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?

I don’t have time to type much now but my thoughts are what happened in November? Has he had a brain scan?

BIL has recently had a very serious hypo and has suffered a brain injury which is affecting his memory and it’s entirely possible that these recurring hypos are injuring his brain or that an event such as a stroke started his downwards spiral.

He doesn’t have capacity to care for himself and I would be pushing very hard for long term residential care. I don’t think you mentioned his age but regardless I don’t see any alternative other than this scenario repeating over and over with ever worsening deterioration in his health.

So sorry you are going through this. Your GP sounds good, ask how you can get the correct assessment made and intervention to stop this nightmare.

Did the GP ever get the district nurses to go in daily and do insulin, monitor blood sugars?
There are people that will accept DNs coming in but not carers.

Wrt Safeguarding - self neglect tends to not be dealt with as safeguarding in the first instance, but rather down the assessment route which he is already having. However if it’s persistent you could specifically ask adult social services to carry out a Section 42 safeguarding enquiry. Under the care act self neglect doesn’t have to be treated as safeguarding but it can be.

You’re holding out hope for allocation to a social worker (of which I am one) but they/we are not miracle workers.

I would carry out a formal capacity assessment (or review one that’s already been done) and regardless of the outcome would arrange an MDT with the GP, district nurse, reablement manager, diabetes nurse if they’re involved, and maybe you (or may speak to you separately) and formulate a risk assessment. Outline all the risks, the likelihood and severity of potential harm, and then what can be put in place to reduce the risk.

Eg. He may not accept help from carers but might left DNs in.
And what course of action carers should take if he refuses them entry and hasn’t had his blood sugar checked that day, for example.

Capacity is decision spefic.
Having capacity about one area of your life does not always mean that you have it in others.
The term capacity ,within the Mental Capacity act needs to be looked at in terms of his hypos and dexisions around them.
When he is asked about the chouices he makes is he aware of the risks.
? I worked in this area. If it was me Id be asking for a multi disciplinary meeting to.address both capacity in terms of his medical.condition as well as risk management.
I worked a lot with people ( in hoslital to prevent unsafe discharges) and often its about resistance to care and skill in the managememt of that, often over time.

Do you think he understands he might die if he doesn’t manage his diabetes/accept help from the carers?

Sorry to ask but has he given up? Is there any element of depression and not caring anymore?

@MatildaTheCat

I don’t have time to type much now but my thoughts are what happened in November? Has he had a brain scan?

BIL has recently had a very serious hypo and has suffered a brain injury which is affecting his memory and it’s entirely possible that these recurring hypos are injuring his brain or that an event such as a stroke started his downwards spiral.

He doesn’t have capacity to care for himself and I would be pushing very hard for long term residential care. I don’t think you mentioned his age but regardless I don’t see any alternative other than this scenario repeating over and over with ever worsening deterioration in his health.

So sorry you are going through this. Your GP sounds good, ask how you can get the correct assessment made and intervention to stop this nightmare.

At the start of his symptoms in August he went to the GP and they thought he'd had a small stroke or something of that kind. They suggested he went to A&E. He did and was there for several hours so left and went home. Not what we wanted but he wouldn't stay and we couldn't be with him due to covid.

GP said he would be referred to neurology and so we waited for an appointment.

He then was admitted to hospital early November and we pushed the neurology side whilst he was in so he had various MRI tests, CT scans, nerve tests. All came back in the normal range after from some minor nerve deterioration which is common in diabetic patients (or so I'm told)

They said his brain scans are fine, no signs of stroke or anything but that was in November and he's had 3 serious hypos requiring an ambulance since then and countless hypos on a smaller scale whilst in the hospital so he could have had some subsequent damage to his brain. He'd need to be tested again but I don't know if they would do shortly after his last tests?

Sorry to hear about your BIL.

@User2638483

Did the GP ever get the district nurses to go in daily and do insulin, monitor blood sugars? There are people that will accept DNs coming in but not carers.

Wrt Safeguarding - self neglect tends to not be dealt with as safeguarding in the first instance, but rather down the assessment route which he is already having. However if it’s persistent you could specifically ask adult social services to carry out a Section 42 safeguarding enquiry. Under the care act self neglect doesn’t have to be treated as safeguarding but it can be.

You’re holding out hope for allocation to a social worker (of which I am one) but they/we are not miracle workers.

I would carry out a formal capacity assessment (or review one that’s already been done) and regardless of the outcome would arrange an MDT with the GP, district nurse, reablement manager, diabetes nurse if they’re involved, and maybe you (or may speak to you separately) and formulate a risk assessment. Outline all the risks, the likelihood and severity of potential harm, and then what can be put in place to reduce the risk.

Eg. He may not accept help from carers but might left DNs in.
And what course of action carers should take if he refuses them entry and hasn’t had his blood sugar checked that day, for example.

Thanks for your message, appreciate the advice.

No district nurses haven’t been ordered by the GP. We have asked for this but she said she doesn’t know if it’s possible - I asked why and she said it’s because he administers his own insulin so they don’t need to do it for him. I’ve chased it up with his allocated care worker today and asked if she can instruct district nurses but I’ve not heard back from her yet.

I understand and appreciate it’s difficult but the care worker managing his reablement package said he needs a social worker to work with him more closely as I’m guessing her work is more generalised? I’m not really sure how it all works, sorry.

Also I do think his mental health has taken a battering since covid. He’s vulnerable due to other medical conditions he has so was shielding for a long time and was on furlough after that. He’s been housebound for several months and was living in filthy conditions before then until he allowed us into his house to get it cleaned up. He gets very angry when we try to raise his mental health with him though and it’s been a non starter with drs when he was in the hospital and with his GP.

I do think he understands he might die but I’m not sure he understands the full outcome of his actions if you know what I mean. So he doesn’t want to die but he’s blasé about not checking his blood sugar and then after a hypo he’ll say ‘I don’t understand why that happened’

The social worker is in charge of getting dad a care package. They do the assessment of his needs. They work for the council. They are his care -coordinator and write his care plan, which details all his care from all organizations/people involved with him. They liase with the organizations who are providing his care and monitor it. They are your main point of contact regarding concerns.

The care worker is probably his key worker, which means out of all the care workers, they're in charge of his case. So they work for "Amazing X Home Care Company", dad has eg 3 carers from that company and this one who is fighting your corner is his key worker, who is monitoring things regarding your dad/Amazing X. They can refer any concerns to the social worker, but they can't make the social worker take action and provide more care hours. Amazing X will have their own written action plan detailing your dad's care from them only.

Nobody, Amazing X, social services, GP etc can speak to you about dad unless he gives permission, probably in writing. This is why GP can hear your concerns but not respond or update you. Patient confidentiality. GP is NHS. NHS and SS work together. One is not the boss of the other. Neither can make the other do things. There are laws in place which says what each must do. If they ignore it you can raise complaints and eventually take them to court, if you're rich enough and have the energy and ability to do this. If not, you're screwed.

Capacity means dad can refuse help. That's on him, nobody else's fault. He has the right to discharge himself from services, even if that results in his death.

Is he deliberately not eating because he doesn't want to inject? That won't solve the issue of his diabetes obviously! But it's how some people think: no food in equals no need for insulin injection.

I understand and appreciate it’s difficult but the care worker managing his reablement package said he needs a social worker to work with him more closely as I’m guessing her work is more generalised? I’m not really sure how it all works, sorry.

If they’re concerned about safeguarding (which they should be), there needs to be a social worker involved because they have the legal duties and powers under adult support and protection legislation to investigate and to work within the scope of legislation to try and put protections in place. If your dad is deemed to lack capacity or be unable to make decisions to protect his interests due to illness, it’s a social worker who would need to make that assessment etc. I’d continue to press for a social worker to be involved.

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.

No district nurses haven’t been ordered by the GP. We have asked for this but she said she doesn’t know if it’s possible - I asked why and she said it’s because he administers his own insulin so they don’t need to do it for him. I’ve chased it up with his allocated care worker today and asked if she can instruct district nurses but I’ve not heard back from her yet.

He doesn't meet the criteria for a DN, it seems. So it would be a social care issue. Meaning SW needs to authorize provision of carers to go in and monitor the taking of medication/testing blood for dad. However, he won't meet the criteria required for needing social care either if the reason he's not testing/injecting is through choice.

The care worker from Amazing X can't do anything about instructing DN. DN works for NHS. Amazing X isn't the boss of NHS.

Oh god, I share your pain. My Dad's nowhere near as bad as this, but his dwindling sight means that he's not injecting the right levels of insulin and other medication and has been having way more hypos than usually. Thankfully his BS hasn't gone below 2 and he has packs of glucose tablets by his bed.

I'm in correspondence with his GP surgery and we're trying to arrange the district nurses to come in and take over his insulin dosing (Dad is type 2, I will add but has been insulin dependent for 30 years). They've advised about a long lasting insulin that lasts for a minimum of 24 hours and can be administered by the nurse. It's much better at stabilising blood sugar and stops the hypo scenario for most patients.

You really need to push the GP on this, there is far more that they can be doing regarding his medication.

not testing/injection through forgetting would be an example of meeting the criteria for social care

This sounds really tough OP but ultimately it’’ll all come down to capacity and an unwise choice doesn’t mean he does have it. I’ve known patients with early onset dementia and significant brain injuries to be deemed to have capacity on specific decisions like where to be discharged and care packages.

There are plenty of sites that give more details on capacity assessments but the information here is quite clear:

www.nhs.uk/conditions/consent-to-treatment/capacity/

Push for the social work assessment, call social service every day/with every new concern if you have to in order to build a picture.

District nurse threshold is also very high sadly but keep asking even if turned down. They probably won’t come out if he’s deemed to be able to administer all his own medication (and again have capacity) but each time there’s a new related concern ask for a re-referral.

The communication issues with the carers could be easily sorted if they use the reporting forms they're supplied with. I visit an elderly gentleman and his carers notes tell me what he's eaten, if he refused food, what food they've had to dispose of and what needs replaced, in the most extreme cases that he told them he just wanted them to leave, was grumpy etc . If their agency doesn't provide them with this system just get a notebook.

First battle I would fight is with the GP/district nurses.
Yes maybe he can physically administer his insulin his diabetes is clearly not being well managed.

everyone wants to, or should want to avoid hospital admission.

Therefore I would push again for DNs (not via the local authority social care worker, they can’t instruct them as easily as GPs can).

In my area I believe someone in his position (and I have known someone similar) would get daily DN input around diabetes even if it’s short term.

This to me is primarily a health issue rather than social care one, but all should work together.

Please all bear in mind that with capacity, even if someone is found to lack capacity, their stated wishes and feelings are given a lot of weight and it is still very difficult to ‘force’ someone to do what they don’t want to do even if you think it’s what’s best for them.

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.

There isn’t a requirement to involve family in an MCA (although it might be good practice and you might need to to get the context but not for the actual 4 part test itself).

There is a requirement to involve them when considering what is in someone’s best interests after you have determined that capacity is lacking for a particular decision.

@User2638483

First battle I would fight is with the GP/district nurses. Yes maybe he can physically administer his insulin his diabetes is clearly not being well managed.

everyone wants to, or should want to avoid hospital admission.

Therefore I would push again for DNs (not via the local authority social care worker, they can’t instruct them as easily as GPs can).

In my area I believe someone in his position (and I have known someone similar) would get daily DN input around diabetes even if it’s short term.

This to me is primarily a health issue rather than social care one, but all should work together.

GPs have no control over what DNs will do. GPs can refer to DNs, and DNs can say yes or no. I sympathise OP, but you are are attacking the wrong people. If you and your sister can’t persuade your Dad to look after himself, what powers do you think the GP has? If, and it’s a big “if” , the DN service actually had the capacity to go and check your Dad’s blood sugar, what would that achieve? He could inject insulin again 5 minutes after they left. DNs can’t keep the insulin themselves, so your Dad would have it in his house. It could be put in a safe, but if he wanted access to it, no one could prevent that. 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. It’s not the responsibility of medical services to coax a cantankerous man to do things he doesn’t want to do. The only other thing I can think of is referral to a diabetes specialist nurse to consider GLP-1 treatment. It’s a weekly injectable that isn’t insulin. But he’d have to meet the criteria, and one is being overweight.

I feel like we’re mirroring what OP is experiencing in real life in terms of which service should take the lead responsibility and how hard it is to know how to move forward 😔

As a carer we can give meds but not injections. Sorry havent read the full thread so may have been mentioned already

I used to work in management for a reablement service.

You need to make a complaint to your Local Authority Adult Social Care leader. Go to the top and complain. It's sad, but it really is the most effective way to get a better service.

It's difficult because if your dad is deemed to have mental capacity (remembering this isn't a permanent status - the assessment can change in different circumstances and times) then he is within his rights to refuse care/medical treatment.

But there are some obvious failings here

• our team would have referred your dad to a complex social worker very early on when it was apparent he needed support but was refusing it.
• our team would have chased the social worker until a plan was in place
• our team would have bought food for your dad (with his funds) if he allowed them
• him having no food would trigger an instant referral to social services and if deemed useful, something like meals on wheels organised (hot meal delivery)

Complain to the top of the council. And complain to PALS.

Keep complaining and making a fuss. The loudest (and rudest) families would get resolutions where others wouldn't.

Reablement is a period of assessment - usually around 6 weeks. If at the end of the reablement period its felt that the person is going to require ongoing support then it will be passed to a social worker for further assessment. I suspect he is still in that system and a care act assessment is imminent.

This isn't a safeguarding issue, its a case management issue with lots of risks.

Safeguarding means something different under the Care Act than it does in other settings. It doesn't mean 'managing all risks' it means safeguarding people from abuse and neglect. Sometimes people who are very severely self neglecting can come under that too if everything else has failed to address it, but again, this sounds like a poorly managed health need and something that potentially can be managed with a stable care package / DN support and a risk management plan.

I hear your frustration but social services can't do anything about the poor management of his diabetes, that does have to come from his GP/ Diabetes Nurse/ District nurses.

Ask the reablement worker how long he has left on reablement and insist on a social work referral at the end.

If all else fails remind the local authority that section 11 of the care act may allow the local authority to continue to try and engage with people who appear to be self neglecting if despite any refusal to engage they may still have eligible care needs.

@WhenTheyComeForYou

I used to work in management for a reablement service.

You need to make a complaint to your Local Authority Adult Social Care leader. Go to the top and complain. It's sad, but it really is the most effective way to get a better service.

It's difficult because if your dad is deemed to have mental capacity (remembering this isn't a permanent status - the assessment can change in different circumstances and times) then he is within his rights to refuse care/medical treatment.

But there are some obvious failings here

• our team would have referred your dad to a complex social worker very early on when it was apparent he needed support but was refusing it.
• our team would have chased the social worker until a plan was in place
• our team would have bought food for your dad (with his funds) if he allowed them
• him having no food would trigger an instant referral to social services and if deemed useful, something like meals on wheels organised (hot meal delivery)

Complain to the top of the council. And complain to PALS.

Keep complaining and making a fuss. The loudest (and rudest) families would get resolutions where others wouldn't.

This would be my experience as well but I'm pretty sure I know which local authority the OP is talking about due to some of her terminology and I know that particular area do reablement slightly differently.

I'm taking my time to read all of the responses and make notes as there's been some really useful information here, thank you.

I know a few have mentioned about how much professionals can do if he won't co operate but in my experience of dealing with him, he co operates a LOT more with others than he does with my sister and I. He disregards a lot of what we say and becomes very argumentative but then will often take it on board if it comes from a Dr or other professional. That being said, he can still be reluctant and withdraw from help but in his case I really think having the right support in place is the best chance of getting a resolution for him.

I did see that someone mentioned eyesight and this has flagged up with me as he often says he can't read his messages and loses his glasses. Maybe he's also struggling to administer the correct dose because he can't see properly? Something I will raise with his GP.

With regards to patient confidentiality, he's given consent for his medical information to be shared with my sister so the GP is able to share information with us.

I can't concentrate for worry as he's messaged to say his blood sugar is now really high and he can't read his text messages properly as the words are all jumbled up so he's taken a bunch of insulin and is going to bed. He's point blank refused to go to the hospital even though he really does need medical attention. Feel like my hands are tied. I'm just hoping he gets through until the morning until his lunch time carer can check on him.