Massive gap in care

[EMG_72]

Hi all. I'm new here, but I hope I'm using the community correctly!

I'm a carer for my 78 year old who had a massive stroke in Feb this year (2024). She survived it by some miracle but has complex needs as a result. Due to her need for slow but constant rehab, and her complex needs including need to support her lung health, the NHS and Adult Services aren't doing anywhere near enough for her.

I have to fight for almost everything she needs and the family need to pay for physio for her as the NHS has more or less written her off. She can't do intensive rehab as she gets very fatigued, which can then put her back.

We're even having to pay for an independent social worker to help us as her council social worker has been terrible and incommunicative (surprise, surprise).

Has anyone experienced a similar situation? Did you manage to find any NHS/ council funded solutions? What where they?

I'm convinced the council and NHS are discriminating against her as an older disabled woman. The assessments seem biased in order to find reasons not to help her. It's disgusting.

I'm in East Suffolk if that helps...

[fivestring]

I am so sorry to hear about your partner's problems, is she in Hospital or at home? I can't imagine what difficulties you are facing, so can only suggest your GP or your MP as they helped me with a few problems, failing that it's trying to get people to listen. You sound like you're a strong person and used to the battles, so I wish you all the best and you just have to stay strong and battle on!

[EMG_72 in reply to fivestring]

Thanks. It's my mum who's has the stroke. The MP is already on the case. The GP has been great but as there's nor sufficient community based rehab in place for my mum there's little they can do.

[Trevor78]

Heartbreaking and sadly not uncommon these days I fear. We have an overblown, inefficient cash strapped (well money being wasted & going to profits) health and care system with too many people chasing the limited help and services that they require. If you're not happy, question everything, collect evidence, and go up the chain asking for justification for decisions and actions. It's hard work but sadly expecting others at the bottom end to fight your case isn't going to happen. You need to get to, and past, the point where they think "oh no not them again" - I pray that you have the stamina and/or help around to fight your case. Others may have a simpler solution for you hopefully. 😐

[Digger0]

Sorry to hear about your problems. Have you heard about Headway? headwaysussex.org.uk

[EMG_72]

Digger0 Thanks, yes I have. They can't help as my mum needs to have the energy to travel to their rehab hub. She can't do that right now.

[skydivesurvivor]

oh my god!! A trying time!! I suffered a TBI back in 2000. Divorced, rehoused etc all funded by council/gov. A trying time for sure!! Not just a case of putting on another pair of socks?!! Hope u find help. Support here, please come to rant/ vent y frustrations whenever I learnt to smile to spite the cituation!! Try it? Down side though? They may section you!!

[Pammyi1]

Try ARNI (Action for recovery from neurological injury). They train up personal trainers to work with people who have had a stroke. Not free but worth looking into.