Welcome everyone and thank you for joining us today for our update on adult social care. I’m Molly and today we’re going to be talking about adult social care, the Casey Commission and why it’s so important that people living with SMA and disabled people more widely have their voices heard. I’m really pleased to be joined by Lauren and Jack who will be sharing both information about the commission and their own lived experiences of adult social care. So if we start with introductions, Lauren will go for you first. 

  

Hi, I’m Lauren and I’m 34. I live on SMA type 2. I live in London with my husband. I work in the third sector around policy and campaigns and have done quite a lot of work on social care in the past. 

Thank you. I’m Jack. 

  

Hi, so my name is Jack. I’m 32 years old, based in Manchester. I have SMA type 2 as well. I receive social care funded through a social care budget and have a full time living carer. I work in the financial sector for a US based international bank. 

  

Okay, brilliant. think Laura and you prepared a PowerPoint on the Casey Commission. So if we start off with you going through that, that’s okay. 

Cool ? so I’m going to yeah a few slides on the Casey Commission for social care and kind of what it is and also kind of what it means for people living with SMA. 

So as a quick overview, so what is the Casey Commission? So the Casey Commission is an independent review of adult social care in England, and it’s being chaired by Baroness Casey of Blackstock. It was set up last year by the UK government, and it’s really trying to kind of work out how social care is working now and what the kind of problems and concerns are. 

but also looking into how it should be in the future. And the big goal it’s trying to work towards ? is to shape a future national care service. So quite exciting if that is the case. So why is this important for people with SMA? So obviously, when you have SMA, you have a lot of different agencies involved in your life. So you will have PAs and carers, and that may be 

funded for direct payments or personal budgets or NHS continuing healthcare. You’re also going to have kind of input from local authorities on equipment and adaptions and housing. And hopefully if things are working smoothly, you’re going to have your NHS and social care working together. That obviously isn’t always the case. And obviously there’s also kind of a lot of ? input from MP carers and family carers. 

  

for those looking at S &A. And for those who have been through the social care process, we know that there are quite a lot pitfalls at the moment, whether that be delays in assessments, struggling to recruit, whether that be for agencies or directly, a massive post-care lottery. So depending on who your local authority is going to be dependent on what care you’re receiving. 

  

And I think a big issue as well is the transition from children’s and adult services. A lot of people with SMA or similar conditions will just describe the fact that you kind of forward the cliff edge when you reach children’s services. And also kind of the pressure that local authorities put on MPA carers to step in and fill any gaps within someone’s care package. 

  

So what’s the commission looking at and what’s it wanting to do? So Casey has really put quite an emphasis on listing people with lived experience. And they’ve done this with people that have social care budgets at the moment. They also have sessions on kind of MP carers and people that also work in social care. So they’re really trying to get kind of the broadest kind of input on kind of how social care is functioning in England at the moment. 

  

And what they really want to try and do is improve the quality inconsistency of care. So taking away the post care lottery element, but also making sure people are getting high quality care. And they want to do this by kind of looking at workforce pay and staffing and also kind of looking at actually how social care should be funded. And that will link into their ultimate goal of having a national care service. And that’s kind of, yeah, what they see is kind of the fair. 

and more sustainable system long term. I think importantly for Casey is also getting the government, all sides of the government, no matter what parties agree on long term reform. And I think we’ve obviously seen that multiple governments have tried to fix social care in the past and have always, it hasn’t come to anything. So I think actually having this independent person who can 

  

build those links across government is going to be really, really vital. 

  

So I thought I’d just focus a little bit on kind of what Casey has been saying to the public, because it’s quite interesting to kind of see her views already. So I think Casey has kind of described social care particularly as very fragmented and very confusing for users. It’s currently much too dependent on unpaid carers. It’s obviously underfunded and undervalued. I think we could all recognise that for those of us that have. 

  

a social care package. And it can be very separate from the AHS, which can make things really, hard to juggle. And Casey’s also kind of warned that she’s seen families that are just having to fight every single step of the way, that everything, everything is a challenge, nothing is ever straightforward. Social care is relying too heavily on women and unpaid carers. 

  

I think the link here is also that people are being pushed into crisis before actually getting help, that councils are not intervening when they should be, it’s only when things are getting absolutely diabolical that then they have to step in. And I think one of the really key points is that, as she said, that social care reform has been kind of left in the too difficult pile for too long. So as I mentioned, previous governments have tried to fix 

  

put parts of social care, but they’ve never kind of tackled it as a whole. ? So I think this is why the CASE commission is so important. And she’s also kind of points out that people don’t mind so much where their support is coming from, whether that be agency or organisation, but actually it’s what that care is and the quality that comes with it. She’s also kind of stressed, like I said, that lived experience is really key and that disabled people and their 

  

And Hikaru is also the board of social care must be part of this reform process. And I think one of the really exciting points is that actually she puts a real emphasis on social care, supporting people to live the life that they want to live, not just the basic personal care needs. Actually, it’s about independence and dignity and having the support to live your life the way that you want to. 

So what could this mean for the SME community? And I’ve of split this slide up into feeling helpful and feeling less helpful. So Casey is very open about where the system is falling down at the moment, and she seems to have a really good grip on that. She puts a real good focus on lived experience. think she’s constantly getting sent stories from… 

social care users about where things are going well and where things are going wrong and using that to kind of feed into her kind of recommendations. She also has really good kind of understanding of how social care is creating pressure on unpaid carers. Just last week, she went to the Carers UK conference and gave a keynote there, kind of talking about how she views the commission. 

  

as a tool to support and pick errors. And as I mentioned, she also talks much more about independence and dignity and not just basic care. But the concerns that are going on with people that have used social care and also those that work in industry, this is going to be a long process and the reforms are going to take many, many years. As of yet, there is no detailed funding plan. We know that the social care budget is 

  

very big and it’s growing every single year and any reform is going to need even more money thrown at it so you know where is that money going to come from. There’s definitely some worry that kind of working age disabled adults might get forgotten. ? I think we’ve seen in previous attempts to reform it’s been very much focused on older age adults not working age and I think that’s still kind of yeah just the concern that people like me definitely feel that 

  

is the report but mainly focused on older age adults. And also this is just going to be recommendations the government do not have to act on anything she says so that is obviously a really big worry. 

So in terms of the timeline for the Casey Commission, she will make her first report in 2026 this year and towards the end. And that’s going to focus on kind of practical improvements that we made quite quickly and using kind of current resources and kind of funding as it is. Phase two will then be in 2028 and that will focus much more on what long term reform should look like and also kind of how a national care service. 

  

Good one. 

So kind of what are the key issues for the SMA community? And I think when we’re looking at how we can interact with the Casey Commission, I think we really want to be focusing on the importance of being able to live independently in whatever kind of set up that looks like, and kind of having a choice about where you live, who you live with, and where you live in the country. Obviously making sure that people have really reliable care packages. 

As you’ve already seen, a lot of people estimate they will have to have back up support for families when their care package goes wrong. And how can the Casey Commission really kind of tackle that, so that isn’t the case? I think also making sure that Casey and her team are kind of understanding the more complex disabilities that kind of will tie in a lot of different kind of medical needs. I think also focusing on that support needs during hospital stays. So we’re obviously… 

  

aware that when someone’s an inpatient in hospital care can kind of fall apart or care can be paused completely and making sure that kind of that is tackled as quickly as possible. Making sure that any social care is kind of flexible so that people can study, work and have a family life that they want and I think this is a really kind of key point is making sure that kind of support is equal and fair across different councils so that post-care lottery is. 

  

removed and also making sure that the support for unpaid carers and siblings is there. 

  

So how can people get involved? So yeah, we’ve a lot about kind of how she wants to kind of hear that lived experience. And I think that’s where the SMA community can really kind of come through ? by kind of sharing your experiences of social care with Casey’s team, whether that be the good, the bad or the ugly, if she wants to hear it all. ? I know SMA care have their own kind of website, informational website. So I will let Molly talk about that in a minute. 

  

But you can also kind of get involved in other charities, advocacy groups that are feeding in. You can definitely share your story with multiple people. Yeah, the more input they have, the better. And you can also talk to your local MP or your local counsellors about the issues. I think local counsellors obviously are really key in this because their counsellor is the one that will be funding your care package to actually make it all there aware. 

  

of the reality of what’s happening in their borough and what’s happening within their social care department. And I think being really frank about how it is to live at SMA, how great things are when things go right, but actually what are realities when things do go wrong. And also encouraging any unpaid carers in your life, whether that be your parents or siblings, to share their experiences too. 

And that’s the end of my slides. 

  

Brilliant. Thank you so much for going through that. It was very helpful. I think, as you mentioned, all the policy discussions can feel very removed from day to day life, which is why lived experience is just so important, especially hearing directly from people that are navigating the adult social care. On that note, I thought it would be really good if you would be able to share your own stories of kind of your own care packages and a little summary of challenges you’ve gone through, the good things you’ve managed to get. Maybe if we start with you, Jack, just to give us a little summary. 

Thank 

  

Yeah, sure. So I think up until a couple of years ago, I’ve been sort of quite fortunate and quite lucky with my care package. So since when I turned 18 and went to university, so I moved away from home for university. From that point, I started to get kind of a care package. 

  

factoring in not having my parents there to provide personal support and kind of getting the live in support that I require to kind of live a healthy and safe but also kind of valuable, worthwhile and enjoyable life. So I guess that package kind of came in from the age of 18 and kind of adapted over the years as I moved from through university then into full time. 

  

work after university. I also managed to spend a year abroad as part of my university degree which was funded, or the care was still funded by my local council doing that as well. So yeah, I really got a good budget in place and it kind of allowed me to live that good independent life. And then really it got to a point that I think one of the negatives that Lauren mentioned around the delays in getting assessed that she probably worked then my advantage because then 

  

I got a good package in place and disability did not change too much. My knees didn’t change too much over the years and that package was working for me. The assessments were quite brief and it worked out well. But then that did change about two years ago, maybe a year and a half ago when I got a new social worker and we went through the assessment process again. 

  

and the package that had been stable for about 10 years or so, they then reassessed me and the reassessment resulted in a reduction of about 400 pounds a week in the care budget, which is pretty substantial. That’s kind of a significant number of hours across the day and also loss of hours overnight as well. So I think between kind of then, 

  

that point and now I’ve been appealing that decision, still kind going through that process also with the support of SMA UK charity, trying to reinstate that budget and in the meantime a personal expense covering the ? difference myself which is a huge financial burden that is not sustainable in the long run. So I guess that’s kind of like a 

  

an overview of my current situation and happily kind of dive into some of those different topics in more detail as we go through. 

Brilliant, thanks for showing that. really hope you managed to get it all sorted. That sounds like a little bit of a nightmare. Yeah, I can’t even imagine. Lauren, would you like to go through yours a little bit and what you currently get? 

  

Yeah, of course. Yeah, so like Jack, I got my first care package when I went to university at 18. I moved from Cardiff to Manchester. But yeah, my local kind of council at home also funded my care package from about university, where I used an agency for like the first few years. But actually that was quite a disaster. They were pretty useless. 

  

So I quickly moved to employing my MPAs from when I was about 20 and that hasn’t now changed in the last 15 years. I think my biggest challenge over the years has been moving to different local authorities. So once I graduated university, I wanted to move to London for work because I got job there. 

So getting my hair package moved from my home, council in Cardiff to where I was living then in Croydon was very stressful. Just no one wanted to pick up the slack and get things changed. And then I then tried to move between different London boroughs. I moved from Croydon to Greenwich. And again, that was just, took probably eight months to get that hair package moved over and like Jack. 

  

I was then kind of left in that kind of financial gap, which was incredibly stressful. The case since being in Greenwich, which has been about the last 10 years, I have been quite lucky my package has been quite stable. I don’t have like, have technically I get 50 hours of care a week, but Greenwich is quite a generous kind of budget holder and they do give enough that actually that funds me for 

live in care for like the whole working week and then kind of my husband will do my care on weekends which is kind of like a personal choice for us that we do kind of appreciate having a bit of just like time when there’s not carers in the house but I do then have kind of the carers on backup if they are needed on weekends but I think I definitely could have noticed in the past like few years that recruitment has become very difficult. 

And I have actually kind of raised this with my council to ask if they can help them. They just say exactly the same, like it’s a nightmare. Just keep doing what you’re doing because it’s working. But actually, you know, that is when a PA does leave and I am quite lucky that my turnover is quite low. But when it does, it’s like absolute dread that it’s going to take months and months to fill that gap. Or you’re going to end up with someone that’s not quite good enough because you kind of have to take what you can because you can’t be having a massive gap. 

Yeah, I think there’s definitely been some challenges over the past, more recently. And yeah, I think just that kind of the feeling of being quite limited by that, like, I don’t want to move out of Greenwich again, because it’s such a difficult kind of process, and it’s not financially doable that you have to confirm your care package in that interim. So yeah, that’s my general experience. 

  

Thank you. think you’ve definitely raised some points there that a lot of people also experience with definitely, especially moving away to uni and moving to different locations as well. It’s always a bit of a difficult one to try and figure out. But thank you both for sharing your experiences so openly. There are definitely so many more people in the community with experiences and perspectives that deserve to be heard. So to help make that a little bit easier, we’ve created a 750-word template that people can use to submit evidence and experiences to the Casey Commission. 

  

We’ve designed it to help people structure their experiences and highlight the issues that matter most to them. If you would like to share your story, you can go onto the SMA UK website under the KC Commission page and you’ll find the template and the link to submit for yourself. To finish off, is there any kind of final things either you think would be useful or bits of advice you can give or anything like that? 

Yeah, think there are quite a few things I think kind of think of when going through the assessment process, because I think when you go through it, from my experience, working with a social worker, 

  

They really try and put you in, I guess, trying to kind of put that care package and put you sort of in a box with like a very regimented set of hours. So wake up at this time, have dinner at this time, go to bed at this time. And I think it’s, there aren’t people, I don’t really feel there’s generally the support there to advocate for you. So you really have to kind of advocate for yourself when you’re going through the process to. 

  

to kind of make it clear what your needs are. I guess an example of this that I found really, I guess it’s bit really offensive kind of how they dealt with it, that they kind of wanted to say, we can kind of give this team to help support you through kind of in the meantime, kind of bridge the gap of care. But they said their availability would be kind of dinner at four o’clock every day and then. 

Bedtime routine starting at 5.45 PM, which is just ridiculous. mean, I’m not even home from work at that time every day. So I think it just kind of points to maybe a lack of kind of ambition or kind of expectation of what life with a disability is like. So I think you have to go in with the expectation that they’re not going to advocate for you. They’re not going to have a good understanding of your life. really being able to 

to portray the importance of these things in your life is key to go through these processes. I think a lot of social workers may not have a lot of experience dealing with people with maybe with such complex care needs, but then also who want to live such independent lives. So I think it’s kind of making them understand that balance is really important. think they would sort of come to me with the concept that 

  

maybe if they reduce the care hours it’s increasing my independence but actually it reduces my independence because there’s less I can do and I’m a lot more limited in my life so I think really kind of yeah advocating for yourself is really important in these processes. I think a lot of people kind of talk about like present yourself kind of at your worst to kind of what your days look like 

worst case scenarios. So things like if you’re unwell, maybe family towns may have to use a coffee sister on the day and kind of all the all the worst case scenarios and can be a bit creative with it. So I guess example for me was they were pushing back a lot about my care overnight because I don’t need rolling overnight. So their question was why do I need care support? 

overnight because most nights I don’t need someone to come in. I think worst case scenario, always got to think of these scenarios such as if there was a fire and needed to exit the building quickly, I can’t just rely on calling someone to come half an hour away to then get me out of the building. not practical. That’s not practical solution. So really try to make them understand the necessity of these care needs, that it’s not kind of a luxury that we’re working towards, but a real necessity. 

  

to kind of be safe, but also to kind of have a valuable life. Yeah, I think that’s really important. I guess it’s okay, so I think probably what I regret not doing kind of two years ago when I had that initial assessment that then caused me problems is really planning for those assessments, kind of creating that checklist of everything that’s so important, breaking down the day into all the little things that… 

that you require support for. I think a really good advice I got from SMA UK was kind of creating like a care diary. So even things that you may have a look like, take a drink of water, scratching my head, something like that where I need support from writing all those things down because it really add up and kind of paint a picture of what full package of care looks like. And I think probably there are sort of circumstances where even if you do all of this, 

you may still not get the assessment that you need and kind of the care support that you need. And I guess it’s also kind of a recommendation to kind of have that kind of tenacity to kind of keep going at it. I mean, it won’t be kind of a quick process. This is going on for about, yeah, about year and a half. I don’t really feel that much closer to the end, but I’ve formally complained through the council’s processes. That didn’t lead to a solution. I’ve now gone to the social care ombudsman. 

  

to challenge the decision as well. really kind of not just having to kind of accept what is what they think is necessary. I think everyone knows their own needs well enough and everyone knows what’s going to be sufficient to make their to kind of have the right impact on their life. So if you feel that you’ve not got the right support, then it’s a case of saying that and going through the channels to ensure that you can get that in place. 

  

100 % agree. Thank you. Lauren, any final bits you want to say? 

  

Yeah, I think I recognise a lot of Jack’s points. I think social workers do seem to struggle with SMA as a condition because as Jack said, it is quite a complex medical one, but also a lot of us are working or at uni or we have quite active social lives and that seems to almost cause a bit of confusion for social workers. They don’t quite know how to deal with that. 

  

I have found recently I’ve had quite a few of apprentice social workers come in shadowing on my assessments and actually they seem a bit a glimmer of hope actually in the kind of young people I’m meeting that are training that actually seem to kind of recognise that independence a bit better than kind of the people who been doing this job for absolutely decades. Like, yeah, I’ve seen a glimmer of hope there. But I think for me, I think 

  

The recruitment of PAs is kind of the key thing I would say that I think I’ve kind of learned over the years that actually it’s not about kind of who they are, what their training is, it’s kind of almost the vibe you get from them and also just like I just learned to trust my gut but actually I’ve interviewed people and thought got on paper, they’re so good actually they’re something that just hasn’t clicked and I think for me it is just like learning that. 

  

of skill is really really vital but actually who yeah who you recruit is kind of really key to enabling your kind of independence and how well things go and I think kind of relying as well kind of building that kind of a backup network so a lot of my PAs that have kind of left do other things will still kind of do cover weeks for me so think that’s really key to kind of keep those relationships kind of going. 

but also I’ve kind of found in my local area kind of people that kind of work for kind of care agencies that are maybe looking to pick up kind of pad hoc shifts if needed and actually that’s been actually quite life-changing for me so when a PA kind of is sick or you know has booked holiday I then not have to rely on my husband to kind of not be able to go into work I can be like oh it’s okay like I know like at least three people around my local area that will step in maybe 

it might be like one gets me up in the morning, one pops over to do my lunch, but actually, you know, it’s enabled me to keep my independence and not have to rely too much on my husband, which I think is really, really vital. And yeah, think just, I think yeah, social care at the moment is, it’s such a tricky one to navigate, but hopefully there’ll be some positive changes coming over the next few years. 

  

Brilliant, thank you. think this is a topic we could probably talk about forever. I’ll wrap it up there, but thank you both so much for joining us today and for sharing your expertise and your personal experiences. It’s been really lovely to chat to you both.