Interim National Care Service Advisory Board: Advice to Scottish Ministers and Council Leaders - Self-Directed Support

Practice examples

The interim Board has much evidence of what good looks like including from Robyn who had a package of support with Option 1 which enabled her to get the personal care she needed but also to volunteer. Robyn explained:

“I felt like I was contributing to my community, like I was helping other people, which for me is a big deal – to take away that sense of uselessness.

“SDS transformed the world because my needs were met. Having a PA meant I was washed and dressed in the morning in time to go out. For my mental health, getting to meet up with folk, that I was spending a day out meeting other people, learning, having fun, great for your mental health. Being social, taking on my role, as a citizen … I am allowed to engage with those civil and political rights and gather information. Being informed is key! Making informed choices - I am not blindly making choices, my choices are informed!”

Max also described his package as being:

“built on a holistic care plan [which initially] took into consideration my physical impairment, neurodivergence and mental health all in one. Having access to social support was critical for my wellbeing and I was able to socialise as well as participate in peer support and my community [of identity] as well as activities. I could volunteer and contribute and I felt like a whole person.”

Maureen’s SDS package was flexible and adequate to meet her needs:

“It enabled me to use my support to go to the gym to build strength and endurance using the stand aid and Pedi-exerciser. I was better able to manage my condition by attending regular health appointments. I was able to have friendships and take part in my community and go to green spaces. All of this helped my mental health. I was also able to work because I could direct the support to help me get up in the morning, get dressed and my PA drove me to work and was there at the end of the day to provide personal care and support.”

However, the Board has also gathered significant and compelling evidence that cuts to Option 1 – direct payments – have created harm. In some cases this is resulting in people not being able to take up work, being forced to take medical interventions they might otherwise not need and ending up in residential care. In other cases it is forcing people to withdraw from social and community connections.

Robyn’s package was cut by one third resulting in her no longer getting the support she needs for her personal care and participating in her community:

“My last partner used my disability as the reason for leaving, I have made it plain simple, that my partner is not my carer. I don’t want for that scenario to come about like that again. Cuts to package have impacted how I feel about other people having to take on caring roles- especially in context of assisted dying… My husband has mental health issues – anxiety and depression. It is a challenge to be amongst people. So, the shopping is an issue. My husband has to have somebody with him….. I don’t have the support to go to any medical appointments as that is not included in the time. I don’t have support to do my evening things. I am no longer involved [with a named group] simply because the meetings are in the evening, it’s not when my PA is with me. It actually feels embarrassing, if I see folk from the meetings. I imagine they think I am not interested anymore – I am interested but I just can’t. Having the political drive and being engaged- it’s so frustrating that the freedom and agency has been taken away from me to attend. I am often very positive, but staying home a lot more has had an impact on my mental health. I’m just not looking forward to life in the same way that I did before my package was cut.”

Max’s package was cut in half on review, despite increased needs since the first assessment a number of years ago:

“I’ve been sitting in my chair since the early morning visit from my carer. I’ll be waiting until he returns at tea-time to use the toilet or change position in my chair which is a worry because I’m at high risk of a pressure sore. The lack of adequate social care also presents a significant lack of choice and control over my support and care, as well as day-to-day decision making. These cuts are having a big impact on my mental health and my physical health too.”

Maureen’s package was cut following review and she describes this as having a “massive and detrimental impact:”

“My life is like a stop watch – controlled, timed and minuted to ensure that I have support to go to the toilet around any other daily living arrangements. I rarely leave the house for more than a couple of hours at a time and feel like the “white rabbit in Alice in Wonderland” where I am consistently in a rush and anxious about being late back home in time for the carer as I need support to go to the toilet now and to get ready for bed. I’m also in danger of infections as I’ve been restricting fluids and my GP is suggesting a catheter as the solution to cuts in my social care package. I’m isolated and have taken voluntary redundancy because of the stress I was under due to the lack of support and cut to my package.”