I have been reading this forum for the last few weeks and it has been very helpful.
I have some questions and was wondering if anyone here could help me.
I care for a family member who has epilepsy (approx twice a week). After a seizure he becomes paraylsed on one side (Todds paralysis) and is basically unable to do anything. This can last upto 48 hours.
Now that I will be going back to work, I got him an assesment from the council who said he can have a personal budget, which works out to be approx 20-23 hours a week at minimum wage. Council said they work out PA’s cost based on minimum wage. This allows him to hire someone of his own choice and not have to deal with being an employer.
The assessment itself was thorough enough but I don’t feel the amount of hours per week is enough. They did state that due to his fluctating condition and unpredictabilty that that’s all they can give. On the last page of the assessment it says that he is recommneded to have a CHC assesment but the social work said that he will not get it so hasn’t done the checklist. I know, from looking on this website, there is a question about altered state of concious on the checklist for CHC.
The questions I would like answers to are:
Do the hours for his condition seeem normal? Paralysis can last upto 48 hours but is only on one side of the body.
Is what the social worker said about CHC right? He basically said that it is extremely diffcult to get CHC.
He had an OT assesment for a wetroom in January 2020 but this hasn’t been done due to Covid and they are saying dates should be given by Novemebr 2020. Do we have to wait for council to install it or can we find a company on our own and ask the council to pay if the company we find can do it quicker?
Does an OT provide an electrical bed and if they do is it a hospital bed type? He won’t need it 7 days a week but if we buy our own instead can we include it as a disability related expenditure?
The social worker said that they have balance his independance with his care due to his age (in his 30’s). He does need help with everything as he has paranoid schizophrenia as well which stops him doing things he is able to do at times. So sometimes if one thing isn’t affecting him then the other can or both can be affecting him at same time.
Now that I will be going back to work, I got him an assesment from the council who said he can have a personal budget, which works out to be approx 20-23 hours a week at minimum wage. Council said they work out PA’s cost based on minimum wage. This allows him to hire someone of his own choice and not have to deal with being an employer.
The usual maximum is four care visits a day often lasting 30 minutes each, but sometimes an hour - however - the number of care hours allocated should be based on needs and not on what is usual. Have you seen the care assessment and care plan? Is it a fair and accurate representation of his needs? If not, then challenge it.
On the last page of the assessment it says that he is recommneded to have a CHC assesment but the social work said that he will not get it so hasn’t done the checklist. I know, from looking on this website, there is a question about altered state of concious on the checklist for CHC.
I would request and a CHC assessment regardless of what the social worker thinks - his epilepsy is uncontrolled - if it was controlled he wouldn’t be having two seizures a week. The NHS CHC website states,
how unpredictable they are, including any risks to your health if the right care isn’t provided at the right time
which is valid in his case as he could have a seizure when the PA isn’t there and fall and hit his head for example.
I can’t give answers to your others questions, as I don’t know - but hopefully others will be along who do.
Definitely get the CHC Assessment done, it is the responsibility of a HEALTH worker, not a member of Social Services staff, to do.
Were you offered any epilepsy electronic alarms, or an occupational therapy visit?
I would ask an epilepsy charity for advice, they are more expert in this sort of area.
The usual maximum is four care visits a day often lasting 30 minutes each, but sometimes an hour - however - the number of care hours allocated should be based on needs and not on what is usual. Have you seen the care assessment and care plan? Is it a fair and accurate representation of his needs? If not, then challenge it.
I have seen it and it is mostly fair and accurate. I told the social worker about a few things that need to be added. He said he would add them in as notes on the sytem or something but it wouldn’t change anything in the assesment in regards to the hours etc. The reason I think/know he needs more hours is due to the side effects of his seizures mainly the paralysis of one side for upto 48 hours were he would need someone for that time period so I am not sure how 20-23 hours can cover that along with taking him out, gving him medications everyday, food etc. So even though we agree with the bulk of the assesment it is just the number of hours which I can’t get my head round.
During the lockdown since March 2020 people were a lot more free to help and also they were working from home so people were more flexible but now we are starting to go back to our offices/workplaces.
I would request and a CHC assessment regardless of what the social worker thinks - his epilepsy is uncontrolled - if it was controlled he wouldn’t be having two seizures a week. The NHS CHC website states,
how unpredictable they are, including any risks to your health if the right care isn’t provided at the right time
which is valid in his case as he could have a seizure when the PA isn’t there and fall and hit his head for example.
I did ring our local CCG and they said referral has to made by the social worker.
Sorry to sound stupid here but I know who his social worker is but no idea if he even has an health worker and not sure what one is. Is his health worker his nuerologist, psychiatrist etc or is it someone ese completely different?
Were you offered any epilepsy electronic alarms, or an occupational therapy visit?
It was mentioned think he said it cost £5 a week. He currently has an Apple Watch which says it detects falls but I am not sure how good any of them are for seizures. I read up about some online and they say they detect a fall by seeing how long a person doesn’t move for.
I have seen the framework and the checklists but think the initial issue is getting that checklist done. Think they are just reluctant in doing one just to save money or maybe becuase of his age but I will ring the CCG tomorrow and see what they say as the care assesement does recommend an assessment now.
Hi M,
unfortunately, even if he is paralysed down one side, they won’t see it as we do. We see it as them needing someone there the whole time, incase they need something . Social care will see it as them needing help with eating, drinking and toileting etc Its the same for people who are bed-bound or immobile - they are stuck in their bed/chair between visits.
CHC is really your best bet, especially as he is so young.
Has his consultant exhausted all meds/ med combinations, to control his seizures any better?
I think its a good idea to familiarise yourself with the CHC assessment and criteria and as BB says contact epilepsy charities.
He has been on different combo’s every 6 months. He has taken some of the epilepsy medications in the past for his mental health problems so maybe he is just use to some of them. The seizure itself isn’t the problem as long as he isn’t injured, it is the side effects and issues after the seizure.
The seizure itself isn’t the problem as long as he isn’t injured, it is the side effects and issues after the seizure.
Yes I understand that. However, if the consultant could control them better he wouldn’t have side effects and issues as the seizures causing them wouldn’t be happening. Unfortunately he might not be able to achieve better control.
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
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
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?
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.
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.