When caring poses a danger to carers (TBI with SCI)

Hi, i’m Anna and this is my first post. I am the grown up daughter off a man with severe brain damage and paraplegia. My dad fell off a roof three years ago and has been living in unadapted accommodation for two years and wit(out access to running water - let alone a bath, shower or toilet. My mum is his full time carer - left a managerial job in the NHS to care for my dad. She is 65 and recently diagnosed with osteoporosis.

Through rigorous physio my dad managed to walk a few paces aided with leg braces and a Zimmer frame. His physio ended in feb. Since then he refuses to do exercises and no even get out of bed unless to use the commode.

Due to muscle wastage and refusing to exercise he can no longer weight bare so my mum has to physically lift him off the bed and into the commode up to 20 times a day. (It’s rarely more than wind but utterly exhausting for mum.)

Because his brain injury affects his ability to see things from other peoples perspectives we are at a loss because he hears only what he wants to when anybody tries to encourage him. He doesn’t care that his choice to not work at his core strength is impacting my mothers health.

As far as social services goes - they are a pair of ears but of no practical help.

I have had enough of banging my head against a brick wall with both my dad and social services. I need my words to have some sort of meaningful impact. So I’m taking time away from helping to care for my dad - it’s bad for my self esteem and my children’s - and I need to make some formal complaints because the city of Edinburgh council have just left this entirely up to my mum and me.

Hi Anna … a sorry state of affairs to say the very least.

Three links for you to consider … especially the second one.

HOME CARE SERVICES … what’s available and who provides them :

CHC / NHS CONTINUING HEALTHCARE … offered / considered / refused ?

NEEDS ASSESSMENT … upto date through the LA ?

The Care Needs Assessment Explained | Age UK

Hi Chris, thank you for your reply.

A needs assessment indeed has been completed however too few care companies opperate in our area hence the lack of support for my mum. Social services could only come up with one of the two carers required but refused to allow the one to provide the service because of the risks involved — i.e. it would leave the council vulnerable to being prosecuted should a risk happen into an accident.

In terms of residential care and respite - a full five weeks allotted - however this comes with the usual guilt tripping of carers and accusations of being ‘punished’. He WILL be going back - it’s just a matter of when!! Also finding a care home equipped and with carers who don’t make a big thing out of wiping arses and actually have some sort of experience of helping people who can’t weight bear and who have brain damage would be nice - at £2500 a week respite you’d expect people to mince their words even for the rudest guest. My dad honestly can’t help but be the worst type of patient/resident and has what I deem “unreasonable expectations”. He might well be abusive to his family but how can he expect decent treatment in a care home when he behaves that way toward complete strangers?. Such is the predicament of brain injury and of a disposition of trying to come to terms with part of your being being removed from you. You might hope people Woking in care to have a bit of empathy and skills in comforting people.

So what do we do? Do we report social services in our local authority to an ombudsmen or report their failings to the social work council? Do we sue when my mum breaks her back lifting my dad because they have been too ill equipped to facilitate the services they are required to instate?

Gulag is very fitting. I am very angry that my mum has been forced into this position by a council who are ill equipped to deliver the services put down in Scottish legislation.


So what do we do? Do we report social services in our local authority to an ombudsmen or report their failings to the social work council?

If all else has failed … including the statutory complaints process … YES.

Don’t lose sight of the CHC / NHS Continuing healthcare link.

Opens up a whole new ball game … and it is FREE if granted !

( Gulag ? 8 odd million inhabit Carerland … ALL are subservient to their caree / The System ? )

So I tried with that link but the quantity of info therein is beyond my scope atm.

We are in Scotland so I don’t know if this will apply.

Also we initiated my dad’s discharge due to the abusive nature of the Scottish brain injury rehabilitation service and their use of drugs to make more manageable patients, their inept falls procedure, and their refusal for allowing my dad spinal decompression surgery and rehabilitation at a spinal unit. But i’m Sure that would be an interesting avenue to push the legislation down.

It feels so much is against us. Why is it we have to fight tooth and dagger for the most vulnerable in society? Why isn’t this easier?

Subtle changes in Scotland … CARE INFORMATION SCOTLAND is the BIBLE for care related matters :

Hospital Based Complex Clinical Care | Care Information Scotland

Main site … home page :


You say their home lacks even basic facilities. In all honesty, it sounds like it’s unfit for human habitation. Do they own, or rent, the property?

In England I’d suggest contacting the local housing officer from the council who can force a landlord to improve the property, if rented. Otherwise there are “Stay Put” grants. Sorry, I know nothing about the Scottish system.

Hi bowlingbun - facilities are there - they are just completely inaccessible for my dad who is now paraplegic. And my mum is so busy caring for a man with high needs she barely has time for one shower a week let alone hoover the house!

Actually dad got out of brain injury rehab in 2017 and we have been trying to get the money together to adapt for wheelchair user facilities. Work started a matter of days ago. But honestly, the home situation is a bit like camping, and could be worse. It isn’t nice for my dad though and his skin health is suffering, he smells, and his mood is rock bottom.

My mood is rock bottom with this. Brain injury can make people abusive. My dad is so horrible to me… to everyone! So i’m Taking a step back to regroup. But I can’t leave my mum in that dysfunctional environment. It’s a right mad house. My dad is delusional and kinda lost in time and place. Can’t remember what happened five minutes ago. It’s completely nutty. And not in the good way.

Chris, just reading info:

LThe Public Bodies (Joint Working) (Scotland) Act 2014 sets out what the Scottish Government is aiming to achieve. It’s established a set of nationally agreed outcomes, which will apply across health and social care, and for which NHS boards and local authorities will be held jointly accountable.”

To Whom are they held accountable? Because my local authority is NOT delivering any of the objectives outlined in the document to my family.

Sent a letter of complaint to Scottish government. Need to frame my letter to social services adequately.

Stage one … we have ignition ?

Just the same in England … papers / directives galore but … at street level ?

Well it is almost bonfire night :fire::fire::fire:

I am angry about this Chris. I want social services to stop failing people.

Me , you and … 15 million others ?

THr money is there they say, we just don’t have enough carers to deliver the legislation…wtf??

Like in England , the monies available at the LA level are not enough to meet demand.

Main LA thread tracks the meltdown across most support services … and … to add insult to injury , rises in Council Tax which hit the poorest the hardest.

So, I can probably do only enough to challenge the authorities responsible for my dad’s particular case and it probably won’t go far enough.

What organised movement is happening that is really going to make an impact uk wide?


What organised movement is happening that is really going to make an impact uk wide?

Zilch … more chance of a nationwide protest if Corrie / East Enders was cancelled u.f.n. ?

What benefits is dad receiving?
Is an Occupational Therapist involved in the adaptations?
Do you have a district nurse involved?

Yes everyone involved. On third OT. Lacks experience imo. Doesn’t have a clue about how to toilet someone with spinal cord injury and knows even less about equipment available for carers with disabilities. (Mum has osteoporosis and arthritis and has Very limited dexterity.) Shed now has an array of pretty useless paraphernalia thanks to these people.

Have district nurse - no adequate training on neurogenic bowel. Cancelled the spinal injuries units continence prescriptions for dad as they ‘have no budget for it.’!!. Shocking. Everyone with at least one foot in. Except personal care and respite.

Care company dropped dad like a hot potato end of March for complaining. We have been waiting ever since for another company to pick up the contract and daily send enquiries to care service providers.

Goodness knows what happened to the elusive creature: the social worker. Constantly AWOL.

We have been on this road since 2017 when dad came home from a year in brain injury rehab. I managed to get their finances sorted (they both worked full time before the accident but had no legal or financial back ups in place in case of accident) once we managed to get dad assessed as having capacity to appoint PoA to mum. Old fella luckily just qualified for pip before his 65th bday. Has small state pension coming in. Think they have council tax discount for severe disability sorted. I don’t know if they qualify for anything benefits wise. Mum had to draw her private pension early as she had to stop working the day after the accident, so severe the trauma, and gets CA if you can call 5hat a benefit.

Just started building a ramp and en-suite bedroom extension. Build isn’t starting well. Built ramp without turning space and put in a door without a level threshold. Not what’s on architects drawings.

Meanwhile dad came home from respite early because he couldn’t hack it. Spent the day sitting in his own poo watching the builders put in this door to his front room. Couldn’t make this stuff up. Bonkers!!

Has anybody actually changed anything through escalating complaints? Is it worthwhile, do you end up getting the care plan you are entitled to?

Yes … an examination of the published cases brought before the LA and Social Care Ombudsman are very revealing :

Decisions - Local Government and Social Care Ombudsman

Several hundred to whet the appetite ?