After initial scoping discussions with our North Lanarkshire partners, people were recruited in different ways.
Practitioners trained to support people who live with heart failure
Our partners in North Lanarkshire Council approached the heart condition coordinator in the health service and local third sector organisations, these would be partners when health and social care integration was implemented locally. Each of these organisations then invited staff to take part, who had an interest in learning about person-centred care and coproductive processes in practice.
People who live with heart failure
We agreed with our partners that we wanted to work with people with mild heart failure, as we saw the opportunity to keep people well and prevent their condition from worsening. However, there were several challenges. People with mild heart failure:
- Often don’t have a diagnosis (People have said this is down to a general reluctance to diagnose heart failure, and delays in getting this diagnosis, especially in younger age groups where symptoms can be linked to, or masked by, other conditions which are explored first. Or people may simply be told that ‘their heart isn’t pumping properly’ – meaning some people are unaware of the trajectory or implications of this statement until their condition gets worse and they wind up in hospital).
- Don’t know what ‘mild’ or ‘stage 1 or 2’ heart failure is or means (a lesson for us about using medical terms of reference that don’t mean anything to others!)
- Are often managed by their GPs and are, therefore, not known to the health professionals signed up to Keeping it Personal (meaning we could not ask the professionals involved in the project to support our recruitment). Our heart failure nurse, for example, only worked with those who had been seen in hospital and received a diagnosis following an echocardiogram test.
To try and reach people with mild heart failure we contacted GPs and asked them to identify patients from their register who were under 65 with mild heart failure (class or stage 1 and 2), and their family members (or ‘carers’ when using service language). We tried a local poster campaign, included an article in the Motherwell Times, and asked the Chest, Heart and Stroke, British Heart Foundation and Cardiomyopathy Association to promote the opportunity via their newsletters, Facebook pages and Twitter. It was also promoted in a North Lanarkshire Council NHS staff bulletin. Disappointingly, none of these attempts resulted in the recruitment of participants.
As the first attempt failed, we revised our recruitment criteria for the second attempt and:
- Included people who are eligible for the support of a heart failure nurse but whose condition was considered stable and are on long review periods
- Stopped using the term ‘mild’ heart failure as it was agreed this was possibly confusing
- Opened up the selection criteria to include people from the wider Motherwell area
We also took a more personal approach and involved a heart failure nurse from North Lanarkshire (the wonderful Louise!) who wrote and spoke to people she worked with and who fitted these new criteria. We provided Louise with a one-page brief describing KiP and what people could expect by getting involved. This approach was much more successful. Louise recruited eight people with heart failure and some of those invited a person who cared for them to attend with them.
Andrea (Coronary Heart Disease and Respiratory Co-ordinator, NHS), Christopher (person with a heart failure), Gordon (carer/husband of Margaret), Ian (person with a heart failure), Irene/Alison (Chest, Heart and Stroke), Janette (Nurse Consultant for Long Term Conditions, NHS), Kathie (Senior Officer, North Lanarkshire Council), Louise B (Motherwell Locality Support Service, Disabilities), Louise G (Heart Failure Nurse, NHS), Margaret (person with heart failure) Maureen (Coronary Heart Disease and Respiratory Network Manager, NHS), Morven and Richard (Heart Co-ordinators, British Heart Foundation) Robert (person with heart failure).