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Graham
30th April 2015, 12:35
I am left uncared for again.

Not fed, bottles not emptied and no drink, no tissues, still under the duvet.

The care agency say they are short staffed and sent a carer that has been aggressive with me. I have complained about her and stated that she is no longer welcome in my home.

The other carer says that if she is not welcome then I will leave too.

Terry
30th April 2015, 12:57
Oh Graham;

I don't know what to say, surely they have an obligation to make sure you are feed etc. Will any other nursing group assist you soon. Just wondering about if hospice or Marie Curie nurses will come out.

Thoughts are about you, Terry

Night walker
30th April 2015, 13:01
Oh no Graham......
I just don't get your care team. You need to get their supervisor onboard. If the carer does not understand this disease properly then they will not understand you and what your days are like. Do you have anyone who co-manages this all for you?
Could the MND association help sort this out? I remember they have before......
Streuth this is not good, you must get your nourishment else you'll end up in hospital again.
Am so sorry the system seems to pick and choose and you don't get a choice.
Do contact mnda support team to see if they can help.

Sylv xxx

Graham
30th April 2015, 13:08
Hi Terry,

It would seem that there is no obligation.

I have contacted my social services.

It is awful. I was shaking pretty bad as always when I get very stressed.

The choice is very poor care or no care. And I am expected to pay for it!

Graham
30th April 2015, 13:17
Hi Sylv,

The supervisor is the troll-in-chief apparently. Many of the good carers have left on her account.

I am at the Ombudsman stage with all this. So many other problems to deal with too.

Take care

Graham

Graham
30th April 2015, 13:29
My Access to Work support worker is now caring for me in the absence of my 'care' agency.

john
30th April 2015, 14:37
Graham,

Have you tried the hospices or Marie Curie or Macmillan. Alternatively is direct recruitment possible. If you interviewed and hired and paid surely that would get you exactly what you need . There must be a solution that will work for you. Will mnda volunteers not facilitate this?
Do you get continuing health care and if so the NHS become responsible for funding all your care? You sound as if your health is at a stage where you would qualify.
Pm me if you want any help.

John

Graham
30th April 2015, 16:32
Hi John,

I will contact the Police and report wilful neglect.

The council keep assessing me but so far I am under the threshold.

I gave up on the MNDA a long time ago.

Regards

Graham

Nettie B
30th April 2015, 17:13
Graham. Won't your GP push for CHC? I'm sure you will have looked up the criteria and you sure sound as though you'd qualify. This situation would be bad even if you had someone living with you. On your own !!! I don't get OK!
Badger the GP! He/she should sort this!

Terry
30th April 2015, 17:56
Thanks Graham;

Stress is so bad for Mnd, it tenses things up so everything is so much harder. It's handy that your access to support worker is helping.

Do you know much about Personnel budgets, I don't but people have found that they are very good. I don't know if you and me would qualify either.

Love Terry

Rosewall
30th April 2015, 20:22
Hello Graham,
your post really does frighten me because I like you live alone and even though I am not yet diagnosed I fear for the future and if the future is trying to manage without care then its not an option I would like to consider. So very sorry to hear of your plight. In this day and age this should NOT happen.

Graham
5th May 2015, 12:27
Hi John,

There are many scandals that shouldn't happen but do as the persons responsible turn a blind eye. Hence all the child abuse scandals, policing scandals and so on.

You must test your own local services now before you have to rely on them. Then you will know if you have to take any remedial actions yourself.

I will PM you.

Regards

Graham

Graham
6th May 2015, 13:10
I have been sent the same carer that was aggressive and threatening to me last week!!!

I complained to my social services about her and told them that she was unwelcome at my home.

I got highly stressed and my legs started spasming. I had to tell her to go and she said 'fine, you won't be cared for.'

pete
6th May 2015, 13:52
I have been sent the same carer that was aggressive and threatening to me last week!!!

I complained to my social services about her and told them that she was unwelcome at my home.

I got highly stressed and my legs started spasming. I had to tell her to go and she said 'fine, you won't be cared for..

Hi Graham,

Just how many mirrors did you break ?, it seems your doomed to be sent real examples of a system that pays peanuts, and guess what you get in return !!, I showed your post to my relative who works in a care home, she just smiled saying she wasn't surprised by the sub standard service your getting ,in our area alone it's rife, so much for employing reliable and trained staff, it all comes down to money again , The only place I would entertain going is the Hospice ,as far as I can see they do seem to have cornered the market on caring staff. Just to add ,I have seen some of the other side of the coin ,patients who are downright rude and had no reason to be so nasty to nurses, so until this gets the regulation it needs urgently ,I can't see it changing anytime soon, luckily my encounters have all been very good so far . Hope you get sorted ,goes without saying you really don't need this again.

Pete

Terry
6th May 2015, 14:12
Sorry too hear of that again Graham;

If people take a little time and work with me we get it done a lot quicker. Some carers want to do it their way, try to rush me and I lock up. The clothes all go on wrong and socks end up tight and creased in shoes.

What ever happened to the caring part of the carer?

Hope it improves, love Terry

Graham
18th May 2015, 16:47
Today a 20ish year old girl 'carer', who has never been before accompanied another 20ish year old girl carer who has been months previous but never fed me before. I am very concerned.

I type 'Do you know what to do?', knowing full well that neither had a clue. 'Yeah, we've come to feed yer'.

I type 'You haven't a clue'. They then start laughing at me with ridicule.

I have had enough by now and the years of abuse kick in. I type, 'f*** off and get out of my house'. They keep on laughing and the ridicule that I continue to endure off these carers becomes intensely stressful for me. I begin shaking.

I again go unfed.

The girl carers have their own professional standards to improve by not ridiculing severely disabled clients and not diffusing a clearly impossible situation.

The *****l management are at fault for sending two inexperienced carers to feed a client that is at a known risk of choking when eating. The ****** management have a duty to handover care to 'at risk' clients. ***** management have been repremanded previously for sending inexperienced and unfamiliar carers by ******* social services. Including the new face of today, I have had 76 different carers since 07.07.14.

**** social services are at fault for allowing the poor care to persist.

Claire McArthur
18th May 2015, 17:38
Hi Graham, sorry to hear about your current care provision. Just to let you know we have contacted your local social services who are now aware of your situation.

Kind Regards

Claire

Terry
18th May 2015, 18:20
Hi Graham;

Do you have Fortasip type high calorie drinks near you, I keep one by my bed and can open it myself. Not a great meal but OK if very hungry.

I doubt that even my wife could feed me as it's really hard to get the right quantity, right consistency, a reasonable heat and with the correct timing. I also have to concentrate quite a lot so any distraction can make the process impossible. People don't understand that I have to be serious and have to concentrate on every aspect to manage to eat well.

I must admit that what you wrote was quite funny and I can understand them laughing and when two girls start laughing, they probably can't stop. You thought we had emotional problems. But what you said is quite right, they won't have much of a clue.

It is so hard teaching a new person to help us. If we could talk and point it would be easy but not having any straight fingers and having to use a talking machine means that new people have to care and need at least ten times as long.

Don't think that you should have written some of the things but can understand your frustration with the situation. I do look at some things like new carers, that turn up with limited time, what can they do in that time, nothing, and how much effort is it going to take me to teach them. Plus, not seeing them again for a month and having to start again. Frustration is not a strong enough word.

Hope you've got some grub and I'm defiantly not in your situation. I end up upset after having less than a thousandth of what you have had to endure.

I don't know how you do it Graham.

Much love, Terry

PS:- Thanks Claire for that.

Graham
19th May 2015, 16:26
Today the ignorant young 'carer' girl from *****turned up again! 'I need to get used to her', she said. Fat chance of that happening I thought.

I was again given the ultimatum, ban her from my home and I won't get fed. I was starved of food by ******yesterday and so I had no alternative other than to let her in. I shook badly from stress again.

I said that she won't be allowed in tomorrow.

Claire, please help me. There are a number of carers at ****** that I have trained how to feed me and behave. *****social services have no control over the care agency.

The ignorant carer is adamant that she will return tomorrow.

Terry
19th May 2015, 17:04
Sorry Graham that you are treated that way;

She must have thick skin, why have they not got the sense to send her with one that is used to feeding and helping you. It is defiantly not any good for you to have no food all day.

Trust the MNDA will sort it out, Terry

Graham
20th May 2015, 16:43
Today, bold as brass, the young disrespectful 'carer' enters my home and says she has come to feed me.

As I stated yesterday, she is not welcome in my home. The other carer then rhymes of the threat, 'If she isn't welcome, then I will go too'.

I am left starved again by ******. This is very much Great Britain 2015.

Claire, thank you for contacting Salford social services yesterday and the day before. Clearly Salford social services and *****. have chosen not to listen to the MNDA too.

I am now having to consider putting in place my own care arrangements for when Salford Council fail in their duty of care.

Terry
20th May 2015, 17:14
I do hope you can sort out something Graham and quickly. It's so hard to get descent caring people.

Best wishes as always, love Terry

Graham
20th May 2015, 20:24
Hi Terry,

Thank you for your concern. It has been difficult this week. After my harrowing experience in Salford Royal, I have zero tolerance of disrespectful and abusive carers. I was taught to be respectful and polite, so the past 3 years of 'care' from those who just don't understand the basic ettiquette has been very onerous.

I have finally put to bed other even more distressing business, so I will be free to crack on with the Local Government Ombudsman.

Take care Terry.

Graham

Terry
20th May 2015, 20:31
Fingers crossed Graham;

Try to take care of yourself as well.

Regards Terry

Graham
20th May 2015, 21:14
Unbelievably the same carer was sent tonight.

It must be deeply psychological but I have been shaking for half an hour now.

They again threatened to leave me . This is so stressful.

marieline
21st May 2015, 04:11
So sorry to hear your plight Graham. I Like Terry says try and take care of your needs and a solution to this ongoing carer problem. It cannot go on like that.
Best wishes
Marieline

Graham
21st May 2015, 11:54
Hi Claire,

Who did the MNDA speak to at Salford social services and were any commitments given?

Regards

Graham

Claire McArthur
21st May 2015, 14:29
Hi Graham, I've just sent you a PM. Claire

Graham
21st May 2015, 20:38
Hi Claire,

Thank you for your message.

These failures of their duty of care are entirely avoidable. I have provided a list of carers that are competent lead carers(5) and competent support carers(20) at the different visits.

When they deviate from the plan there is inevitably going to be a problem.

Should I be provided with my carers' rotas, I am able to identify when I will be in difficulty.

It is right that safeguarding events were raised by the MNDA. The carers left me without food and drink. Please note that I only have two meals a day.

The Principal Manager of Salford social services sent me a terse message this morning and applied more sanctions on me. He clearly is not going to resolve these issues as I have outlined above.

Regards

Graham

Graham
22nd May 2015, 17:11
Today at my 4pm meal call, the same young rude girl was again sent by ****** I was fearful that she would be sent notwithstanding the promise that she made on Wednesday night that she would no longer visit me.

I immediate went spastic with anger and soon started to shake uncontrolably. I was in no fit state to eat as I choke very easily on food even when I am relaxed and not distracted.

I would not have the girl in my home and so the other girl left me to starve saying, 'Office says that I cannot stay on my own'. Orders, orders. At Nuremburg 1948, people were found guilty of cruelty when the mitigating factor, 'I was only following orders', was thrown out of court.

Salford social services are clearly aware of the situation and that the MNDA has raised a safeguarding alert. I have asserted to Salford social services that their safeguarding system is in fact broken. Salford social services deny this.

I remain unfed and totally afraid of ********and Salford social services. They can act with impunity and harm me at will.

Steve
22nd May 2015, 17:29
for godsake why are they continuing to send this girl?

i really feel for you graham, i am reliant on carers like you.

Graham
23rd May 2015, 11:55
Hi Steve,

Would you consider that you have consistent and reliable carers?

I believe that I have drawn the short straw marked 'Salford social services', but poor care management could be more widespread than I imagine.

Regards

Graham

Steve
23rd May 2015, 12:33
i am very happy with my team. i have 3-4 main carers who know how to care for me and a decent core of secondary support carers.

my social worker is in regular contact to ensure my care provider do what they should.

i would say the failings lie with salford and your provider. i would say 70/30 toward salford, they have to hold the provider to account. they have a duty of care and a responsibility to you and to ensure the funding gets value.

you need someone to bang down some doors on your behalf. hopefully someone from the mnda will take ownership of this problem.

Graham
24th May 2015, 16:46
Hi Steve,

I hope that the Local Government Ombudsman is able to perceive my situation as you have.

The MNDA do make phone calls on my behalf but my care remains poor and the attitude I face is 'take it or leave it '. My social worker has visited once in the past six months and her opinion is that it is me that is the problem.

I am left naked in bed and have not had a stitch of clothing on me since November 2014. The MNDA are aware of this situation too but won't raise more than the handset on a phone.

Are you able to replace the keyboard on your computer? Do you need any help yourself?

Steve
24th May 2015, 17:07
i am on an eyegaze system but the function keys aren't sticking, it is probably a bug. thanks for your concern.

the problem clearly lies with your social worker. she has given your care company free license to treat you how they want. if you complain then it is you who is at fault.

the mnda clearly could do more, a meeting with your social worker, the care company and yourself with the mnda chairing is a way of improving the situation.

Steve
24th May 2015, 19:05
the first line of the mnda's mission is,

'We improve care and support for people with MND, their families and carers.'

do they think they have achieved this in graham's case?

Lycanthrope
25th May 2015, 21:20
Hi Graham x I can't believe this has still not been sorted out. how difficult can it be? is there anyone we can contact or anything we can do to help you? I do worry about you not eating and being left the way you are. tc Becky x

Graham
26th May 2015, 11:33
Hi Steve,

A director of the MNDA did chair a meeting between my social services and I in February to no avail.

I have noticed that the MNDA are now allowing me to name and shame Salford social services.

Hi Becky,

Yes, it is so very disappointing. It is a scandal that is happening in the full glare of social media.

Take care

Graham

Pam S
26th May 2015, 14:09
Graham would it be any use getting your MP or even your local newspaper involved, no one should be left to cope alone in your situation , I feel so sorry for you and wish I could do something to help you. Salford social Services should be named and shamed its disgraceful. Pam S x

Steve
26th May 2015, 14:23
It's a shame no one has followed up on the meeting.

Graham
27th May 2015, 11:10
Hi Steve,

Yes it is. The MNDA have given up trying. I am mindful of the fact that there are several highly paid professionals at the MNDA whose job it has been to assist me. As you point out, they have a mission statement that is legally binding.

Hi Claire,

My last remaining regular carer has been taken off my rota and my other regular carer has got a new morning job that means she will be attending less often. I have lost five other regular carers since Christmas. Salford social services have a legal duty to provide me with consistent and reliable carers.

Hi Pam,

I contacted my MP, Hazel Blears, before Christmas. She was unable to help me.

I have made 35 complaints since I returned home. Salford council has given their final response to 20 of them. I am now writing my decisions on those final responses. It is a laborious process. My target is to send my bundle of documents to the Local Government Ombudsman next week.

Claire McArthur
28th May 2015, 09:40
Hi Graham,

Thanks for letting us know about your carers. I am really sorry to hear that your regular carers will be changing.

As you know last week we were in touch with your local social services on four separate occasions to assist you in trying to get the care you require.

Another phone call is planned with Social Services tomorrow to see how they are working with your care agency to improve the situation.

Best Wishes

Claire

Terry
28th May 2015, 10:55
Hi Graham;

Sorry, but I sent a polite worded email the carers head office late last week. Is there anything that we can do?

I would have thought that they should take you out side once a week or more. It seems so unbelievable that they don't move you, dress you and only feed you twice a week if you are lucky.

Love Terry

Graham
28th May 2015, 11:40
Hi Claire,

Thank you for your efforts. I requested my weekly rota of carers off the ******management at the weekend and on Monday but I have yet to receive it. I will email you my care plan this afternoon that identifies the competent carers that know my care routines. If the care plan is followed there wouldn't be a problem.

Hi Terry,

Thank you for your efforts. I mysteriously received a care quality questionnaire from ****** head office. My Access to Work support worker helped me fill it in. The scores out of four never exceeded 1 and the majority were 0.

My support worker started working for me on the 11th April and to date the DWP has failed to pay the support worker despite several requests. I have had to loan my support worker April's salary out of my personal pocket. Government is incredibly dysfunctional.

Terry
28th May 2015, 11:51
Hi Graham;

It's so hard when these departments don't fore-fill there obligations.

Cc sent me a present for my birthday and Customs just stuck 28 on it that we have to pay before I get it. Might be able to claim it back but it just shows that these departments don't mess around getting the money in at our cost.

Graham
29th May 2015, 12:00
Hi Claire,

Comfort Call Ltd. and Salford Council have now decided to withdraw my care completely. They cite my behaviour.

This is the action of bullies. They want me to accept poor care.

Further they intend to withdraw my care on the 11th June 2015. That is just two weeks.

I would like the MNDA to fully support me now. The termination of the care contract seems too short a notice. Can the MNDA confirm that?

Please can you confirm the details of the MNDA's conversation with Salford Council today?

willsandco
29th May 2015, 12:18
I know it may be a crass suggestion, Graham but have you any near and dear who would come and assist pro tem? Or you could advertise for a companion/carer or is the cost too prohibitive?

It makes me realise how lucky I am to have Peter here because our families are 200 miles away!

I do so hope you can get things sorted out in the next two weeks.

Much love

Joycie x

Terry
29th May 2015, 12:34
Surely we can get some proper care package set up for Graham. Can the hospice help sort out one? Sounds like live in full time carers might be more suited so that he can get off his bed and out. Also three or four meals a day would be good as two meals is not enough.

Two weeks is a very short time to sort this out but it might give him so much better quality of life.

Fingers crossed and if you want me to do anything, Graham

Jan
29th May 2015, 13:51
It is absolutely disgraceful the way you are being treated Graham, it disgusts me that when over 7 million pounds was raised in the IBC last year you are left wanting like this, it is outrageous!

Steve
29th May 2015, 14:20
very very poor.

someone needs to step in now and help graham. this situation has gone on too long.

Barry52
29th May 2015, 14:49
Hi Graham

This is an abuse of your human rights. Can you call Liberty on 08451232307 or 02031450461 and ask them for help. This situation needs elevating to the highest level.

Barry

pete
29th May 2015, 15:52
Words fail me, Graham has had the living nightmare of his existence, not for weeks ,months, it's years and still no solution to what is a disgrace in the care of a human being ,I just count my lucky stars that I don't experience anything so utterly Barbaric,it seems even the most basic of care is being withheld for whatever reasons ,none of which should be allowed to continue day after day with nothing being done.to end this cruel treatment of a vulnerable person, we treat murderers, rapists, child molestsers better than this.
Why isn't the MNDA spending some funds to secure Graham a care package, that will last longer than the few days the others have.
I'm truly disgusted that in this situation is being allowed to continue,or is it simply not newsworthy or a feel good story like those published in our magazine.

Jay_MND
29th May 2015, 15:58
Good afternoon Graham,

We have been contacted by the relevant social services this morning and have been informed of the withdrawal by the agency of the current support offered to you. Further to discussions, we can assure you that every effort is being made by social services to identify an alternative care provider.

Thank you,

Jay

Dude
29th May 2015, 16:06
How do I access auto saved

Jan
29th May 2015, 16:51
Jay, whilst it is all fine and dandy that Social Services are looking for an alternative care provider it has to be remembered that it is the very same Social Services who are speaking with the current support service. Something really has to be done by other sources and not Social Services as it appears that they lay at the very heart of the problems Graham is enduring

Terry
29th May 2015, 17:05
Hi Jay;

I appreciate that the relevant social services are making every effort to find another provider, Is the relevant SS the same ones that feel it is OK to give Graham two meals a day, leave him on his bed with no clothes on and not get him up and outdoors.

If so, have we/you/Mnda any faith in the relevant SS.

I think that it is shallow of the MNDA to rely on these SS, or are they just burying their head in the sand.

He might not the easiest person to deal with but his emotions are affected by this wretched disease.

I spoke to the then new Chief Exc. some three years ago and still Graham's torture goes on.

Please Mnda, I beg of you, do something to improve his situation, ACT NOW.

Very sad, Terry

PS:- I do hope I have got the wrong end of the stick here???

Night walker
29th May 2015, 22:40
Hello MND association,
I felt physically sick when I read this thread tonight.
Graham has almost begged you to step in on his behalf to help him, that is sufficient permission to act on his behalf and I worry you are leaving IT to the Social Services because you "spoke to them". It is perfectly obvious the Social Services are out of their depth on this one as this is not the first epic fail on their part. They do not have the expertise in their ranks at that particular office to resolve this quickly or adequately.
I am not convinced this is going to be resolved by a phone call and I respectfully request along with everyone else on here for you to step in and take control of Graham's care agenda and manage it please. It's more than tragic it's come to this and shameful.
Please agree to help him.
Thanks
Sylvia

Dude
30th May 2015, 08:20
How can social services differ so vastly from town to town. I have a social worker who makes sure all my needs are met. I have the carers from heaven. I have a sleepover carer and carer visits at 11.30am & 3.30pm and put to bed visit at 7.30pm. I have CHC and it doesn't cost a penny, because CHC is not means tested. Surely in 2015 in the UK everyone should get this level of service. The only contact I had with MNDA was a brief visit when I was diagnosed in 2008. I exchange emails with my OT, Speech therapist and dietitian. bi-monthly calls from respiratory team. I have 5 Ensure drinks per day by mouth 6 brews & 4 lattes & the occasionally Walls magnum. Sorted.
I have deduced from reading most of this thread that someone in ***** SS needs a good slap and relieving of their job.
Take care.
Dude.

Steve
30th May 2015, 11:58
i have a similar experience dude, yesterday for example i had a day call that lasted from 2-8pm and a bed call at 10pm along with my normal wake up call. i can do whatever i want within reason. it is all chc funded. i have a social worker and care company who are amazing.

thats why graham's situation breaks my heart, it is a postcode lottery and it shouldn't be, it's not fair. why should he have to put up with such substandard care?

it's the same with ipads, i got one supplied free. i don't use it as often now and offered to return it but was told they have them in store. why do people in other areas have to pay for ipads? these inconsistencies really bug me.

Dude
30th May 2015, 12:20
I'm not convinced it is a postcode lottery Steve, I think it's just people occupying jobs they have no motivition or compassion for, you then get a cascading effect which affects the whole care system. I'm guessing that if you lift the skin on ALL the social services carried out by ****** SS you will find similar cases of neglect and abuse that Graham is suffering.
Regards
Dude.

Steve
30th May 2015, 12:24
you might be right unfortunately.

Terry
31st May 2015, 12:28
Good to see you on line again Graham, I was a bit concerned.

With you, Terry

Graham
31st May 2015, 12:59
Good afternoon Graham,

We have been contacted by the relevant social services this morning and have been informed of the withdrawal by the agency of the current support offered to you. Further to discussions, we can assure you that every effort is being made by social services to identify an alternative care provider.

Thank you,

Jay

Hello Jay,

Your private message to me is actionable as it defames my character. It cites a reason that carers have left the agency includes because 'they don't want to work with me'.

You are clearly siding with Salford social services and the care agency. You are exerting psychological pressure on me so that I should accept incompetent care.

The carers are able to choose who they care for, are they not (rhetorical)?

I have enjoyed a good relationship with my regular carers, who have since resigned. I was sad to see them leave but I understood when they cited their reasons to me why they left, which included bullying from head office, having to pay for petrol between visits and better terms and conditions with other agencies.

Let me advise the MNDA that I will not be leaving my home on the 11th June 2015. I have had these threats before from Salford on other occasions. I was 'temporarily' put in Salford Royal Infirmary for 23 months. Salford uses these terms as Stalin did when he sent his 'friends' to Siberia for a 'break'.

Graham
31st May 2015, 13:10
Hi Terry,

'Tough as old boots', just like my late mother.

Been very busy writing my Local Government Ombudsman reports.

Had a few chess games with Masters playing for Team England on chess.com. There is a big match coming up against Russia. We had over 400 players last year. You could join in the battle!

Graham
1st June 2015, 13:04
Dear All,

Thank you for all your support. It has bolstered me in these difficult times.

Incredibly the Principal Manager of ******* is now on annual leave and returns on the week that my care package terminates. So much for 'making every effort'. The MNDA must have been aware of this in their discussions with the Principal Manager last Friday.

I have had a regular carer since last week so my care has been satisfactory.

pete
1st June 2015, 13:11
Hi Graham,

Well any improvement in the care you have been getting must be a positive, just hope it gets better when you finally get it sorted, it really shouldn't be like this for anyone , will be keeping everything crossed for you.

Pete

Graham
2nd June 2015, 11:01
Hi Pete,

I have just nine days left to resolve my care provision. ****** haven't consulted with me as they said they would and the MNDA have not contacted me with any support.

Today I will be seeking legal intervention to block the premature termination of my care contract, starting with the LGO.

(You look cool on your mean machine!)

Dude
2nd June 2015, 11:30
Hi Graham What about appealling to your current care provider to start over again.
I am, like everybody , appalled at your past treatment, but might be worth a try.
Take care
Dude

Graham
5th June 2015, 11:49
Hi Dude,

The management at the agency have no understanding of my care needs. Giving in to their poor care management would condemn me to living the rest of my life in fear of them. Mealtimes are traumatic without my regular carers as are personal care times.

Six days to go and ************ have not contacted me with any plans. I am now making my own arrangements.

The Local Government Ombudsman will rule within 18 days.

Take care.

Dude
5th June 2015, 13:48
Hi Graham It was just an idea, maybe to buy you some time between carers. Good luck. Dude.

Terry
5th June 2015, 17:35
Hope you can sort out some carers Graham;

Terry

Graham
6th June 2015, 10:57
Hi Dude,

I appreciate your concern and you make reasonable suggestions. Unfortunately I am dealing with unreasonable people who consistently fail to understand my care needs.

Hi Jay,

I waited nearly two years for ******* social services to make arrangements for me to return home. It was only the intervention of my MP that sparked them into action after all that time. You are aware of my current difficulties with ******* social services and your suggestion that I should 'rest assured' that ******* social services will resolve my care needs is incredibly naive.

Hi Claire, Terry,

In the absence of any advice of my care arrangements for next week, I have decided to employ a lead care worker. I have provided a contract of employment. I will start recruiting my team of carers on Monday.

I ask/demand that the MNDA provide me with funding for my care package in this interim period. The cost of my weekly care has been 979/week, although I aim to provide me with a much better standard of care for less.

Regards

Graham

Terry
6th June 2015, 11:16
Pleased to hear that you have moved forward and I hope you can find some descent carers.

I would hope that you can get the money from Social Services, especially if it works out cheaper. I would hope that the Mnda do bridge any gap and reclaim their/our money back.

Keep us informed and if there's anything that I can do or write, let me know.

Love Terry

Dude
6th June 2015, 11:20
Hi Graham I started by paying privately for carers until my CHC then I got every penny refunded. I do not know if you are in a position, financially, to do this or maybe MNDA can finance knowing they will receive reimbursement. Best wishes Dude

Graham
7th June 2015, 10:46
Hi Dude,

Thanks for that. It is good information. The rates of pay that I am using is 10/hour for my lead carer and 12.50/hour at weekend then 8.50/hour for support carers with 10/hour at weekend. I have employers insurance with MicroProducts Systems Ltd, my company. The job specifications are done for the support carers, which demands DBS checks and proof of UK citizenship. Essential skills are being friendly and patient with the ability to read body language. Desirable skills are having worked in a care environment. I will place the job advertisement with Job Centre Plus on Tuesday.

Hi Terry,

Four days to go and the MNDA have provided me with effectively no support. If you hold any sway with our MNDA, now would be a good time to influence them. The Local Government Ombudsman should order Salford council to refund the care money within four weeks.

Take care

Graham

Terry
7th June 2015, 11:52
I have written to them before about Mnda patients. They can't really discuss personal things but they do take a bit of notice as does the local Mnda branches, (if you are lucky enough to have one).

i will email them, can't do any harm, might be good if others can. Will also look for your local branch and do the same.

I can't see much of a problem in them funding/lending the money for a couple of months, I would hope they have plenty in the bank at the moment.

As for my influence, it's getting less and less, I have had to resign from the hospice committee because the management seemed to be working against us and it made my effective position stressful and ETC.

It's not good if I upset the managers that will sometimes care for you and have to fight against them and I can't just let logical things go, perhaps I am a little like you.

Try to relax a little, I have such problems doing that. Even communicating stresses me quite a lot so that my shoulders, arms and legs tighten.

Sad to hear of Dia's situation.

Love Terry

louise
7th June 2015, 12:05
Surely you are eligible for CHC we have that now. I was struggling to work full time while caring for my husband. It wasn't until I became ill that we had help. And I must say they did pull out the stops for us. We now have through the night care and someone with my husband until I get home.
Do you not have anyone to help sort these carers out. You should not have to put up with this. I have got rid of a couple of carers that I didn't feel happy with. Not that they were neglecting my husband but one was a little rough with him. I hope you get sorted soon.

Graham
8th June 2015, 11:54
Hi Terry,

I know what you mean when you say muscles tighten up when you get stressed. I start shaking soon after as well. My tongue is also affected when I am being fed and my carer stresses me by missing my mouth and getting food all over me, burns my mouth with hot food, snags the spoon on my teeth, puts the spoon in too far, puts the food on my lips, puts the spoon in sideways etc etc. I never knew that feeding was a skill!

Sorry to hear that your care managers are also abusing their position of authority too. The NHS is full of managers that will go to any lengths to get their way. It is a major concern for Government.

Hi Louise,

I have been through a few CHC assessments and I have been denied CHC. I am unable to talk, yet I only scored 'Low' in the communication domain. I have been bedridden for over two years, yet I only score 'Medium' in the mobility domain. I have severe emotional lability, yet I don't score in the behaviour domain. I recognise that the system is broken and open to abuse by NHS management.



A carer said to me last night that she will see me next week. Maybe she knows something that I don't.

Take care

Graham

Dude
8th June 2015, 12:47
Hi Graham Just a comment on being fed by multiple carers who will all have their own particular method of feeding you. Why not consider changing to Ensure drinks only, which will remove this area of frustration you are being subjected to. To drink an Ensure takes 5 minutes tops. No frustration, no burned lips and all the nutrition you need. Regards Dude

Terry
8th June 2015, 19:20
Hi Dude;

I think that we have few pleasures in our lives and we aim to keep them as long as possible. I don't think that many people could feed me if I could not do it myself. I don't think that most carers appreciate the difficulties that we have, our swallow is one of atleast five things.

Terry

Dude
8th June 2015, 19:29
Hi Terry I was suggesting just taking one 'problem' out of Grahams' life. The picture Graham paints is not one of enjoying his meals. Regards Dude.

Terry
8th June 2015, 20:28
Very true Dude, your reasoning is sound but it's not nice to give things up when you still can do them.

Regards Terry

Graham
9th June 2015, 11:09
Hi Dude,

I was thinking forward to the massive upheaval Salford social services have planned for me. It sends shivers down my spine just thinking about it. Terry is right. When you a long way down the road with MND, it is better to hang onto the things you have and not to give in to suggestions that make the carers life even easier. It was suggested by my nursing service that I should use morphine to negate the pain when my carers handle me. I refused and demanded competent carers.

Hi Claire,

I need the MNDA's decision today, on whether they will give financial support for my care package.

Regards

Graham

Dude
9th June 2015, 12:05
Hi Graham I can assure you that I was only thinking about you.
We are ALL watching MNDA.
Good luck
Dude

Graham
10th June 2015, 11:29
Hi Dude,

I very much appreciate your ongoing concern and of course I know that you were making suggestions that could be of help.

It is a dire situation created by people with no understanding of how to manage care. I have tried to entice one of my regular carers to join my care team by offering her a 1,000 golden hello. Desperate times call for desperate measures.

The MNDA say that they will provide no bridging funding for my care. I have asked the MNDA to help me access my council care budget of 979/week.

Regards

Terry
10th June 2015, 12:02
You would think that the Mnda would give you 8,000 to get you up and running. All that money for the Ice bucket challenge and they are not helping much one of it's most poorly cared for persons.

Dear Mnda, the money is only earning 4% at the best, lend or give some to Graham. Do something positive that will change someones life.

I don't think that many of you can imagine what his going through and has endured. I can't even though I have similar problems to him. So for anyone to think that they do, dream on.

Please please help Graham

Graham
10th June 2015, 13:20
Hi Terry,

If I could get my hands on my care budget, I could construct my own care package very comfortably.

The MNDA seem to have their own priorities that don't include the welfare of its members who are in serious difficulty.

Thank you for all your efforts. You are a true gentleman.

Love Graham

Claire McArthur
10th June 2015, 16:29
Hi Terry,

Thanks for your post. At the Association we take any issues facing our members seriously, and we represent many complex care cases on behalf of our members as we have with Graham.

However, it is not possible is for us to fund care provision which is the responsibility of statutory services, you will appreciate a charity would not be in a position to provide this level of support to all of its members.

We continue to be in touch with Graham and his social work team to resolve his current care provision.

Best wishes

ccinjersey
10th June 2015, 16:52
It’s always a sad day when bureaucracy seems to take precedence over the dire needs of our fellow human beings.

How much does one man have to endure? And the more important question is, why?

I cannot fathom or come up with one reason why the Ice Bucket Challenge funds raised to help those living and dying with this illness cannot assist Graham in desperate times of need.

Was there not millions raised, in comparison to those in need? Not enough money???

Just my opinion.
CCxox

Dude
10th June 2015, 17:15
Hi Claire I feel your viewpoint on behalf of the MNDA lacks empathy and substance. All relatives and friends raised money, not only for research but to assist those of us who 'suffer' with MND. ALL your members are not asking or help, most of us have excellent care packages in place. I wonder if you actually offer any serious assistance to people with MND ?. I'm begining to have my doubts. Dude.

Terry
10th June 2015, 17:34
Thanks Claire;

Surely, Graham's situation is a one off and the money should come back anyway. I doubt it's not much good us discussing Grahams needs and what the Mnda can do. He finds himself in a bad situation and is trying hard by himself to get him out of it.

Cc so well putts it:- It’s always a sad day when bureaucracy seems to take precedence over the dire needs of our fellow human beings.

I could do more for Graham, I feel like I've let him down. I am off collecting money for our Mnda in the town center Saturday, I wish that money would go to him as a loan or gift.

Terry

Steve
10th June 2015, 17:35
the mnda have got this wrong.

you have to look at us individually instead of assuming this sets some kind of precedent.

Springtime
10th June 2015, 17:43
I can see both points of view here. If Mnda say yes to one person, it opens the floodgates up for everyone to want more from the fund. And so it's where to draw the line.
I also feel deeply for the state Graham has been left in, he is constantly trying to strive forward.
So how about us raising money just for Graham. We could gift whatever we could afford to MNDA and they could pass it on. That would help in the short term, and possibly someone on here could come up with a long term financial solution. X

Terry
10th June 2015, 17:55
I think that his sorted long term he just needs help now!!

I wish I could have a bucket out for him on Saturday Zep, I know he would return the donations to OUR Mnda when he gets it back for Social services.

Terry

Steve
10th June 2015, 18:09
If Mnda say yes to one person, it opens the floodgates up for everyone to want more from the fund.


why? i don't see why they can't be pragmatic.

how many situations will be like graham's? furthermore i am comfortable with them helping those with no one else to turn to.

ccinjersey
10th June 2015, 18:18
Well said Zip, but I wish I could see, and understand mnda's prospective. The funds have already been raised for Graham, and all others dealing with this illness, and in need. It comes in the form of the IBC money, and should be administered 'now' to him to address his needs.

CCxoxo

Dude
10th June 2015, 18:19
I can't see any floodgates. Injustice will triumph if MNDA don't respond to this specific situation. How hard can it be.

Springtime
10th June 2015, 18:38
Mnda will be criticised if they do, and criticised if they don't. Just my opinion.

Dude
10th June 2015, 18:50
Evil triumphs when good men stand by and do nothing. Lol Loving the banter.com Dude x

Jan
10th June 2015, 19:18
For the life of me I cannot see why the Association can't help Graham, the IBC happened at around the time I was formally diagnosed and I have lost count of the friends and family who immediately did the IBC and contributed to the appeal, other friends raised money through other challenges. Only today I have read on this forum that Joycie's local MNDA contributed towards her stay in a hotel in London which is very kind of them, why cannot Graham be assisted? Sorry but I am really at a loss here, very confused

john
10th June 2015, 20:06
I could relate to mnda if Graham needed long term support but he doesn't . All he is asking is that they stomp up 8K until his care package is properly sorted. A loan for however long it takes. If they lose the income from the investment of that for however long it takes Salford to get this sorted how much can that be? If they earn 3% on their(our) money that is 240 per year, 20 per month. I will gladly pay that if they will step in here and really feel they cannot afford to offer this help.
I agree with everyone that the ice bucket millions were a windfall for the mnda and most giving did so with a view to helping research and those suffering with mnd. How can there be more merit in buying an I pad or bio toilet than in stepping up with a loan to someone in need. I cannot see that this would breach their constitution rules as far a charitable act is concerned.
Come on Claire let's have a display of humanity and let's stop acting like jobs worths.

John

Terry
10th June 2015, 20:30
I agree with you John and I know you don't hold Claire responsible. It's the Mnda that are jobs worths.

It was me that suggested 8,000 as this would give the SS time to reimburse, I think that Graham was asking for a months funding, that's 4,000. Like all good accountants, I like to air on the side of safety and have plenty of spare time.

They believe that they give people money for a number of different things that are not common knowledge, all to benefit individuals.

This probably wouldn't be a gift, it would just keep Graham safe.

Terry

Steve
10th June 2015, 20:32
thinking... can we do anything? i know time is against us.

Terry
10th June 2015, 20:37
Lobby the Mnda, Write, email and ring them.

Or, we could try and lend him the money but I don't think there's enough of us Steve.

Regards Terry

Steve
10th June 2015, 20:41
i agree, it would take months to raise.

Lycanthrope
10th June 2015, 23:57
Who do we email at MNDA about Graham's plight? I wish I had a fraction of the money raised from the IBC and I'd gladly help out. I don't understand how the MNDA can stand by whilst Graham is left unfed and uncared for, because they're worried other people might ask for help too. This has gone on far too long - what can we do to help Graham?

Becky xx

Terry
11th June 2015, 11:28
Mnda connect will past your emails to the relevant people and tell you they have do so. You could also look up the Manchester branch and email them.

You don't have to be a forum member to do this, so if you don't feel able to post you might still make a difference.

His MP would also be good to email, perhaps Graham could give that name and email address if he thinks it could do any good.

I did send a polite email his carers head office but other that received return I've heard nothing.

Terry

Graham
11th June 2015, 11:50
Hi All,

Thank you all for your continuing support, it means a lot as I am very isolated and vulnerable to the Council's actions.

My Access to Work support worker is rising to the challenge that Salford Council has set us.

I received a letter from Salford Council's Strategic Director. It outlined the reason for ****** **** withdrawing their support. I challenged those reasons and it is with the Local Government Ombudsman. I was offered a place in a home. I absolutely refused to be put in a home. (I remain naked, it would be like transporting livestock).

Salford Council will fail in their duty of care for me next week. I will be totally reliant on my Access to Work support worker.

I will learn today if my second carer will join my team. Job Centre Plus is now advertising my care vacancies.

Salford council has arranged a care agency manager to visit me this afternoon.

That is the update friends.

Regards

Graham

Graham
11th June 2015, 12:07
Hi Terry,

My MP is Ms Long Bailey MP. I have sent her two messages over the past two weeks regarding another problem that I have. The problem being that I am the sole director of MicoProducts Systems Ltd. and I cannot access the company's bank accounts and both Barclays and the Bank of Scotland refuse to assist. Consequently I am running the company out of my personal account at the moment. The DWP has failed to pay my Access to Work support worker on time for the last two months so I have had to provide loans the past two months. Ms Long Bailey MP has not responded to either of my letters.

I will provide my MP's email this afternoon when I get on my laptop, thanks.

Love Graham

Terry
11th June 2015, 12:18
So Please write to her as well, I guess you will need Grahams surname, mind you if you head it Graham Mnd and send them soon I will do the same with his full name. rebecca.longbailey.mp@parliament.uk

It won't do any harm, Terry

Dude
11th June 2015, 12:41
Graham I assume you have not appointed anyone Power of attorney as they could access your business account.
Can your accountant offer any help or advice. Regards Dude.

Graham
11th June 2015, 13:01
Hi Dude,

That is exactly what the Bank of Scotland said along with, 'Why do you want to run a business?'. I gave my brother a temporary power of attorney for pursuing Showtrax International Ltd. through the courts for unpaid debts. He got some of the 19K back, but it got messy and now I have a Police investigation into the dealings. When some people know that you are vulnerable and 'dying', there is no stopping them. My brother was my accountant.

Dude
11th June 2015, 13:27
Bloody hell Graham, it just gets worse. I won't ask anymore questions.

Graham
11th June 2015, 14:05
Dear All,

Thank you for your lobbying. Here is my MP's response: -

Dear Salford and Eccles constituent,


Thank you for contacting Rebecca Long Bailey MP.


As Ms Long Bailey is a new Member of Parliament, you will appreciate that we are still in the process of setting up a constituency office to aid us with helping constituents with various pieces of case work. Unfortunately, we are receiving a very large level of emails daily at the moment and as such we would kindly ask for your patience with regards to your query/queries. Please rest assured that we have received your correspondence and it will be responded to as soon as possible.


In the meantime, we would kindly ask that if you have not already provided us in your original email with your full name, full address including your post code, best contact number and an email address, could you please forward those details to us as soon as possible.


Kindest Regards,

Rebecca Long Bailey MP


... She has been in office for over a month now. Seems that everything in Salford takes time.......

pete
11th June 2015, 14:07
Hi Terry,

It's a sad day ,but not really surprised by the MNDA not stepping in ,when we all agree with funding Graham's current problems would be the the right thing to do by a charity set up to help its members, they would rather sit on the funds and continue funding research that has so far not led to much in the way of any direct help to anyone suffering with the daily struggle with MND, however money isn't spared on meetings and get togethers , if they are so concerned about the opening of the floodgates of other claims ,then why set up a charity if it's not to help situations like Graham's , why did they not deal with this privately ,rather than see this shameful situation being discussed on a open forum. Nothing we say will make any difference to this situation ,and I hope all reading this thread count themselves very lucky not to be in Graham's situation and receive the help he hasn't had to end this disgraceful treatment of a member in dire need.

ccinjersey
11th June 2015, 15:43
There does seem to be a gross injustice when a charitable organization that has received Millions (IBC) to assist those they represent, refuses to do so. In my book there is no reasonable or justified ‘excuse’ for it.

People donated generously with the full intent to help those living with ALS, and in search for a cure. Not to sit in a bank account. I do remember a thread posted by mnda providing the breakdown of their intent on how the IBC money was going to be spent. Is it possible that Graham’s healthcare needs do not fit into any of those categories ?

The last amount I read was 5.5 Million was raised here in the US by the IBC. The statistic is 30,000 Americans living with ALS at any given time. My beloved friend has not benefited from one cent of it. Here needs are great, and have been met thru her private insurance company. The scale is not balancing in my view in favor of those in need who are living every moment with this illness, and the astronomical amount of money raised.

There is the ALS Guardian Angel organization that is based in the US. Their sole purpose is to provide help in all forms to meet the needs of people living with this disease. It’s worth the effort to reach out to them as well on Graham’s behalf, and maybe some assistance will come his way.

CCxox

Barry52
11th June 2015, 18:11
The reply from Rebecca Long Bailey beggars belief. She obviously has no idea of the urgency required when dealing with MND. I worry that Graham will have to become a martyr before the media, MNDA, politicians or social services take note of his plight.

Dude
11th June 2015, 18:50
Here, here Pete . The clue is in the word 'Charity'. I appreciate the MNDA might not choose to discuss a member's specific case in an open forum, but Claire has already given us her 'floodgate' explanation. I know bullshit when I see it. Maybe MND sufferers should set up our own company & bank account that will allow our friends and family to donate sponsorship to, knowing full well it is being used for the health & wellbeing of specific needs. Alteratively the MNDA could 'Ringfence' 1% of money raised to be used for cases such as Graham's.
The rubber stamp reply from Ms Long-Bailey is par for the course for most MP's.

Charity : The practice of being benevolent, giving & sharing.

Dude.

Terry
11th June 2015, 18:59
Hi Dude;

I'm always attacking you, LOL, I know you're heart is in the right place.

Does Stephen Hawkin let someone have control of his pennies, I think not. He is in a lot worse condition than most of us and he can do it. So can we, it is our right and in this day and age bank and finances should be easy for use to do. Aim for your rights and equal ones at that.

Four years ago I had a bank person say to my wife that she needs power of attorney over me. Now I'm looking at being a treasurer of a group and opening a account from the same bank.

In many cases it would be better to get power of attorney as it makes moving money a lot easier in the end.

Love Terry

Steve
11th June 2015, 19:13
let her know your view

rebecca.longbailey.mp@parliament.uk

Steve
11th June 2015, 19:19
better still,

https://twitter.com/rlong_bailey

https://www.facebook.com/Rebecca4salford

much more public.

Dude
11th June 2015, 19:36
No worries Tel, water off a duck's back. Take care. Dude.

Dude
11th June 2015, 19:37
Nice one Steve.

Claire McArthur
11th June 2015, 21:45
Dear All,

Thank you for your continued support and concern for Graham. As you are aware from the numerous threads that have appeared on our forum over the last few years we have supported Graham and helped facilitate his care provision and we will continue to do so as we do for numerous others with MND.

Over this period there have been many options identified to ease the issues that Graham is facing but he has chosen independently to take certain routes for his ongoing-care. We have offered and continue to offer support locally.

What is not possible is for us to fund care provision. This is the responsibility of statutory services (the NHS and Local Authority Services), and you will appreciate a charity would not be in a position to provide this level of support to its members.

Statutory services are provided by the local social services and as providers they must assess the risks to an individual’s health and safety during any care or treatment and make sure any staff employed have the qualifications, competence, skills and experience to keep them safe. You can find more detailed guidance on the Care Quality Commission website who are the independent regulator of health and social care in England: http://www.cqc.org.uk/content/fundamental-standards Therefore the decisions around Graham's care rightly sit with Graham and the team in social services who are working hard to resolve the current situation.

The local branch and our services have and do support those in the local area with MND and we continue to talk to Graham to extend that support within the guidelines agreed with our members and Board of Trustees.

Anyone who is interested in how the IBC money has been invested can find the information here: http://www.mndassociation.org/news-and-events/awareness-campaigns/last-summer/thanks-to-you/ Decisions on what to spend the IBC money on were made following consultation with our members and approved by our Board of Trustees – all of whom have a personal connection to MND.

This is a very complex case that, as you, we hope is resolved as quickly as possible. We continue to be in close contact with Graham and will support as appropriate.

Kind Regards

Claire

Lycanthrope
12th June 2015, 00:13
All I know is Graham needs help and he's not getting it. Thanks Graham, Terry and Steve for giving us email addresses to contact. I've emailed the MNDA and Graham's MP in the hope they'll do something to help. is there anything else we can do? tc Graham x

Becky x

Dude
12th June 2015, 08:00
Hi Claire Thank you for your comprehensive explanation. Keep up the good work. Regards Dude.

ccinjersey
12th June 2015, 11:44
7 MILLION RAISED ON CHARTIABLE DONATIONS. Given with the intent to help those living with als. In the breakdown of categories of how this money will be spent, I'm curious to understand where would a person in Graham situation fall under to get the help and assistance he needs?? The two categories below would seem like the possibilities. I think he would fall under the very last sentence.

CC xox


1.5 million invested in our Care and Support services

•We currently fund 19 multi-disciplinary Care Centres and Networks across England, Wales and Northern Ireland. We are delighted to announce that, in addition to the 20th Centre to which we had already committed, the extra funding will allow us to establish a further two centres over the next three years.
•We will recruit four specialist MND nurses to help provide the best possible co-ordinated care and target areas of most need.
•We will also look at how we can provide more support for children and young people.

750,000 on increased Campaigning and Raising Awareness

200 People with MND tell us how important it is that people know about MND and have an understanding of what it is. We will use some of the IBC money to build on the unprecedented level of exposure it gave us to invest in powerful awareness and campaigning activities which will help ensure that the needs and rights of people with MND are recognised and met.

john
12th June 2015, 11:52
CC

I don't think that means they are spending money on people. Instead they are spending money trying to persuade others to look after people with mnd.

JOHN

Graham
12th June 2015, 11:59
Hi All,

I strongly disagree with the MNDA's statement that is put out by Claire. Many old timers of the forum will recognise that the statement misrepresents history.

Update

The carer that I tried to entice with the 'golden hello' declined to join my care team. She wanted to spend more time with her 3-years old son.

I had a good meeting with the manager of a care agency that Salford social services found for me. I was able to discuss my care history. The manager was able to tell me of other clients they have that also suffer MND. I was told of another client that had had a severe stroke and had been left paralysed from the neck down. The client had previously had 130 different carers in a 12 month period. The client was also unable to talk and had been condemned as aggressive and uncooperative when in fact the client was frustrated by poor care management. The care agency will work in collaboration with my DWP Access to Work support worker and Personal Assistant. I decided that I will accept the care agency and the care agency will start providing care from the 19th June.

Ms Long Bailey MP's secretary emailed me further to yesterday's message in response to further a further email that Terry had sent. I was able to confirm that I now have no care provision other than that offered by my Access to Work support worker.

Regards

Graham

Terry
12th June 2015, 12:17
Hi Claire;

Thanks for your explanation but I don't think Graham had any option but to try to employ people to have any care. It is not easy to do it that way but the only other thing on the table was a nursing home.

Hi Graham;

Good news then??? Is that the same care agency or a new one. Are they planning in clothing you and moving you maybe outside for a while.

It would be great if you can get reasonable care and not have the extra pressure of employing people although that would probably give you people that know how to feed you etc.

Best wishes, love Terry

ccinjersey
12th June 2015, 12:35
That really is shameful then John. Then there are no provisions made out of that 7 Million to go 'directly into the hands' of those living with this illness on a daily basis to address their financial, physical, mental, emotional needs ?? Maybe I'm missing something here???

I guess I'm just having a hard time comprehending this amount of money not directly effecting, and having a positive impact on the one's that need it the most, as it was given, and intended to do.

CCxox

Terry
12th June 2015, 12:47
It's good to hear that my MP's poorly written email was acted upon and maybe our emails to the Mnda into a semi formal response.

Good luck maybe, let's hope it continues, love Terry

Graham
12th June 2015, 13:40
Hi Terry,

Yes, you are correct when you say that the only option that was available was a nursing home. Yes, you are correct when you say that I had to make my own arrangements to provide myself with care.

Salford social services are now sending me emergency carers. I have handed over care to my lead carer until the new care agency joins my team. I will reject the emergency carers. They will not know procedures in any event and just cause more confusion.

Yes, this is good news. I now have a DWP support worker and Personal Assistant that I can trust. The new care agency seems to be caring. I should hear from the Local Government Ombudsman shortly and be awarded Direct Payments and a social life.

Love Graham

Barry52
12th June 2015, 16:48
Hi CC,
You say maybe you are missing the point so let me just say that the funds raised on behalf of MNDA do get used, in part, for research and funding towards equipment to make life easier for us and our families. Please be assured that I am not taking the side of MNDA when it comes to Graham's appalling situation. I just want to put things in perspective.

I and my fellow committee raise 10's of thousands every year for the LIncolnshire MNDA group and I know we have used this money to good effect by giving grants, sanctioned by HO, for equipment, holiday breaks and home conversions to mention but a few. I am sure this happens all over the country and many of us will have experienced these grants. If not I suggest you visit your local branch and if you ask for help I'm certain it will be offered. All of the MNDA personnel I have met during my three and a half years involvement, work tirelessly for our benefit and it is easy in this emotive scenario, especially for new forumites to get the wrong impression of the value of this organisation.

Getting back to Graham, there are numerous organisations and people who have let him down and we all support his right to proper and safe care. It does seem like he is making progress of late. Keep us posted Graham.

Best wishes
Barry

john
12th June 2015, 17:17
CC,

I DONT THINK YOU ARE MISSING THE POINT. YOU ASKED IF ANY ICE BUCKET MONEY WAS USED FOR MND PATIENTS BENEFIT. READING THE MNDA STATEMENT CLAIRE POSTED THEN THE ANSWER IS NO. The money Barry and his contemporaries are raising is ongoing but Graham has been in touch with his local branch in the past seeking help and from what I recollect has received none.

John

ccinjersey
12th June 2015, 18:21
Thanks Guys :)

I guess I'm just having a hard time wrapping my mind around 7 Million in donations for people living with this illness, and trying to understand Grahams ongoing, endless plight of pleas for help and assistance.

There was a post here stating Graham needed 4,000 to help get himself situated with his healthcare needs. Mnda has 7 Million in funds donated by people wanting to help those in Grahams situation...so what exactly is the problem here??? That's where I get stumped.

Don't misunderstand, I'm not saying mnda does not do a world of good, but be assured if I was' leading' a charitable organization, and had 7 million in my bank account, and a person I represent, and suppose to be an advocate for was in dire need....Problem solved.

CC xox

GrannieAnnie
12th June 2015, 19:42
Hello CC, I understand where you are coming from and my son-in-law ran the London Marathon for MND and we raised nearly 6,000 and I would like to think it is all going to good use. He will run again next year and we hope to do the same again. Lots and lots of people work really hard raising money and we all hope that It goes to good causes. A x

ccinjersey
12th June 2015, 23:32
How wonderful for him Anna, I wish him continued good luck, and success in doing that for a great cause.

Yes, we always want to believe that those that can make a difference are doing the right thing, and I believe for the most part that they do.

I can remember after the events of 9/11 the outpouring of heartfelt donations not just from within my country, but from around the world ! Talk about the floodgates opening! That was on a whole other level, people faking their own deaths for a hand out.

I admire the founder of the ALS Guardian Angels organization. He makes it clear his donations are not for research, but directly for the needs of those being affected by this illness. Again, don’t misunderstand I know the importance of research, but in my opinion somewhere within that 7 million provisions should be made to assist those that could find themselves in unique, and difficult situations caused by this illness as Graham has.

If we don’t help each other…who will?

Just my opinion
xox

GrannieAnnie
13th June 2015, 12:46
I agree. If they could just find something that would alleviate some of the symptoms it would be good. I've tried so hard to find research that I may help with but so far nothing and all the time people are being diagnosed with this ghastly disease. All we have really is hope of some breakthrough. x

Graham
14th June 2015, 12:08
Hi All,

The past week has been as stressful as ever with my existence yet again hanging in the balance. The care home 'choice' would have been a nail in my coffin and the huge upheaval of a new care agency being thrust upon me that is based 20 miles away was the other 'choice' I faced that would have been the alternative nail in my coffin.

My escape plan worked with my DWP support worker stepping into the extra role as my Lead Carer. The relief I have is indescribable but I can say that I slept most of yesterday as a consequence. My DWP support worker had provided my emergency care previously when the care agency had left me to starve and I arranged a handover of care for the evening call. It was a seamless transition.

Already good progress is being made. My washing machine has been brought into service and the excrement encrusted towel that covers my modesty as I lie naked in bed has been washed. It is the first time in a month that the towel has been washed. The previous carers weren't prepared to take it to the laundrette. Because my socks can be washed at will, I could 'choose' to change them and have my feet washed. I have had my feet washed three or four times since the 7th July 2014.

Ms Long Bailey MP's caseworker will contact me shortly to resolve my other issues.

Progress is being made but I must work hard next week to secure my freedom.

Regards

Graham

Dude
14th June 2015, 12:20
Hi Graham So glad to hear things have got better for you. Take care. Dude

Lycanthrope
14th June 2015, 13:31
That's great news Graham. Keep us posted and let us know if we can do anything to help. tc xx Becky

Barry52
14th June 2015, 14:15
Hi Graham,
I'm pleased you're feeling more confident about your care plan and with only 2 nails in your coffin it should be easy to get the lid off lol.

Barry

BlueEyesOhio
14th June 2015, 22:26
Graham,
So glad your care is getting sorted. NO ONE should be treated the way you have been treated.

Lynne XXX

Graham
16th June 2015, 11:45
Update

I have paid my Personal Assistant for last week's care services that included social time that I am entitled to. It is working out at less than half the cost that Comfort Call Ltd. were paid for their substandard services!

I am now submitting my invoices to Salford social services for immediate payment, copied to the Local Government Ombudsman.

Pam S
16th June 2015, 20:31
Hi Graham, so pleased you are managing to get sorted, I do hope they settle your invoices quicker than they have been in providing a decent carer for you, I hope your new P A settles with you and you can relax knowing she is capable to attend your needs

Graham
2nd July 2015, 18:46
Today I sat on the edge of my bed and then stood at my zimmer for the first time in two and a half years in bed.

I cast my mind back to the care support workers who were content to leave me out in the chair in much pain and then those care support workers who refused to help me stand into my zimmer and let me fall to the floor.

Today's physio session would not have happened if I had not financed my own Personal Assistant.

Pam S
2nd July 2015, 19:05
Graham, I am so pleased for you, what an achievement now you have the right care, I do hope life will now become more settled for you, thinking of you and wishing you well. Love Pam S xx

Terry
2nd July 2015, 19:40
That's so good to hear Graham;

It almost is making me cry. Next step outside in the sun. Would a weighted rollator be more stable.

Stay cool, love Terry

john
2nd July 2015, 23:30
Terrific news Graham,
The tragedy is all that wasted time. If you are able to stand now you must have been capable of so much more 2 1/2 years ago. I hope you can recover some lost function and enjoy this summer.

John

BlueEyesOhio
3rd July 2015, 02:53
Graham,
So glad to hear things are better for you!

XXXXX Lynne

Barry52
3rd July 2015, 11:52
Hi Graham,

I'm so pleased you are making progress and discovering functions you thought had gone. Let's hope you find many more but always remember to stay safe.

Barry

Graham
3rd July 2015, 11:54
Hi Guys,

Thank you for your kind thoughts.

It was a very emotional occasion for me. I did break down and the emotional lability added to the occasion. So many hopes and fears at stake. I only wanted to do bed exercises at the beginning but felt strong enough to sit on the edge of the bed. The physio then suggested that I should stand at the zimmer and I could not resist the invitation. Remarkably my legs and back held my weight with ease and I felt comfortable. I did struggle to balance my weight through both legs. I suspect that I will be able to walk again at my zimmer and maybe more.

It would seem that my MND has burnt itself out to all intent and purpose.

It would seem that there is life after MND in this case.

willsandco
3rd July 2015, 12:07
that is such good news, Graham! onwards and upwards, eh? Much love Joycie xx

Jan
3rd July 2015, 12:08
Oh Graham, I am so so pleased for you, this is awesome news x

john
3rd July 2015, 17:52
You maybe have found a cure Graham and all it takes is bed rest!!!!!

John

Graham
4th July 2015, 16:23
Hi John,

The notion of improving from baseline does seem strange having MND, I must admit. I remember being able to walk five metres to the loo and back two and a half years ago. But it was such hard work. I will deploy my old squash determination during my physio that starts in ernest next Thursday.

I still fancy being one of the first in the U.K to try the BrainStorm stem cell therapy.

Barry52
4th July 2015, 22:37
Hey Graham, join the queue lol.

Barry

Terry
21st July 2015, 19:45
Hi Graham;

How are you doing and who's providing your care and to what extent. Tried to put a case at the Stanstead conference for them to more active in cases like your's and David's but it never really got off our table and there wasn't a right time during the day.

Love Terry

Graham
22nd July 2015, 11:55
Hi Terry,

I trust your as well as can be expected and pleased to see that you are still getting out and about. Long may it continue.

I am paying 150 per week for my personal assistant, while Salford social services are paying a care agency 600 per week not to attend my home and provide care that I don't need. Don't adjust your set, what you read is fact.

I am writing up my account of my time in hospital for the Ombudsman at present. It is taking me some time.

Yes, people don't want to rock the boat with the MNDA on board and it is quite understandable. They will be black balled.

I am making progress at the moment and I will keep you informed of developments.

Take care.

Graham

Graham
26th July 2015, 11:42
For the attention of Ms Marples.

FlyingSoupDragon
26th July 2015, 12:08
BBC iPlayer, not to be missed.

http://www.bbc.co.uk/iplayer/episode/b063j5bb/wanted-a-very-personal-assistant-episode-1

GrannieAnnie
26th July 2015, 13:25
Hi Graham,
Its quite amazing what good care can do, I am delighted finally it is coming together for you and long may it continue. Good Luck and keep one step ahead. All good wishes Ann x

Graham
28th July 2015, 10:20
Hi Norman,

The article on Personal Assistants is very instructive. For people starting out with MND, the right Personal Assistant can make all the difference between really struggling and I mean really struggling and not. People with MND living with a partner must also consider a Personal Assistant as MND often overwhelms a single carer. I can recommend the use of Personal Assistants.

There was also shown an Access to Work support worker role that is funded quite separately.

Good find Norman.

Hi Ann,

Thank you for your kind thoughts. I am making good progress now.

Regards

Graham

Nettie B
29th July 2015, 22:28
Wonderful news Graham and what good advice. "Onwards and upwards" as our Joycie will be saying! X Nettie

Graham
2nd August 2015, 11:26
Hi Nettie,

Thank you for your encouragement. Yes it is 'onwards and upwards'. I set my target as to walk into my kitchen and back last week. It was not to be and I had real difficulty lifting and controlling my legs. Oh Wednesday I only managed to make very tiny steps backwards and on Thursday I only managed very tiny steps forwards. The physiotherapists made it more difficult as they were trying to correct my posture however I was purposefully having to put my weight through my right hip because of weak muscles. Not being able to talk in this situation caused huge difficulty and the attempt to walk failed, as we were at cross purposes. I was totally exhausted by the stress of the session.

I will have another attempt this week and I know that it is going to be a long process.

I am continuing to document my experiences at the hospital.

Take care

Graham

Terry
2nd August 2015, 17:11
It's good that you can stand and move a little Graham;

Just make sure you're safe as practicable so that you can do a tiny bit more from week to week. It's so good that your life has improved a bit, mind you that was not hard.

Love Terry

Nettie B
2nd August 2015, 19:29
You'll get there Graham. I hear sheer termination in your posts. VERY well done! X

BlueEyesOhio
3rd August 2015, 02:31
Graham,
As Nettie says it's SO good to hear that determination in your posts. Keep on fighting.

We're in "Boot Camp"

Love, Lynne

FlyingSoupDragon
3rd August 2015, 11:18
..... I had real difficulty lifting and controlling my legs..... very tiny steps backwards ....only managed very tiny steps forwards.


Not being able to talk in this situation caused huge difficulty...


I was totally exhausted by the stress of the session.I will have another attempt this week...



Bravura performance Graham! Often it's not just the loss of muscle power, it's the loss of 'command and control' - those beastly pins simply won't do as they're told. Very frustrating.
As for making ourselves understood, I often feel being Italian would help - waving of arms and hands etc.


Diving with an Italian couple years ago was pretty instructive. The lady was deaf but they were both very fluent 'signers'. Seeing them on the boat jabbering away with their hands as they were getting ready was both endearing and amusing. But seeing them working across the reef together surrounded by a kaleidoscope of colour darting and flashing about them was truly inspiring. Their conversations continued at the same speed below the surface as above. That's Italians for you.



Stick with it buddy, keep laughing at adversity, you're in excellent company.


399

Graham
3rd August 2015, 11:50
Hi Lynne,

Yes the challenges that MND place upon us are very considerable but we are strong enough to face them down with a little help. I am thinking of you too and wish you well.

Love Graham x

Hi Terry, Nettie,

I can only get out of the bed with the assistance of the physio. It is perhaps as well as I have broken my leg, lost a front tooth, fallen through a glass panel of a door, fallen against the edge of a door etc that all required a hospital visit. On the one hand I could be criticised for being somewhat reckless but in reality I was not provided with any advice or support for the duration of my disease. It is only now that I am receiving meaningful support but I am having to pay for my physiotherapist's assistant at present.

How are you, Terry and Nettie? I hope you are as well as can be expected.

Love Graham x

Terry
3rd August 2015, 18:36
Oh Graham!!!!

I don't like the sound of that.

I am OK but don't know how long my hands will last. I had half a fall a few days ago. I meant that I overbalanced in the shower area trying to push the walker away as it was in the wrong position. I still had hold of the grab rail and whilst one foot slipped the other didn't and the walker jammed against the wall with some of my weight on it leaving me at a 45 degree angle. My wife heard me yelp and managed to lift me upright. I had a bit of a scrape on my side, slightly sprained shoulder and wrist, and a scrapped and bruised foot. I am OK and have been to the gym and are walkingish OK.

Hope you are not in pain Graham and get better soon. I'm sure I don't have to tell you to take more care and don't fall.

Love Terry

Nettie B
3rd August 2015, 20:43
Are all those injuries recent Graham? You are wise to challenge yourself only when you have help. You done so well and you don't want to undo all the good work!
Trevor had a couple of slides to the floor at a stage when he liked his rollator to be a decorative item rather than a tool. This changed when he overbalanced and fell backwards into a glass door. Thank heavens for the cat! She insists on having that door slightly ajar so she can get to her water so Trevor's fall simply made the door crash backwards and no harm was done but poor Trevor. He looked so shocked and terrified! After that the rollator was parked so that he used it straight away from sitting. It's so dreadful , this sapping away of independence. No one who hasn't experienced can never really know how it feels can they?
As for me, I'm missing Trevor dreadfully even the criticism of my driving which was completely unfounded of course! Even the day before he died he could be funny and could give a disarming smile! His sign language for wanting his radio to listen to the Easter Monday football match had to be seen to be believed and caused a laugh! Drawing a square in the then giving a thumbs up sign (the arial) was beyond me for a while.
I'm still finding that this grieving process is sapping my energy and plans for getting on with the garden (and it's a big garden!!) go
to pot too easily. It's been abanded for so long that it's an uphill struggle now.
The speed of mood change is hard to handle too. I can be fine then find myself in floods of tears for hours. Still, it's normal and to be expected and will pass, so I'm told.
Thank you asking Graham, when you have such dire problems yourself. Try to keep positive. Oh how I hate it when people say that to me though it's meant well and don't forget "Safety first!"
Love from Nettie.

Graham
4th August 2015, 12:08
Hi Terry,

My falls were all years ago and before I went into hospital in 2012. I can't get out of bed now without assistance.

I can appreciate that you were shaken up by the slip in the bathroom. They are very unpleasant and undermine confidence.

My fingers close or contract but don't open with the thumb being best at opening and each next finger being gradually weaker with the little finger not opening at all. It is as though I need springs inserted into my fingers to keep them open.

Hi Norman,

Yes, good observation. The Italians are excellent users of body language. My body language is creative like Trevor's but not always understood!

I have kept in touch with Julius and we are throwing about ideas. I have a home hub product at my company and Optikey would work well with it.

Hi Nettie,

Yes, there are the practical issues too associated with losing Trevor. My garden went to pot too while I was in hospital and before. My Personal Assistant has knocked it into some kind of shape even though I can't actually see it. These problems are rectifiable in time.

Take care all.

Graham

Night walker
9th August 2015, 16:07
Hello Graham
I've been adapting to another sphere of this illness through my hubby and am so pleased to find you have your care problems back on track. It's a complete miracle that you have as it seemed really touch and go but your resilience to not suffer at the hands of fools is your mainstay and the support from lots of people on this forum.
Good on you Graham. Take care. Sylvia xx

Graham
23rd August 2015, 13:37
Hi Sylv,

I apologise for not responding earlier. I hope you are well and your husband doing as best as possible under the circumstances.

My research work has ground to a halt at the moment. The recent developments in Altzheimer's Disease is of great interest as it points to a similar mechanism of protein clumping in the neurones and the projections out of the neurone. I am disappointed that our MNDA has not commented. For those of us with disease of the neurone projections, like me, the new drug that is being trialled could be of benefit.

I had another good physiotherapy session this week and stood for a record six minutes and was able to sit unaided on the edge of the bed just for a moment. All in all, progress is being made here.

Still writing up my experiences of hospital and business is getting ready for lift off.

Regards

Graham

Terry
23rd August 2015, 14:36
Thanks for the update Graham;

And glad to hear of your steady progress even though it is a little slow.

Love Terry

Night walker
29th August 2015, 07:39
Hello Graham,

Wondered how you are getting on and hoping the new regime is working out for you.

Xx Sylv xx

Graham
30th August 2015, 12:33
Hi Terry, Sylv,

Hope you're both well(ish).

I am really lucky to have found an excellent Personal Assistant. I am looking to recruit a young apprentice in the next couple of weeks and I have identified one with the assistance of my P.A.

Meanwhile I have not heard from Salford social services other than to be informed that I cannot have Direct Payments for employing P.As and that they will not reimburse me for the monies that I have paid out to my P.A. The matter is with the Local Government Ombudsman.

My physiotherapy is going well and the deformities that I developed being bedridden for 30 months without treatment, are being ironed out. My legs are continuing to strengthen and I can feel the increased tone of the muscle. I still await my wheelchair of the NHS. I have been waiting over three years for it now. The matter is with the Parliamentary Health Service Ombudsman.

I am still writing up my experiences in Salford hospital and I am approaching completion.

All in all, I am quite content with progress and I can look forward to better times.

Regards

Graham

Terry
30th August 2015, 12:52
Hi Graham;

Some positive stuff there. I know you have not had much help from the Mnda but it's worth asking them to help with the speeding up of the supply of a power wheelchair as they have been able too do that for other Mnd people.

Give them a try, love Terry

Barry52
30th August 2015, 15:03
Hi Graham,

I'm pleased things are starting to look up for you in terms of strengthening your limbs. Good news also about the P.A. but your wait for the wheelchair is unacceptable and as Terry says call MNDA.

Best wishes,
Barry

Graham
31st August 2015, 12:28
Hi Barry, Terry,

Thanks for the encouragement and advice.

It is the NHS wheelchair service that has an obligation to provide me with an appropriate wheelchair. That is why my best avenue of action is to complain to the Parliamentary Health Service Ombudsman, which I have done. The MNDA made their position crystal clear when they refused to assist me through my care crisis and previously in hospital.

Regards

Graham

Terry
31st August 2015, 17:12
Hi Graham;

We know that they should do more for people that were in situations like you and Dxvxd. But please don't bit off your hand to spit your face. Try to email them and tell them of your wheelchair situation. They are different people to those at the top. Lets get you out so you can choose where to go.

Love Terry

Graham
12th October 2015, 11:53
I have just been informed that I will be abandoned again today for my usual breakfast time visit at 12pm. Thankfully the taxman is coming at 2pm so I will be able to ask him to provide me with food, drinks and medications.

Salford style care.

It seems like I was just being teased. Crers just came

Terry
12th October 2015, 15:14
It's a bit late for breakfast though Graham;

Love Terry

Barry52
12th October 2015, 18:44
Hi Graham,

Is breakfast tax deductible? If so I wish to claim for a full monty every day (that's a full English to the TOCA's) lol.

Hope you're service has resumed.

Barry

Dude
12th October 2015, 18:52
https://www.youtube.com/watch?v=kPSoJ6LdhGA

Another full monty.

Barry52
12th October 2015, 20:47
Yes Dude a great film but I don't think I'm up to the stage version.

Graham
12th October 2015, 21:04
Hi Barry,

Very funny you should say that. We were able to discuss that very point. It has taken me over 12 months to make progress.

All MND-illness-related expenditure is VAT exempt. HMRC expects VAT exemption to be applied at source. This is straightforward and is done for items that are clearly illness-related e.g. stairlift, wheelchair, wet room, mobility scooter.

VAT exemption also covers maintenance costs.

Then I moved onto generic items that I use. These are items that have VAT applied but I use specifically for my illness. I am asked to provide a list and please help me add to it: -
Windows laptop for Optikey
Apps
Dog pads (continence)
Paper tissues
Straws
Washing powder
Fabric conditioner
My excess spending on electricity for heating and washing.
My excess spending on water for washing and carer maintenance (flushing the toilet)

I pointed out that I like full English breakfast and proper home cooking but my carers insist on giving me ding-food much to my annoyance. So all the ding-food that I must order is in fact VAT exempt, whereas a sumptuous and delicious F.E.B is not.

Regards

Graham

Graham
24th October 2015, 12:42
Hi CC,

I recall that you said you would complain to the United Nations two years ago while I was languishing in Salford hospital about the human rights of disabled people with respect to Independent Living. As we know, the United Kingdom is a signatory to the United Nations convention on Independent Living and the U.K. Government put on Statute the Equal Opportunities Act 2010 to cover it.

This week the U.K Government received a complaint from the United Nations that the U.K Government is failing disabled people in respect of its commitment to the United Nations convention on Independent Living.

The U.K Prime Minister compared this country's treatment of disabled people with that of backward countries and went on to imply that disabled people in this country have it good by comparison.

However, the Equal Opportunities Act 2010 has a broad scope, particularly for disabled people. Government must provide the means for disabled people to live an equivalent life of that of able-bodied people.

The Local Government Ombudsman and Parliamentary Health Service Ombudsman continue to investigate.

BlueEyesOhio
27th October 2015, 02:32
Graham,
I knew what a full English is but what is ding-food.

Lynne
TOCA (the other crazy American)

Dude
27th October 2015, 07:42
ding-ding Lynne. Microwave noise lol Dude x

Graham
28th October 2015, 11:52
Hi Lynne,

I hope you are managing. Barry was just tormenting me (lol) with the imagery of our beloved Full English Breakfast. It an institution in these lands.

Then...

When was out on business I would book into lodgings for the night. Full English Breakfast was served at 7am in the dining area that often overlooked the English countryside. These lands have verdant meadows with rolling hills and a rich variety of trees to get engrossed in be it rain or shine. The dining area has twenty small round tables with white tablecloth. The atmosphere is light and airy and the aroma of the Full English Breakfast is unmistakable. One takes a tray and white plate and loads the plate with the Full English Breakfast. Grapefruit for starters to clean the palette. A bowl of cornflakes as the precursor to the main event. Then the main event, ... the plate of heaven!
The mushrooms go well with the thin rashers of bacon. The egg is a match for the fried bread. Baked beans are a triumph with the Lancashire Black Pudding. Brown sauce on the baked beans with the plump sausages is majesty. All washed down with Earl Grey Breakfast tea and you are good for the full working day.

Now...

'Weetabix chuk?', ninety seconds of humm, ding, down the hatch, toast and a beaker of tea, 'See you at teatime chuk!.


Barry, you are such a tease(lol).

Regards

Graham

Barry52
28th October 2015, 12:09
Sorry Graham,

I am determined to make the most of solid food while I can. Just for a change I had a full Irish this morning as I am there for a week touring around north and south with my friend who is taking care of me.

Best wishes,
Barry

Terry
28th October 2015, 18:16
If you got it, flaunt it Barry;

I'm probably worse than Barry Graham. When I was staying in the hospice a while ago, a Mnd friend was in there and I used to get the nurses to ask him if he wants to smell it before I eat it. We did have some laughs that week and I still manage to eat Poached egg, bacon, sausage, fried slice, grilled tomatoes, mushrooms and bake beans, and of course a slice of toast and butter. I have trouble with the juice though.

Love it, Terry

Sorry Graham, just saying Barry's not so bad!!!

Graham
29th October 2015, 09:40
Hi Barry, Terry,

I am not jealous at all, ... well maybe just a touch, ... yes, maybe just a little more than a touch then, ... I have to admit it, I am jealous, ... darn your torment, I can smell that bacon, the texture of that Lancashire Black Pudding on my tongue with their mistresses called baked beans ... you are too cruel Terry(lol)


You have a good friend Barry, enjoy your time on the Emerald Isle!



I am up at this unearthly hour (for me) because my new agency carer made a mess of my pillows and my neck has creasing me since 6am. I will have to wait till noon for my Personal Assistant.

Terry
29th October 2015, 10:02
You know that we are both very sorry for mentioning about cooked breakfast Graham :

Pillowssliding or bbeing in a position that tilts or twists your neck can cause trouble for days.

Love Terry

Graham
31st October 2015, 13:13
Dear MNDA,

I read of Mrs 'J's' plight with the Devon Local Authority and it is very distressing to learn that Mrs 'J' spent her last weeks having to worry about her care arrangements.

Mrs 'J's' right to Independent Living was being challenged, there were Health and Safety breaches and breaches of contract by the care agency. As part of the Local Government Ombudsman investigation, I ask that the family of Mrs 'J' be contacted so that my LGO investigator may consider it too. My LGO investigator asks that I inform him of other cases.

Regards

Graham

BlueEyesOhio
31st October 2015, 18:36
Graham,
What a great description of your "full English" and the surroundings! I did extensive genealogy research on both sides of my family tree. One side was from England, the other side from Scotland and Ireland. I can SO relate to your descriptions. It must be in my genes! (lol) I can almost feel it "in my bones"... From years back, before I discovered my origins I felt such an "attachment" to all things British, never knowing why.

Thank you for the vivid word picture you painted

Love, Lynne

Graham
2nd November 2015, 12:23
Hi Lynne,

Your genealogy is fascinating. I would love to learn more.

I have an Irish lineage from the times of the Great Irish Potato Blight and the folks went to America and then returned to this side of The Pond and settled in the Bolton area.

I would love to have a portrait of Ohio.

Regards

Graham

Dude
2nd November 2015, 14:46
http://www.tripadvisor.co.uk/LocationPhotos-g28956-Ohio.html#18528930

Some nice photos Graham. Dude

Graham
3rd November 2015, 11:35
Hi Dude,

Thanks for the pictures.

Seeing a photo of a plate of Full English Breakfast cannot describe how it effects one's soul. I sense that there is more to Ohio too.

Regards

Graham

Dude
3rd November 2015, 12:03
Hi Graham My choice would be full english, but only cos I've not had one for too many moons. Never been Ohio. Dude

Graham
29th November 2015, 13:19
Yesterday I had the pleasure of leading our national English chess team in a friendly match against Spain on Chess.com. I led a team of 81 strong players.

12 months ago our NHS ordered its 8th psychiatric test of me to certify that I maintained mental capacity.

My contention is that there are 'dark' forces within certain parts of our NHS.

The Health Service Ombudsman continues to investigate.

john
29th November 2015, 13:58
Did you win?

Barry52
29th November 2015, 16:05
Hi Graham.

Well done for representing the U.K. Maybe you could give some lessons to Terry and CC.

What a waste of time and money by the NHS not to mention an insult on your intelligence. Dark forces indeed!

Best wishes.
Barry

Graham
29th November 2015, 17:13
Hi John,

It has just started and these games take weeks if not months to complete. I am finishing my World League match against a Russian master and I will beat him 2-0. The team has lost unfortunately in that match. My games against France are not going quite as well and the pips are beginning to squeak! However the team has won.

Hi Barry,

Terry and I are friends on Chess.com and I watch him play. Please don't tell him!

Regards

Graham

john
29th November 2015, 17:31
Good luck Graham,
Glad you can concentrate on such things. My attention span doesn't run to chess these days.
If you are tutoring cc could use some input by the sound of her battles with Terry!

John

Graham
29th November 2015, 20:10
Hi John,

Yes indeed! Terry ain't the cuddly, obliging chap that we are all familiar with on here when he exercises control of his dominians on the chess board. Oh no. His ruthless and sadistic streak is plain to see on Chess.com when he unleashes his Zakrepsky Attack time and time again.

How are proceedings at your Shares Club? Any hot tips? BrainStorm ain't so hot at the moment but investors are so fickle.

Regards

Graham

ccinjersey
29th November 2015, 22:07
It’s true what Graham says John. Terry is highly skilled, and brutal to his opponents on the battlefield, only a few lucky ones survive him. It only took me 35 games to finally stop shaking when we play, but he still makes me cry Lol

Must say this, Terry is simply an awesome teacher. I have the wins that I have against other opponents because of him, and what he has taught me, shown me, and how he continues to coach me.

CCxox

Good Luck in your games Graham.

john
30th November 2015, 00:24
Hi Graham,
The shares club wound up. We are all poorer and no wiser. We invested heavily in an outfit called Sirius which have big plans to mine potash under the North Yorkshire Moirs National Park. Lots of hype when launched and we rushed in and bought at the top. There then followed lots of planning objections, resubmitted plans and public consultations. During all this our investment halved and we decided to call it a day and sell all our holdings. No sooner had we done this than the plans were all accepted and approval granted and the shares recovered. Hey ho. Not sure what has happened with Brainstorm and Neuralstem which were full off such promise. They or their investors seem to have developed cold feet. Seems tragic if this is the answer even if not for everyone but if it could cure some it would be a leap in the right direction. Let us hope they are continuing their research and just working on refining the quality of stem cells and their delivery.

John

BlueEyesOhio
30th November 2015, 03:10
Graham, Dude and all,
Thanks for the photos, it looks like where I am living right now. Yes, the Amish live here. It's a quaint village, although we have a WalMart. The only problems with the Amish and driving the roads in a car is avoiding "road apples"

Love, Lynne

ccinjersey
30th November 2015, 03:39
Hi TOCA

I didn't know you had a large Amish population in Ohio. There is a large population in Lancaster PA. Went there for sightseeing many years ago. I purchased a beautiful handmade quilt which was one of their specialties, and was a small fortune, but worth it. Are they still living without electricity, and dressed like pilgrims ??

Just wondering...TOCA xoxoxo

Dude
30th November 2015, 08:08
Hi Lynne I remember a guy with a horse and cart delivering bleach & soap to our houses in the '50s and as soon as the steaming apples hit the road a keen gardener would be out and scoop it up for his roses. Dude x

Graham
30th November 2015, 11:41
Hi CC,

How is the weather in New Jersey this year? I recall that you have had some pretty wild weather at this time of the year previously.

Chess.com is great. Have you played the bullet chess when you have to make all of your moves in sixty seconds?

Regards

Hi John,

I bought a few BP shares a year ago and then the oil price collapsed. The dividend has held up and so I am hanging on for the long term.

Regards

Graham

ccinjersey
30th November 2015, 12:03
The weather is getting cold here now Graham. Yes our weather is unpredictable, but as long as New Jersey doesn't have another Hurricane Sandy we should be ok.

No have not played bullet chess, even though Terry wants me to do those timed games. Do you play them ? I know Terry does, and plays them well. It can take me over 5 minutes to make one move, it would be almost impossible for me to do all moves, and attempt to win game in 1 minute. I'm in awe of those that can.

CCxox

BlueEyesOhio
1st December 2015, 03:49
All,
Dude: I wish they'd scoop up ALL the road apples! LOL!! It's not pretty when you hit one then come home, close the garage door and then go back out after the "apple" has a chance to ferment in the hot garage of an afternoon in summer!!!

TOCA: Yes, they still dress like pilgrims, no electricity. They make lovely quilts. We have a local restaurant that sells large and small bed quilts. They are beautiful!!

Be well all!!

Lynne

Dude
1st December 2015, 07:46
Lol.

ccinjersey
1st December 2015, 20:55
No pooper scoopers for the road apples TOCA ? lol It’s a law here in Jersey.

You have to respect their lifestyle, but I wonder why anyone would want to live without electricity ?? Oh so ‘Little House on the Prairie’ lol, remember that one TOCA ? I had such a huge crush on Michael Landon ‘Pa’, oh he was such a handsome man…and he was always crying, so sensitive… so sexy…dang. He died young, so sad.

xxoxo

BlueEyesOhio
2nd December 2015, 03:36
TOCA, Dude, All,
We're in the country so no laws against horses taking a dump in the streets.

My husband's grand-parents were Amish. They are VERY sweet people. The idea with electricity is that they don't want a connection with the outside world. They have their own "laws" like driving a car or not. Some Amish communities do, most don't. It would go according to what the Bishop of that area's ideas are. They are allowed to have electricity in a building if they have a business. Also, not allowed to have a phone but for business use only. A lot of the Amish around here do exquisite wood working and as you said, CC, quilts.

Where my husband was born and raised they are allowed to ride bicycles, here in our area they can only use scooters.

Loved "Little House on the Prairie" My new fav British series are, Doc Martin and New Tricks. Do a search on your satellite for them. Very funny. They are usually on area PBS stations. Or search YouTube.com


Love, Lynne

Dude
2nd December 2015, 08:03
Lynne I fear the Amish are going to go the way of all 'tribes' and slowly drift towards the 'normal' population. The young people will not be able resist the temptation of technology. Shame really. Dude. x

ccinjersey
2nd December 2015, 22:52
Did your husband grow up in the Amish environment Lynne, and decide to leave on his own ?

They are a peaceful community, and kind people with old fashion values that are pretty much non-existent anymore. They have been going on for generations and generations, Dude may be right technology and temptation might eventually make them extinct. That would be sad they are quite unique.

CCxox

BlueEyesOhio
3rd December 2015, 03:25
CC and Dude,
Before the Amish youth join the church they have what's called "rumspringa" The word means (loosely translated) running around, for a period of time. Before the youth join they are allowed to "sow some wild oats" as they say. Then they usually join the church, at age 18, of their own free will and then not many of them leave the Amish church. Although some do.

My husband's parents got married in the Amish church and then left the community. My husband spoke only "Pennsylvania Dutch" until he went to school when he was 6 years old and had to learn english.

They have some traditions that are so worthy of being copied. If one of the families in the communities' barn burns down, the whole community comes and has what they call a "barn raising" and they build them a new barn.
Sounds like a nice place to live.

Lynne

ccinjersey
3rd December 2015, 12:53
So true Lynne, nice to hear of communities that still care, and come together to help one another.

It’s good that their teenagers have a choice in their lifestyle. It doesn’t seem like an easy life to live without all the modern conveniences, but to each his own, and live, and let live 

My hubby would spend all his summers as a kid in Italy. When he would come back in September to go back to school he had forgotten how to speak English! It was always a struggle for him, and English was not spoken in his home to make it even more difficult.

I do like it when he talks in Italian even though I have no clue what he is saying LOL but hen he stares at me like I’m supposed to answer him back ???

xox

Terry
3rd December 2015, 19:17
You've just got to admire peaceful communities and ways of life.

Graham
23rd January 2016, 16:51
Hi All,

It has been a very difficult month with my MND being the least of my worries. Mr Osborne and his cronies continue to defraud me of my lawful entitlements. I am now informed that my Access to Work entitlement is withdrawn as my company is 'not viable'. I could not show turnover of >6,000 for year 2012/3 and under the new rules introduced in October 2015, I am no longer eligible. I was informed of this while my support worker was owed 2,000. My MP Ms Long-Bailey is now involved.

Meanwhile Salford Council have not set up my Direct Payments and I am down 6,000 on that account.

I still await my wheelchair that is three and a half years late.

I await the Ombudsmen.

I see a lot of my forum friends really struggling too. It is all very sad. The way society manages our community and disabled people in general is a disgrace. But Government has won the argument, we are scroungers and a drag on our nation.

Graham

Terry
23rd January 2016, 17:16
I'm afraid that we are a burden on society Graham;

Sorry to hear that "Access to work entitlement" is not there to help you, it's a bit of a bugger that they changed the rules two years later.

I know the Mnda fall far short of your expectations but ask them to look into your wheelchair application as it is one of their priorities along with communications and rise and recline chairs.

I hope you get some joy in your and to a certain extent, our plights.

Love Terry

Lycanthrope
23rd January 2016, 18:55
Sorry to hear that Graham. You're spot on about it being a disgrace the way disabled/ill people are treated. It shouldn't have to be such a fight to get even the most basic things when they're necessities. I can't believe you're still waiting for a wheelchair after all this time. Mind you, I'm still gutted at the awful way Wheelchair Services treated my dad. Anyway, is there anything we can do to help? tc xxx Becky

Graham
24th January 2016, 12:57
Hi Becky,

I have followed the correct procedures and literally wrote hundreds of letters to the correct complaint authorities and three and a half years later, I am due to receive my response. There is nothing else that I can do.

I have directed the Ombudsmen to this forum to observe the avoidable suffering that many of us have to endure through inadequate NHS and Local Government care provision.

At this point there is nothing to do other than wait.


Hi Terry,

I can understand the root of your depression as you see yourself as burden on society. Believe me when I say that you are a treasure to many people.

Love Graham

Terry
24th January 2016, 13:25
Hi Graham;

I am not depressed (frustrated often) but I am a burden on society and my family. That's the way it is and we have to get on with it.

Don't know about being a treasure, I reckon the British chess team would preferred me not to have been found.

I have done some silly simple moves of late, will have to think a bit more before doing any rapid moves.

Love Terry

ccinjersey
24th January 2016, 16:11
Terry you are loved. Plain and simple. An illness is not burden, it is a condition with its limitations and challenges.

As for society, there is always the ignorant among us. Every one of us will find ourselves in some condition someday. It’s most unfortunate people do not realize that simple truth and fact, if they did they would have more understanding and compassion.

Graham is right you’re a treasure to your family, this forum, and Team England is lucky to have you :)

Hugs and kisses XOXO

Steve
24th January 2016, 16:48
I agree with Terry, I feel like a burden on my family. All I seem to do is ask for things and give nothing in return.

Terry
24th January 2016, 17:09
I think that most of us do Steve;

I do help others, both able-bodied and less- able-bodied by making them laugh and giving advice. But it's not enough and I'm a lead weight around my wife's neck restricting her life and freedom. I am a burden to society as I don't do or contribute much and they pay me money to exist.

That's how it is.

I have gotten over the main feeling of guilt because they voted to not to introduce the "Right to Die" bill.

You do give to us Steve.

Love Terry

ccinjersey
24th January 2016, 17:11
'Love feels no burden, thinks nothing of its trouble, attempts what is above its strength, pleads no excuse for impossibility, for it thinks all things are lawful for itself and all things are possible' ― Thomas Kempis

Much Love to you All :)
XOXOXOXOOXOXOO

Steve
24th January 2016, 17:17
It's difficult with two babies in the house. I can't help thinking what life would have been like.

It is difficult, especially as I felt in my 'prime'.

Terry
24th January 2016, 18:07
Hi Cc;

What was love sometimes changes when your a carer for your other half especially for a long time. I was i my prime too when diagnosed, loads of plans as my children where just about old enough too be left for a few weeks and we had a few pounds.

Yes Steve, it's a lot worse for you for several reasons. I am sure that you would never say that Steve and it is hard for all of us here.

Love Terry

PS:- We better let Graham have his thread back

Steve
24th January 2016, 18:18
I would never say that Terry, it's difficult for all of us.

p.s agreed.

ccinjersey
24th January 2016, 18:51
Oooh these posts have made me cry.

I know what you’re saying Terry, and I won’t pretend to understand what those living with this illness and loved ones caring for them experience daily.

All things change…marriages, children, friends…life.

I think I just really want to, and need to believe that Love is enough when the time comes that it has to be.

'I will always love you' Treborose xoxoxoxox :):)


Graham
24th January 2016, 21:35
Hi Terry, Steve, CC, All,

These are very pertinent issues and are worthy of appearing on 'my thread'.

I disagree strongly that we are a burden on society. SOCIETY IS A BURDEN ON US!! It has been a while since I have had to shout.

Dogs and other social animal species know to care for their sick and elderly.

Even on the balance sheet, knowledge and experience outweigh youth and immaturity by a long chalk. Children are the real burden on society and without the wisdom of elders, they are rudderless ships.

Steve, Terry, Pete, you are losing the argument - you may retort.

Regards

Graham

Steve
24th January 2016, 21:57
i'm not sure we're having the same discussion Graham, I was talking about my family. There is no such thing as society remember? We have had Thatcherite policies and govt since the early 80's. Is it any surprise you are going through hell?

Tred the dirt down.

ccinjersey
25th January 2016, 01:43
That’s true Graham, the animals do take care of their young, sick, old, and the humans they love. Maybe just their instinctive nature… I just had an experience with 3 pit bulls, I was telling Terry about it.

My dear friend’s dogs lie in bed with her now. They do not leave her side only to eat, go out, and then right back into bed with her. I came for a visit and went to her room. One’s head was on her feet, the other’s head on her tummy and the last was licking her neck area. I bent over the bed to kiss her hello, and they almost took my head off! They all leaped up at the same time growling, and bearing teeth at me. These dogs know me and love me…. I was terrified to say the least. I backed slowly away from her, once I did they resumed the calm, content demeanor again. LOVE <3 :)

Graham
25th January 2016, 21:26
Hi CC,

Thank you for sharing that beautiful story. I cried, MND or not.

Hi Steve,

Yes I got my signals crossed, my mistake. Are you through your current difficulties?

Regards

Graham

ccinjersey
25th January 2016, 22:20
Aww Graham. Yes nothing like the love, loyalty, friendship, and affection of a dog.

Must say though, the growling, snarling and bearing teeth of three pit bulls at me didn't exactly have me feeling the love at that moment, it was replaced by terror! Happy I'm here to tell it.

xox

Lycanthrope
25th January 2016, 23:23
Hi Graham x well I hope things are soon sorted out. I hope my dad didn't feel he was a burden to anyone. Awww CC that's really touching your friend with her dogs bless xxx Becky

ccinjersey
27th January 2016, 03:10
I found this article about living with a long term illness wanted to share. Thought it might be worthy of your thread Graham

xox

**************

One of the difficult things to deal with when suffering and illness, is feeling like a burden. This made me think about my seriously ill friends and their qualities, and I started to see a pattern that pleasantly surprised me: illness can give us

Perseverance

You are gifted with boundless perseverance. You get knocked down over, and over again, and yet you pick yourself up and keep on going.
You may feel that you barely keep going, but if you reflect on your last few years haven’t you managed to keep a semblance of normal life despite it all? All you need to do is harness your perseverance towards achieving the things you really want, and not just getting through your health challenges.

The very fact you are here, reading this and trying to move forward means that you’re showing up in your life. You are persevering and on the road to great things.

Empathy
You understand the frailty and nuances of life and how complex decisions and choices can be. You know to never judge harshly, and that giving love and understanding is far more useful.

Your ability to empathize can be used to achieve much. You have a gift that the world needs, so share it well.

Patience

You often find yourself daydreaming about all things you could be doing, but your reality is that you have to take things slower than you would like and you have to be patient with yourself.

Despite the frustration you are already exercising much patience by moving through the many hurdles your health places in your way, focused steadfastly on the end result – a great quality of life, or perhaps even a cure.

Apply this to something more than your illness. Have a dream to focus on, yes; you are capable of such feats.

Your patience can, if you let it, allows you to move forward to something more satisfying than purely dealing with your illness.

Courage

You are courageous.

You display this every time you try another treatment, every time you head down to surgery, every time you are admitted to hospital, every time you get out of bed and get your children to school on time despite the pain, every time you count out your medications knowing you have to deal with their side effects, every time you smile at someone and ask how they are, despite feeling dreadful yourself.

You are courageous and it’s beautiful.

Your courage can help you achieve anything, because you know that you can fail but you can always try again.

Hope

You understand the power of hope.

Hope keeps you moving forward. Hope makes you grasp opportunities and dare to dream, which in turn leads to great things. Hope makes you believe that anything is possible, even a cure. Hope makes you determined to have a great life.

You live with so much hope. You hope that this treatment will work and your pain will lessen. You hope that this operation will give you back the quality of life you long for. You hope this visit to the doctor’s office will answer your questions. You hope that your children never have to deal with your illness. You hope your marriage can survive these health battles. You hope that you can keep going to work/looking after your children/being normal.

You hope and hope and hope.

Hope makes you get up, shake yourself off and start afresh every single day, hoping that this day is better than the last.

Graham
28th January 2016, 12:41
Hi CC,

I did persevere through two years of hell in Salford hospital and the majority of the staff showed no empathy. I have been patient waiting three and a half years for Direct Payments, physio therapy and a wheelchair.

But there is hope. Ms Long-Bailey MP yesterday moved an amendment on the Government's unlawful new rules on Access to Work. I have been reinstated into Access to Work because I have the human right to be able to work.

2016 will be a defining year in my battles to get justice.

Regards

Graham

ccinjersey
28th January 2016, 13:11
Preserve you did Graham. It is a very real injustice what you had to endure. Thank goodness you have a fighting spirit, and didn’t allow it to defeat you.

The world would indeed be a lot better place if it had more empathy, and compassion in it. Good luck and hope 2016 is the best year ever for you.

CCxox

Graham
6th February 2016, 18:52
More progress...

I have signed contracts for Direct Payments but the terms of the contract are onerous on me and need working on. I only signed on the proviso that the contract is flexible and will evolve.

Graham
10th March 2016, 16:49
In 2011, my bank dishonoured a cheque that I wrote, as my signature had changed caused by the affects of MND.

Cutting a very long story short, the banks refuse to communicate by email and so I was stuck. It was only the intervention of Labour MP, Ms Long-Bailey MP, that anything changed for the better. I am still pursuing the banks as they have defrauded me and my company.

This is a trap that anyone else with MND will fall into when solo or abandoned by family and friends.

Terry
10th March 2016, 18:07
Will they do internet banking for you, Graham;

I use Paypal mostly but it might be hard to pay for shopping and other things with that. I had a manager from Santanda tell me that my wife she needs get power of alterny to control my monies over four years ago because I could not sign well. We left them.

I know it's quite easy for me as my wife can move monies around if we had any. She also does telephone banking but I don't think that the lightwriter would make that accessible.

Maybe the bank will send someone around to verify you and set up online banking. Is there someone you can go to to ask about disability discrimination?

Hope you can sort something, Love Terry

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