GUEST BLOG: Karen Dutton of Let's Talk Bereavement

Karen Dutton is the Project Lead for Let’s Talk Bereavement, a two-year project to build bereavement support capacity in North Cumbria. It started out as a focused project to design and deliver training in core bereavement support skills and has evolved in its first year to cover several more targeted areas, including support for those bereaved by suicide. As she reaches halfway in her role, Karen is now looking at how to ensure that the support continues and grows beyond the end of the programme in February 2024.

This halfway point seemed the ideal time to talk to Karen about Let’s Talk Bereavement.

Karen Dutton during an online session

What was your role before Let’s Talk Bereavement?

I’m a registered nurse (RGN) and I started my nursing career working in palliative care. Before this role, I’ve been supporting learning and development in the NHS and I’ve worked as a University Lecturer. I knew that bereavement support services in Cumbria had really struggled during the pandemic and I was aware of a Cumbria-wide partnership of various organisations that was trying to find a way of increasing capacity in the future.

How did you get involved?

That partnership group put in a bid for project funding to NHS Charities Together and was given money to create a Project Lead role and to support a project for two years, starting in February 2022. I applied for the job, was successful and was set the challenge of designing and delivering a training programme to those working and volunteering in North Cumbria under the banner of Let’s Talk Bereavement.

The challenge was to deliver 100 online core bereavement support skills workshops and 50 more targeted training sessions.

Who else is involved?

The original partners continue to shape the programme with Hospice at Home West Cumbria, Child Bereavement UK, CLIC (part of the NHS Integrated Care Board) and Samaritans West Cumbria all involved as well as Public Health Leads from Copeland and Allerdale and people like John and Emily at SBS and the teams at CVS Cumbria and Every Life Matters (ELM) contributing too. The Professional Lead within the NHS is Deb Lee whose been a great advocate for what we’re doing too.

The success so far has been very much down to Cumbria’s strong networks and tradition of community action. I can’t quite believe what we’ve been able to deliver already and how ideas from other people are shaping what we do next.

What has been done so far?

Over 400 people have been trained so far, mostly in the core skills workshops online but we’ve gradually introduced a few more targeted sessions. We called them targeted rather than specialist sessions as people thought "specialist" meant they were only for healthcare professionals. Most participants are working or volunteering in caring roles and, after a trial early on, most sessions are organised for during the working day. We got a poor response to evening workshops at first but are reviewing this at present.

The targeted workshops include some for those supporting grieving children and some for those supporting people who’ve been bereaved by suicide. We’re getting interest in the first of these from teachers so we plan to move some of these sessions to after the school day. Working with ELM, we’ve run just one focused on those bereaved by suicide with a second planned for February but if demand is high, we’re expecting to have to run at least one more in the coming months.

look out for this image on social media too

What’s involved in doing a workshop?

People enrol online – the forthcoming workshops are all listed online here – and the workshops are free to those living, working or volunteering in North Cumbria. Each one lasts about 90 minutes, depending on the amount of discussion in the group of eight or so people.

I tried holding online sessions for larger numbers, but eight seemed to work better.  Some teams have contacted me and requested in-person training, which is another option.  For the in-person sessions, the groups can be larger as group dynamics and facilitation are different.

In the workshop, we cover the basics of understanding grief and bereavement and tackling our typical wariness of getting involved or being intrusive. There’s then a huge emphasis on how grief is different for everyone, it can change and evolve over a much longer time than most people realise, and the biggest help someone can offer is to listen.

Feedback at the end of each session and through the more formal CLIC evaluation has really helped to shape the session and ensure that it meets the needs of those who attend. Similarly, feedback from reference groups is useful and provides different perspectives. For instance, I was reminded that unpaid carers are rarely able to have 1.5 hours free to attend training and that it would be useful when designing a session to consider how it could be delivered in bite size chunks if needed.

What has been a real eye opener is the number of people who have attended the training as part of their work or volunteer role, but then have kindly shared their personal experiences to support the learning for others.  Some have also said they’ve found the core skills sessions reassuring as they had been made to feel they were grieving wrong in the past.

Those core workshops seem to fit the initial project proposal but are there other things happening too?

Absolutely – Yes.  As awareness has grown, we’ve had suggestions and requests from all sorts of groups. Staff from a wide range of employers and groups such as Sellafield Ltd, local solicitors, schools, carer support, NHS and local government and even a community pharmacy are interested. We’ve delivered sessions to befriending groups and we’re in discussions about running face-to-face workshops with Hospice at Home for non-clinical staff and volunteers, at doctors’ surgeries, in libraries and for unpaid carers.

I also hold monthly drop-in sessions where people who’ve completed the workshop can follow up with additional questions, any concerns or share experiences and ideas that can help support the project.

It's been brilliant to see how requests and ideas have shaped things and I’ve really appreciated the support from our networks that’s enabled me to deliver the core programme and meet the funder’s original requirements while also developing and doing so much more.

A poster devised and created to promote the Project and the availability of training

What about the rest of Cumbria?

We’ve managed to offer the free training opportunities to those working or volunteering outside North Cumbria, in particular South Cumbria by ensuring that anyone applying from this area is put on our waiting lists and can take places that come free at the last minute.

What’s next? What plans do you have for the second year of Let’s Talk Bereavement?

It’s exciting because there’s a lot more to do and, in parallel,  we’re also getting really positive feedback about the value of the core workshops. The key thing is to give time to things that will extend well beyond my role while also meeting those initial targets!

Top of my list is to try and build on the interest and discussions during December's Grief Awareness week around establishing local Grief Cafés.  There is a clear need for low-level bereavement support in our communities. If we can get these established over the next year, it will help people have a place to go to socialise with people who understand.  Several groups and organisations have expressed an interest so it will be good to explore some of their ideas and move this forward.

We are also planning to develop a programme of Train the Trainer sessions. These will be crucial to equip people to deliver the workshops in future and to enable this sort of support to continue after February 2024 when my role and the project finishes.

I’ve been asked to look at supporting people through feelings that are generally called anticipatory grief – that’s where people are coping with a feeling of bereavement before a loved one dies. This might be in palliative, cancer diagnosis and dementia care situations or in other much more diverse situations that we’re beginning to consider. I’ve gathered a reference group of people to scope out what’s possible and then to create something useful.

We hope to be able to influence the end of life care agenda and to ensure that bereavement support is included in the planning and funding of local services. Through the Cumbria Bereavement Support Partnership, which includes colleagues in public health, we are trying to see how we can best ensure adequate funding for referral routes and bereavement support in future, to support long-term health and wellbeing.

Is there one thing that people reading this could do to help?

Yes – I am on a bit of mission with this one.

The Good Grief Trust, which organises Grief Awareness Week in December, has an online resource of “all the support services” that are available around the country and it can be searched by type of bereavement, by county and by postcode. Not all organisations are aware of this but I’d really encourage anyone not listed to send in their details via the links at https://www.thegoodgrieftrust.org/find-support/  so that there is at least one place where someone in Cumbria in years to come could find out about all the help, advice and support they might need.

Anything else that you’d like to say?

The main thing for me is to thank everyone who has worked with me over the past year and to encourage them to continue to do so in the year ahead. Let’s Talk Bereavement is only working so well in Cumbria because of the networking, contributions and involvement of so many people and organisations – I might be the hub of it all but it’s needed everyone’s support to make things happen.

You can find out more about Let’s Talk Bereavement on the CLIC website https://www.theclic.org.uk/improve/lets-talk-bereavement/

and you can contact Karen via karen.dutton12@nhs.net.

There is also an active Twitter feed @TalkBereavement.