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Support for Mum

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AsleepInYorkshire
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Support for Mum

#445748

Postby AsleepInYorkshire » September 27th, 2021, 10:19 pm

My Mum is 80 and has life limiting cancer. The current prognosis is 2-11 weeks. She came home from hospital a week ago when I collected her.

I'm very frustrated by the lack of support we have received. We are currently talking of no support at all with the exception of the delivery of a hospital bed. We had to collect her commode and walking frame from the hospital. We've also purchased a bed table, a key safe and sourced a wheelchair. We have ramps arriving tomorrow. We have also sourced a carer for Mum as none were, or still are available for her.

The carer starts tomorrow and will be with Mum from 9am whilst 3pm weekdays only. We are covering weekends, evenings and mornings.

Mum's GP has not been informed nor has the LA Continuing Health Care. We were informed today, after we ramped up our presence, that Macmillan Nurses are going to assess Mum on Wednesday. I have no idea what that entails as they have not contacted me direct. The information came second hand.

The hospital told us Mum would have some "just in case" medication to take home with her. That wasn't with her when we collected her. I was informed today that the hospital doesn't issue these medications but the GP does and District Nurses administer it.

For the moment we are focused upon making Mum comfortable. But I have not got a clue why Mum has been home for a week and we have not been contacted by anyone until we started to chase down various departments today.

Can anyone suggest anything we can do to motivate those who are paid to help to do just that. The carer we have arranged is a retired nurse who has plenty of care experience but she is unable to attend earlier than 9am and after 3pm. We are paying for her out of our own funds, simply because we can, and Mum's wish was to come home.

I'm quite shocked at the level of communication between the various bodies employed to provide care for Mum. They have failed completely. Yet they continue to tell me to ask for their help.

I appreciate now is not the time to focus too long on this and I will take this up at a later date with the relevant bodies. But in the meantime I am trying to understand how a hospital can discharge a terminally ill patient without informing her GP or the LA and misinform me about her "just in case" medication.

I'm frustrated, cross and disappointed.

AiY

kiloran
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Re: Support for Mum

#445782

Postby kiloran » September 28th, 2021, 8:17 am

Sorry to hear about your problems AiY. My mum was in hospital for 4-5 weeks earlier this year and her discharge process was brilliant. Hospital bed delivered to her house, visits by occupational therapists, 2 carers 4 times a day, twice weekly visits by physiotherapists. The biggest problem was a lack of communication (as you are finding), mum had no idea who many of the people were when they appeared out of the blue, or their departments and phone numbers.
I think you need to lean on the social services and occupational therapists at your local council. The hospital should also have someone responsible for discharges and arranging all the facilities. Also try your local hospice, they will almost certainly point you in the right direction and do much of the work themselves.

Good luck

--kiloran

pje16
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Re: Support for Mum

#445784

Postby pje16 » September 28th, 2021, 8:26 am

Hi AiY
so sorry to hear about this
My mum passed away 4 years ago and for the last two years of her life at home when she was bedridden we used Bluebird Care
The timetabling of staff was a bit haphzard, but the staff who came were first class
not sure whereabouts you are In Yorkshire
but they do operate there
https://www.google.com/search?client=fi ... +yorkshire
Last edited by pje16 on September 28th, 2021, 8:30 am, edited 1 time in total.

Dod101
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Re: Support for Mum

#445785

Postby Dod101 » September 28th, 2021, 8:29 am

Your GP is the first contact point. He should be organising community nurses and maybe Marie Curie nurses who will sit overnight with her if required. The just in case box has to be prescribed by the GP via a normal prescription and you collect it either from a hospital pharmacy or the local chemist.
My experience with MacMillan nurses was mixed. It is not assessment you need it is help.

I was through all this with my wife in exactly the same situation admittedly in Scotland but it should not be any different. PM me if you like.

You must stir it up if no one else is.

Dod

PS Kiloran's post has reminded me that you need to get phone numbers of the community nurses (Day and night numbers) I was amazed at the number of doctors and nurses who are out and about at all hours of the day and night helping in your situation but you must know how to contact them if required at 3 am as happened to me more than once.

Dod

monabri
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Re: Support for Mum

#445797

Postby monabri » September 28th, 2021, 8:59 am

One week after I retired , I found myself in a similar situation with my mother...one of those out of the blue things. She lived 140 miles away. I'm an only child. The next 7 weeks were s*** ( excuse expletive). Trying to care for and move someone on your own is impossible and you will need help. The level of care required will increase with time.

If you are lucky, you will find the paid for carers to be of some help but push to get your mum into a hospice if you can. They are the best place for your mum ( and for you as you can get rest knowing there's 24/7 care.

Dod101
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Re: Support for Mum

#445852

Postby Dod101 » September 28th, 2021, 11:35 am

monabri wrote:One week after I retired , I found myself in a similar situation with my mother...one of those out of the blue things. She lived 140 miles away. I'm an only child. The next 7 weeks were s*** ( excuse expletive). Trying to care for and move someone on your own is impossible and you will need help. The level of care required will increase with time.

If you are lucky, you will find the paid for carers to be of some help but push to get your mum into a hospice if you can. They are the best place for your mum ( and for you as you can get rest knowing there's 24/7 care.


Indeed but the patient may not want to go into an institution (and however good a hospice is that is what they are). My wife wanted to die at home in her own bed. I could not deny her that. My wife had an amazing GP but even an average GP should be able to arrange help. As I said the Marie Curie nurses were wonderful.

Dod

monabri
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Re: Support for Mum

#445868

Postby monabri » September 28th, 2021, 11:57 am

Fair enough, but I'll put the idea out there for consideration. Personally ( although I hope it never comes to it) I'd elect for hospice care if possible. AiY mentioned a lack of support. Consider, for example, taking your mum to the toilet and cleaning up after - not easy from a dignity point of view for one's mum. Once the syringe drivers are fitted and the dosage of sedative is increased, things get worse. So, if AiY can get this covered whilst his mum is still at home then that might be OK...but care will be needed to be on hand at a moments notice.

I'd second your comment on pushing for help. I'd also suggest trying to avoid hospital care, especially at end of life. My experience of that was absolutely dreadful ( my cousin is a senior nurse and she stepped in at the hospital my mum was briefly at to " have words").

Dod101
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Re: Support for Mum

#445871

Postby Dod101 » September 28th, 2021, 12:02 pm

monabri wrote:Fair enough, but I'll put the idea out there for consideration. Personally ( although I hope it never comes to it) I'd elect for hospice care if possible. AiY mentioned a lack of support. Consider, for example, taking your mum to the toilet and cleaning up after - not easy from a dignity point of view for one's mum. Once the syringe drivers are fitted and the dosage of sedative is increased, things get worse. So, if AiY can get this covered whilst his mum is still at home then that might be OK...but care will be needed to be on hand at a moments notice.


Correct. Obviously a hospice is logically the best place but logic does not always apply in these situations. Furthermore, dignity does not, in extremis, really count for much either.

Dod

pje16
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Re: Support for Mum

#445881

Postby pje16 » September 28th, 2021, 12:13 pm

My Dad insisted that Mum didn't go into a care home, he said he could give her much more attention and care at home (which he could),
but it aged aged him about 10 years in 24 months :cry:

AsleepInYorkshire
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Re: Support for Mum

#446065

Postby AsleepInYorkshire » September 28th, 2021, 6:43 pm

Thank you for all your comments and kindness. Mum's GP has visited her today. He's contacting Macmillan and the District Nurses and arranged for her "just in case" medication which arrived this afternoon.

It was Mum's wish to go home. As of today she virtually has someone with her 24hrs a day. She will be alone for 1hr in the morning between 7.30 and 8.30 and 30 minutes in the afternoon between 3 and 3.30pm.

Whenever possible (if I'm not travelling to site or can delay my start) I will sit with Mum from 7.30 to 8.30 in a morning and have a cup of tea and a natter.

The hospital hasn't issued the "immediate discharge letter" which seems to have been where the communication has failed.

I am grateful for all the replies and can't thank you enough. Very kind indeed.

Thank you

AiY

pje16
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Re: Support for Mum

#446080

Postby pje16 » September 28th, 2021, 7:16 pm

Hey AiY
we're here for you
not surprised your Mum wants to be at home
It's where she feels safe and comfortable
She's lucky to have you to look after her

oldapple
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Re: Support for Mum

#446426

Postby oldapple » September 29th, 2021, 8:55 pm

I 'spoke' to you earlier this year about your mum AiY, as my mother also had a terminal diagnosis. I just want to flag up Dod's recommendation of Marie Curie nurses. Here, in N Ireland, they were a godsend in our darkest hours. We live in a rural location but following phone calls at any hour of the night, one would appear often within an hour. When we were allowed to have one of these nurses to stay overnights, as well as medication needing to be administered, they would know how to help make Mum more comfortable. Towards her final days, one particular memory is of the quiet and quite elderly nurse who asked for a lighter fleece blanket instead of the 'heavy' (to Mum) duvet as a cover on her bed. MacMillan nurses never got beyond form filling.

In our case, it was our excellent District Nurse who got us the help of Marie Curie nurses as she could see how exhausting it was (and that was for two of us sharing the load equally). Thoughts are with you and your Mum.

AsleepInYorkshire
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Re: Support for Mum

#446437

Postby AsleepInYorkshire » September 29th, 2021, 9:35 pm

oldapple wrote:I 'spoke' to you earlier this year about your mum AiY, as my mother also had a terminal diagnosis. I just want to flag up Dod's recommendation of Marie Curie nurses. Here, in N Ireland, they were a godsend in our darkest hours. We live in a rural location but following phone calls at any hour of the night, one would appear often within an hour. When we were allowed to have one of these nurses to stay overnights, as well as medication needing to be administered, they would know how to help make Mum more comfortable. Towards her final days, one particular memory is of the quiet and quite elderly nurse who asked for a lighter fleece blanket instead of the 'heavy' (to Mum) duvet as a cover on her bed. MacMillan nurses never got beyond form filling.

In our case, it was our excellent District Nurse who got us the help of Marie Curie nurses as she could see how exhausting it was (and that was for two of us sharing the load equally). Thoughts are with you and your Mum.

Thank you for your kind words. I had forgotten your post until you reminded me. Sorry my memory isn't always my greatest asset. Mum's had a visit today from two Macmillan nurses. I think they do similar work to Marie Curie nurses. Early signs are that the carer we have arranged privately for Mum appears to be more than excellent. She's washed Mum's hair today. She cleans different rooms on different days and is giving Mum massages to ease stiffness. She's not over bearing but is pleasantly chatty and has very positive energy. She administers Mum's medication too. Mum wouldn't suffer fools and would let me know immediately if something was worrying her.

Mum's had more friends to visit tonight. We are trying to keep her mind occupied and as I've mentioned we aren't leaving her alone for much more than 30 minutes a day.

Thank you for letting me know about your experience with Macmillan - I'll certainly take that on board and ensure we have a plan B.

Thank you for the time you've found to respond which is very kind and I am very grateful

Take care

AiY

AsleepInYorkshire
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Re: Support for Mum

#447902

Postby AsleepInYorkshire » October 4th, 2021, 10:06 pm

Last Thursday Mum received a letter from Continuing Care introducing them to her. I found several points about the letter seriously concerning. The first was Mum eyesight has been failing quite rapidly, I assume due to the brain cancer. Sending a letter to someone who couldn't read it seems daft, especially if you should know their medical history. But the letter was dated 29th September. Mum left hospital with a prognosis of 3-12 weeks on the 21st September. And finally the letter closed with the following statement;

We hope in providing you with this information it has given you some reassurances with regards to how your care package is currently arranged under the NHS Fast Track agreement.

That evening I decided I would complain. Strangely enough following that complaint two working days ago I have received more calls than in the month before.

I'm cross. For two reasons. Continuing Care and the Hospital have let Mum down seriously. But also I am feeling a culture of appeasement and deflection from those who have contacted me since my complaint. The appeasement is totally lost on me as I have sorted everything they tell me they cannot. And the deflection is immature and conceited. I am not sure they currently understand that having started this process I will see it through.

I have tonight completed all the hurdles they have placed in my way to allow my complaint to be accepted. The process has commenced. In the meantime I've acquired a copy of the following document - The National Framework for NHS Continuing Health Care & NHS Funded Nursing Care. It's a big document but I've already managed to identify parts which set out that Continuing Care should be notified through an "early warning" that it is highly likely a patient will need Fast Track care when leaving hospital. Fast Track refers to patients who have a terminal prognosis and is almost a form of triage for those leaving hospital to die at home.

Later in the week I will read the document more thoroughly and add the contents of that to my complaint. My complaint centred around the lack of "early warning" (the hospital were 99% sure before her MRI scan that her lung cancer had spread to her brain a day after she entered hospital) and also the lack of communication, horizon planning and generally the use of shields such as Brexit and Covid.

Apparently they have 60 days to respond to my complaint. Take your time - I'm going nowhere ;)

AiY

PhaseThree
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Re: Support for Mum

#447910

Postby PhaseThree » October 4th, 2021, 11:09 pm

i'm not sure how to respond to this post, my father died a few years ago and we experienced very much the same as you.
- The main hospitals do not communicate with anyone.
- The local GP was completely unaware of his discharge.
- We were not fully informed of the prognosis,
- The system is just too bureaucrat to cope with death in the short term
- We were pretty much left to cope on our own
- The primary reason for the existence of the NHS complaints procedure is to protect the NHS

Our solution was to engage with the Macmillan Nurses - they were superb.
If we had left his passing to the NHS it would have been far more painful (for all of us).

(genuinely) my very best wishes at this time, there are no easy answers.

P3

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Re: Support for Mum

#448193

Postby 1nvest » October 5th, 2021, 11:01 pm

PhaseThree wrote:- The primary reason for the existence of the NHS complaints procedure is to protect the NHS

My experience has been that a three hour zoom conference with NHS continuous care led to repeated disagreements but their preferences being recorded. A follow up complaint as you say was just a exercise to justify/protect their preferences. Basically a hand over from NHS over to the Council and fundamentally self funding. When escalated further, after months and still no reply.

Mum's now back in her own home with me (only child/son) in having relatively recently retired being her 24/7 carer. Prior to that was imprisonment - in a care home but where any trips out required a 14 day bedroom isolation upon return and no visits permitted during that time, in total contrast with my desire to pick her up in the mornings, drop her back in evenings.

Dignity is pretty much out the window, but she once changed me so my turn to reciprocate. Uncomfortable at first, but relatively soon just accepted as 'normal'.

Lost my wife decades ago, so with adult sons and recent retirement I guess the timing is fortunate. Vascular dementia in her case, and frailty (90 soon), so could be a long haul. She's on tablets that hopefully slow the decline into dementia and I'm striving to make best of the time we have.

My father passed back in 2008 in his mid 70's. Cancer. The hospice seemed to just keep topping up the morphine until he slipped away IME such that he wasn't actually in their that long. A case of being taken in for a while to experience how pleasant the place was - and never returning home.

AsleepInYorkshire
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Re: Support for Mum

#448196

Postby AsleepInYorkshire » October 5th, 2021, 11:41 pm

PhaseThree wrote:i'm not sure how to respond to this post, my father died a few years ago and we experienced very much the same as you.
- The main hospitals do not communicate with anyone.
- The local GP was completely unaware of his discharge.
- We were not fully informed of the prognosis,
- The system is just too bureaucrat to cope with death in the short term
- We were pretty much left to cope on our own
- The primary reason for the existence of the NHS complaints procedure is to protect the NHS

Our solution was to engage with the Macmillan Nurses - they were superb.
If we had left his passing to the NHS it would have been far more painful (for all of us).

(genuinely) my very best wishes at this time, there are no easy answers.

P3

Thank you for your considered and kind response. I'm sorry to hear that you've had to endure a similar process at a time when you will have been least capable of coping with it. I hope time has come to your aid after the passing of your Father and you smile when you remember him.

I have many qualities. Some good. Some not so good. And that will depend upon which direction onlookers are viewing. I know that this will be a "long game". Many years ago I earned a nickname within my company. I was referred to as "the ferret with lockjaw". I just never let go. And if I can now point that quality in the right direction I should be able to give the complaint I have made the support it's going to need.

I agree, that at some point, admin, bureaucracy and general complacency has crept into the system that should deliver a service. It's riddled with every manifestation of over-thinking, form creation and negative behaviours one could ever think of. A self-fulfilling pile of self preservation.

I'm aware of what I have taken on. I wish I was more benign in these situations. But I have to be honest to myself.

Again thank you

Take care

AiY

1nvest
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Re: Support for Mum

#448559

Postby 1nvest » October 7th, 2021, 2:54 pm

AsleepInYorkshire wrote:I agree, that at some point, admin, bureaucracy and general complacency has crept into the system that should deliver a service. It's riddled with every manifestation of over-thinking, form creation and negative behaviours one could ever think of. A self-fulfilling pile of self preservation.

Sadly repeated governments have directed the UK to where the youth leave school/college/university all want/expect to be chiefs, not indians, and where indians from other countries were called upon to fill the needs. The same led to the collapse of the Spanish empire when its gold sourced from South America dried up and as part of that its over-dependence upon imported skills/labour/resources also collapsed. Which has led to the present day nightmare situations.

It drives me mad at the brilliance and efforts of the indians that we do have are overwhelmed by bureaucracy and disconnect. Computer says no and absence of simple common sense type overall controls. For instance my GP practice and pharmacist share the same building, however prescriptions/medications are a nightmare, repeated failures that require 'someone' (i.e. family/friend) to monitor and fix/resolve. Home care/support is totally disconnected where form filling/ticking is extensive whilst actual actions are more often met with 'not my job' type outcomes. Hospitals are more a case of a single indian/nurse being followed around by three with clipboards. Phone response times can be atrocious, where 'answer all calls within 30 seconds' type issues were addressed by plugging in answerphones or some other automated call answering system that leaves you hanging for half a hour or more still with no actual productivity.

Sexist yes, but when I was a kid many girls sought to be a nurse or similar aspiration. No more.

The answer IMO is not that social care/NHS to be privatised/reviewed, but rather overhauled towards greater centralisation/control with a single 'matron nurse' assigned to each individual who is largely free to do things his/her own way.

AsleepInYorkshire
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Re: Support for Mum

#448596

Postby AsleepInYorkshire » October 7th, 2021, 6:30 pm

I've had another call from a member of the local Continuing Care Team. Direct Payments. They have offered me three alternatives to receive "funding" for the carer I have put in place for Mum. I've already told them that none of the alternatives are of any benefit to me. I was advised that she would report back to the Care Coordinator that I had refused their help.

Oh dear :roll:

Red ... bull!

I made it clear I hadn't refused at all. I made it clear that I had told them that none of the alternatives offered to me are of benefit. And that problem has been created by them not being able to put a carer in place as required in various Acts, Regulations, Frameworks and other instruments.

I've done a little research. I've found the following documents which relate to the situation my Mum is in.

  1. National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care October 2018 Revised
  2. The Care Act 2014
  3. The Care and Support (Discharge of Hospital Patients) Regulations 2014
  4. Fast Track Pathway Tool for NHS Continuing Healthcare Published December 2018
  5. User Guide to Direct Payments
Bit of a long shot I know but is anyone aware of any other documents that could apply in the circumstances please.

Thank you

AiY


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