't have an LPA it can be granted by court but usually is to a social worker rather than family member.

In terms of a whole care package he needs a home assessment and it is social services that should be doing this - either to leave hospital and come home or once home the emergency team should be doing this and providing any care before the none emergency ones take over. In trms of liasing between GPs, District Nurses, Hospital and other medics the District Nurses are actually the ones that do this but will need to be refered from GP to DN to put him in this sort of loop.

What might be worth considering for the diabetes is a pump so he is not in charge of the insulin the pump is based on readings it does via the arm unit. Although its often difficult to get these prescribed depending on your postcode basically

btw you don't want him shown without capacity till LPAs in place - life can become even more difficult then in terms of knowing whats going on and what happens to Dad e.g.they can independently decide he needs to go i a care home and thats that you gt no choice or part of the decision nor does Dad

I understand the frustration, but declaring someone lacks capacity is not straightforward, nor is it done lightly. You are potentially removing a person’s liberty and right to make decisions. And as others have said this can be tricky to be absolute/definitive about and can be variable. Patients can and do make bad decisions for themselves.

Even if he was declared to lack capacity, it’s not as simple as you getting to decide what happens. Without power of attorney you have no legal powers (though imagine you would be consulted)- it will have to go to guardianship order via the court of protection (not quick, nor cheap). Whether you or social work would be appointed guardian(s) is totally situation dependent.

However, in the short-term if he lacks capacity and cannot be persuaded to care for himself/ allow carers in/ move to a suitable residential placement voluntarily, or to be admitted to hospital (if necessary), I would point out that the GP (or nurse or social worker) have limited abilities to actually enforce change. In fact, it could be that the only way anyone could force him to do something/go somewhere if he refuses/resists would be to detain him under the mental health act- it’s not a straightforward “right, he lacks capacity- take him to x, force him into a car/ambulance” or “y will come do z, whether he likes it or not”. You can take the decision against the persons wishes once incapacity is declared, but physically enforcing things is less straightforward and would require legal process to be started.

With regards to the GP- they have referred to diabetic team, which seems entirely reasonable. If there is to be a change of type of insulin, for example, then it’s not the GP’s role to do that. They can advise a reduction in dose (or increase)/slight tweaks but if he decides to ignore it (or can’t remember the changes), they can’t really solve that. If they feel capacity is not clear cut it is absolutely right that they seek a second opinion from psychiatry/ memory clinic.

I think you also need to clarify whether the district nurses in your dad’s area will accept a referral for giving insulin every day/monitoring blood sugars- especially if he is on a basal-bolus regime (which is usually three times a day). In our area this would not be offered as a long- term solution (and certainly not for insulin given three times daily)- the nurses don’t have the capacity to visit three times a day (at meal-times) long-term. This might be different in other areas and maybe some district nurse teams do offer this service. GP’s refer to district nurses but cannot instruct them to do anything. Carers can prompt him to check blood sugars but cannot do them for him, nor can they administer medication for him.

If you think there is a visual problem you need to take him to an optician, if you can, or arrange an optician to do a home assessment if he can’t leave the house. GP’s are not best places to do full eye tests.

It’s an invidious position to be in- you want the best for your Dad but he either can’t or won’t help himself. I hope it gets easier for you. I’m not trying to be negative but there is no point banging your head of a brick wall trying to get people to do things they can’t do. In my experience asking for something that can be delivered gets further than demanding something that can’t be done.

I am a community carer , just in regards to the care that has so far tried or has been in .Has it been the same carers our a multitude of different ones .Having carers come into your home is a huge thing and for a lot of people it is admitting that they need help and that can be really hard to take so you get carers turned away .Ideally if it is not already happening it needs to be a small set group that can try build up a working trust with your dad .I have seen it happen sometimes people are just scared to admit they need help it is a loss of indepence or sometimes it is just pure self neglect but even with capacity it will hit a point it willl be taken out of his hands because it will become worse than it already is.

Reading this with interest and some experience as a family member. OP, do you know there is a disc your Dad can wear on his arm called a Freestyle Libre? All Type 1 diabetics are eligible for them on prescription, perhaps needing one hypo now & then - clearly no problem evidencing that. I'm still learning but there are ways of getting a device privately that can call you when blood sugar is too low. Have you spoken to the Helpline at Diabetes UK? They can take cases up too.

I wouldn't put great faith in the key/care worker. They are just a lead within a business. The business is contracted to Social Care and there will have been a SW involved at some point to allocate this.

There is a huge issue with health v social care and diabetes. District Nurses are often suggested from all sides but this is not a real solution for staying at home long term. The GP surgery can ask them to check in the very short-term - glucose level and insulin injections but only as it is a crisis. I'm not to familiar with capacity arguments but wonder whether the fact he can't manage changes/adaptations to his diabetes - understandably after managing himself for so long and now being in crisis - then what actual capacity does he have? Capacity to do an injection that could kill him is no capacity at all.

I'll keep watching this post and will add anything I know. If you ring the council's main number and ask for Adult Social Care, they should be able to tell you who his SW is.

Sorry, one more thing. Our GP Practice Manager has been way more helpful than the actual GP as they know what duties of care & responsibilities the Practice holds.

There is a huge issue with health v social care and diabetes

There's a huge issue with health Vs social care full stop. Both have stretched budgets, or claim to anyway, with all the waste I see in some departments I'm not convinced. But they'll both say it is the other one's job to sort xyz. They'll essentially lie to families and patients saying there's nothing they can do, or you don't have a choice about something, anything to get you to go away and be one less job on their list.

I have no good advice but have been through similar with a family member who was self neglecting, very unwell and unable to look after them, with very patchy care. Just wanted to say I know how hard this is to deal with and it sounds like he is lucky to have you looking out for him.

I don't know if he's had a care act assessment, I will make a note to ask. Who would have this information?

Social services.

It's a yes or no question. Has he had a care act assessment? If no, he needs one.

If yes, does he have a care plan? If not, why is that?

If yes, has he been given a copy of his care plan? If no, please send him a copy.

Ignore any bullshit.

this is a social problem. You and your sister need to spend time with him, possibly 24-7, to help him, and try and persuade him to either take better care of himself, or go into some sort of care facility.

OP if you and sister did spend 24/7 with him SS would say he doesn't need residential care because he has 24/7 support already. Just so you know.

Opticians for a eye test for starters.
Is he drinking alcohol in any/greater quantities than previously?

Thd reason you don't get a specific date your dad's capacity was tested, is because it doesn't work like that. Capacity is fluid.

To check if someone had capacity to make a decision you need go find out if they can

• understand the information

• retain the information
• use the information to make a decision
• understand the impact of that decision.

If he may have capacity to pick what he wants for tea, but not if he wants to live in a care home. It's assessed before each decision. It can fluctuate based on time and day.

If he has capacity then safeguarding can't do anything. And neither can he be forced to let people access his property or go to a care home

Thewaters I know that, I've just gone through the process. I used the word 'get' loosely. Point still stands.

Is he managing his own personal care like washing and dressing himself?
Can he get himself a drink and something to eat?
Can he do his laundry?
Has he had falls? (Other than collapsing due to the diabetes)

Just wondering if he would be eligible under the care act. As he needs to have needs in two areas and managing medication is not one of them. But absolutely pursue the care act assessment, I’m just saying that issues around his insulin are not an ‘eligible social care need’ if you see what I mean, although he may have others that do mean overall he is eligible.

@WildPoinsettia

this is a social problem. You and your sister need to spend time with him, possibly 24-7, to help him, and try and persuade him to either take better care of himself, or go into some sort of care facility.

OP if you and sister did spend 24/7 with him SS would say he doesn't need residential care because he has 24/7 support already. Just so you know.

We wouldn’t 🤦‍♀️- well I wouldn’t anyway. Of course families step in and care for loved ones especially in a crisis but they are not obliged to do so. Underlying eligibility would be the same and a family carer should always be asked if they are willing and able to continue doing what they’re doing (and have a carers assessment)

*not obliged to continue I mean

@Straysocks

Reading this with interest and some experience as a family member. OP, do you know there is a disc your Dad can wear on his arm called a Freestyle Libre? All Type 1 diabetics are eligible for them on prescription, perhaps needing one hypo now & then - clearly no problem evidencing that. I'm still learning but there are ways of getting a device privately that can call you when blood sugar is too low. Have you spoken to the Helpline at Diabetes UK? They can take cases up too.

I wouldn't put great faith in the key/care worker. They are just a lead within a business. The business is contracted to Social Care and there will have been a SW involved at some point to allocate this.

There is a huge issue with health v social care and diabetes. District Nurses are often suggested from all sides but this is not a real solution for staying at home long term. The GP surgery can ask them to check in the very short-term - glucose level and insulin injections but only as it is a crisis. I'm not to familiar with capacity arguments but wonder whether the fact he can't manage changes/adaptations to his diabetes - understandably after managing himself for so long and now being in crisis - then what actual capacity does he have? Capacity to do an injection that could kill him is no capacity at all.

I'll keep watching this post and will add anything I know. If you ring the council's main number and ask for Adult Social Care, they should be able to tell you who his SW is.

Hi he does have a libre alarm fitted once he was discharged from hospital but he has still had 2 serious hypos since then.

The first time was on Saturday when he said he just hadn't charged it so it didn't go off. It then expired on Monday but he didn't tell us until the evening until he had been without it all day and had no means of checking his blood sugar all day. He'd lost his old glucose monitor.

The GP managed to get him an urgent prescription for a new monitor so he was given one that evening.

His hypo yesterday, I don't know what happened. He should have had his libre alarm on but I don't know if he'd let the battery run out again or ignored it.

The GP has said if he doesn't use it properly they will just take it off him as they're too expensive to be given out and not used properly - I do fully see where she's coming from on this point.

I don't know if this monitor is able to notify family of low blood sugar so I'm going to look into that today. His diabetic review has been moved forward to today and my sister will accompany him to that so I will ask about something that can notify us.

Thank you

@WildPoinsettia

I don't know if he's had a care act assessment, I will make a note to ask. Who would have this information?

Social services.

It's a yes or no question. Has he had a care act assessment? If no, he needs one.

If yes, does he have a care plan? If not, why is that?

If yes, has he been given a copy of his care plan? If no, please send him a copy.

Ignore any bullshit.

This is very helpful, thank you. I have written this down to take up with social services this morning. Will call as soon as they open.