Macmillan Cancer Support launches Lothians Link Worker programme

“If you have any kind of cancer, just get in touch; it helps give you peace of mind. I just hope people take the opportunity” – Phyllis

Today is very exciting for those who care about and support cancer patients throughout the Lothians, because it has seen the launch of the Improving the Cancer Journey (ICJ) programme.

This is an NHS Lothian programme funded by Macmillan Cancer Support, and provides special Link Workers for all those diagnosed by NHS Lothian with cancer.

The Link Workers have been in their roles for a few months now, but it is hoped this official launch will encourage more patients – and their families – to get in touch and use the service.

The Link Workers help patients (and their families) access a wide range of support, from benefits advice and emotional support to help at home or with other practical needs.

The launch event was held this morning at the Thistle Foundation in Edinburgh, hosted by Sandra Bagnall, ICJ programme manager.?

Calum Campbell, NHS Lothian chief executive, said: “Most of us at some point will be touched by cancer; taking it to a Lothian level, it’s about 4,800 people per year – or, to get very into it, 92 people per week.

“It’s quite a frightening statistic when you look at it. The most important point, though, is that we’ve got about 30,000 people in Lothian who are actually living with cancer – and that’s the point we really need to focus on today.

“Cancer is much more than a clinical diagnosis and people do need to live with it.

“We’re here today to talk about how we can provide practical support, financial support, emotional support at any point in the journey, from referral to well after the last clinical intervention, both for the individual, their family and their friends.

“Our offer is for every single person in the Lothians to be invited into this service and for them to have the opportunity to link with one of our Link Workers. That’s not just for the person who’s got cancer – that’s for their family and for anybody in a caring role that’s looking for support.

“The good thing about the Improving the Cancer Journey is we’re not the first – we’re following colleagues in Glasgow, Fife and Dundee, and I certainly look forward to hearing about the success of this initiative in Lothian.”

Morag Barrow, director of Midlothian Health & Social Care Partnership, chief officer of Midlothian Health & Social Care, and chair of the ICJ programme board, said: “If we think of cancer, we often think of hospitals, and we think of chemotherapy, we think of surgery.

“Good cancer care, though, is about high-quality clinical care but it is also a time of worry and uncertainty.

“Our ICJ teams are skilled practitioners who can listen well and build relationships.

“They understand their communities, they understand how they can help people to navigate the system, on their own terms, and at their own pace.

“So what does the ICJ offer? You feel able to have some control, with some coping mechanisms for the days that are really hard.

“They support you to make sure you’ve got money you’re entitled to; support you to be able to continue working, if that’s what you want to do; support you to make sure that your loved ones are okay and feel supported; and support carers, too, who need some time out.

“Whatever it is, the ICJ team is alongside you.

“The ICJ offers you a Link Worker as that single point of contact when life feels overwhelming.

“Our hopes for the next four years, and what I’m really excited about, is a focus on what matters to each individual. We want to recognise people’s own strengths, our own community assets, and working across services we can offer the right care, at the right place and at the right time.”

Janice Preston, head of Macmillan Scotland, said: “If you’ve already been diagnosed, you’re not going to get a letter dropped through your door at this point, but if you’re struggling, then do get in touch with the service.

“So, one in two people get cancer – the good news is that can be quite optimistic. The outcomes… there’s more and more people living with cancer. There’s a huge number of people going about their daily business with cancer.

“But that doesn’t get away from the fact that when you get a cancer diagnosis, everything can fall apart.?

“Even if you’re cured of your cancer, fewer people return to work after a cancer diagnosis than any other long-term condition, and that’s not about the physical illness; a lot of that is about the mental strain it puts on people, the speed of the illness and how it interrupts your life, the isolation you feel when you don’t have support and you can’t talk about it.

“And cancer isn’t fair. As optimistic as it might feel for some, for others there’s not that life expectancy and what they need is good palliative care, good planning ahead, want to talk about it and often don’t know how to start.

“I think we’ve got a real opportunity to try and give a more optimistic outlook… that early connection to a service that can support you, understanding there’s things in local communities that are there to help, whether that’s dog walking, somebody to clean your windows… this is about all of those things that make a difference to you.

“My hope is that the ICJ will give people that optimism.?

“ICJ is a real co-ordination of support. For the person themselves it’s very, very simple. It’s a needs assessment that’s not 26 pages, you don’t need to fill in any forms; you just need to pick up the phone – or ask somebody else to pick up the phone.

“This is all about taking down barriers to accessing a service and just getting the help you need when you need it.”

The event ended with a video of Phyllis, a breast cancer patient first diagnosed in 2019 who has taken up the service. That’s her quote up top???????

She added: “[ICJ] cheered me up no end. Just having a blether… you get people to come and do your gardening! It’s fantastic.”

Please – if you or a loved one are struggling with a cancer diagnosis, need financial support, more info on your diagnosis, or just someone to chat to, *use the ICJ service*

To contact the East Lothian ICJ Link Worker and refer yourself, phone?07977 307286 or 07929 784315 or email [email protected]

#LothiansImprovingtheCancerJourney