Self Directed Support

Hi, i’m new to the forum. I looked after my elderly mum who has dementia and we had a really bad experience using self directed support option 1- Direct payment. There were restrictions on what I could and couldn’t access and private care companies were not always able to provide the care we needed. When she needed extra respite care to recover after a fall at home, I was unable to access this with direct payments and consequently she ended up in long term care, which is extremely upsetting for us. Now ongoing issues financially having been given only residential funding not nursing and house could be at risk, yet no clear information given to us. Has anyone else used direct payments for older age group and if so do you have any recommendations ? as I wouldn’t want this to happen to anyone else. Thanks Nancy

Have you had a needs assessment?

Nancy, everyone is supposed to have a CHOICE about how their care needs are managed, but many Social Services staff don’t yet realise this (a battle I’m having at the moment).
First there should be a Needs Assessment
A Carers Assessment
Then SSD should work out how many hours of care are needed. From this information they should work out a
Personal Budget.
Then there is supposed to be discussion about how that money will be spent to meet the needs.

It’s all detailed in the Care Act Statutory Guidance, I printed off my own copy in the end, because this is the document the government says all SSD’s should be following.

Thanks for your replies. I didn’t really get a chance to get a full discussion of what my own needs were as everything escalated to crisis and it was a really confusing, horrible time… I gave up SDS because of the restrictions placed on it, as it didn’t give us the choices and flexibility that the legislation implies and there was a lack of information on how to manage it better. .Since mum went in to care and got interim funding in September, it feels like I am no longer considered to need anything as far as social services are concerned. I still visit her three times a week and take her out twice and there is a lot of practical and financial things to sort out. The whole thing is still so exhausting but I find it difficult to contact social services now. It’s another transition for mum and myself now roles have changed again. Still trying to adjust, but I am starting to get more support from Carer’s Centre and Alzheimer Scotland and reading the blogs on this site has really helped. Thx again

Forgot to say just had a quick look at care Act Statutory guidance. Will take more time to read it. Thanks for that suggestion

It is your choice. What do you want to spend money on? Ring your local council to ask for a needs assessment. What does she find hard to do? During your assessment, they might ask you some probing questions about your circumstances etc. Be honest as much as possible.
The next part is a self assessment form. You can ask for assistance with the form. The form contains questions on all aspects of self care, including the ability to stay safe when out and about and relationships. Give as much detail as possible. For each category, all you might need to do is to tick a box.
For more information, visit this link How to get self-directed support | Headway

Thanks for your reply thara

The statutory guidance makes it clear that the LA shouldn’t be too controlling, that as long as needs are being met, that’s fine.

Thanks Bowlingbun, I met my local MSP today by chance and explained my situation. Seems to be taking my concerns seriously. At least gives me a feeling of having some extra support locally. Thanks for everyone’s help from Carer’s UK. I attended the annual meeting and it was so reassuring to get peer support and talk to others Carer’s. Wish i’d Known about Carer’s uk before now, but hopefully can point other’s in right direction and continue to learn more myself . Best wishes to all

Hi Nancy, I guess you made it here! I’ve not been on for sometime but thought I’d check in again. M x

This is why I love the forums. If you have any other questions do not hesitate to ask.

Thanks Marie and thara x

How are things today?

Hi thara, thanks for asking. Ongoing waiting for news re funding and house situation. Went to workshop for carers run by Lifechanges Trust, followed by a conference event with other Carers and health and social care plus third sector - all openly discussing how to improve the system. Great for networking and local support as well as giving me strength to keep fighting for our rights. Someone from Lifechanges Trust mentioned a charity called ‘tide who acknowledge the complex feelings of grief that carer’s of people with dementia can have when the person with dementia is still alive. This is something I felt but couldn’t really articulate until I read the leaflet. I cried when I read all the experiences from people in the booklet because there was real understanding and so relatable. Still working through. Thanks again. Nancy

Nancy, you have mentioned “putting the house at risk”.
Can I ask how old are you?
Do you live in mum’s house?

I reclaimed £8,000 from SSD when mum went into residential care. Very often the social workers seem to be ignorant of the law, (or turning a blind eye?). They seem to forget that we’ve all paid into the system, and their job is to give those in need the support they need.

Hi bowlingbun, thanks for your reply. I am 57, single parent to teenage daughter. I gave up my house over 10 years ago to move in with mum to support her and for past 5 years have provided intensive support, giving up work on occasions and then trying to work part time.Recently I had an ongoing temporary contract for over 14 months but this wasn’t renewed, so i’m Very glad that I took early retirement from nursing last year in anticipation of future problems. Still struggling and using savings and need time out to try to adapt to all this. Feels like you get hit from every part of the system. Social services management were very clear that our case was now closed as far as SDS was concerned. Do you mind me asking how you managed to claim back ? I have got a solicitor to send letters to clarify what is going to happen about the house. It remains in mum’s name, but I paid all council tax etc for over 10 years. Social worker said we would be safe in the house for now, not sure long term, but still nothing in writing and this has been going on for months, so remains very worrying to the point I have asked my local councillor for help as well. Grateful for any suggestions. Thanks Nancy

Mum went from hospital to nursing home, but neither SSD or the hospital admitted responsibility for the move. I’m managed mum’s money very carefully and knew the rules regarding charging very well. For the first 12 weeks, any financial contribution should have related to income only. SSD said I’d signed to pay a top up (I have POA for mum) but I knew I hadn’t. The home issued mum with Notice to Quit, although she wasn’t liable for the fees, so I paid to stop mum worrying and then did battle with SSD. I can be terribly direct without ever swearing, when SSD kept interrupting me, I said if they weren’t going to listen to me I might as well leave. Clearly the woman I saw was used to being a bully! Anyhow she admitted that as they hadn’t followed proper procedures, they had to give it back to me. I am quite capable of standing my ground, but inwardly find it very distressing, without my background I would never have been able to stand up to her, This is all wrong. The government set the rules, the LA’s should follow them.

Thanks bowlingbun, your experience with social services sounds awful and it’s so sad that it all comes down to money and bureaucracy instead of having some compassion for what people are going through. No-one wants to put their relative into care unless all options have failed, but it feels like you literally have to make a case for getting your relative to a place of safety and with the shortage of residential care and high eligibility for nursing care I dread to think where it is all going. Like you, I found that I was talked down to and not given information, just expected to deal with random large Care home bills arriving. Needless to say I didn’t tell mum and have to pretend everything is ok, even though I have almost felt suicidal at times -scary stuff on top of losing mum to dementia. Few people understand that the system is so punitive. The outcome for us could have been so differ if the system encouraged open honest conversations. I think we may have been talking about different things when I said SDS, I meant self directed support- direct payment, which seems to be another potential minefield. It’s really hard to be assertive when so upset and not sure of your rights. But i’m Learning. Thanks for your help N

Happy to help.

Can you just confirm that mum has had a formal Financial Assessment from the LA, which looks at all her income and her outgoings?

Yes, financial assessment since June when I provided all the evidence and forms yet remains ongoing- and I had to submit more updated bank statements in Sept still no confirmation and no correspondence and that’s the hard bit. If you at least got an acknowledgement letter and a reasonable time scale, you would have a better idea of what to expect. If banks and businesses behaved like this the government would have something to say. Similarly the DWP are quick to send threats of penalising you for not letting them know about a change in situation, yet how can you let them know if you don’t know what’s happening until weeks or months later. So we are still at the interim funding stage in a system that makes me feel as though we din’t matter, despite all the care standards and government policies. So many double standards??