Hello,
My mum was admitted just over 5 weeks ago having suffered a stroke (clot). She also has AF.
We had a meeting with my mum’s care team (sorry not sure if that is the right terminology- but basically, Dr, physio, - the nutritionist and speech therapy failed to turn up. They advised mum (82 years next week) is medically fit however she has aphasia, is not eating or drinking, doesn’t move out of bed (pain or fear - probably both), has a catheter and unable to open bowels. She appears very confused too and as if everything outside of where she is doesn’t exist. We show her photos of her garden and family etc but she doesn’t seem to recognise anything.
We left the meeting on the understanding that the discharge team would be in contact and give us support on where she can be safely moved to. This is fine, I have no objection to her being moved to a care/nursing home as she may do better there.
I received a call from the discharge team thinking ok this is good news - we will be advised on options and what would be best for mum and us. To my horror was told that she only has the option of being sent home and can leave right away.
The house has not been inspected. I advised she lives alone with my disabled dad who is also elderly and going home in the above state is not an option. I was then repeatedly told it is the only option and even when I said I have seen other patients in the ward who were in a better state move to nursing homes - I was told everything had changed last week.
I left the call as I needed to speak with my husband as this is a total shock and cannot believe that they are discharging her home which is totally unsuitable at this stage. She needs care 24/7. My dad will not be able to cope at all and I cannot live with them. I have to work and cannot be on call to help dad every time he goes into panic.
I am at my wits end and have gained some advice from other groups but was also advised to join here. Surely there is criteria involved when discharging a patient?
It isn’t a case that I do not want my mum home but a strong case that she is not suitable for home at this point in time. There was no mention of physio or speech therapy which she so badly requires in addition to standard care.
Any advice on questions I should be asking, people I should be talking with would be gratefully received.
Hi @SharonH79 welcome to the forum, I’m so sorry to hear of your mums stroke and what you are being put through
Have you seen your mum’s MRI, how badly damaged her brain is, have they told you? I thought for any patient fit enough to be discharged they to have had at least one urine and one bowel movement.
Has there been any mention of being PEG fed (being fed through a tube), a procedure called percutaneous endoscopic gastrostomy before discharging her? Or any mention of palliative care perhaps - which is end of life care basically?
This all seems a rather ruthless and callous, brutal, if none of that has ever been discussed. I think your first port of call is to speak to someone from hospitals’ Patient Advice and Liaison Service (PALS ) What is PALS (Patient Advice and Liaison Service)? - NHS
Also call the Stroke Association Helpline 0303 3033 100 to seek their advice.
Hi @SharonH79 & welcome to the forum. Sorry to hear of your mum’s stroke & the subsequent frustrations.
I was under the belief that they can only discharge people if they will be safe and once any adaptations have been put in place. If they need care & no one at home xan provide that care then they should put it in place for her. I would definitely speak to PALS as a matter of urgency as @EmeraldEyes has suggested.
I know they are desperate for beds but they still have a duty of care. Maybe try speaking to your local adult social services to see if they can help. Try your MP too if necessary.
I assume you have but please tell them there is no one to look after your mum at home.
My mum was recently in hospital & although she had been declared medically fit for discharge she still wasn’t discharged until care was put in place & any equipment she needed because she lives alone & couldn’t look after herself temporarily.
Welcome to the community. Sorry you’ve had a reason to join.
The above references to Pals and the stroke association hotlineand adult social services are all good first ports of call.
Ask them 1st each what other agencies exist in your area who can help. Ask them second who has what statutory obligations. Ask them third which elements of the total journey they cover and who they liaise with for other parts of the patchwork.
I’m pretty sure adult social services both has a responsibility and will have interest and knowledge that other agencies do their bit and don’t just dump problems on them You and ultimately them
Different strokes maybe another source of advice. There are also often local small charities and support groups. For example where we are in the Lothians there is a organisation called VOCAL who give support to family carers and therefore know how to engage care services
The government has published stroke care pathway documentation That sets out what their expectations of health boards are - knowing the care pathway may allow you to question gaps, refute some claims and half truths in what you are being told
Thank you all for your responses and advice. I’ll be sure to get in touch with the organisations and people suggested and build up both my knowledge and rights of both mum and our family to support her the best way possible without being bullied into anything.
I’m so sorry about your mum. Sending you lots of love and strength. I know how stressful and traumatic this is. PALS and The Stroke Association will advise you appropriately, but ask them about how you can get a social worker from the hospital team involved. Insist of this, as they should help you decide where mum should go. We’ve just gone through an unsafe discharge so my mum, and this time round - 2nd discharge - we’re being incredibly stubborn about what we want for mum. And I insisted on having a social worker involved as soon as mum was re-admitted.
Hi Sharon
You’re story is very similar to my poor mums. Mum had stroke and had thrombectomy in April. Before stroke she was self sufficient in every way, even at 87. Now shes bed bound, with double incontinence, and worsening dementia with a total inability to believe she cannot walk and feels shes invincible, but sadly she cannot walk. OTs seemed to have given up on her at early stages now her muscles are atrophied plus mum was totally exhausted to exercise. Cut a v v long story short. She was discharged home to her flat with me. They priovided me with a hoist and sara steady which the carers never used as they wanted to change her pad and out. She has subsequently fallen out if the low bed twice and is hospitalised again now with a pelvic fracture …i had to resort to going to PALS as theyd ordered the wrong bed without a crash mat?? Mum.is v weak and hardly eating and i have said this time that she now needs constant supervision until she has partly recovered at least. Ive got no support from my family and feeling like im battling against the hospital to get the right care for mum. She tries to get out of the bed as she believes she can walk.and this has become dangerous for herself and me. She needs special care. My advice woukd be to go to PALS if they are not listening to you. Also fight your ground too with the nurses on the ward too…they are only too happy to discharge a sick patient to get someone else in, for them to return to the hospital as an inpatient again xxx
Just popping by to say Hi @Gabytron1515 and welcome.
Sadly your experience seems to be becoming more & more common. We shouldn’t have to but we have to fight really hard for what’s needed these days. A sad state of affairs indeed.
Hope your mum recovers from her pelvic fracture & that you get everything she nerds in place before they discharge her again.
Good luck
she cannot walk. OTs seemed to have given up on her at early stages now her muscles are atrophied plus mum was totally exhausted to exercise. Cut a v v long story short. She was discharged home to her flat with me. They priovided me with a hoist and sara steady which the carers never used as they wanted to change her pad and out. She has subsequently fallen out if the low bed twice and is hospitalised again now with a pelvic fracture …i had to resort to going to PALS as theyd ordered the wrong bed without a crash mat?? Mum.is v weak and hardly eating and i have said this time that she now needs constant supervision until she has partly recovered at least. Ive got no support from my family and feeling like im battling against the hospital to get the right care for mum. She tries to get out of the bed as she believes she can walk.and this has become dangerous for herself and me. She needs special care. My advice woukd be to go to PALS if they are not listening to you. Also fight your ground too with the nurses on the ward too…they are only too happy to discharge a sick patient to get someone else in, for them to return to the hospital as an inpatient again xxx