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Reducing care role and dealing with the LA - Page 3 - Carers UK Forum

Reducing care role and dealing with the LA

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Hi Lee,

This must have been a hugely emotional time for you. Now that your daughter is in a safe place, with a round the clock team of nurses, please take a day off. I do not make that suggestion lightly. Think of somewhere about an hour's drive from home that you like, have a coffee, lunch, take a walk, but most of all be very aware of how stressed you are and how tense your body is right now.

Have an evening meal out, go home, snuggle down in bed, with the phone off the hook, and get some sleep, safe in the knowledge that you can do this at last.
Just to keep you guys updated. She has been in hospital a little over 2 weeks and no progress has been made in finding community nursing support. I made a complaint to the health trust and a "Putting things right" process has started. after a meeting today it was agreed that an MDT meeting be arranged, this is because no solution can be found to support my daughter with rectal prolapses whilst awaiting surgery. So unless there is a breakthrough and a solution found she could be spending months on a hospital bed awaiting the surgery; the surgery needs to be performed over the border in England and the specialist that has accepted the referral has a very long list.

I think I am going to need to find a solicitor the specialises in NHS and Social Care, ideally education too but thats another story.
Over 3 weeks on a hospital bed and still no progress.

Consultant told a nurse to inform me its a six month wait for the operation and asked if I had any female family members or friends that could support her in the community whilst she waits for the op. Obvioulsy he had already been told im on my own dealing with this and no community nursing support can be found either.

So looks like she will be staying on a high dependancy bed for up to six months, obviously im now worried her mental health is going to take a nose dive and becomes a real challenge for the nursing staff to keep her safe.

I guess watch this space!
5 weeks now and at a cost to the NHS of roughly £10,400 not to metion the effect of losing a much needed hospital bed. How backwards this country is!
Be thankful ?

NHS ... funded through general taxation.

Social care ... depends on one's ability to pay.

Let's all hope that the NHS will continue to be free at the point of delivery ... with social care soon to follow ?

( No social care costs levied during her stay in hospital ??? )

( GREEN PAPER , SOCIAL CARE thread ... again. )
Lee_19041 wrote:
Thu Aug 22, 2019 3:02 pm
I’m looking for a little advice on how best to deal with LA if anyone else has been through a similar issue.

I care for my 21year old daughter 24/7, she has autism, learning difficulties, anxiety and catatonic features, she lacks cognitive ability to manage any aspect of her life. She is doubly incontinent, has eating disorder, constipation, rectal prolapsing and on benzodiazepine meds to reduce anxiety…lots more she requires support with but hopefully you get an idea of how much support she requires.

The LA have recently pursued my daughter for charging for the care she receives from them which I am contesting on DRE grounds i.e they have not properly assessed the costs of caring for her. This process has kick-started a whole world of upset resulting in me informing the LA I intend to considerably reduce the care im willing to provide, I have told them I can no longer support/care for 12hrs per day 7 days per week, I have given them a date that this should commence and requested reviews of care plan and carers assessment, and even kick-started an NHS Continual Healthcare assessment.
The LA have put no plan in place for the date I reduce care and are questioning me as to why that date is set. With this date fast approaching I am extremely worried, what should I do on that day, maybe call the duty crisis social worker? I just don’t know and the LA are showing no indication they will step in on that date.

Maybe I just carry on but this fly’s against the law surely?

Just to note I do not claim CA because its overlapping of bereavement benefit, lost my wife (mother to my daughter) 12 years ago. I have to put my daughter in a bath (she will not shower) twice per day, lashings of disinfectant (advised by GP) prompt her into the bath and give instructions to wash properly etc, I leave her to sit in the bath for 30ins and then go in to wash her hair (when needed). With her being a young lady and im her Dad it is obviously not possible for me to properly maintain her hygiene and dignity but the LA are more than happy with this situation even though there is nobody else able to help, no family or friends to step in.

Its all just a massive minefield and im sinking fast with it all, and I have 21years experience of dealing with all of this!

I hope someonme else out there as been through something simlar and come out the other side.
I was telling someone recently that the funding cuts will mean suffering. I care for my son with a physical impairment. He is a L1/L2 paraplegic due to open spina bifida. In our case, it is more about equipment that could make a difference. But even that is hard to find. I applied to the LA for a blue badge and have started the DLA appeal process too. I understand how you feel.

Have you requested a carers assessment or not? They will do a financial assessment as well. Good luck! Call the on call social worker for help. My son also is on meds but for different reasons. Also find out about what financial support you qualify for and start claiming. Have you ever had a break? When was the last time you had me time? It is time for a carers assessment definitely. If you need help filling out the forms, ring Citizen's Advice tomorrow and ask to speak with a benefits advisor. Or you can use their website https://www.citizensadvice.org.uk/benefits/