Caring for the housebound and juggling home visits?

Hi everyone.

Bit of a rant ahead, Just curious if anyone has this shared experience with housebound people and getting home visits from doctors/district nurses/etc?

I find myself increasingly more and more frustrated by how home visits are run. From what I’ve experienced, there is a distinct lack of understanding for patients needs and especially the carer’s in how they’re arranged/carried out.

For example both myself and my partner care for elderly and disabled relatives, and they’re overdue their flu jabs which should have been done weeks ago, but despite desperately trying for six weeks to pin someone down to a ballpark idea of when the nurse will call to do them, we’re just repeatedly told “they’ll come when they can.” That probably works fine for most people, but fortunately not for us.

One of our carees is unable to reliably mobilize independently and some days can’t get out of a chair without assistance to answer the door by themselves. Another has learning difficulties/mental health issues and they simply will not answer the door unless they know the person calling personally and is aware/prepared in advance for them to call. Since we’re family carers we don’t have key safes etc.

Also, none of our carees are keen on having DN’s into the house to carry out the jabs this year, and would rather have them outside instead, but getting people with limited mobility out of their front doors isn’t simple and takes efforts that the DNs don’t ever seem to have time for.

All this essentially makes us as the carers prisoners in our/their homes. I understand pressures and demands are high and DNs fly by the seat of their pants most of the time, and it’s a busy time of year but it’s like this every single time our carees need to be seen at home by a doctor/DN.

A little consideration for the carer would go a long way.

Fortunately, our carees aren’t left alone for more than a couple of hours at any one time, and those couple of hours are essential for us to get out and run errands/shop etc. However for the foreseeable future we’re to be stuck waiting between 8am and 6pm to see if the DN’s appear on any given day.

A quick call to say they’re on route would work wonders, or even a rough idea of the day and time, AM or PM would help, but we get absolutely nothing. We’re just expected to sit waiting to facilitate the visit and for them to drop by whenever they can fit the caree in.

At this time of year especially, when there’s so much to get done, I feel it’s really unfair to show no consideration for the carers who have to fit their lives are the needs of the caree.

And ultimately, a call would take a few minute tops! Driving out to visit and finding the caree unable to answer to door due to lack of carer presence/support is a waste of everyone’s time!

The caree is housebound, the carer shouldn’t have to be too!

Is it really too much to ask to be given a rough idea of what date and time you’ll be needed?

Have you asked Social Services for help?
For key safes to be fitted?

None of them want a key safe. We know a few people who have had trouble as a result of getting them fitted with anything from house insurance to thefts. Also with them not wanting anyone in the house because of COVID it wouldn’t really resolve anything.

I have removed my post.

I cannot force someone to have a key safe if it makes them feel unsafe! It’s not a solution in the slightest.

My partners caree has mental health and cognitive issues and does not do well with strangers, and also requires someone they trust to be present to relay/retain information and manage mood whenever dealing with unfamiliar faces.

I think you’ve missed the point entirely.

The carees are not the problem here, the system we have in place has worked fine for many years, the issue is for us as the carers having to spend an indefinite amount of time waiting around, putting our lives and other caring duties/responsibilities on hold, to facilitate a visit that has no specified date or time frame, and that may not materialize for weeks yet.

I have removed my post.

I really don’t see how your length of experience with caring is relevant? I’ve been caring for various members of my family since I was 8 years old, and I’m 45 in March! How is that relevant to this issue?

If I’m taken ill then my partner will step in. If it’s an absolute emergency then we have other family members to turn to and/or caree’s friends who could offer some support temporarily until a long term solution could be reached, but this situation is obviously not an absolute emergency.

I’m sorry to hear about your husband, but again, I really do not see how that’s relevant here?

You’re not going to change the system without a long and protracted effort, and even then it’s doubtful that you’ll achieve anything meaningful, so something else has to change.

A Keysafe is the obvious answer, and we’ve had no problems with ours, (apart from when I’ve needed to use it due to my own stupidity: the numbers are too small for me to see easily without my reading specs :slight_smile: ) : our DN won’t ever give anything more than rough estimate of TOA and usually they’re quite close to that for Catheter changes, but for other things it can vary greatly, (emergencies take precedence).

Flu jabs can be done elsewhere, if you ever take your carees shopping then Tesco is the obvious place.

You’re not wrong, nothing is likely to ever change, but this isn’t the only area where there’s no consideration for the fact that carers have lives/responsibilities, beyond sitting and waiting for the arrival of assistance their housebound caree needs. Everyone has to fit the cookie cutter or comply with things like key safes, when they’re not always suitable/appropriate for the person in question.

Literally all I’ve asked for from the DN’s is an estimated date and time.

I completely understand that they cannot be held to exact times and are snowed under at the best of times, and I am happy to sit and wait for them to come within a specified time frame, but I really don’t think it’s unreasonable to ask for a rough idea of when you’re need to be somewhere to assist someone. But literally all they’ve given me is “maybe this week, but maybe next, they get round to it when they get round to it.”

Even housebound people like to have an idea of when someone is expected to show up, I mean what if they’re being showered, or are otherwise indisposed when the DN arrives? It’s a waste of everyone’s time to just show up without giving the slightest indication of an ETA when the patient requires support in these kind of matters.

As stated in the thread title, both carees in this instance are completely housebound, one due to physical issues, the other due to agoraphobia and both are extremely high risk. So going elsewhere for the jab is unfortunately not an option, if it had been I would have done it in a heartbeat when they were first released.

I can understand your frustrations, similar issues in my area, the district nurses visit every morning 365 to an elderly man on my street, He has very high Medical needs.
My caree living 4 doors down has come out of hospital and needs the dressing changed regularly, sometimes the wound leaks and needing the dressing changed straight away.
BUT the district nurse is NOT allowed to walk 4 doors down, change the dressing and leave my caree free for the rest of the day, but comes back 4 or 5 hours later.

The system just does not work the way we want it to and thats that, there is no common sense, its red tape and Bureaucracy, we can’t do this, we can’t do that, rules are made by someone sat in an office maybe 50 miles away.

The only bit of common sense is when our GP was visiting and shoved a load of flu jabs in her bag, every visit, she gave the elderly/disabled person their flu jab, save them a visit to the surgery in the cold and wet.

Same with the Wheelchair service, they need the person out of the wheelchair to able to fix it, but carers need to be there to hoist or help the wheelchair bound person out of the wheelchair.

But paid carers turn up and then go again, they can’t just pop back when the wheelchair people turn up, it doesn’t work like that.

The Wheelchair staff are not allowed to help lift (why can’t they train them to use a hoist) but NO they are not allowed, the wheelchair people turn up at anytime 8am to 7pm. Again the caree has to sit there ALL DAY waiting.

It is a frustrating frustrating world for carees heavily reliant on services that are just not flexible and person centred, the system is staff centred or lack of staff centred.
And frustrating for the family and friends, unpaid carers.

And as for Key Safes, again a lot have them on my street as a lot of elderly/disabled reliant on paid carers, the amount i have seen left open, the key is on view from the street.
I always knock on the door or try and inform someone the key safe is open, new carers have simply never seen a key safe before, don’t know how to use one and often don’t shut it properly.

One paid carer wrote down all the key safe numbers in her notebook, mrs smith, 14 newbury avenue 3478 etc, her car was stolen with the notebook in, very rapidly all the key safe numbers had to be changed.

Key safes are good, when they are used properly, the emergency contact centre has the number of the key safes to pass onto the emergency services e.g ambulance, so they don’t have to break the door down.

Basically the system is just overloaded and just can’t give a personalised service very frustrating, but until there is a lot more money and more staff put into the NHS and Social Services, things just aren’t going to change.

You’re exactly right, Londonbound. It’s just all so crazy to me how unnecessarily complicated and frustrating they make everything, and how they seem to defy all common sense with certain things. If you don’t fit in the cookie cutter everything becomes a battle.

Surely it makes more sense logistically and financially to see everyone in the same street at the same time? But clearly they work with some kind of nonsensical logic. And why on earth people aren’t trained to handle those kinds of aspects of their job is just beyond me. I assume, that yet again, it’s financial thing, either the cost of training or liability insurance.

In years past we’ve had the GP do the same thing. Four years in a row all of our carees had GP home visits around flu jab time, and we all got it during the visits too as their carers. Should be grateful there’s no call to have the GP out this year, but it would certainly solve the problem, since you have a decent idea of the when the GP is going to visit.

There are so many instances where there’s this whole “job’s worth” attitude about things, and how people are too afraid to use logic for fear of breeching the red tape. There’s no consideration for anything but the bottom line, and it really needs to change, especially to support carers with these things that seem trivial to most, but actually cause a lot of problems in people’s lives.

That’s a nightmare scenario with the key safes, but unfortunately it’s not the first time I’ve heard of this kind of thing happening.

The worst story I know of was from several years back during one my friend’s father’s last days. He was bound to his bedroom, and had a string of carers coming in day and night, and were using a keysafe. One of them saw he had a lot of valuables and found it necessary to let the code slip to some of her nefarious friends, and when my friend went to visit and found he’d been ransacked - in broad daylight no less! Didn’t have a leg to stand on with his home insurance either. It was an awful business.

Key safes work wonders for some but as you said, but they only work when used properly and by trustworthy/fastidious people, and unfortunately all of our experiences as a family have let us to feel that outside carers are rarely careful in their roles, or to be trusted with free access to ones home/finances etc. Yes, carers are supposed to be police checked, but frankly all that means is that they’ve not been caught yet!

I can relate… we used to have nurses 3x a week to dress my husband’s pressure sores. This meant they could arrive anytime from 8am until 8pm. Husband doses a lot so I have had to stay downstairs. I cannot even get paper/milk until they have been. Sometimes when they were busy, they would phone and ask if I could dress the sores myself and miss that day. Other times, ok not that often, they would not turn up. I sometimes have felt like ‘cannon fodder’ and have to explain patiently that I do sometimes need to leave the house for hairdresser/vet visit/chemist/shopping. I thought about a key safe but we do have indoor cats, and I would worry about them letting them out. Also I feel I have to be around as my husband is quite deaf and if I am expected to look out for infection, I need to be there when the nurses visit!

I have been asked if I can take care of the sores myself and the nurses visit once a week during lockdown. Unfortunately, despite following instructions as well as I can, they have got worse. We now have to have a Tissue Viability Nurse visit - no date, but on waiting list. I have asked if they can phone first but have an idea they will just turn up! Husband not easy and getting him to leave the dressings on for 2 ideally 3 days is a ‘challenge’. Also getting him to let me put the dressings on after he has had a bath is hard as he is on blood thinners, so the sores bleed, then stick to the pads.

I know the nurses are under a huge amount of pressure but I do feel quite angry that we are expected to carry out what really is nurses work, and just be around when they visit! Even before lockdown, it made any form of social life very very hard as I am just not reliable. God only knows how carers who work part time cope.