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Gillette
19th August 2019, 19:53
This afternoon, social services kindly informed me that they have suddenly decided to leave me to try and sort out my own care package! They say they cannot find an agency because the care package is so big. Obviously they think I am a miracle worker! How am I supposed to manage, when I don't know where to start, when they have all the experience and cannot manage?

I am angry, upset, bewildered, incredulous and lots of other things besides.

I have been without any carers since leaving hospital on 06 August. My MND has been galloping along because of stress and my partner is struggling to cope. He has serious health issues of his own which his neurologist is investigating.

I thought that Adult Care Services had a duty of care to vulnerable clients (I will not use the obnoxious term 'service user')? Have I got that wrong?

Doug Carpenter
19th August 2019, 20:15
Dina

That's shocking! Terrible treatment!

No wonder you're angry - and everything else.

Apart from a huge electronic hug, I can't offer any practical advice. My contact with social services has been extremely limited so far.

But you CANNOT be left to do this alone. You need to mobilise everyone you can: GP, MND nurses and I would hope the MNDA if only for advice about where else to go.

I am so, so sorry to hear this!

Doug x

ccinjersey
19th August 2019, 20:23
Hi Dina

Sorry to hear the situation you are finding yourself in. That's just awful and so unacceptable. Can you contact this MNDA Association ? I had thought they were patient advocates for those living with this illness ? I sincerely hope they can help you sort this out, and bring in the care you need.

Wishing you the best
CC xox

Ellie
19th August 2019, 20:59
So sorry for your horrific treatment Dina - simply OUTRAGEOUS :mad::mad:

Social Services have a statutory obligation to protect vulnerable adults.

You should probably contact MND Connect in the morning to seek their advice but in the meantime, think about....

Could you appeal to the person above the Jobsworth who dumped you?
Have you a Social Worker?
Are you linked to a hospice whose Social Worker can help you? Actually, if you aren't linked to a hospice, it's a good idea to do so.

I'm sorry you're dealing with this on top of your partner's illness.

Big hug,

Love Ellie.

Gillette
19th August 2019, 23:23
Hi Doug,

Thank you for your support. Hugs are always welcome. :o I did try ringing MND Connect but they couldn't come up with any suggestions.

Gillette
19th August 2019, 23:25
Hi CC,

Thank you for your support. I did try MND Connect but without success.

Gillette
19th August 2019, 23:31
Social Services have a statutory obligation to protect vulnerable adults.
Could you appeal to the person above the Jobsworth who dumped you?
Have you a Social Worker?
Are you linked to a hospice whose Social Worker can help you? Actually, if you aren't linked to a hospice, it's a good idea to do so.
Love Ellie.

Hi Ellie,

Thank you. The jobsworth who dumped was my social worker!!! I have had contact with the hospice but not with their social worker. One of their nurses is due to visit me on Thursday, together with my OT, so I should be able to discuss the situation with them. I shall also enquire about CHC funding as I have deteriorated considerably over the past three weeks so may be eligible.

Lynne K
19th August 2019, 23:52
Good luck with getting CHC Dina. Only just read about that. I'd do an official complaint to Social Services. Get in touch with the local MP too. Put pressure on them. They don't like bad publicity and those that shout loudest tend to be heard. Very insensitive (to say the least) of them to dump you when there's no healthy adult available to you to take over care even on a temporary basis. Lynne

ccinjersey
20th August 2019, 00:11
Hi Dina

Not sure if your political system is similar to ours, but do you have a congressmen, or senator in the district you live that you can reach out too?

My husband was being denied benefits, and he contacted our congressmen who was able to cut through red tape at the incompetency of the system denying him it, and was very successful.

Politicians have a duty to listen to the concerns of their constituents, and is their job to assist, and help as needed.

Be relentless don't stop until you have all your entitled too, if you can't do it maybe you have a family member or close friend who can be an advocate.

CCxox

Lynne K
20th August 2019, 00:42
Hi CC, Dina lives near to me in the UK. No Senators or Congressmen. I advised her to contact our local MP (Member of Parliament). We have local Counsellors too but MPs have higher status. Lynne

MNDConnect
20th August 2019, 11:16
Hi Dina

I am really sorry that my suggestions yesterday weren't helpful. If it would help, I'm happy to ring your social worker to explain the situation to them and see if we can come up with a solution. If you would like me to then please do feel free to send me a private message on the forum or email me at mndconnect@mndassociation.org.

You can of course ring me again on 0808 802 6262. There are two of us covering the phoneline today so if I'm not the one who answers then please just ask my colleague to ask me to give you a call back.

Best Wishes

Rachel
MND Connect Adviser

Kayleigh
20th August 2019, 11:57
Hi Dina,

So sorry to hear about the situation you are in due to Social Services letting you down very badly.

I would have thought under the 'Care Act 2014', the Local Authority can't insist someone takes on the responsibility of arranging their own carers (unless that person has opted to receive 'direct payments' from their personal budget, because they want to arrange the care themselves).

Even if I have interpreted the law incorrectly, it would be an unacceptable situation if a Local Authority says 'yes' you do have care needs BUT if you don't have the ability to organise the care yourself, then tough luck, that's your problem!

Not everyone has the ability to organise their own carers and not everyone knows someone who can do the organising for them - and I thought that even if someone was 'self funding', the local authority had to offer the service of arranging carers for them, or at least help to find suitable care agencies etc (although, the LA can charge a fee for these services).

Sometimes, CHC can be fast-tracked and so it might be worth checking at the meeting on Thursday if your CHC application can be. As CHC is funded by the NHS rather than the Local Authority, hopefully the provision of carers under that scheme is much more efficient!

I hope things get sorted out for you quickly and carers are put in place for you very soon.

Love,
Kayleigh x

Barry52
20th August 2019, 12:15
Hello Dina,

I have just read about your predicament and like others I am appalled at how the system is failing to meet your needs. I hope the powers that be can fast track your application for CHC.

By all means contact your MP but don’t expect immediate action. In my area we had a specialist neurological nurse who’s position was made redundant and several people with MND complained. The nurse would visit at home and assess the patient needs with prompt action. The MP wrote to the CEO of the regional health authority and following 3 letters confirming their investigation and 15 months later, the original decision to cease the role stands.

I post below a link to NICE which may help when you argue your rights.

https://www.nice.org.uk/guidance/ng42/ifp/chapter/your-mnd-multidisciplinary-team

Hugs and best wishes,

Barry x

Deb
20th August 2019, 13:56
Hi Dina,

Like others, I am shocked at the lack of carers for you. It is totally unacceptable and extremely worrying, to say the least. You must feel so distressed, vulnerable and anxious. I am also very sorry about your fast progression at the moment.

I really hope your application for CHC is fast tracked and you get some answers to this awful situation.

Sending you hugs and thinking of you,
Love Debbie x

kd1
20th August 2019, 14:06
Hi Dina,

This is appalling - I am so sorry. We have quite enough to cope with - physical challenges and psychological ones - without the stress of feeling abandoned when your need for help is acute. I do hope one of the lines suggested pans out.
Kate

Sheila
20th August 2019, 17:13
Sorry to hear all this Dina, I hope it all gets sorted out for you. Sending hugs
Sheila x

Gillette
20th August 2019, 18:02
Hi Everyone,

I had an appointment at Wythenshawe Hospital this afternoon. When they heard how things have been they suggested I be admitted and I agreed so thatís where I am for the time being.

Gillette
20th August 2019, 18:07
Thank you for your support, everyone. I canít tell you how welcome it is.

Terry
20th August 2019, 18:12
Hi Dina,

I am sorry to hear that you are back there but hopefully your husband can recop and they will sort out a proper care package before you go home.

Best wishes, Terry

Kayleigh
20th August 2019, 19:35
Hi Dina,

It's probably good you had an appointment at Wythenshawe today because someone there might be able to get things organised concerning an urgent CHC application for you. Sorry you've had to be admitted into hospital though. Hopefully the doctors and nurses are making you comfortable and the food is ok.

I hope social services realise the stress and worry you and your partner have been put through, due to their uncaring attitude and their failure to provide you with the carers you are entitled to.

I was reading the Care Act 2014 today and was interested to find out that the Local Authority not only has a statutory duty of care towards you but also to your partner (as he is your carer). It sounds like social services have probably been failing in their duty of care where both of you are concerned, because the non-provision of carers could potentially have a negative affect his health and well-being, as well as yours.

It's terrible that despite all the legislation and NICE guidelines, MND patients and their carers still don't always receive the respect and high standard of treatment and care they should be getting and are legally entitled to.

Hopefully, the situation concerning your carers will be rectified very soon. I also hope you and your partner get much better treatment from social services from now on.

Hopefuĺly your hospital bed is nice and comfy - I expect you could do with a good night's sleep, as today has probably been particularly tiring for you!

I hope you have a restful sleep tonight and a relaxing day tomorrow.

Love Kayleigh xx

Lynne K
20th August 2019, 23:19
Hi Dina, it's good that you are safe in Wythenshawe. I too hope that your hospital bed is comfy and that the staff look after you well. I also hope that Peter is ok on his own. Lynne

Dis1960
20th August 2019, 23:41
Hugs to Dina both for the terrible treatment by the social worker and your read:ittance tů Wythenshawe

Could your GP help with finding carers or chc forms

Gillette
21st August 2019, 08:42
Hugs to Dina both for the terrible treatment by the social worker and your read:ittance tů Wythenshawe

Could your GP help with finding carers or chc forms

Thank you. Hugs always gratefully received.

My OT emailed yesterday to say that the wheels have started turning for a fast-track application for CHC funding.

Gillette
21st August 2019, 08:47
Hi Dina, it's good that you are safe in Wythenshawe. I too hope that your hospital bed is comfy and that the staff look after you well. I also hope that Peter is ok on his own. Lynne

Thanks, Lynne. The staff have been lovely. Peter and I agree that being admitted was a good thing. It may well be that I stay in until 02 September when I am scheduled to have a PEG fitted and another procedure - it depends on when a care package can be set up.

Doug Carpenter
21st August 2019, 10:19
Hi Dina

I am so relieved to hear that some things are now moving in the right direction, and especially that you're safe.

Hugs

Doug

Ellie
21st August 2019, 12:39
Hi Dina,

I know you'd rather be at home with carers but I am glad you're being looked after, which must be a relief for bouth you and your partner and lower the stress levels.

It does make sense to stay until your PEG procedure, rather than send you home into the same situation from which you came.

Maybe the CHC will be granted "easier" because you'll be an inpatient waiting to be discharged?

If I can be of any help re meds or whatever, please ask

1061


Love Ellie.

Gillette
21st August 2019, 17:38
Thanks, Doug. Thanks, Ellie.

I donít mind being an in-patient - at the moment it is the best place for me. The last three weeks have been very difficult for all sorts of reasons and taken their toll on each of us. They have also prompted a more speedy advance in my MND - and it was going fast enough before.

Dis1960
22nd August 2019, 09:15
until 02 September when I am scheduled to have a PEG fitted and another procedure

You also are in the right place if there are any cancellations. Good luck and good wishes

Gillette
22nd August 2019, 16:58
Thatís true. Mind you, thereís no chance of the second procedure being brought forward as the anaesthetist is in France!

Ellie
22nd August 2019, 17:14
Just checking Dina;

The anaesthetist will be present during the PEG procedure to monitor your vitals and not because you're having a GA? (I know you said before that you'll be using the Nippy during the procedure)

Oh to be in France......

Love Ellie.

Gillette
22nd August 2019, 20:02
Just checking Dina;

The anaesthetist will be present during the PEG procedure to monitor your vitals and not because you're having a GA? (I know you said before that you'll be using the Nippy during the procedure)

Oh to be in France......

Love Ellie.

Hi Ellie,

The anaesthetist for the other procedure is the one in France. And he is going to use a spinal not a GA. I think, for the PEG, I use the Nippy and have some sort of sedative, but I will not have a GA.

Thank you for double checking.

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