Hello to everyone

At the beginning I would like say that English is not my first language and I’m still learning🙂 I have found your forum really useful. I’m a career to my son because of his genetic metabolic disorder and epilepsy, he is 7. Also have 11 years old daughter who is a gymnast taking part in a many competitions around the UK ( I’m travelling with her). My husband is working away and is available only on Saturdays. My father in law,75, is living with us in our 3 bed ( in small box room), we are sleeping in living room. One week ago he had a stroke which left him paralysed on his right leg and hand, lost his speech completely, with double incontinence. As we are very new and fresh to this I would like to get as much info as I can. He is right now in rehabilitation unit, no one is able to tell me how long he is going to stay there, and also what is going to happen next. Already found info about safe discharge, care plan etc… but I’m so busy with my kids now I cannot imagine to take full care of him, without any help, and also this room he lived before is too small for such a big disabilities. He doesn’t have any savings, only receiving pension. I just wonder if I should start speaking with hospital now about our situation, or wait until they say about discharge. My son condition is so demanding and his treatment can be different on each day, depending on his weekly blood test results, I am in constant stress, without any help and scared that I will be his only career because we haven’t got any relatives here and my husband is away for most of the time. Any advice? good word? Don’t know what to do.

Tell the hospital as soon as possible that he CANNOT come home to you as you are already a full time carer for your son. Just keep using the same phrase repeatedly.

He really can’t come home to you. Be honest with yourself about this. Your children are your number 1 priority, more so given your son’s condition. And you really can’t keep sleeping in the lounge. You also need to have a good night’s sleep.

Discharge plan from the rehabilitation unit will have to be into a nursing or care home. He should have a needs assessment whilst still in the hospital. If he has no savings then the local authority should pay. If he has very high healthcare needs it might be that he qualifies for continuing NHS care (CHC). You might want to start looking at homes local to you so that you are able to visit easily?


If he has very high healthcare needs it might be that he qualifies for continuing NHS care (CHC)

If it’s needed , the MAIN thread for CHC :

Your current accommodation is now unsuitable for your father in law. There would need to be a home assessment carried out. However, what you have said here. I definitely not take that route.

Your father in law health and now become the next stage from home care.

A little update. Thank you very much for taking your time to read my post and for any responses. It has been 2 week from a stroke and there is still no movement on the right side of his body, no improvement in his aphasia. Yesterday I had an appointment with consultant and probably my father in law will stay in the hospital until end of the February. So that the plan for now. I was told that after this time they help to adapt my home ( private renting) and will be able to give me help 4 time a day with Carers coming to my house. When I metionied about NHS continue care plan consultant told me they are not doing this in hospital and he is not likely to get it because not a lot people qualify for that. Apart from stroke I have noticed that his COPD ( stage 3) get worsened.


When I metionied about NHS continue care plan consultant told me they are not doing this in hospital and he is not likely to get it because not a lot people qualify for that.

I’ve read many " Opt out " statements over the years but that one is high on the list.

Utter nonsense !

( Except for not many qualify … no real surprise there … it’s rationed BY DESIGN : https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-rationed-high-time-to-ask-some-obvious-questions-33311?hilit=chc%20rationing )

Main thread … again : https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-coughlan-grogan-judgements-nhs-contuing-healthcare-nhs-fnc-hospital-discharges-all-under-this-one-thread-35998

Two sections :



Also , the actual discharge … reads as if NOT by the book :

Being discharged from hospital - NHS



The hospital have not listened. HE CANNOT COME HOME. Even if he does have carers 4 times a day, that won’t be for a total of more than an hour or two - leaving the other 22 hours to you. I cannot stress this enough, you are now fighting for your life, because if you don’t it’s going to be ruined until he dies.

You need to ask the hospital for a “Care Act Advocate” for you and for dad, as you are having difficulty in making your voice heard.

Care and Support Advocacy ( Care Act )
Do you need help to be involved in decisions about your care needs ?

An advocate can help you be heard, understand your choices and make your own decisions.

Find out about how an advocate can help you, and who advocates can work with.

This page also gives information about the role of an appropriate individual and provides additional resources from the Department of Health.

VoiceAbility | Care Act advocacy

I agree.
You cannot be stopped from applying for CHC. If you can find the check list and tick off what you feel should be the scoring it helps. You know more what you are up against.
I’m not sure how your the person who you privately rent from will feel about adaptions being made to the property? Use that, anything to ensure your father in law gets the right level of care, and you have some quality of life for yourself.


I’m not sure how your the person who you privately rent from will feel about adaptions being made to the property ?

Thanks Pet , I didn’t spot that bit !

If a BTL tenancy , there is no obligation on the landlord to go anything TO ALTER the property to accommodate a disabled person.

Guidance given to BTL landloirds :


Adapting Your Property

Although there are certain obligations on a landlord to make adaptations, the measures that you may need to take don’t include removing or altering what’s defined as a physical feature of the property. >

A physical feature could be:

any feature that forms part of the way that the property is designed or constructed.

any feature that’s part of the approach to, exit from or access to the property.

any fixtures in or on the property.

Things that you would not have to do, for example, include moving a drying area or a communal entrance for a block of flats.If a tenant asks to make adaptations, they have to make a request in writing, and any request must be ‘reasonable’. It’s also not necessarily up to the landlord to foot the bill for any alterations to a property that need to be carried out.

Disability Discrimination Act and Property Lettings

My recommendation : SHELTER … could be a problem :

Get help from Shelter - Shelter England

The very last thing a tenant wants is an unhappy landlord !

It might be worth your while sounding out local letting agents on " Disabled " friendly accommodation on offer , on your manor.

Please read the above in conjunction with the CHC element … if granted , COULD be your and your father’s salvation !

In the interim , a minimum of 6 weeks reenablement care would not go amiss ???

Care after illness or hospital discharge (reablement) - NHS

ALL-IN-ALL , THAT CARE ACT ADVOCATE IS SORELY NEEDED … and don’t spare the horses ???

I’ve just re read your initial post, looking especially at your housing situation, and this could be your best way of attacking the situation.
You have a son and a daughter who each have their own room, vital given their ages and your son’s special needs.
Father in law has been in your bedroom, whilst you sleep in the lounge!!!

Now it is absolutely vital that you move ALL his stuff out of the main bedroom and you settle back in there. Don’t delay, it’s vital that if and when there is a home visit there is basically nowhere for him to sleep. End of story.