HELP WITH ASSESSMENTS FOR PERSONAL BUDGET

[M_2010]

Hi;

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.

I hope someone can help with the above points.

Thank you.

[Melly1]

Hi and welcome to the forum,

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.

Melly1

[bowlingbun]

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.

[M_2010]

Thank you for the response.

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.

[bowlingbun]

Have a look at the "CHC Framework" on the internet.

[M_2010]

Definitely get the CHC Assessment done, it is the responsibility of a HEALTH worker, not a member of Social Services staff, to do.

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.

[M_2010]

Have a look at the "CHC Framework" on the internet.

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.

[Melly1]

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.

Melly1

[M_2010]

Has his consultant exhausted all meds/ med combinations, to control his seizures any better?

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.

[Melly1]

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.

Melly1