Log in
Multiple System Atrophy Trust
433 members232 posts

Carers

Hi, just wondering if anyone has had any trouble finding carers for someone with MSA. The carers we have for my mum at the moment seem to be struggling with the manual handling, using hoists and slide sheets and do not seem confident to use them. The community nursing team has suggested we look at carers that have a nursing background but struggling to find a care agency locally that provide more specialist care.

24 Replies
oldestnewest

Hi Keycode, yes, I am afraid it is real problem. The carers we had for dad were fantastic until he needed equipment and became immobile. The carers did not seem confident to use it . I am afraid there is no easy answer as there is a shortage of carers generally. Your Adult Social Care dept should be able to help you find alternatives. Most areas produce a directory of care listing the care agencies. However, you might be lucky enough to find a member of staff from adult social care who can.suggest suitable agencies to save you the time. I wish you luck in your search and others on the site might have some suggestions.

1 like
Reply

Thank you, never thought it would be such a problem. We have a directory which I have been working my way through and comparing standards on the CQC website. Going to get in touch with continuing care see if they can advise at all. Tempted to take on caring for her myself but know there are times I can't always be there.

Reply

Hello there. I so empathise with you. Whilst our needs are much less than yours, I decided we should get carers in at least once a week to understand what the routines are. It was a struggle to find any consistent carers of quality and in the end we have decided to manage without carers for the time being.

I know Sue & Paul however have had some very good experiences with carers and so I don’t know if they have any advice....Paul?

Take care, Ian

1 like
Reply

Thank you it's making life very stressful at the moment. The carers we had at the weekend didn't even speak to my mum whilst they were there. It breaks my heart. My mum is bed bound 24/7, it's not much to ask to make a bit of an effort.

Reply

I used Home Instead in Hemel Hempstead who were very good indeed. Not particularly cheap but excellent with hoisting and everything except medication. They were also happy to help me with household tasks if Victor was asleep when they came and not able to be fed for example. They have other branches but of course I have no experience of them. Hoists require two people.

Reply

We have home instead locally here too but unfortunately they said they wouldn't provide 2 carers long term only if it was temporary as part of the patients rehabilitation after an op or something. Shame because the manager was really helpful and I have heard good things about the company. Will keep trying. Thank you!

Reply

Hi

Ian knows I use carers for my Sue.

I am now in the 4th company but are lucky so far. One thing I would say is DO NOT do it yourself for many reasons.

Firstly control your own budget.

Second do not go for the cheapest

Third talk to the owner of the care agency and fully explain your mom's condition and it's changes now and in the future.

We are just at the stage of using the hoists and the staff are trained in them.

We have 2 carers to move Sue in the morning.

There are training courses for use of all this equipment and it can be handled by the OT.

The problem we all have is care business have a shortage of staff and a fee that is mostly controlled by councils which means they can only pay minimum wage.

All I can say is talk to the senior management and get a rapport with them.

Good luck.

Paul

1 like
Reply

Thank you it's hard because my dad is getting really stressed about it all too. We are both not happy with the current carers but the more hurdles we face trying to find different ones the more my dad is getting stressed and then seems reluctant to change carers in case we end up worse off. We are waiting for a gantry hoist to be put in, in the meantime I will be talking to the care agency to make sure all staff are trained to use it. Yesterday the carers didn't lift mum off the bed at all which is just not good enough. Sorry for moaning at you. Thank you for sharing your experience though it is helpful to know how others are managing.

Reply

Hi, this forum is to moan, shout, scream, cry, plead, ask, help, encourage, educate and realise your not on your own.

MSA is all about changes and loosing independance.. it's hard for all to accept.

When you get on to your care company say " I am worried, can you help" rather than " you're failing my mom"

Asking politely gets more results as the care company are under pressure....if they don't respond start looking for another...

Don't forget to claim for as much financial help that you can.

Get social services helping to...

Good luck

We are all here for each other.

Paul

1 like
Reply

Thank you that really helps. Thank goodness for this site it's a relief being able to talk to people who know exactly what it's like and who understand.

I go for ages being strong but this last week has been very trying.

Thank you for your advice.

Kathryn

Reply

Kathryn

Our pleasure to help as it helps me cope if I can help others as well as helping my wife cope who has been with this condition for 10 years!!!! Although it's been a very slow set of changes for her and I do plan in advance to minimise the effects of that change.

Paul

1 like
Reply

Thank you my mum's symptoms started about 10 years ago too, she was originally diagnosed then with Parkinson's. It was only about 2 years ago she was rediagnosed with MSA.

Reply

Really sad to hear this. Yep it took us a year and things having to escalate to a hands down crisis before we got it sorted. But now we're 2 years along from that, and we have a great team. Maybe it's different here in Scotland, but it's well within the normal expectations for care agencies to hoist etc. My top tip is don't let the professionals make you do all the work finding a good agency. They should know who is out there and who's good. May the force be with you!

1 like
Reply

Such a difficult area, and no consistency. The OTs should insist that everyone involved is trained in the equipment, but obviously this is an ideal. Carers who have worked in residential homes tend to be more adaptable. Whatever happens do not go down the route of doing it yourself, you will end up in crisis. I had a private carer who was amazing and kept both John and myself vaguely sane, but she was there more as companion, and only did a few transfers a week and I did most by myself. In the end the combination of incapacity and orthostatic hypo tension made moving John by myself completely unsafe. Do not end up there. You may have got to the stage where continuing care is becoming a possibility, but it is very difficult to get and the process needs to be navigated very carefully, not with a well meaning, but inexperienced health official. If you have a relationship with your local hospice they may be able to help. However, from what I could see when we went through the process, severe physical incapacity alone is not enough to qualify.

1 like
Reply

Thank you. I have spoken to the local hospice which mum used to go to but they couldn't help me much I'm afraid. My mum has just been accepted for continuing care so my next port of call will be to ask them and see if they can recommend carers. Like I was just saying though I'm struggling now to get my dad on board with the idea of changing carers as the whole thing is really causing him a lot of stress and I think he's worried we risk being in a worse situation with another care company.

Reply

my mum has just had hoists put in for my dad which they aren’t using yet, but as you say not sure if they know how, luckily my dad isn’t bed bound as yet , he is 82 and my mum is 83 , so she can’t lift him , he can still use his arms a bit

my parents have private carers through the social services, which is really fortunate as they are all really nice, but not sure as you say whether they are trained for the hoists , one of the male nurses has used it , so time will tell

it is so hard for anyone to deal with his awful illness , this site is great and the support groups are great, only been to one so far , very helpful xx

we live in henley on thames (i’m the daughter) x

1 like
Reply

Hi and yes we have had the same problems here in the UK. The problem is that a carer plan is divided into two categories, domiciliary care and Palative care. Domiciliary care is the first stage of care and usually involves helping the elderly with dressing/undressing and some personal care. Palative care is more auxiliary nursing standard, and this is the standard of care that you quite clearly need now.

We had the same problem with the private care companies and i had to complain many times. Carers unable to comunicate with my wife(non British carers), allowing her to fall many times. In the end they would send only one 19 year old girl whom would turn up and only assist me to do everything, then she would leave on time wether i was in the middle of a care issue or not. A total failure to say the least. After complaining about these problems to the NHS long term care team we were then accepted onto "continuous health care plan" which is fully funded and provided by the NHS. We now get 2 NHS auxiliary nurses turn up 3x a day (known as the green team) and carry out a full hospice at home care plan. This is now working out fine without my direct involvement and i have no more issues with this care plan.

Kev

1 like
Reply

That sounds exactly the sort of care we need. We have just been accepted for continuing care. We use a private care company which will be paid for with the continuing care. Do you think I should contact continuing care and let them know the current care arrangements are not satisfactory? Thank you for your help.

Reply

I would say yes, the NHS have a legally binding "duty of care" and tell then, because of the complexity of the symptoms the care company are out of their depth and failing . We actually get auxillary nurses (NVQ level 3 carers) whom come from the local hospital wards to do the care package.

1 like
Reply

Thank you definitely the way forward!

Reply

Absolutely. Continuing care supported a live in carer for John. They sorted out the agency who were excellent and the manager of the agency was constantly in touch with me checking that everything was going well. Your local continuing care organisation should have a good view of all the agencies, and those that meet the required standards. You might be better off taking the CC recommendation.

1 like
Reply

Thank you I will make sure I do that!

Reply

You may want to look up Home Instead they are an excellent care company .

1 like
Reply

Thank you I have heard really good things about them and I few people have recommended them too but unfortunately they won't provide 2 carers long term and thought my mum's needs were to complex.

Reply

You may also like...