Advice on getting care for the old or otherwise ill or disabled..

[sime42]

The thread title and the first few posts need tidying up to reflect the help offered with navigating the care system.
If/when you enter that world of pain you will be grateful for any scrap of assistance you can get!
Having been through it of late I can say it is the awful topping on a nightmare experience. I am left with a very dim view of the NHS, most especially GPs and their absence/reluctance to see any patients. The hospital system is mostly dysfunctional despite the efforts of some of the people in there. There are some wonderful people seemingly trying to do their absolute best but there are also a high number that are the complete opposite and a big number that although presumably trained in biology would not know their arse from their elbow.
I hear rumours that McMillan offer a great deal of support, as far as my experience goes it is along the same lines as mermaids are beautiful and unicorns are magical. Haven't seen any of them so wouldn't know. Haven't tried to contact mermaids or unicorns so maybe I am being unjust putting them in the same bracket.
Spoke to the GP about palliative care to be told they don't offer any as they can't get the staff. One of the district nurses did offer to arrange physio when Mum was no longer able to get out of bed, of all the shit we have had to deal with over the last 6 months or so that was the one that really broke me. I don't know how it can be so cruel as being told Mum has a fortnight at best and the next day being offered physio.
I am a strong believer of not relying on the state for much at all and that you have to look after your family but a bit more help would have been appreciated. Me and my brother have had to deal with things that went way beyond decency and dignity.  It has been very hard work and I genuinely think it very nearly killed me and my brother in the process.
Anyway, Mum had 24 hour care from her family, we made sure she was able to stay at home where she wanted to be and passed away this morning.
 
I'm sure you good people will pass on your messages to me and I don't want to seem ungrateful by saying I struggle with the emotional bit that such things bring on. Instead you should prepare yourselves for when you have to deal with it, either for yourself or for your loved ones. For something as basic as this you would think the process was simple, it isn't.

Condolences for your loss. A horrible situation at the best of times, it really shouldn't have been so much harder for you. You did the best for your Mum, you should rest assured.

We lost my father to a mystery paralysing illness a few years ago. I have to say that the hospital/medical side of it was good. He was lucky to get some top notch doctors. I'm aware that it could have been so much worse though. It does seem to be a real postcode lottery. And timing plays a part, it's got a lot worse over the last two years. I feel for anyone going through something similar this year or last.
The social care side was abysmal. We had to fight like hell to get him some respite care towards the end; basically to give my poor Mum a rest. Perversely it was also a struggle to get him home again for the final chapter.

For whatever reasons the system really is broken.

[sime42]

Great idea for a thread @John87. Much appreciated.

 

 

[kevinjohnsonmbe]

13 hours ago, Mark Bolam said:

Peasgood that was a tough read mate.

You and your brother should hold your heads up high.

Your Mam would be very proud of you both, and I hope she’s at peace now.

 

Look after yourselves mate.

 

John, this is a very difficult, informative and thought-provoking thread.

Thanks for taking the time.

Spot on Mark.... 👍🏻
 

(on a lighter note - I’m voting YOU for AT agony uncle in a separate thread (so as to not detract from the important and serious nature of this thread))

 

 

[john87]

12 hours ago, sime42 said:

Condolences for your loss. A horrible situation at the best of times, it really shouldn't have been so much harder for you. You did the best for your Mum, you should rest assured.

We lost my father to a mystery paralysing illness a few years ago. I have to say that the hospital/medical side of it was good. He was lucky to get some top notch doctors. I'm aware that it could have been so much worse though. It does seem to be a real postcode lottery. And timing plays a part, it's got a lot worse over the last two years. I feel for anyone going through something similar this year or last.
The social care side was abysmal. We had to fight like hell to get him some respite care towards the end; basically to give my poor Mum a rest. Perversely it was also a struggle to get him home again for the final chapter.

For whatever reasons the system really is broken.

Hi There,

You say that; "For whatever reasons the system really is broken" and you are correct. I can tell you EXACTLY why the system is broken though, the law of the land has provided for the circumstances where people are entitled to have the care they need. It is the unprofessional twats of doctors and social workers, proper wankers, that collude to thwart the will of parliament. Selfish twats that only care about themselves, never mind the "duty of care" to their clients.

 

Now, i know that sounds a bit harsh, but let me explain..

 

The system basically works like this;

 

Social services have a DUTY to assess where "it appears to them" that someone has a need.

 

Now, the law states that;

 

"The duty to carry out a needs assessment applies, regardless of the authority’s view of the level of the adult’s needs for care and support"

 

This means the bar is set very low, so that in practice, they have to assess everyone that asks for an assessment.

 

This assessment has to be in writing, and then, from this, they decide what help you require and this is written into a "care plan" Now, i will just explain the "old" version of the law now as it makes things simpler to understand.

 

The law states that a local authority is allowed to take resources into account when deciding what needs to meet, [and all kinds of regulations sprang up to provide a mechanism for deciding] BUT and it is a very BIG but, once having decided that it is necessary to meet a need, they then HAVE to meet this need REGARDLESS OF RESOURCES, they are committed..

 

Now, the sentence above in bold type is a bit outdated, but i will come back to that later..

 

So, once this "need" is on your care plan, they HAVE to meet this need and if not, you could enforce it in court..

 

So, where does it all go wrong??

 

Well, the person that has the final say, in law, as to what your needs actually are, is the social worker that does the assessment. There is nothing whatsoever you can do about their verdict [this bit has changed a bit] so long as they went about it, the actuall process of assessment i mean, in the right way.

 

[Going off at a bit of a tangent, if they did not, you could legally force them to redo it, but there is nothing to stop them reaching the same verdict again..]

 

So, up to now you can see that basically; 1, you have an assessment. 2, using their professional judgement, they write a care plan, and 3, the local authority have a legal obligation to meet this plan..

 

So where does it all go wrong??? I can tell you exactly..

 

1, The social worker does the assessment, [which they will NEVER show you]

 

2, THEN they remember this bit "once having decided that it is necessary to meet a need, they then HAVE to meet this need REGARDLESS OF RESOURCES"

 

3, Therefore, before they write the care plan, they go off to see their boss who will tell them to "readjust" their assessment, leaving out bits that are deemed to be too expensive, and it is the "readjusted" version that will get onto your care plan..

 

Totally illegal, totally unprofessional, a deliberate team effort to thwart the will of parliament, but this is what happens. They might try to dress it up and will talk about "having to ask the funding panel" but there is no basis in law for this sort of rubbish whatsoever. They have allowed their professional judgement to be swayed to suit their bosses desire to avoid spending money... Absolutely disgusting...

 

This happens every day in every social services department in the country, and THAT, is why the system is "broken"

 

Now, remember i said earlier about the "old" version of the law, and that things had changed a bit?? Well, parliament got a bit pissed off with its will being thwarted in this way [more on this later] so they brought in "eligibility criteria" that basically lists the needs that they MUST provide for, therefore, takinghthe decision as to what needs they were going to meet, away from the local authority to some extent..

 

I cannot explain it all here, it would be about thirty pages, but basically, it all revolves around, IN ADDITION to what you might imagine was "care" [wiping your bum, that sort of thing]  providing services to enable a person to do whatever is important to that person and their "wellbeing"

 

I have no idea what the english criteria are, but here in wales you might recieve help to go to church [this is one official example for you that actually appears in the regulations] but i suspect the english version will be similar.

 

Now, it is all very well parliament passing these acts on the one hand BUT, at the same time, with the other hand, they cut the amount they provide to local authorities to pay for all this and that is the root cause of all that has gone wrong..

 

I have to go out now, but later i will write some more about things you NEED to know about, that you will find very useful..

 

john..

[Baldbloke]

Just my tuppence about what is provided in Grampian. Remember I just drive the out of hours doctors, nurses and paramedics and I am not clinical.

 

There has also been no mention, as yet, of the Marie Curie teams that do wonderful hands on work for palliative patients. We are very fortunate up here that their work is partly Council funded and they also work alongside us in out of hours at nhs Grampian. Our MC teams cover a vast area and are often stowed out with work. We pick up the additional work if they are busy elsewhere.

My understanding of McMillan is that they provide assistance and advice over what’s available rather than hands on care. But I could be wrong…..

 

The slide into GPs opting out of of out of hours was thanks to a shortsighted Labour government.

If you were suddenly offered similar pay without the need to be on a rota for out of hours care it’s likely most would jump at the chance too.

 

However, up here at least we’re quite proud of the out of hours care we provide, and a priority system of visits is done to provide suitable triage and pain relief as soon as is possible.

 

Day time practice is supposed to set up care packages but we’re the ones chasing our tails overnight and at weekends when daytime practices are closed and plans are failed to be put in place.

Imagine how difficult it is to organise things when relevant office workers/consultants/social workers are asleep.

 

Out of hours provide a full 48 hours of extra care each week than daytime, and that doesn’t include holidays either. We also have less resources in clinician numbers as well as covering multiple practice areas with the equivalent of less clinicians than one practice would have.

 

Prior to Covid we often had wasted visits over poor triaging by third parties and frequent flying hypochondriacs. With the clinicians doing their own triaging of patients it’s now rare to waste a visit.

Us drivers are also used to deliver medication and contact patients in order to speak to clinicians over daytime lab result concerns. This when deemed suitable in order to keep clinicians triaging at base.

 

About 20% of our visits is to care and nursing homes.

 

The out of hours service up here is not looking to be in danger of going private either, and the nurses involved are truly 100% caring in their attitudes. Very few people would accept the pay for what they do.

 

The OPs (John) post and offer is generous, and would be helpful navigating the tricky ins and outs of palliative care requirements and how to access a way forward.

I do agree about Social Services by the way. They generally seem to attract the kind of wanker whose jaw you’d like to break. What pisses me off is that the out of hours contact has to be left a voicemail, to which he or she will answer when they deem it worth bothering. Meanwhile you’re wasting a clinicians time sitting in a car outside of the patients house. All because the Social Dept has made an inadequate plan due to their ineptitude.

 

Perhaps we are more lucky up here with the care that’s available?

 

 

 

 

 

 

 

 

 

[john87]

1 hour ago, Baldbloke said:

Just my tuppence about what is provided in Grampian. Remember I just drive the out of hours doctors, nurses and paramedics and I am not clinical.

 

There has also been no mention, as yet, of the Marie Curie teams that do wonderful hands on work for palliative patients. We are very fortunate up here that their work is partly Council funded and they also work alongside us in out of hours at nhs Grampian. Our MC teams cover a vast area and are often stowed out with work. We pick up the additional work if they are busy elsewhere.

My understanding of McMillan is that they provide assistance and advice over what’s available rather than hands on care. But I could be wrong…..

 

The slide into GPs opting out of of out of hours was thanks to a shortsighted Labour government.

If you were suddenly offered similar pay without the need to be on a rota for out of hours care it’s likely most would jump at the chance too.

 

However, up here at least we’re quite proud of the out of hours care we provide, and a priority system of visits is done to provide suitable triage and pain relief as soon as is possible.

 

Day time practice is supposed to set up care packages but we’re the ones chasing our tails overnight and at weekends when daytime practices are closed and plans are failed to be put in place.

Imagine how difficult it is to organise things when relevant office workers/consultants/social workers are asleep.

 

Out of hours provide a full 48 hours of extra care each week than daytime, and that doesn’t include holidays either. We also have less resources in clinician numbers as well as covering multiple practice areas with the equivalent of less clinicians than one practice would have.

 

Prior to Covid we often had wasted visits over poor triaging by third parties and frequent flying hypochondriacs. With the clinicians doing their own triaging of patients it’s now rare to waste a visit.

Us drivers are also used to deliver medication and contact patients in order to speak to clinicians over daytime lab result concerns. This when deemed suitable in order to keep clinicians triaging at base.

 

About 20% of our visits is to care and nursing homes.

 

The out of hours service up here is not looking to be in danger of going private either, and the nurses involved are truly 100% caring in their attitudes. Very few people would accept the pay for what they do.

 

The OPs (John) post and offer is generous, and would be helpful navigating the tricky ins and outs of palliative care requirements and how to access a way forward.

I do agree about Social Services by the way. They generally seem to attract the kind of wanker whose jaw you’d like to break. What pisses me off is that the out of hours contact has to be left a voicemail, to which he or she will answer when they deem it worth bothering. Meanwhile you’re wasting a clinicians time sitting in a car outside of the patients house. All because the Social Dept has made an inadequate plan due to their ineptitude.

 

Perhaps we are more lucky up here with the care that’s available?

 

 

 

 

 

 

 

 

 

Hi There,

 

Who assesses the patients and draws up the care plans?? [and pays]

 

From what you are saying it sounds to me like the care plans are hospital discharge plans and not the "community care assessments" that social services provide??

 

In saying that, i have no idea as to what discharge planning is done in a "general" hospital for want of a better term, as my area of expertise all revolves around the processes involved in care provided in a psychiatric hospital.

 

There a patient would have a multi disciplinary CPA/CTP meeting at the point of discharge, with a CTP care plan being drawn up there and then, followed by the patient being sent on their way!!

 

Aftercare, would then be provided or arranged for by the local CMHT [community mental health team] which is a jointly run affair combining the efforts of both the NHS and social services.

 

The patient would also have a named "key worker" or "care manager" in charge of their aftercare [if any] and usually they would be appointed a CPN [community psychiatric nurse] or a mental health social worker that would be part of the CMHT team..

 

Whether the patient has to pay for their own care depends on whether they were admitted as an "informal" patient [just as securely locked up, but volunteered to go] or as a "formal" patient brought in by the police, on, usually S136, or they might be admitted on S2 [for assessment, often then put on S3 for treatment] of the MHA.

 

There are also other sections used for forensic patients transferred from prison, or that a judge has sent direct to a secure hospital rather than prison.

 

If they WERE a "formal" patient, then any aftercare they are assessed as needing on their discharge care plan, would be provided free of charge by virtue of operation of S117 of the MHA.

 

As i say, no idea how it works in the more usual sort of hospital..

 

I presume that the Marie Curie teams are funded by way of a council "block" grant and not on an individual patient by patient basis as would be the case of care provided [direct provision] or otherwise funded, by the local authority??

 

john..

[Peasgood]

4 hours ago, Baldbloke said:

My understanding of McMillan is that they provide assistance and advice over what’s available rather than hands on care. But I could be wrong…..

I don't actually know what their role is but I get the impression that you would normally be assigned a McMillan nurse once diagnosed with cancer. That little detail never happened no matter what their role was to be. Due to Covid I think was the excuse used but we certainly never had any contact with them. The hospital actually hands you a McMillan booklet with numbers to ring, I rang them hoping to get some info of what to expect, not really what to expect off them but more what happens next. Mum was on chemo so was her hair going to fall out, that sort of thing. They basically said read the book, fair enough but would have liked a bit more support than that. Only other thing was they kept saying "and how does that make you feel?" I am a practical person, I can deal with practical things, I am probably like most blokes and try to completely refuse to even consider how it makes me feel because what difference would that make.

 

As for Marie Curie, was told they were only involved in the last 48 hours of life. Well how the feck would I know when that 48 hours was going to start?

[Baldbloke]

I don't actually know what their role is but I get the impression that you would normally be assigned a McMillan nurse once diagnosed with cancer. That little detail never happened no matter what their role was to be. Due to Covid I think was the excuse used but we certainly never had any contact with them. The hospital actually hands you a McMillan booklet with numbers to ring, I rang them hoping to get some info of what to expect, not really what to expect off them but more what happens next. Mum was on chemo so was her hair going to fall out, that sort of thing. They basically said read the book, fair enough but would have liked a bit more support than that. Only other thing was they kept saying "and how does that make you feel?" I am a practical person, I can deal with practical things, I am probably like most blokes and try to completely refuse to even consider how it makes me feel because what difference would that make.
 
As for Marie Curie, was told they were only involved in the last 48 hours of life. Well how the feck would I know when that 48 hours was going to start?

Our local Marie Curie nurses are used on a need basis and most definitely not just for the last couple of days. Some patients can be known to them for a couple of years or even more. Our dispatchers in Aberdeen raise the calls as jobs for the girls as they come in.I believe they are funded through charitable donations, local funding and something out of the NHS budget, but I don’t know the detail.

As I suggested, I’m ignorant as to how much McMillan nurses do. When my mother in law was diagnosed she got one visit and a heads up on how to access grants towards care etc. After the one visit there wasn’t a follow up. That was in Angus. I do believe they operate solely on a charitable basis which may explain why their resources are more limited.

I’m sorry for your loss, and can empathise through my parents going through the same issues.

[Baldbloke]

Hi There,
 
Who assesses the patients and draws up the care plans?? [and pays]
 
From what you are saying it sounds to me like the care plans are hospital discharge plans and not the "community care assessments" that social services provide??
 
In saying that, i have no idea as to what discharge planning is done in a "general" hospital for want of a better term, as my area of expertise all revolves around the processes involved in care provided in a psychiatric hospital.
 
There a patient would have a multi disciplinary CPA/CTP meeting at the point of discharge, with a CTP care plan being drawn up there and then, followed by the patient being sent on their way!!
 
Aftercare, would then be provided or arranged for by the local CMHT [community mental health team] which is a jointly run affair combining the efforts of both the NHS and social services.
 
The patient would also have a named "key worker" or "care manager" in charge of their aftercare [if any] and usually they would be appointed a CPN [community psychiatric nurse] or a mental health social worker that would be part of the CMHT team..
 
Whether the patient has to pay for their own care depends on whether they were admitted as an "informal" patient [just as securely locked up, but volunteered to go] or as a "formal" patient brought in by the police, on, usually S136, or they might be admitted on S2 [for assessment, often then put on S3 for treatment] of the MHA.
 
There are also other sections used for forensic patients transferred from prison, or that a judge has sent direct to a secure hospital rather than prison.
 
If they WERE a "formal" patient, then any aftercare they are assessed as needing on their discharge care plan, would be provided free of charge by virtue of operation of S117 of the MHA.
 
As i say, no idea how it works in the more usual sort of hospital..
 
I presume that the Marie Curie teams are funded by way of a council "block" grant and not on an individual patient by patient basis as would be the case of care provided [direct provision] or otherwise funded, by the local authority??
 
john..

Your doctor at your nominated surgery is the one who should be arranging a care package as well as just in case medication and even a syringe driver if required later on. At least that’s how it works up here.

It can be done through our out of hours service but should be done by the patients doctor within the community.

A hospital discharge usually just involves instructions and drugs to serve long enough for the patients doctor to do his or her job.

Likewise, any referrals for additional services and even hospital admission is routine for the patients doctor to organise. It’s just a sad fact that inadequate care packages are sometimes in place, or a patient suddenly goes downhill quickly and needs emergency help (or an hospital admission) such as ours in out of office times.

[headgroundsman]

As i understand it a community OT will assess someone's needs. My experience of Community OTs however is woeful, When i needed help following an operation on my right shoulder it took them 8 weeks to call to make an assessment. Baring in mind i am paraplegic and a full time wheelchair user having one shoulder needing rest is difficult. I was back working full time in my job as head of the grounds at a hotel when they called, Needless to say i was less than impressed. When i move house i asked them to come to assess the property to see what i needed to be able to get in, sleep and make an assessible bathroom. Someone turned up after 5 months and his first words were " I think we have let you down". I was already having the bathroom and downstairs bedroom done. I was lucky that there was an annex with a wetroom but they did not know that. I have just spent 3 months in hospital an they asked for the community OT to come to see if i need anything extra. They phoned the other day, a month following my discharge to say they had received the referral and they will be getting back to me sometime to arrange a visit. Good job i have recovered well and am fitter and stronger than last year. I hate to think what it is like for people that really need help urgently