Moving care from Switzerland to UK, help and advice?

Joletaxi

Hello. Thank you for setting up this community. I am excited to join it.

I'm writing this on behalf of my son and myself, and am hoping that some of you are willing to share your care and aid experience with us since we are in need of some advice please.

My son has pachygyria (a form of lissencephaly), resulting in a global neurodevelopmental delay, and pharmacoresistant epilepsy, and thus is severely disabled. He requires constant surveillance and help for most activities of daily living. He is now almost 30 years of age, and lives at home. In Switzerland, where we are currently resident, we have the right to 70 h a week of care, and I look after my son the rest of the week (essentially during the evenings/nights and the weekends). I recruit the carers and effectively act as the team manager, and the carers salaries are reimbursed by the Swiss social services. In this way my son benefits from 1-to-1 care which he needs because of his severe disability and in particular his epilepsy.

I am thinking of returning to the UK (my son and I are both British) to be closer to my family but I want to be sure to be able to set up a comparable care service for my son. I have asked the local authorities in the county where I would want to live re what I could hope to receive in terms of aid, and they will not commit themselves to anything and say that we need to be resident before they can start any assessment of our needs. None of the documents that I have here (medical documents, LPA, etc.) is recognized in the UK, and so it is basically a matter of starting from scratch. And of course it will take several months to carry out all the paperwork and the necessary needs assessment, creation of a care plan,  etc., leaving me in the situation with no help unless I pay for it (and I don't have the money to do that) and no guarantee that I will even receive suitable aid after the evaluation of my son's need has been carried out.

So that is the context. My question to you is the following. Are you or do you know of anyone in the UK who has a similar situation to ours? Does the UK social care system provide for someone who is severely intellectually disabled to receive personal care for 70 h or more (I’m not getting any younger) per week in their home, and to allow the legal representative to organize and manage the team and get the salaries reimbursed? Also, does someone who lives at home have the right to access day structures in order to ensure some social interaction? There are many other questions that I could ask but those are the two essentials. I decided that since I cannot get any clear response as to what aid I could expect my son to receive, I need to seek advice from people in a similar situation to ours. Thanks to anyone who is willing to share their experience and to spend a few minutes providing me with some advice and some practical information re the aid that you receive. If you think I should be raising this query on a different platform I’d be grateful to receive any suggestions. Many thanks. 

Alex_Alumni

Hello @Joletaxi thanks for joining the community and reaching out with your query. To help our members advise you as best they can, I've edited the title of your post and moved it into our Independent Living category. I'm afraid I lack the relevant knowledge to answer your question directly, but I'll certainly look into it for you.

Let us know if we can help with anything further

chiarieds

Hi @Joletaxi - & welcome to the community from me also.

It certainly must be very difficult to get the info you need to ensure your son might continue to be well supported if you moved back to the UK. I'm afraid all I've been able to do is put together some links from Scope, & from looking online, & I hope some of it may be helpful, even if it doesn't provide all the answers. So, please see:

https://www.scope.org.uk/advice-and-support/adult-social-care/

https://www.disabilityrightsuk.org/being-control-getting-personal-assistants-pas

https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/when-the-council-might-pay-for-your-care/

I don't know if your son might qualify for this, but you may consider contacting Beacon for advice:

https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/

https://www.beaconchc.co.uk/

https://www.moneyhelper.org.uk/en/family-and-care/long-term-care/do-i-qualify-for-nhs-continuing-healthcare-funding?source=mas#

There's a support group for lissencephaly, & you'll see from the following link that there's a contact email for the UK:

https://www.lissfoundation.org/contact

I'm just wondering if you might find a parent with a child similar to yours, who may be able to discuss with you the pros & cons of adult social care in the UK.

My best wishes.

Joletaxi

Thanks to you bekindalways, Alex_Scope, woodbine and chiarieds for your helpful replies. You have given me some good food for thought and some pointers that I will follow-up. I am very grateful.