SDS payment Guidance

Legislation & Guidance
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I’m looking for advice and guidance regarding Self-Directed Support (SDS) funding in Scotland.

My mother is in the advanced stages of Parkinson’s disease and now requires full 24/7 care. She is completely dependent and cannot take even a single step on her own. She needs hands-on support with everything

— toileting, feeding, washing, dressing, repositioning, getting in and out of bed, and constant supervision due to high fall risk.

There are times when she suddenly loses all strength in her legs without warning. In those moments, it is impossible for one person to manage her safely. We have literally had to lift her in order to move her or help her walk. It takes at least two people during these episodes to prevent injury to her or to ourselves.

Currently, four of us are sharing round-the-clock care. The SDS payment we receive is £3,000, and it is nowhere near enough to cover the level of care she requires. The physical and emotional toll on us is becoming overwhelming, and the situation feels unsustainable.

I would really appreciate guidance on:

Has anyone successfully requested a significant increase in SDS funding for advanced neurological conditions?

What evidence helped your reassessment?

Is there a typical funding level in Scotland for someone requiring full 24-hour care?

Would this level of need qualify for additional funding streams (e.g. CHC/NHS support)?

Any tips for strengthening a reassessment request?

We want to keep her safe and cared for at home with dignity, but without proper financial support, we are struggling.

Any advice or shared experiences would be hugely appreciated.

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Hi @Rauf007

Is the £3000 a monthly amount and what does it currently pay for/where are the gaps?

Do you and any other unpaid carer receive any support for respite?

It might be worth saying which Local Authority area you are in, as what can be expected can vary quite significantly between them, including how funding is allocated, and the best advice will be from someone with direct experience.

I would also recommend you speak to your local SDS and/or carers organisation, if you haven’t done this already: Find Help - Self Directed Support Scotland

Justin

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£3000 a month is total amount we get for caring for her. Basically there is 1 carer beside her 24/7. We cant leave her alone and sometimes we need two people to carry herbto the toilet when she is having episodes. I feel £3000 is far below living standard for 4 carers a month.

And none of the carer gets respites. I dont even know what that is

We are in Renfrrwshire Council area

Appreciate your feedback. We are all struggling a lot.

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It would definitely be worth contacting Renfrewshire Carers Centre, if you are not already in touch with them. They can offer advice on a range of things, including social care/SDS and breaks from caring: Adult Services - Renfrewshire Carers Centre

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