Independent Living Coordination Service

We talk to Steve Chu, Chief Executive at Age UK Sheffield, about the Independent Living Coordination Service, a joint project between Age UK Sheffield and Weston Park Cancer Charity to support older people living with cancer.

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Ruby Osborn: Hello and welcome to the Weston Park Cancer Charity Podcast, bringing you stories about our work, what we do, and the people we support. From funding life-saving research to providing practical help and emotional support, it's our job to care in every sense for our patients and their families. I’m Ruby, and today we're talking about the Independent Living Coordination Service provided by Age UK Sheffield and funded by Weston Park Cancer Charity to support older people living with cancer.

Steve Chu: I'm Steve Chu, I'm Chief Executive of Age UK Sheffield. Our primary concern is helping older people to live independently at home for as long as possible, and there are a number of issues that impact upon that, but particularly as people develop health conditions in later life they need additional support. So it's a really person centred service, but we work with Weston Park Cancer Charity particularly to support people living with cancer to retain their independence.

Ruby: What difficulties can older people affected by cancer face?

Steve: To take a couple of examples, one is that they might experience financial issues, and that could be because they’re not able to carry on working so they lose their income, they need extra money to pay for transport to attend health appointments or just to keep in touch with their normal lives. Additionally they become potentially socially isolated because if they can't go to work and they’re struggling to leave the house they might not have access to friends, family members and social networks. And also if they are experiencing medical treatment they might not be able to get around the house as well, they might need adaptations to the home or help to bathe and wash adequately.

So there are a number of issues that people can experience and so we've had cases where people are receiving really excellent medical treatment from hospitals and from other health services, they may have had an operation. They come home and they find a mountain of paperwork through their letterbox, their grass is overgrown, they've got bills that are demanding payment for, and they literally don't have the energy to do all the things they need to do to keep that home up and running. So we provide that sort of social and economic support which hopefully goes hand in hand with the medical and health related support people are receiving.

We get hundreds of referrals every year from health professionals either in hospital or GPs, and also directly from people living with cancer themselves and their families, and they come to us with specific needs. What we’ll generally do is book an appointment to visit them in the home and we’ll sit down and we’ll give them time to her what we call a guided conversation, and we’ll probably spend two or three hours on that first appointment just listening to people articulate what their needs are, and prompting them around other things they may not have considered, like transport issues, like benefit income that often people don't know they’re entitled to. So we try to unpack all the issues that will really help a person to live more independently at home.

And then together we’ll co-produce with them an independence plan or an action plan so that we can help to address those needs that the people have identified, and then over a period of months we’ll help to deliver that plan, we’ll try to empower people to do what they can for themselves, maybe involve friends and family members, and then where we've got the expertise we’ll do that. So that hopefully at the end of our period of intervention of two, three or four months, all those needs that the person living with cancer has identified at the start will have been met, and they’re able to live much more independently on an ongoing basis.

We frequently have had people come to us in really difficult circumstances, unable to adequately put food on the table, maybe even unable to afford the bus fare to attend a medical appointment. And when we've looked into their circumstances and all the benefits that they are entitled to, partly because of their health condition, it's not uncommon for us to help people to get two hundred, two hundred and fifty pound a week extra income into their household through claiming benefits such as attendance allowance, pension credit, council tax support. And so if you add that up that is or ten to twelve thousand pounds extra a year, that makes a massive life changing difference to people and their ability to live well with their health condition.

We've also had experiences for example where people for example are needing to use a wheelchair because of the chemotherapy treatment they’re receiving for cancer, but they're living with a step up to their front door and so because they're living in a wheelchair, either temporarily or permanently, they’re literally unable to get out of their front door. And because we've got some networks into the council’s aids and adaptations team, we can really help them to fast track those essential works to enable them just to get out of the house and do the daily shopping, so it seems really basic stuff, and in some ways it is, but if you're not used to navigating those complex council systems or benefit systems it can feel to someone who's who newly living with cancer that they’re banging their head against a brick wall.

Ruby: Am I right that sometimes the service can help with being discharged from hospital more quickly?

Steve: Yeah that's right. Sometimes what we find is that, obviously people who are receiving treatment in hospital, they have excellent medical care from the doctors and nurses in hospital, and then they get to a situation where they’re medically ready for discharge. Attention then moves to, well, how can they live well at home? Are their houses adapted well enough? How can they get their food and medication to their house? Have they got the right friends and family support around them, to help them to live adequately at home, to wash et cetera. It’s at that point that the hospital discharge teams might think, ah there's a real problem here, you know, we can't discharge them from hospital because that social and family support isn't in place.

That is the point at which sometimes people do phone us and say what can you do to help, and we are able to quickly move to put that wrap around support in place to enable the discharge to take place. And it's even better actually when we had those conversations earlier, even at the point when someone has an appointment to be admitted to hospital, we can then start to put things in place to make sure adaptations are being carried out, that applications for the relevant benefits are being made, that the family and carers support is put in place, so they’re ready it as soon as they are medically fit for discharge rather than thinking about those things at the point of discharge, which could then cause a delay.

Ruby: Our two charities have been working together on this partnership since 2016, but 2020’s been a bit of a different year, for all of us, so can you tell us how the service has adapted to the pandemic?

Steve: When we had the initial lockdown at the end of March, obviously for a period of time we had to suspend face-to-face services, but also people living with cancer were forced to shield at home and were experiencing different independent living issues than they had faced. So what we did was, I mentioned earlier that we co-produce a needs assessment at the start of each of our periods working with people, what we did we telephoned everyone who was a live case and updated that needs assessment to take account of any coronavirus changes.

And we also stood up from scratch, we had never done it before, a food parcel delivery service, so it was an emergency food parcel delivery service for people who were shielding at home and we realised had no other way of getting food into the house, which delivered them a weekly essentials package. And then we also stood up our telephone befriending service, we recruited a load of new volunteers, to make sure that people weren't socially isolated.

And then from June onwards we really were really proactive in re-establishing face-to-face services as soon as we could, on a risk assessed basis, so only where it's appropriate to do so. So at every point through the last year we kept in touch with everyone we’re supporting and worked out how we could meet their immediate needs, also what support they would need from us on an ongoing basis, just to make sure that specific support could be provided to those coping with coronavirus restrictions.

Ruby: What are the benefits of this partnership between Age UK Sheffield and Weston Park Cancer Charity?

Steve: I think it’s a really amazing and innovative partnership between two local charities that are working together and not in competition with each other. Clearly from a Weston Park Cancer Charity perspective there is a real priority in the health and wellbeing of people living with cancer in Sheffield, and I know the trustees have been really supportive of the relationship that has developed between our two charities and our ability to deliver the objects of the cancer charity. From our point of view, as I said we get hundreds of referrals every year from people living with cancer in Sheffield. We are primarily a service provider and not a fundraising charity, and having the grant from Weston Park Cancer Charity really enables us to give dedicated support to those people living with cancer, it gives us the resources we need to deliver the needs of those hundreds of people. From our perspective and hopefully from Weston Park Cancer Charity’s perspective it’s a really great partnership which hopefully can continue,

Ruby: What would happen if Weston Park Cancer Charity didn’t fund this service?

Steve: The people who we support who are living with cancer just wouldn't have that sort of service available to support them. The funding from Weston Park Cancer Charity is invaluable to really help us provide the dedicated support that people living with cancer need. We definitely think that if you're not able to pay your bills or put food on the table or have social and emotional family support wrapped around you while you are experiencing a health condition, then you're not in the best possible place to recover from the illness that you're experiencing. So I think the likely position would be that hundreds of people in Sheffield would be living in poorer health with cancer, because they're not having their wider needs met which would enable them to focus on trying to live well with cancer.

Ruby: Can you tell us a bit more about who can benefit from this service and how people can access?

Steve: Primarily our work is targeted at people aged 50 and over who are living with cancer in the Sheffield City Council area. We do also provide family support, so if the person who really needs support is the carer of someone living with cancer, then we will support that person as well. And also the 50 age range is only a guide so if someone was 48 or 49 but really need our services, or perhaps the primary carer of an older person living with cancer is 30 years old but is struggling because of the support they’re providing to the older person, then we would support those people as well.

And to access the service they just phone us on Sheffield 250 2850, or they can email enquiries@ageuksheffield.org.uk. We will get them into the service that they need. Also a referral can be made to us by a GP or a health professional and we’ll help in exactly the same way.

Ruby: Thank you for listening to this episode of the Weston Park Cancer Charity podcast. We're going to end by hearing from someone who has been supported by the Independent Living Coordination Service.

Harold Simmons: Hello, my name’s Harold Simmons. COPD, I caught it many years ago when I used to be working behind the bars in night clubs, and I got COPD from smoke inhaling. And over the years it stops you walking about. And then 18 month ago I was having a bad cough, my lung collapsed. I've also been diagnosed with prostate cancer but it's only in the early stages at the moment. I’ve got to go and fetch some tablets to take those for a few weeks to see how things progress. If it gets any worse I will have to have an operation on it, so got to keep my fingers crossed that everything goes alright.

More or less I wanted a ramp for my scooter, and nobody else would do it, say they wanted a lot of money to put me a ramp in. Everything was “oh, wait a bit, we’ll do it in a bit.” I were nearly 12 month waiting.

It was the doctors that put me in touch with Age UK. Within a few weeks I got a ramp, and this nice young lady came up to see me, and she put in for, they did me an allowance so I can get out and things like that. Then they put me in touch with my doctors and optician, they’ve been fantastic with me. But before nobody seemed to be bothered. And Age UK came up and within, I think it was three weeks, I’d got my ramp up and running, and I can’t thank them enough. To get people so that they can go out or something like that, instead of sitting in 

House all alone on their own, because the young ladies that come up and see me, they’ll sit and talk to you as well, and have a laugh with you.

I couldn’t have done a lot of things what I’m doing now without Age UK, and it’s absolutely brilliant. I’d recommend them to anybody. What you’ve done for me is unbelievable, the amount of work that you’ve done, and if you can do that for any other people, I would love it, be marvellous.

Dean Andrews: Cancer changes everything, but so can we.