Carers Assessment - is it worthwhile?

[duncan146294]

I am the sole carer for my wife and I am very much alone and have no help available. I was put in touch with 'Carers Matter' who were very keen and said I need to have a carers assessment but I have to say it is not clear to me what use this may be to me or to my wife. There was a long wait for the assessment which was due to happen on Friday (yesterday), a couple of hours before the assessment it was cancelled. I was then told the next available assessment is at the end of October. I asked the person who called if it was worthwhile and all they could tell me was it 'might be useful to talk to an agent'. Has anybody had experience of these 'assessments' and is it actually going to benefit my wife and me in any practical way? As people on this forum will understand when caring for an MND sufferer you have neither the bandwidth or the time to spend on things that are tick box exercises and of no real help.

I have become very skeptical recently because of my experience over the last few months in trying to get help for us. I have to have an operation soon and my wife will need care and I will need help during my recovery in caring for her. Lots of organisations from GP practices, through public sector bodies to private care agencies tell you how they are there to help you but when you say 'OK I need this at this time' - they all disappear at 100mph over the horizon never to be heard of again. A case in point is another thing 'Carers Matter' were keen for me to do. They insisted that I should register an 'Emergency Plan' with my local council and that I would receive confirmation of the plan, documentation and emergency phone numbers. I did so weeks ago and I have have heard nothing. So you can understand my skepticism.

Any practical experience of these 'assessments' and their value would be interesting

[JamesW]

Hi Duncan,

My wife has not had one but reading the Nhs page it appears useful? https://www.nhs.uk/conditions/social...r-assessments/

James

[Bowler]

Hi Duncan, you have absolutely hit the nail on the head with your comment “As people on this forum will understand when caring for an MND sufferer you have neither the bandwidth or the time to spend on things that are tick box exercises and of no real help”

If you haven’t already made contact with a local branch of the MND Association it would be worth talking with the connect team on the number at the top of the home page who can talk you through the various options including setting you up with a dedicated Association Visitor who can help you navigate the outrageously difficult mine field of living with MND.

[duncan146294]

Hi Duncan, you have absolutely hit the nail on the head with your comment “As people on this forum will understand when caring for an MND sufferer you have neither the bandwidth or the time to spend on things that are tick box exercises and of no real help”

If you haven’t already made contact with a local branch of the MND Association it would be worth talking with the connect team on the number at the top of the home page who can talk you through the various options including setting you up with a dedicated Association Visitor who can help you navigate the outrageously difficult mine field of living with MND.

Thanks - yes done that - it was them that put me in touch with these 'Carers Matter' people. Haven't been offered a visitor but has given me a contact for a small independent private care company that might be able to offer a day or an hour or two here and there but won't be able to offer the sort of support we will need after my operation. It is of course a post code lottery and we live in an area that has very poor cover for most services.

[TinyLady]

duncan146294 - no idea if useful or not. My husband was told to ask for one as my carer. So he did. Months ago. We have now given up. As you say, many services offer help but all bugger off the second you ask for it. I have had and lost OT"s, social worker, physio, dietician and many others (including my association visitor).

I hope it is useful. Because I'm probably more skeptical than you right now. Let us know if you find out!

[Piglet]

duncan146294 I had a carers assessment. It lasted about 30 mins. Was told about local carers support group. ( which I have never attended as it was more geared up for Dementia). I was also given a pass for the local gym which I initially used but unable to now due to not leaving my husband for long. I get the occasional carers information newsletter.
We did have a association visitor once, she spoke about herself mostly!,
Thats it!!
Good luck xx

[Bowler]

Piglet TinyLady

I’m so sorry and very sad that you had bad experiences with association visitors 😞

[Music man's wife]

Hello there. I've never had a carers assessment, the most useful thing we have ever got was Continuing Healthcare. We've found our own carers and train them up.
Really wishing you well, I generously think, it's not that people don't want to help, its just there are absolutely no resources to do so. So we are continuously robbed off and left to get on with it.

[duncan146294]

Thanks to everyone who has replied and I think it confirms what I have come to suspect over the last year, despite lots of fine words and instructions to 'look after yourself' - at the end of the day we are on our own and the only real help is self-help - its down to us. I agree that the biggest problem is that we have a totally under resourced and underfunded NHS and welfare state that is just used as a political football by all politicians, its not the staff, there are just too few of them.

Thanks again for your replies

D

[denise]

Hi I had a carers assessment with caring for carers which I'm pretty sure is local government. It was by phone and I got a £200 and told about a meeting place and various things going on in the community. We were assigned a social worker and had to do a financial assessment and then given monthly payments so I could access daycare or carers. this year I was given a 24 hour emergency number if I became ill and needed cover they would supply someone to care for my husband for a short period.

Your best help is word of mouth. You can find mnd carers support online or they might meet up in your area and its through them you find telephone numbers and who to contact. GP surgeries are sometimes helpful but I haven't found them beneficial. I really look forward to my carers support meeting because it's an opportunity to find things out, complain and have a good laugh. Just be careful you dont end up on your own with no support.

I did try for an mnd support person but I'm afraid it didn't work for me.

[Hils0912]

I am still waiting for a carers assessment too. Have asked a few times about this. I did have a visit from someone from Blackpool Carers Centre (The MND nurse sent me their details and I got in touch with them) and she asked me to ask a few questions to Syds Social Worker so when she visited at the beginning of last week, I did ask about what would happen if I needed to go into hospital and about respite care and she said that this should have been discussed at the carers assessment and that I would be entitled to this. I did point out that I hadn't had an assessment, so she was going to chase this up. Guess if I hear anything before the end of the year I may be lucky.

Hilary

[Music man's wife]

We have a local "rehab" team based at the local Cottage hospital. They offer care in an emergency. They first came out when I had an emergency admission to hospital, before Chris was diagnosed.
They also helped out last year when we struggled for carers.
The GP or district nurses should know if there's a similar service in your area.