John's story of social care and hope for change

My mum died uh in 2018. Uh, just before her ninety-third birthday. Um, and mum and dad have been married for 65 years, um, and Dad was quite lost in many ways, um, not physically, obviously, but emotionally, uh, which she's quite understandable. Um, they had quite a traditional marriage and

Of its time and mum did all the cooking and the cleaning and we thought, Dad's going to struggle to cope. Um, and we wanted to avoid, if at all possible, the need for him to go into a care home, because you hear all these stories about people going downhill really quickly in a care home or them, then they're not very nice places. Um, so, I'm one of 3 brothers, and, uh, we all live fairly local

To that, so one of my brothers moved in with him. And myself and my other brother spent time there as well and stayed overnight to give my brother Tim a bit of a break, etc. etc

and to see Dad obviously. um, and it it fared pretty well, but he, he started, started having a few falls. Didn't hurt himself, but he did end up in A&E a few times, and the last time it happened, um, in 2022

Again, he didn't hurt himself, but it, it was really confused. He, Tim found him on the floor in his bedroom, and he didn't know how long he'd been there and um. So we called um

111, spoke to them, they said, yeah, I think we need to get an ambulance. He ended up in A&E and to cut a long story short. The, between us, we agreed that it needed to be in a professional care environment, the medical advice was such

We spoke to social services like social care, they said the same. So, although we tried to avoid it, um. We felt it was better for Dad, er, for his, his comfort and safety

So he was admitted straight from A&E to a, to a care home, a place was found for him, um, and he went straight, I say, straight to the care home from from A&E. It turned out to be the best thing for him. He absolutely thrived there

The staff were wonderful, um, Elton Court in Lincoln, you know, big shout out to them because it was a wonderful place, uh, and. Um It was a relief for the rest of us. And it was great to see Dad really getting on well there

Now, he, he had some cash savings. And he owned his own property. Which we've decided to put on the market as well at the same time we realised it, it, it wouldn't be going home again

So we put it on the market. So it meant he was self funding his care, you know, which is fine, uh, that's how it is, uh, but his cash savings weren't huge. And it was a case of, um, when

I looked on Lincolshire County Council's adult care website just to see what help was available and support, uh, financial and otherwise, uh, which it said that when your capital is down to about 30,000. You should contact us and we'll send you out a financial assessment form to complete. So that uh as and when his capital gets down to the two limits that are set out in the Care Act

Uh, we've got everything in place so that we can step in, pay his care fees for him, and then you pay us back when the house is sold. So I thought fine. So they sent that out and in August 2022, I submitted that to, to social care

Um Now his savings were going down pretty quickly because the care home fees were, you know, 4 figures a week and so it, it quickly depleted, uh. But I thought, well, fair enough, um, it then got down to the. What the CO Act sets out is the upper capital limit, which I think is 22,250 pounds

And I still haven't got an outcome from the financial assessment, um, despite a lot of chasing. Uh, the capital then disappeared down to the lower savings limit, which is 14,000 and something. Still no outcome, still no support

Still no contact. So in desperation, I spoke to a social worker. Uh, who had been allocated to him and told her that, you know, that this money would be gone in a matter of less than 2 months

And uh she thankfully arranged for Linshire County Council to take over payments directly to the home under what the intention was to set up what they call a deferred deferred payment agreement, I think it is, whereby it's a bit like a they lend you the money against the value of the house, so you pay it back when the house is sold. Uh, by this time, his, his cash savings were down to below 8000 pounds. And to illustrate the reality of that and what it meant to me

It was, it was over the winter period, and his boiler broke down in his empty property. And so I called the plumber out. And He thought at first it may need a new boiler, which would cost thousands

And I thought, oh no, you know, what's gonna happen, um, and. Uh, thankfully I only needed a new pump and a new fan and it only cost £650 but that was the sort of thing that I was trying to contend with. Dad was all blissfully blissfully unaware of this, which I kept him completely out of it because he would just have a, a worried sick

Um But I found throughout the whole experience of dealing with adult social care, the staff are dealt with. We're fine, they were perfectly nice. But the wheels moved so slowly

Left hand didn't know what the right hand was doing, and I found it really stressful. Dad sadly passed away almost exactly 1 year ago, and at that time, nearly 2 years after I'd submitted the financial assessment form, we still did not know the outcome of it. which is, which is appalling, it really is appalling, disgraceful

Um, having said that, I must admit I had stopped chasing adult care. Once, once they started uh making the payments directly to their homes, and nothing was coming out of dad's money. And so it wasn't depleting

I made the conscious decision to stop chasing them for, for my own sake cos it was just stressing me out. But I heard nothing, month after month, I was keeping a note of what was happening and when, and month by month I was putting, heard nothing, no outcome, and so. It, it was very stressful, um

And eventually, after he passed away, we did all get it, get it sorted out, but um. It was not good, and I, I must admit I felt sorry for the staff involved in it, because they seem to be very stressed themselves, understandably. We know how busy things like this are, there's big backlogs

And there were various things that I concluded needed to be better. The timescales. I, because I, this was all new to us when dad went into their home

I looked at the, the website to determine, you know, what to do and when to do it and how to do it. And a lot in quite a few cases, it mentioned how long certain things might take in some of the communication I got from adult social care. It said that this could take up to 2 weeks

Not one of the timescales they committed to was met. They all turned out to be wildly inaccurate. And all it did was build up my expectations and result in me having to ring them up or email them saying what's happening

Uh, which then added to the phone calls they were having to field when you'd like to think they would be able to get on with doing what you're asking them to do in the first place. So, um, yeah, it was, it was quite stressful. I say, communication was, was shocking

Again, a sign that they were, they were very, very busy, but better communication, I think, would have made it better for everyone. And so I knew a bit about bureaucracy, I knew a bit about in my career I dealt with a lot of paperwork, forms and, and comfortable and dealing with policies and strategies, etc. So I was OK with what I needed to do, it was what then didn't happen as a result that I found so stressful and frustrating, um

And I think I, I know staff don't tend to go to work to do a bad job, so I wasn't blaming them necessarily, but um, yeah, it was, it was, it was quite stressful and. Yes, I, I've been used in my career to dealing with things like this. What about people who don't have my experience or different life experiences? How do they cope? Um, you know, it, it, it made me think this is, this is really not, not good

I had several conversations with staff in social care, and I gave them my feedback. I didn't register a complaint in inverted commas, I just felt they needed to know. Uh, because one thing I think that was sadly lacking from, The whole process was management

No one seemed to be looking at the big picture, looking at the case loads, looking at the backlogs. If they had. They should and could have done something about it, uh, for the sake of the the customers, me, people like me, and, and for the staff

They said that various things were in train, uh, that they were trying to improve. They they knew it was a difficult situation, they were very apologetic. But I, I, I was unconvinced as to, you know, cos they were dealing with such a big issue

I then got to know, uh, nearly 2 years ago about, uh, something that was going on, some work between Lincolshire County Council, Adult Care, the NHS, various third sector and voluntary organisations to look at. How the health and wellbeing service is provided in general terms to the public. And they were looking at trying to build a better relationship between the health and care system and the public

And they were looking for people with what they were calling lived experience. So I thought, I, I've got some of that. So I thought I would, uh, volunteer to become involved

And but I'm still involved. The work that is going on is so important, and it's so good, and it's been fairly well accepted. There is good news, there's light at the end of the tunnel, but it's going to be a long tunnel because we're dealing with situations that will probably take up years and years and years to, to put right, but, you know, small steps

I think often people forget the personal impact that these things have on people like me. I've mentioned the stress about the dad's money running out, etc. etc

I've mentioned the fact that there didn't seem to be a great deal of support offered. A lot of what I found out I had to find out online. Uh, they sent me a copy of the policy with the financial assessment form

But it was pages and pages and pages. It wasn't exactly an interesting read. And as I say, that's for someone who's perhaps used to, has been used to dealing with fairly dry documents

But a review is taking place of the, of the strategy and the policy. A review is taking place of the leaflets that are available. That again, is a promising sign

There is some proactive work going on. Uh, they're looking at some of the processes as well because I, I. When I submitted the financial assessment form

Understandably, you need to supply lots of evidence for the dad's income and his savings and etc. etc. And rather than printing off literally dozens of pages of bank statements and utility bills, home fees, uh, bills, invoices and what have you, I thought, well I'll, I'll attach them all to a, to an email, which I did

I think it then took them 3 months to get back to me to say we can't accept some of the file formats, you can't, we can't accept bank statements in a CSV format. Which is OK, but that is the, the format in which I download, you download them from the web, the online banking that they'll have. So um I think they need to look at at at that process

Perhaps to bring them up to date with some of the, the, the modern day practises. So, but that is, I gather, being looked at as well. Things that went well, the people I dealt with in adult care were, were perfectly nice people, and as I said, I felt, I felt quite sorry for them, and the care home was a great place

Dad, dad's experience in A&E that the last time he went in. Uh, we arrived at something like midnight on a Friday night, which is not the time you want to be arriving, uh, at A&E, and he was there for 18 hours. But given that fact, the staff there were, were, were, were really good

This work that that I'm helping with is something called our shared agreement, and the passion I'm seeing from everyone involved to move things on and to improve things, for everyone's sake, is really encouraging, and that's why two years later, I'm still there. Uh, that's why I'm saying because it's really, really important work. I think the fact that also

They are so welcoming of people like me with lived experience. It's not a, it wasn't a tick box consultation that they wanted to do at the outset to make sure people thought they were on the right track. We're physically involved in meetings and workshops and reviewing documents, working with the professionals

So that's really encouraging, and it's been well received at a senior level as well within NHS and adult care. Uh, so that is encouraging as an approach involving people with lived experience in co-producing pieces of work. It's so powerful, I didn't really know much about it before I got involved, but I'm now absolutely convinced that it's the way forward

If, if organisations are serious about improving the way things are done. Talk to people who have lived through it. There'll be good bits, there'll be bad bits, you can learn from both

Uh, so I think as long as it translates into action, because organisations will ultimate ultimately be judged on their action and results as opposed to what they, how they might have reworded a strategy or a policy or a leaflet, but it's all part of the, part of the journey. So interesting times, but does achieved the age of 98. So a really good innings, he was happy in the home

He was really well looked after by the fantastic staff, and he was unaware of some of the hassle I was having to deal with, thankfully, and that is obviously the most important part, so I've got a lot to be thankful for..