Who can we turn to

good morning i hope everyone is well in these stressful times. we are having abit of bad luck. i’m a full time carer to my 65 year old mum with motor neurone disease, i have a one year and am 3 months pregnant and along with my husband we all live together with pop in carers 2-3 times a day for hoisting and personal care.unfortunately my mums condition means she is time critical to get off her ventilator and take medication by 7.30am and due to past trauma only can have female carers. this has limited the care agencies we can use and after a stressful year social services found an agency for evening care but had to use their social services reanablement service for the am care as our social worker could not find any other agencies with the morning time frame. unfortunately things are going downhill with the morning care- as we thought it was temporary ( told it was 6 weeks now 7 months later still have them), we never know who we have coming - luckily they stopped sending males. and after talking to the manager and writing a checklist for the carers as so many things are half done, forgotten etc the attitudes of the carers have changed making a very tense environment. mum gets ignored in her requests if it’s against the normal routine like needed toilet in morning, they have forgotten on many occasions to apply her cream and ointment for sores and pressure areas, they move our furniture around without asking, they write in the notes “ toilet not clean” ( we keep a very tidy house but sometimes things get missed) they prefer to play with the dog than make sure mum is correctly positioned. then we get to the dangerous parts- mum has nearly been dropped 3 times when hoisted, they have lowered her bed to where she couldn’t breath knowing she needs to sit at an angle, and even pulled out her catheter the other day - balloon still inflated!!! causing her trauma. both my husband and i have tried to nicely to talk to them but often it falls on deaf ears. these carers are our last resort and we are constantly reminded this. unfortunately our social worker is next to useless and takes over a month to ever get back to us when we try to contact her. the care my mum is now getting is verging on abuse, she is low in mood, often having difficultly to breath during the day because of the rushing of the morning carers. i just don’t know what we can do, who we can talk to and who will help us stand up for ourselves are our moral is so low we are all highly stressed and just don’t know who we can turn to. the afternoon and evening care agency don’t have the capacity to take mums morning call and mum is even thinking of going against the doctors advice and accepting a later call that will ultimately affect her health because she will have to be in her ventilator for longer increasing her dependency on it.

Welcome to the forum.

There have been others here caring for someone with MND, as needs increasing specialist nursing home care becomes the only realistic option. I know it’s not what anyone WANTS but it’s what mum NEEDS now. You cannot provide this level of caring whilst you have a young child and another one on the way.

YOUR needs and those of your unborn child must now take priority. Nothing can halt this horrible disease.

Is mum now receiving NHS Continuing Healthcare - all the care she needs free of charge?

thankyou but nursing home is def not an option. she gets the 3 times a day care and that works well with the care my husband and i give her, my whole concern is that the carers we have are not providing the same care they used to and are neglecting her basic needs but we have no other agencies we can use. mum used to have a live in carer till we all bought a house together. i just need advice on what we can do about someone helping us get better care

Hi Emma

What you are currently dealing with would be difficult in normal circumstances. However, given the current situation is much more difficult. Some agencies rightly or wrongly have been withdrawing services. So please be careful as you may find no care with be provided.

Can you write a list of the morning tasks. Even if it’s in the care plan. Ask the carers to tick the tasks they have carried out.


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Have you considered employing you own morning carers.


Given your other family commitments, I am very concerned about your well being as well as mum’s.

Clearly the arrangements were working well, but are currently unsatisfactory.

You didn’t answer my question about whether or not mum has been granted NHS Continuing Healthcare?

If it was, it would then be up to the NHS to arrange suitable care. If granted, this should cover all mum’s needs.

we cannot find an agency ourselves to employ morning carers privately not have the funds. mum already pays a large contribution to her care almost all her nhs pension. we wrote out a checklist but that’s when attitudes got worse almost like we “ telling them how to do their job”. we have a please remember poster on mums bedroom door but still it’s not taken notice off.

before we lived together mum had dual funding of nhs and social. for some reason due to moving counties ( 30 mins down the road lol) she only receives social funding- however their is an appeal still continuing in our old county that prevents mum from getting assessed on nhs funding in our new address. apparently it has to go to a panel which is irrelevant now as we don’t live their and the circumstances have drastically changed. when mum lived in her own house she has a live in carer as she has an alarm that goes off if she stops breathing so someone would have to go check on her ( we use an extra baby alarm and it usually goes off around 5 times a week if not more) then was assessed to need 4 times a day double up pop in carers. now we all live together we no longer have the live in carer as mum is very with it- i get meals for us all and see to her ventilator alarms at night or if she needs it in the day and because they couldn’t accommodate 4 calls a day we are fine with 3 calls mainly because i can’t really help in the am with little one and i’m not confident hoisting by myself so if mum is in wheelchair we need someone to hoist her back in to her recliner. i feel wev been fighting an up hill battle for so long and i know the current climate it’s hard to find anyone but we all feel so hopeless. my mums care is not horrendous- log roll to wash on bed, hoist to commode, dress and go ( obv some knowledge on how to use the ventilator and plugging the equipment back in), it’s just so sad to see the quality of care gone so downhill and it being the morning it affects her for the whole day.

also because no care companies can be found we are using the social services “ back up” in house agency, i don’t think they can take that care away but it’s the last resort for care really until an agency can be found however what was supposed to be 6 weeks is noo p.o. w over 7 months and it feels they are just getting tired of her as they are not a care agency per se…


Did mum have NHS Continuing Healthcare are her old address?

Have you asked your GP to make a FAST TRACK application for her at your new address?

Is the GP aware that you are having such serious problems, as well as you being pregnant?

we have been told it all falls on the social worker but her hands are tied till the appeal gets sorted at new address- the appeal is about nhs paying for mums night care as there was a dispute on the dual funding aspect. the gp is aware of mums condition but i don’t think they know anything about the funding aspect, and i haven’t informed them i’m pregnant yet so will get on to that.

If the GP makes a Fast Track application which is successful it will cut through all this dreadful bureaucracy. You must be tearing your hair out in frustration.
Use your pregnancy as the lever, telling everyone about it and say that they MUST sort it out if they want mum to keep living with you - that will probably set off their alarm bells, because it’s cheaper at your place than anywhere else.

I’m afraid that at the moment, they tend to deal with whoever makes the biggest fuss, so make sure you write to them, not phone. Say in the email that you want a reply within 48 hours or…
Ask Social Services to arrange for you and mum to have a “Care Act Advocate” as your voice isn’t being heard, that’s someone on your side.
Also get your husband to contact them independently, along the lines of “How do you think my pregnant wife can …”
If he is doing any sort of personal care, tell him to write and say how he feels about this.
Copy all your emails to the local councillor.
Write (email) to the Complaints Department of Social Services HQ, not the local office. You can usually make a formal complaint online via the LA’s website.
I’ve had way too many battles myself, I know just how awful it all is.
Have you contacted the MND charity to help you?

thankyou, we will contact the GP, it feels like such bad timing with the pandemic but we can’t go on getting below par care- mum has already had 4 UTIs this year, trauma to her catheter on regular basic from pulling, and pressure sores getting worse- for an extremely “ with it” and intelligent lady i can see the pressures getting to her as it is us all. we have over 50 years combined nursing experience between us both me having to give it up because of the circumstances but we are left clueless on the community and social side of things - it really is so sad. thankyou for all your suggestions it def gives us some things to look in to x

One of our other members has an elderly husband with pressure sores, the District Nurses are involved.
If you look at the NHS website, they put great importance on avoidance and treatment of pressure sores.
Maybe print it off and use the words on there to get that issue sorted out.
Does mum have an air mattress and hospital bed?

yes she has a hospital bed with pressure relieving mattress and foot supports. we are on first name terms with the district nurses as they come out atleast every fortnight due to catheter or infections. last week they had to come out 3 times, twice due to the morning carers incompetence. we are on waiting list for subrapubic catheter and to get a customized hoist sling due to the issues of catheter pulling and causing trauma leading to infections. oh it makes me so mad some of the things that are left undone- her catheter overnight bag was left with urine in and the end cap off that leads it to being a perfect site for bacteria to get in and potentially cause another UTI- i had to throw away the overnight bag which is a waste of equipment and money.

Emma, lots of members with similar problems have found that keeping a diary of your own and taking pictures gives concrete evidence. The Care Quality Commission would be very concerned to hear of your problems.