In 2022, as part of the EU funded InAdvance project, we ran a programme called Living Well with a team of consultants, nurses, physiotherapists and other professionals to deliver an education programme for older people who were receiving palliative care at home for complex conditions.
The ECHO team got involved in this project because the format was similar to ECHO where there was a short education slot in each session, delivered by a health professional or other specialist. Patients could ask questions about their own health, talk about complex situations and gain peer support within an informal environment. The format was very similar to ECHO and everyone was a teacher and everyone was a learner. As our lead consultant has said many times to social care staff, "doctors and nurses are experts in treating people, but we're not experts in what it's like to be awake and alone at two in the morning supporting someone." This sentiment also applies to unpaid and informal carers.
“ I really appreciated that this doctor who was obviously an expert treated me as an equal and not talked down to”- patient taking part in Living Well
Examples of topics were things like:
- Breathlessness and how to manage it at home.
- What is heart failure?
- Power of Attorney
- Financial issues
- Simple arm chair but effective exercise
An interesting thing we learned was that the group all agreed that it would have been good for something to have been delivered for their families and carers. Much later, we spoke to the manager of the day care centre where we are going to trial this and they agreed that there is a need for carers to have easy access to supports which are right for them and take account of their caring commitments too.
With the knowledge we have from delivering ECHO and the learning we gained in working with patients and carers through Living Well, we will be working with a Highland day centre to pilot ECHO for Informal Carers.
We also collaborate with Scottish Care in lots of activities including ECHO. Scottish Care have carried out a very meaningful piece of work in providing 'care technologists' to support families and patients to use technology to improve symptom management at home. We will use their learning to make sure we have all the bases covered to support carers to take part in ECHO while using Near Me groups platform to make taking part as easy as possible.
We are excited about this but more importantly, we are ready to work hard to reach known carers and the hidden people, shouldering huge responsibility for a loved one or friend.
More information to come!