HELP WITH ASSESSMENTS FOR PERSONAL BUDGET

[PAUL72]

Hi,
welcome to the forum and i'm sorry to hear about your family member.
My wife has severe epilepsy and she has seizures most days, as you say though the side-effects can be just as difficult to cope with.
In our case we have a support package in place by Adult Social Care which has worked really well for many years, this covers most of the hours i'm out at work. We get approx 120 hours every 4 weeks. The wetroom is a good idea and hopefully this has been fully funded for you, if his epilepsy is still very much unpredictable i'm sure he'll still need supervision to prevent any injuries if a seizure occurs.
You're are also entitled to a Carers assessments in your own right so it might be worth asking about this as they can give you a few extra hours care cover so you get a break.
I hope you're family member does see an improvement with their condition with time, sadly for us we're at the end of the line with treatment options. The other members here have given some good advice.
Best wishes
Paul

[M_2010]

Hi,
welcome to the forum and i'm sorry to hear about your family member.
My wife has severe epilepsy and she has seizures most days, as you say though the side-effects can be just as difficult to cope with.
In our case we have a support package in place by Adult Social Care which has worked really well for many years, this covers most of the hours i'm out at work. We get approx 120 hours every 4 weeks. The wetroom is a good idea and hopefully this has been fully funded for you, if his epilepsy is still very much unpredictable i'm sure he'll still need supervision to prevent any injuries if a seizure occurs.
You're are also entitled to a Carers assessments in your own right so it might be worth asking about this as they can give you a few extra hours care cover so you get a break.
I hope you're family member does see an improvement with their condition with time, sadly for us we're at the end of the line with treatment options. The other members here have given some good advice.
Best wishes
Paul

Thank you for your advice. If you don't mind answering, have you ever applied for CHC due to her altered state of conciousness?

[PAUL72]

Hi,
No not at this moment in time but we have talked about it to obtain extra funding maybe in the future. It was the last government which sadly closed down the ILF (Independent Living Fund) where this was a pot of money for additional care needs so now there's no other option but to turn to the NHS (CHS & assessment process).
At the moment our direct payment works well and the people we have are great including a couple of family members, we have a good care plan that meets my wife's needs and it provides her with as much independence as possible helped by the people that know her condition best.
I hope you get things sorted.
Paul

[M_2010]

Hi all;

Adult Care has agreed to do the CHC assessment checklist . They did say it is very hard to get CHC funding.

A few other issues that have come up: (hoping someone can answer/advise)

The brokerage firm said that the hours cannot be used for night time and that the council don't do night time care. Is this true? They also said that this has to be funded by CHC. I understand the brokerage firm has to make sure the money is used correctly but they seem to be getting to involved. They said they would email Adult Care for clarification. Do they expect my family brother to his seizures so they happen when it suits them during the day? He was in hoispital the last 2 days becuase of his seizures and they happened at night (around 11PM) and continued.

Another issue the brokerage firm then someone from Adult Care had a problem with is how my brother can send an email and fill out a form for our dad. My dad recieves care and also contribute towards his care. My brother help him set up his direct debits and emailed Adult Care with any concerns our dad has and also emailed signed forms to the brokerage form. The brokerage firm said it is a conflict and how my brother is able to do it for our dad when he needs support himself.

I told them becuase my brother has disabilities does this mean he is incapabe to do anything such as filling in basic form and emailing it. All he was doing was emailing time sheets. The money goes straight to the brokerage form so I personally don't see what the conflict is and the only thing I can see is that from his assessment they have inferred that he is incapable of sending an email and incapable of doing any paperwork? He can do his own paperwork (with a big push). He also attended our dad's assessment with myself and they were asking how he attended it. Does this mean that anyone on benefits has to literally sit at home doing absolutely nothing and if they are capable of lifiting a finger then that means they are not disabled?

[Melly1]

Hi M,
I had a lot of trouble with the broker system getting morning support for S. They basically send out an email to all the agencies saying very basically what was needed. The agencies all wanted the job so said they could do it; the broker didn't check the finer details - they just picked the cheapest and sent the agency details to the social worker, he agreed and then gave me the agency details. When the agency realised what was entailed and what I expected (i.e. the care worker had to come at a set time as they were to look after S between me leaving for work and his transport arriving and S needed regular carers - not lots of new faces) they would then say they could no longer take on the case. On and on it went.

I think you need to check what the brief is from the social worker to the broker. If it's for night care - then that needs to be stipulated. Night care isn't usual but it's not unheard of. With the elderly, once they need day visits and night care - then the usual option is residential care. However, your brother is young and therefore his situation is different.

I don't see what business it is of the broker re your brother assisting your Dad.

Melly1

[M_2010]

Hi;

Update:

He has been in and out of hospital for cluster seizures over the las month.

A NHS nurse was due to come out and complete a CHC assesemnt a few days ago. (Social worker had completed the check list previously).

I received a phone call from his social worker one day prior to his appointment saying because he has started a new medication (Lithium), the assessment was not going to take place. I then asked for the nurse that was due to come down call me back about this. She stated becuase he started a new medication they have to see how the treatment affects him and wait for Lithium levels to stabalise etc becuase this may help him or not help him and when I questioned this she stated she spoke to her manager about this and her manager also agreed. She then said to me speak to Social Worker in March 2021 becuase tht's when he has his consultant appointment then we will see if it helped or not. Social Worker doesn't have a clue about CHC (all he said was it is really diffcult to get).

This all seems ridiculous excuse to me to avoid doing the assesment. If in March 2021 he consultant or any doctor decides to give him new medication then in theory an assesment could never take place.

I am thinking if I complain then they will come out and do the assesment and just end up saying he is not eligible and make it difficult for us.

Does anyone on here know if that is a normal (correct) policy/reasoning to not do an assessment or is it just a way to fob us off.