17 replies to this topic

[Irenec]

Hi
Does anyone use care agencies to assist with bowel care ect. If so, how do you find they work out.
After 34 years,my husband has been awarded Continuing Care. At the moment 10 hours per week,
This was through a care agency. Assisting alternate days with bowels.
The whole thing has been a nightmare.
They had no idea how a spinal injured person lived (C5/6) and believe me we have lived.
We have gone through thick and thin together,fought a lot of battles,ran a bisiness with no friends and family to help. Built our own house. We are young thinking 59 year olds, and have a voice.

To cut a long story short ,the care agency have'nt found anyone who will assist my husband with his
bowel program, yet this has been going on since May this year.We told them to get some training from the spinal unit, who offered help They rang us with the good news ,they had trained 12 people
This was months ago, but still no one to accually do the job.
I do the bowels and do not mind, but in 34 years i have never had a day off. I worry that if i was suddenly taken ill, there wouldn't be any back up.

We are now in negociation with the local pct to use a care agency from away, who specialise in spinal injured people.
Fingers crossed!
Has anyone had a bad experiance with a care agency?

Irenc

Edited by Irenec, 14 October 2007 - 01:35 PM.

[darrel]

The only problem I have is that with my G/F being my care giver we can't get married. If we do she losses her job and that is our food and vehicle maint. / fuel money. so our wedding has been postponed for two years. yes I understand that I could have some one come in and let linda get an out side job. but we don't like the idea of an outsider in our home we are rather private people that live in a small town.

[bedrock]

darrel, on Oct 14 2007, 04:20 PM, said:

The only problem I have is that with my G/F being my care giver we can't get married. If we do she losses her job and that is our food and vehicle maint. / fuel money. so our wedding has been postponed for two years. yes I understand that I could have some one come in and let linda get an out side job. but we don't like the idea of an outsider in our home we are rather private people that live in a small town.

HI. We use a company called European Nursing agency (live in) who do talk through the bowel care aspect and then either the District Nurse or myself do the'practical' training to ensure safety etc. Active assistance specialise in carers for people with spinal injuries and I know a few people who use this agency. You should be able to get some help / support from you District Nurse team too.

I think it can be more difficult to get 'live-out' carers to do the bowel care due to continuity etc etc.

Hope this helps

[NurseVic]

I'm assuming you're in the UK, what with the continuing care. I'm a District Nurse and we have a patient who we go and see twice a week to help with bowel care. We always go when the carers are there, they get everything ready and we just do the initial assessment, PR exam and micralax enema if the rectum is full. The carers do whatever they need to after we've done it. It's really not a big deal or at all taxing for our DN team as it takes around 15 mins in total. As long as it's a pre-arranged routine with the carers it's pretty simple.

You could contact your local DN team about it and see what they can offer. I guess the only issue could be, I know with our team we don't do emergency bowel care, and we don't do any bowel care at all at weekends, because we just don't have the capacity time wise. However, luckily our patient has never needed it. Your local DN team may work to a different policy though.

[Irenec]

NurseVic, on Oct 16 2007, 05:21 PM, said:

I'm assuming you're in the UK, what with the continuing care. I'm a District Nurse and we have a patient who we go and see twice a week to help with bowel care. We always go when the carers are there, they get everything ready and we just do the initial assessment, PR exam and micralax enema if the rectum is full. The carers do whatever they need to after we've done it. It's really not a big deal or at all taxing for our DN team as it takes around 15 mins in total. As long as it's a pre-arranged routine with the carers it's pretty simple.

You could contact your local DN team about it and see what they can offer. I guess the only issue could be, I know with our team we don't do emergency bowel care, and we don't do any bowel care at all at weekends, because we just don't have the capacity time wise. However, luckily our patient has never needed it. Your local DN team may work to a different policy though.

Hi
Thirty four years ago we first contacted our local DN.At that time they told us they could help,but it would be when they had the time.They couldnt give us a time.They told us it could be up to 2pm in the afternoon. How was someone suppose to have a life if they have to stay in bed untill that time of day.Life does not stop because you are paralized We also needed to work for a living.

We managed all these years using some private help.

It wasnt untill last year when my husband got ill, and had attacks of AD, did we ask the doctor for more help.

The DN said that they could help but would only visit for 20mins. Not being able to appoint a time when that would be.

That is why he has been awarded continuing care, through social services.Nurseing & social care.


Apart from last year,my husband has kept very well.His bowel program is done every other day
without fail.Enemas are out not neccessary,his bowels work well when using normal spinal techniques.Which were taught by the spinal unit.
This has to be done week days, weekends,Christmas day and birthdays.

This way there are NEVER any bowel problems with impactation.
There are NEVER any accidents inbetween.

Hope you understand
Irenec

Edited by Irenec, 17 October 2007 - 11:13 AM.

[NurseVic]

Wow, that's a sad state of affairs. I think its pretty appalling that the DN team told you they could only visit for 20 minutes. We would never tell a patient that. It takes as long as it takes.

As for not providing you with a time, that's also something Id have fought over. District Nurses have early visits to do and we count our SCI bowel care guy as an early visit on our team, so we go between 8-8:45. We do this because he has a life, and shouldn't have to lay in bed until we roll up at 2pm.

I'm really sorry you were treated that way, I think your local DN team need to get a grip. I hope you get things sorted out.

V.x

[Nick's mum]

My son Nick had a problem with the District Nurses in that they could/would not follow the program that was devised by Stoke Mandeville Spinal Unit after nearly 12 months of hard work to find out what would work best and he was really suffering and having lots of accidents. Nick's bowel routine was a daily routine as he has "short bowel syndrome" after his intestines exploded and he lost most of his small intestine and part of his large bowel.
The D/N did come out every morning but not as early as we wanted as they have a lot of diabetic patients to see to first.
To cut a very long story short the D/N no longer do his bowel program unless they are filing in for me when I am not available.
I do know that Nick was not the only spinally injured on their books and for the others it works very well.
Hope that you will get it sorted out quickly.
Regards, Ulla x

[ericck]

what is a dn

[Irenec]

[quote name='ericck' date='Dec 19 2007, 12:13 AM' post='48046']
what is a dn
[/q

D N is district nurse .They work for the UK National Health Service. Usually attached to the local GP (Doctors ) surgury.

[Irenec]

UP DATE
We are now at the end of June 2008.The saga still carries on.We have been using a care agency from 200 miles away, who dont have any other people on there books in this area.
They have only been able to recruit one carer in this area.So they took me on as a family carer.
The carer has been sick for two weeks,none of this seams to be working out very well.
We only need help for sixteen hours per week, NO AGENCY WILL TAKE THIS JOB on for just sixteen hours.I dont know if its because of the hours or the kind of work involved (bowel program).

Now the local PCT has suggested my husband goes into a home whilst the carer is off sick or they will up his care package to five or more hours a day.He does not need five hours per day,the PCT say you have more chance of getting another carering agency, if you dont need her that long just let her sit there. This would be encroaching on our private life.
WHAT A FIASCO! ANYONE ELSE HAD THESE PROBLEMS?
I FEEL ABSOLUTLY DEVASTATED

Edited by Irenec, 27 June 2008 - 07:00 AM.

[Scribbler]

Hi,

I've just read your post and was quite angry, but not surprised by your plight. I'm C4/5 incomplete and have full feeling. I've been injured 50 years; yes, that's right "Fifty Year"!!! Throughout those years I've been very independant, due to a very caring wife who was my nurse; we were married 43 years.

My wife did my bowel care, which was a 10 minute job every day. It was a manual evacuation on the bed, without any emema's so I was lucky.

13 years ago my wife was diagnosed with cancer so we had to use a care agency as I needed a 'Live-In' carer. At first we paid from our savings, but that doesn't last forever. Trying to get funding from our local SS was like getting blood out of a stone, even though they are legally bound to give you the care you requre. I eventually contacted the Spinal Injuries Association here in UK, who took up my fight; within a few months I got 24 hour funding.

I continued using a care agency but wasn't always happy with the carers they sent; some could hardly speak English and others hadn't been properly trained. I then decided to employ my own carers using the Direct Payment method. I realise your situation is different; you've not been given 24 hour live in funding, but you could still employ your own carer for the hours you need.

I advertise in Gumtree and PA pool, 2 websites that you can find carers for live-in or live-out care. You could also advertise locally and do what I do, interview applicants to find someone suitable. You'd be surprised at the number of local people looking for that type of work; even if you have to train them in bowel care, you'll have the continuity that is vital.

I'd contact SIA for some expert advice, also check that your assessed each year so you get the care and funding you need, as the funding goes up each year.

As for your DN service, it all depends on your Primary Care Trust as to what DN's can and cant do. My DN's change my Supra-pubic catheter and would do bowel care but when only when they could fit it in. They are hugely over stretched and cant spend time with patients; they have even had to stop their bereavement visits as the PCT wont fund it anynore. Other than a 10 minute visit to change my SPC every 5 weeks, I've not seen a DN since my wife died a year ago. When my wife was alive, they visited most days or every week for 13 years; but it just stopped when she died.

I still manage my own care, which I find works well but I'd advise you to seek expert adice from the SIA.

Good luck and let me know how you get on.

Mike

[Austyn]

Hi, I live in New Zealand which has a health service run on similar lines to the UK. My partner has had issues with one of his care providers as well. He had a stroke secondary to an episode of AD and his care requirements increased (currently we live 200km apart but we are in the process of moving him down so we can be together). This meant he had to apply directly to the Ministry of Health for more hours of care and of this had been declined, the option was a "rest home". Pretty depressing when you are only 52. Anyway it was approved but his current provider did not have to resources to provide the extra care so anothoer agency had to become involved. And that's when the problems started.

This agency does not provide any assistance with bowel care so if this becomes an issue on the days they are providing care then he has to ring a district nurse for assistance. Often they cannot come out immediately so like your partner, he is stuck in bed until they arrive, whenever that is. Considering his stroke was caused by AD, you would think they would get there ASAP but sadly, like many health professionals they don't seem to know what AD and its causes are. There have also been issues with care givers not turning up at all.

As a result of all this I made a complaint and this has resulted in a HUGE investigation of how this agency is run. I suspect that some of the reason for the extent of the investigation is that I am a nurse and a lawyer and work in a medico-legal job and they got a bit scared! Things have improved somewhat but now on more than one occasion, several care givers have turned up at the same time which I guess is better than no-one but still shows a level of incompetence and disorganisation on the part of the agency.

I don't know about the UK but caregivers in NZ are paid poorly and this oviously does not help with the quality of some of the workers either.

[misstd]

Hi, I am my partners full time carer because the district nurses could not co-ordinate with the carers often coming completely different times of the day?! The DNs would hate doing bowels and often not show up because they said they were 'too busy', yet SS would only allow 1.5 hours per day for personal care (direct payments) because DNs should be doing bowel care, not carers, its a lose lose situation so I now do it and because i live with him and apparently (that dreaded phrase...) "do it out of love" dont qualify for any money for caring for my partner! its such a crazy system! Although I like the fact that I dont have loads of new people coming to my house everyday and I dont mind doing it, I always worry like you what would he do if something happened to me it would be nice to get a emergency back up plan in place but apparently that is just not viable. Please let me know how you get on xx

[Irenec]

misstd, on Jul 9 2008, 09:57 PM, said:

Hi, I am my partners full time carer because the district nurses could not co-ordinate with the carers often coming completely different times of the day?! The DNs would hate doing bowels and often not show up because they said they were 'too busy', yet SS would only allow 1.5 hours per day for personal care (direct payments) because DNs should be doing bowel care, not carers, its a lose lose situation so I now do it and because i live with him and apparently (that dreaded phrase...) "do it out of love" dont qualify for any money for caring for my partner! its such a crazy system! Although I like the fact that I dont have loads of new people coming to my house everyday and I dont mind doing it, I always worry like you what would he do if something happened to me it would be nice to get a emergency back up plan in place but apparently that is just not viable. Please let me know how you get on xx

Hi
See your GP, tell him you need more help,and you need a social worker to arrange for a CONTINUING CARE ASSESMENT. Join the S.I.A. Spinal injuries association.Look on there web site
all about continuing care.Speak to them, ask for there advice.
The assesment is based on clinical needs.Focus on what he cannot do rather than what he can do.

Tell the assesor about the district nurse not being able to do the bowel program, and how dangerous it would be if the bowels were not done properly.
Did your partner go to a spinal unit after his injury? If he did,get them involved to back you up with the assesment.
Fight for what you can.
Over the years this has taken its toll on me,and i am still fighting all the bureaucracy.
I get very tied of it ,but still fight the good fight.

HOPE THIS HELPS
IRENEC

Edited by Irenec, 10 July 2008 - 08:49 AM.

[cate]

I see things have not changed to much over the years, in fact probably have gone down hill with the NHS now. Many years back I used to look after my mother in law who had MS, and was para from the chest down, I had 2 young children and worked, my mother in law social worker told me it was my duty to do all caring necessary. I did what I had to do willingly, but was not trained to do the cath and bowel programmes, neither did I want to. I had a big fight about that, and felt for my mother inlaw that she was having any dignity taken away. So we did get the DN reinstated. my children are now in their late 30-4o, and I still fell angry about that attitude. Sadly my daughter has sci after a car accident, but she is still working and living on her own, I just hope she stays as she is. not get any worse, It seems to me that you have to be your own investigator to find out what help you can get, because it is not forthcoming, seems if you are not offered the help you will not get it, and so save the NHS money, Sorry that was a bit of rant. but I can feel the frustation for you all.
C ate

[misstd]

Irenec, on Jul 10 2008, 07:56 AM, said:

misstd, on Jul 9 2008, 09:57 PM, said:

Hi, I am my partners full time carer because the district nurses could not co-ordinate with the carers often coming completely different times of the day?! The DNs would hate doing bowels and often not show up because they said they were 'too busy', yet SS would only allow 1.5 hours per day for personal care (direct payments) because DNs should be doing bowel care, not carers, its a lose lose situation so I now do it and because i live with him and apparently (that dreaded phrase...) "do it out of love" dont qualify for any money for caring for my partner! its such a crazy system! Although I like the fact that I dont have loads of new people coming to my house everyday and I dont mind doing it, I always worry like you what would he do if something happened to me it would be nice to get a emergency back up plan in place but apparently that is just not viable. Please let me know how you get on xx

Hi
See your GP, tell him you need more help,and you need a social worker to arrange for a CONTINUING CARE ASSESMENT. Join the S.I.A. Spinal injuries association.Look on there web site
all about continuing care.Speak to them, ask for there advice.
The assesment is based on clinical needs.Focus on what he cannot do rather than what he can do.

Tell the assesor about the district nurse not being able to do the bowel program, and how dangerous it would be if the bowels were not done properly.
Did your partner go to a spinal unit after his injury? If he did,get them involved to back you up with the assesment.
Fight for what you can.
Over the years this has taken its toll on me,and i am still fighting all the bureaucracy.
I get very tied of it ,but still fight the good fight.

HOPE THIS HELPS
IRENEC

Hi sorry this is my first time quoting so dont know if ive done it right! thanks for your advice, unfortunately we have had already had a continuing care assessment, they see chris as independant apart from my occaisional help here and there he is really motivated to do things himself (perhaps when they came round he should acted worse off!), thats why we only qualify for 1.5hours a day personal care, not that we really use it as I do it and cant get paid because i live with him, we were at stoke mandeville for a year and have joined the SIA already yet am new to the continuing care phrase so will look into that (I did get the leaflets they sent out but yet to read!!), I know my last post was prob a bit of a rant, I prefer doing my partners bowels to diff nurse everyday as I know his routine and we can fit it into our flexible lives, its just the fact that it shouldnt be that hard to get outside help if needed and it is their job! The DNs come round once a month to change cath and that is a complete shamble everytime, the last time the nurse said to me "Shouldn't you be doing this by now?" I am quite capable of doing it if need be but I dont see why I should have to, I dont get paid for it!! It annoys me sooo much that direct payments cant get paid to partners that live together! here i go ranting again this just gets me so worked up! and my fella has only been injured 2 and a half years I admire you for fighting as long as you have!!
Thankyou for your advice xx

[Irenec]

misstd, on Jul 10 2008, 08:58 PM, said:

Irenec, on Jul 10 2008, 07:56 AM, said:

misstd, on Jul 9 2008, 09:57 PM, said:

Hi, I am my partners full time carer because the district nurses could not co-ordinate with the carers often coming completely different times of the day?! The DNs would hate doing bowels and often not show up because they said they were 'too busy', yet SS would only allow 1.5 hours per day for personal care (direct payments) because DNs should be doing bowel care, not carers, its a lose lose situation so I now do it and because i live with him and apparently (that dreaded phrase...) "do it out of love" dont qualify for any money for caring for my partner! its such a crazy system! Although I like the fact that I dont have loads of new people coming to my house everyday and I dont mind doing it, I always worry like you what would he do if something happened to me it would be nice to get a emergency back up plan in place but apparently that is just not viable. Please let me know how you get on xx

Hi
See your GP, tell him you need more help,and you need a social worker to arrange for a CONTINUING CARE ASSESMENT. Join the S.I.A. Spinal injuries association.Look on there web site
all about continuing care.Speak to them, ask for there advice.
The assesment is based on clinical needs.Focus on what he cannot do rather than what he can do.

Tell the assesor about the district nurse not being able to do the bowel program, and how dangerous it would be if the bowels were not done properly.
Did your partner go to a spinal unit after his injury? If he did,get them involved to back you up with the assesment.
Fight for what you can.
Over the years this has taken its toll on me,and i am still fighting all the bureaucracy.
I get very tied of it ,but still fight the good fight.

HOPE THIS HELPS
IRENEC

Hi sorry this is my first time quoting so dont know if ive done it right! thanks for your advice, unfortunately we have had already had a continuing care assessment, they see chris as independant apart from my occaisional help here and there he is really motivated to do things himself (perhaps when they came round he should acted worse off!), thats why we only qualify for 1.5hours a day personal care, not that we really use it as I do it and cant get paid because i live with him, we were at stoke mandeville for a year and have joined the SIA already yet am new to the continuing care phrase so will look into that (I did get the leaflets they sent out but yet to read!!), I know my last post was prob a bit of a rant, I prefer doing my partners bowels to diff nurse everyday as I know his routine and we can fit it into our flexible lives, its just the fact that it shouldnt be that hard to get outside help if needed and it is their job! The DNs come round once a month to change cath and that is a complete shamble everytime, the last time the nurse said to me "Shouldn't you be doing this by now?" I am quite capable of doing it if need be but I dont see why I should have to, I dont get paid for it!! It annoys me sooo much that direct payments cant get paid to partners that live together! here i go ranting again this just gets me so worked up! and my fella has only been injured 2 and a half years I admire you for fighting as long as you have!!
Thankyou for your advice xx

Hi Again
My husband went to Stoke Mandeville whe he was first injured.He also went back over the years for check ups ect. We never got any help soting the care out.We wanted to be indepentant anyway.
But as you get older you do need reasurance,that there is back up out there.

About 4years ago my husband changed to Stanmore spinal unit. The doctor there was amazed to think we had managed all these years without any help. She also told us that families were not expected to look after patients once they went home.The team there have and are helping us a lot.
Much more than they did at Stoke
Iam really anti district nurses.I know they have rules, but they dont put there selves out for you.

Irenec

[misstd]

yeah me too! hehe I was really impressed with Stanmore have only been there for a visit didnt know you could transfer may look into it as it is nearer for us! Thank you for all ur advice, please keep me updated on your plight!! xx