Talking to carers about the end of life

Carers Hub Lambeth is a brilliant charity, aiming to improve the lives of carers and the people they support. For the past two years we’ve been lucky enough to partner with them through the Lambeth Advance Care Planning Consortium; a three year lottery-funded project to support residents to record their future treatment and care wishes.

Within this time, the consortium identified carers as a key group who would benefit from additional support to plan ahead for themselves. I recently spoke with James Holdcroft, who leads Carers Hub’s work, to chat about their story and the three pillars that proved vital for their work during the pandemic: peer support, flexibility and hybridity.

Reacting to lockdown

James told me about the difficulties they’ve traditionally faced when helping carers to find the time to fill out advance care plans for themselves.

The very nature of their caring responsibilities means that carers can’t be available for hours at a time to talk through what’s important to them, it could just never take priority.

He explained that before the pandemic they would provide carers with the materials needed to record their wishes, but every time they checked the carer had made very little progress.

I was supporting somebody to fill in their Advance Statement form, but it took me contacting them 15 times over the course of 9 months to get it completed.

These follow up calls took up valuable staff time, and what’s more, didn’t seem to be the encouragement people needed. But there had never been the opportunity to think about what changes could be made to improve things, never mind finding the time to actually implement them. But the pandemic changed everything, and for James and his team, in some ways for the better.

Peer support is the cornerstone of the approach

At the start of the pandemic Carers Hub quickly developed their digital support and brought together small groups of carers on Google Meets to talk through Advance Statements together, as it was proving difficult to engage them one-to-one online.

These monthly Advance Statement sessions proved invaluable social time for carers, in which they’d have introductory chats, icebreakers and simply a space to share experience. They were also able to provide peer support based on their own experiences of advance care planning and completing different forms in a way that the Carers Hub staff were unable to. One carer said they “don’t usually get time for themselves and this group is their chance to do that”.

James said they had thought that carers wanted the one-on-one guided tour, the hand on the arm, and the luxury car to their destination of an advance care plan. But what they actually wanted was the comfortable chatter at the back of the mini-bus with peers that understand and could relate to their day-to-day life. This was followed by some individual support at the end of the journey, having already done the chatting and the thinking.

Remote working improved accessibility

The pandemic also revealed the opportunities of virtual working for carers.

Whilst many people previously found commuting time consuming, costly and inconvenient to their daily routines, the pandemic introduced the possibility of remote working.

As we now find ourselves returning to some state of normalcy, Carers Hub are trialling a hybrid approach providing both Google Meets workshops and face-to-face meetings. James explains that this prevents carers from “feeling so isolated” and gives them the option of doing what is most comfortable for them.

Another benefit of providing remote support is that before the pandemic Carers Hub would usually only have contact with one person from perhaps a family of carers, but the new focus on video calling means family members can join from all different areas of the house, town and country! This hybrid approach makes the support Carers Hub offers more inclusive and accessible.

Partnerships help

But it wasn’t all smooth sailing riding the digital wave.

Carers Hub quickly realised when they moved online that it was far more difficult to talk someone through an Advance Statement form, without actually having it in front of them.

People often like to flip through a form to get a sense of it, before they start actually filling it in — this is really common and totally understandable!

Unfortunately the Carers Hub’s office wasn’t staffed in the pandemic, so there was a concern about how these forms could be posted out. But the answer lay with the consortium itself! Carers Hub put out a request for help within the consortium and Age UK Lambeth came to their aid, sending the documents straight to the people that needed them. James explains that “this teamwork is what is so great about being part of a consortium”. Working as a network in which partners can support, work and learn from each other.

Be patient with people

Finally, I asked James if he had any advice for organisations who find themselves struggling to adapt to post lockdown working.

He explained that this new hybrid way of working is completely new to everyone and you have to be prepared for some people to be slow to adjust. “We still send the wrong Google Meets codes for the wrong dates sometimes! We all still make mistakes”.

One thing that’s really helped them with remote working is constant communication and following up. He said the carers he supports have found reminder emails invaluable; as they are so busy they can often completely forget workshops they said they would attend.

So by being reflective and flexible, and putting peer support at the heart of the project, Carers Hub have shifted the service from a lonely luxury car for one, to an accessible and socially diverse ride along for all their carers.

I can’t help but feel there’s yet more great initiatives to come from Carers Hub, and we’re excited to be on the journey with them.

To find out more about the Lambeth Advance Care Planning Consortium contact Sara Lyon at Healthwatch Lambeth on 07943 986 256 or email Sara.Lyon@healthwatchlambeth.org.uk